The Last Camino

December 18, 2014

On November 24, I stopped publishing my writings on my mom’s last camino. I have a number of theories about why that is, but one must surely be that I simply had nothing new to say, nor the same need or desire to say it. My mother’s decline simply went on and on, longer than any of us expected. It was inevitable that I’d adapt to the unfortunate situation just as we humans quickly adapt to (and take for granted) the good things in life. I could see that death was not as imminent as I had feared. That had made me feel a certain desperation in the first weeks, but I couldn’t sustain that intensity for so long. Maybe I had compassion fatigue.

Another theory is that my depression had lifted, and I began both to work more on my medical diagnostic startup and to have less desire, or need, to capture everything, to feel heard. I was not especially sad in the morning, nor did I walk through the outside world like a duckling who’d lost its mother. Why did my depression lift? I have read a lot of research on the power of cultivating positive emotion, how, in the words of Dr. Barbara Fredrickson, positivity broadens our cognition and creativity while building our resilience and immunity. For almost seven weeks now I have shown and felt more love and compassion and gratitude than for any similar period of time in my life. That may have lifted me in spite of myself.

Catching Up

Here is where we left off last month, ending with the latest as of Friday evening, December 19, 2014.

November 25, 2014

I don’t even know where I am.

You’re in your bed, Mom, in your living room, in your house.

You keep saying that.

* * *

Pain in my tummy, she says, crying.

I press the bolus button. I’m sorry, I say. It’s not your fault.

What if I partied too hard? she says. And got drunk all the time and –

You didn’t do any of that, Mom. You lived a good, honest life. You were a hard worker, you cared about people, you were always thoughtful and giving.

Then why doesn’t anybody visit me? she says.

I remind her that she’s constantly got visitors, and she can’t name anyone she wants to visit her who hasn’t.

* * *

She is tetchy. Tells me I speak to her very disrespectfully, then that I have an offensive tone. “I think you are mistaken,” I say. “That’s your opinion,” she says. She is peevish that I can’t hear her in the kitchen. She leans over with her big coffee mug full of coffee and I think she’s trying to set it on the floor. I reach out for it and she withdraws it quickly and gives me a stare I can’t figure out.

Later, she is frustrated with her nausea. “I wish I could just go away,” she says.

“Come here,” she says later, motioning me to come closer. I go to the bedside and she holds up her arms. I lean down to hug her and she says, with tears, “I’m sorry I’ve been so unbearable.” I tell her she’s not at all, and that no one thinks that. Regarding her inability to eat most food, she also apologized for being a “prima donna”. Again I told her that it wasn’t her fault and no one thought of her that way. We all loved her.

“I want to go home,” she says.

Hospice must not have seen their first How to Die book lying around, so they had brought another one. It says that with 1 to 2 weeks to live, a person uses “symbolic language” of “going home”.

“You want to go home?”

“Yes.”

I consider this. “Where is home?”

“Someplace not here,” she said.

* * *

I’m still not depressed. I trust this is a temporary state of affairs, but I’m curious about why. A kind of fatigue or numbness? Shock? Not denial, certainly. Since Peggie called me weeks ago I have had no hope. But I don’t go about my day in quite the same hopelessness and sadness. I can become sad very quickly – if I think about Mom’s psychological suffering, or what my life will be like afterward, or even something I’ve written down. The tell-tale humidity enters my nose, the lump that Mom calls Timothy lodges in my throat, and if I want not to cry I have to stop thinking about whatever I was thinking about.

* * *

November 26, 2014

We were up at about 2:30a.m. Mom went to the bathroom and took a milligram of Ativan. She was up again at about 8a.m. and asked for her coffee. As she drank it I asked her to take some more Ativan.

“What’s it for?” she asked.

“It helps you not to be nauseated,” I said.

“I don’t like not knowing what I’m taking.”

“You’ve taken it every few hours for over four weeks.”

“I want to see a piece of paper,” she said, and mimed words going across a piece of paper, “that says what it’s for.”

We went around on this for quite a while. It would be almost an hour before she agreed to take the Ativan. We’re lucky she didn’t vomit after drinking her coffee.

* * *

She seems to have awakened with less short-term memory in place than ever before. “What are we going to do today?” “I’d like to go somewhere.” “I want to go outside and read.”

“It’s cold outside, Mom. The last two times we took you out in your wheelchair it was warmer than today and you got cold.”

“You can dress me and we’ll go outside.”

“You can’t walk, Mom.”

“I can’t?” She struggles to absorb this.

Each discovery like a new blow. I was reminded of Bill Murray’s character in “Groundhog Day”. Each day begins anew, exactly as the day before, except for the new choices he makes. But Murray’s character remembers the previous days, and so is able to learn. My mother awakens each day into a nightmare of unremembered incapacitation.

The hospice nurse Deb asked Mom what she thinks about “this process” – of dying – and Mom said, “I don’t even know what process is going on.”

* * *

She talks of travel with friends, and “an ocean of pumpernickel”.

* * *

After I have reminded her of the situation she is in, she says, “You’re so stoical and it’s my LIFE we’re talking about.”

* * *

She looks at her glass mosaic lamp. “I remember how EXCITED I was to get the lamp. Through the lamp came three colors: yellow, green, green, and emerald.”

“How did you show up in my life? I didn’t just show up and say hello are you my son? I would have never ever ever ever left you alone.”

* * *

“Do I have a clear thought?”

“Sometimes you do.”

She begins to cry.

* * *

Nurse Deb says, “Are you excited for what’s next?”

Uh-oh.

“No,” Mom says. “I don’t even know what’s next.”

“You don’t know where you’re going next?”

“My whole life was taken overnight, not to be replaced by anything I know,” Mom says.

“Do you know heaven?”

Mom shuts down. “I don’t want to have this discussion,” she says. “I’m not having this discussion. I’m sorry.”

* * *

“I just want to go home,” she says. “Just get it over with.”

* * *

For two and a half hours this morning, my mother was more morose and dejected than I have ever seen her. Not crying, but seemingly utterly defeated. Nurse Deb mentioned something about Mom’s condition and Mom simply stared at her for a long time. Deb would later say, “I can see you’re angry, Inge.” Mom didn’t answer. “And I can understand why,” Deb added.

Deb met Mom a number of years ago, when Mom taught a class on cooking and culinary arts at the Rocky Mountain Academy, a private school that’s now shuttered. “In a very short time,” she tells Mom, “you made a huge impact on my daughters’ lives.” Deb has tears in her eyes. “At the worst time of their lives, you were there for them. And my oldest daughter is who she is and is doing what she’s doing in large part because of you.” Her daughter, who had taken Mom’s cooking and manners classes, is a professional baker. “She especially loved the manners you taught around eating. I’m so grateful that I could come here and see you this morning, Inge. I admire you so much. You are such a strong, brave, creative woman. I wish I had an ounce of your creative juices.”

* * *

“Pumpkin?” she calls. Once again the dog has gone into her bedroom and jumped up on the bed, where he has always slept. I go and fetch the dog. Madeline had given him a bath for the occasion, so he’s pleasantly fluffy. I put him down on Mom’s lap and she smiles. She says to Pumpkin, “Tomorrow I’ll have to give you treats.”

“Do you want me to get some of his baloney from the fridge?”

“That would be nice,” she says. Her smile is like direct sunlight after darkness.

She’s getting to do at least this one thing that she used to do before. It’s a happy moment, if you can catch it, and I was lucky enough to be paying attention to what had just happened. I cultivated gratitude then and there. One day I will be happy I did – that I had a moment that felt happy at the time rather than just in retrospect. May there be more such moments for both of us before she goes.

* * *

So we just threw ourselves into the very expensive popcorn, she says.

* * *

Adam calls. Mom gives me a thumbs-up. Later she chuckles at something. Again I can’t believe I’m seeing my mother happy. I can barely hear her chuckle and it sounds very different, but she is clearly enjoying a moment in time.

She hasn’t fully surrendered yet. Maybe she just can’t remember to.

* * *

Shall I wake up my arm or wake up Big Ben?

* * *

9:42a.m. She’s asleep again. Though I will say that if one sound can bring her out of her sleep, it’s the awful-to-her sound of me cracking my knuckles.

In the early evenings, not long after sundown, she will fall asleep. I watch a movie or work on my laptop from the emerald couch to her left. Sometimes I go into the spare bedroom so as not to worry about waking her. At around 11 or midnight I throw Mom’s bedroom comforter onto the reddish couch to which I’ve added a foamy couch-width layer of some kind of substance brought by hospice. It fits the couch perfectly, and it’s a lot more comfortable. Some nights, like tonight, I hear her making sounds that might mean she’s distressed, but I’m not sure. I ask the question.

Are you having pain?

Tonight, just now, she says “yes” and nods her head. I find the bolus and press the button. She groans a few times over three or four minutes and then falls asleep. It occurs to me that I’m lying in one of three places where Mom spent a lot of her time, and certainly most of her time in the house: this end of this couch. Well, it’s no big deal. But that is the sort of story that might bring me to nostalgia after she’s gone.

I read things on the web for a while. I hear Mom whimper. I press the button.

I stay up too late to reliably get seven and a half hours of sleep. This morning, for example, during what I hoped was a brief interlude of wakefulness before we went back to sleep, she said she wanted coffee. It was 7:30a.m., and I’d gone to bed at a little before 2a.m. I’m doing the same thing tonight. I suppose, for the same reason Americans refuse to carpool: it’s just the only really private, and unworried, time I have.

* * *

Thanksgiving November 27, 2014

Another night of pain the base level of hydromorphone drip can’t handle. Several times I awoke to hear her and to press the button. She whimpered. “Just make it go away.”

We woke up at a magisterial 10:20a.m.

“Happy Thanksgiving, Mom.”

She brightens. “Happy Thanksgiving.” A pause. “I didn’t intend to forget about it.”

“I know you didn’t, Mom. It’s okay to forget.”

* * *

“Would you like some tea?” I ask.

Her smile was beatific.

* * *

“Can you tell me, in complete sentences, what is going to happen?”

“What is going to happen when, Mom?”

“Today. What are we going to do? Are we going to get dressed, go outside, see a movie, or the dolphins, or – I just want to know something.”

* * *

Are you a doctor? she asks, for the second time.

No, but I’m a lawyer.

You can’t help me.

No, but the doctors couldn’t either.

She chuckles.

* * *

It feels like you’re holding me here.

No, Mom.

I don’t know what to think. I’m trying to be kind. But I don’t know for what purpose.

* * *

She has mentioned two things that don’t seem to relate to one another. I ask her what one has to do with the other. I am calm.

“I thought I might find a friend in you,” she says, “but I guess not.”

She has been like this today. She’s a little paranoid, hears disrespect and offense in neutral or even loving statements.

Picking at her primal wound.

* * *

The TV reminds her of someone’s sister being buried above Meeker. It becomes exhausting to ask her to repeat herself, see her annoyance or discouragement, hear what she’s saying, realize it makes no sense, and try to think of what to say that will not upset her. Sometimes, whether I have heard or understood her, I say, “I think that’s exactly right.”

* * *

Madeline’s daughter Kelly has offered to stay overnight with Mom to give me a break. She dropped by this evening to pick up Pumpkin and bring some Thanksgiving food. Mom wasn’t interested in eating. Kelly, who had also taken cooking and manners classes from my mother, kneeled next to the bed and took Mom’s hand and told her, “I think about you every day. I love you so much.” Mom’s eyes welled up.

Later, Mom said, “I know everything is difficult for me.” I didn’t hear what she said. Kelly repeated it.

“I know, Mom. A lot of things are difficult. But you don’t have to do anything now. Just give yourself a break. Forgive yourself.”

She turned her head away from me.

* * *

She goes to sleep at around six. I hear her whimper and pause the movie I’m watching to listen. No more sound. I press the button just to be sure. Moments later, she reaches for it herself and I tell her I already got it.

In my Facebook feed, our friend Michele had brought back a photo from late September by liking it. I liked it too. As I did so, it hit me that I will be most sad when I revisit old memories – in videos, pictures, prose, her Facebook page, my own mind. I’m not doing it now. At least partly because it’s premature, but also for lack of time.

* * *

November 28, 2014

She needed six straight pumps of her medication last night. We eventually slept in till around 10a.m. She vomited up green bile, more than I thought she could have in her. When she vomits it comes out through her nose, too. She was nauseated several times lately, but without having eaten anything.

She has been sleeping for at least half an hour. I hear her stir slightly and she says, “I don’t want to die anymore.” She’s silent for a moment and then she says something else. I don’t recall it, but it doesn’t seem to be related.

I am less tearful now, in less pain, and even, one could say, less compassionate. Or maybe it’s just excessive pity I’m no longer feeling? I certainly couldn’t have kept up with the pace I set in the first two weeks.

* * *

“I just shot two lynxes,” Mom says. She’s been dreaming.

I’m tired of blogging, or just have no interest right now. When events and emotions were changing quickly, I wanted to write. Now that Mom’s changes are subtler and smaller, now that my emotions are higher and more stable, there’s not much that interests me. It’s just going to be a waiting thing.

* * *

“Do you want to sleep now?”

She nods. “There’s nothing else to do anyway.”

“Except talk or watch TV. Or we could look at the Camino pictures now if you want to.”

She shakes her head. “That part of my life is over,” she says.

I feel chilled. Is this just self-pity or is she really not able to appreciate it anymore?

* * *

Lilyhammer. Does it have to be pressed?

What?

Does it have to be pressed? she says. She pushes an imaginary button in front of her.  She doesn’t know what has to be pressed to get the show started, but she knows there’s pressing that needs to go on.

* * *

November 29, 2014

2a.m. I’ve been pressing her pain pump. She asks to go to the bathroom – and then she wants to read, bless her heart. Is she able to understand? Will her eyes work? She’s said she can’t read text on the TV any longer.

“I’m a very avid reader,” she says, as if she were explaining her hobbies and interests on a game show. “And an even greater writer.” She’d never said anything like this. “Some people may think it’s not that great but I like it.”

I go through a number of books to find one she agrees on. I guess correctly that she has not read Doris Kearns Goodwin’s No Ordinary Time. She was never a reader of history or biography. She says she started it once, and it was an excellent book, and she’d like to start it again. I pull it out and hand it to her. I turn on the light behind her. For a few minutes she flips through some pages, stopping occasionally because her eyes are closed.

* * *

The nurse who came late, at my request, to increase Mom’s demand dosage from .2ml to .3 ml, mentioned a drug that will help with Mom’s agitation. I don’t know where she heard that Mom was agitated, but I was happy to know we might be able to reduce her irritability and paranoia.

* * *

November 30, 2014

It was a nice visit with Damon and Jannilyn. I left at a little before noon because Bonnie was ending her shift with Mom at 1p.m. When Silke arrived at a little after 3p.m., Mom woke up.

And then she, and we, went through her prognosis all over again. And she cried, and she cried.

* * *

6:40p.m. Mom woke up and began crying again. She looked at my face and started crying. I hugged her head close to me and placed my cheek against her head. It’s so hard to watch her keening. Not as hard as it would have been a few weeks ago. I have detachment now. Chemical, maybe. I’m more like Adam, the least sentimental person I know: This is part of the process. It’s sad but not tragic. It’ll hit me later.

* * *

I ask her, “What’re you thinking?”

“Oh, son.” She lifts her hand to the level of her forehead and waves it in circles for several seconds. “I don’t have a coherent thought,” she says.

This happens again at about 1:30a.m. The lights are out and I’m on the couch, unable to fall asleep, needing to wait to press Mom’s pain pump in any event. Mom begins crying vigorously. “Mom,” I say. “Are you having a dream?” She nods. “Do you want to talk about it?”

“Oh, son,” she says, and turns away.

I feel shut out. She has refused to talk about anything of depth because, I suppose, depth is now equivalent to death.

* * *

“Do you want some water?” I say.

She looks at me. “What does it matter, really?”

I don’t have an answer. I have thought the same thing: why would we force food or water on her? It’s not like it’s going to heal her, or extend her life by weeks or months. If she drank more she might live a day or two longer.

“It’s up to you, Mom,” I say.

* * *

She would later explain that she had died and people were late to her funeral. This was what she’d been dreaming, apparently. But at first she didn’t understand it as a dream. She said it wasn’t, but I repeated that she had been dreaming and she didn’t resist it further.

When Silke was here earlier I told Mom the Teal Warrior sisters had asked me to let her know that she shouldn’t stay on their account, for fear of disappointing them. Mom also cried about Candy and me. Silke told her we were mature and could handle it.

* * *

“Bin ich krank?” Mom asks.  Am I sick?

Silke and I say yes.

“Mit was?”  With what?

“Krebs,” I say.  Cancer.

“How much quality time do I have?” she asks, in German.

“We don’t know for sure,” I say. “We know that people can survive for two weeks without food, on just water, but you’re not drinking much water either.”

Unless I see evidence of some greater acceptance that may have come from repeating this for the third or fourth time, I may not tell her about her situation again without a strong reason.

* * *

She puts her hand on my face. “From your first breath,” she says. She’s gazing at me with so much love.

* * *

“I wanted more time,” she says to Silke and me. “More time to accept.”

* * *

“What is the etiquette for this?” she says.

“There is none,” Silke says.

“I feel I’m making a mess of it.”

“Not at all, Mom.”

“I just want to pack my things and go home.”

* * *

“What do they say is wrong with me?”

* * *

“Where is Brianna?” She’s crying.

“She’s in Alabama.”

“Does she have a job?”

“She just got one, I think.”

“Who hasn’t visited at all?”

Of course the answer is, Most of the people on the planet have not visited. What does she want to know? “All of your friends have visited,” I say. “Some of them come almost every day.”

* * *

“Why don’t you go in the spare room and go to bed,” she says. “I don’t want to feel guilty because I can’t go to sleep.”

“Well, I’m concerned about you having pain and not remembering to press the button.”

“I’ll find it right here,” she says, pointing correctly. “I’m just going to read.”

“Okay. I need to pick out a book for you then.”

“I can just browse on my own,” she says.

“No, Mom, you can’t.”

“Why not?” she says, astounded by my answer.

“You can’t walk.”

“I can’t?” she says. She’s genuinely amazed. “Have we had this conversation before?”

* * *

December 1, 2014

Since about yesterday, she has become very weepy, she sometimes speaks to me in German, and her body and especially her hands shake with a kind of palsy. She drank only a small portion of her 6-ounce water bottle yesterday.

“Who is paying my finances?” she asked this morning. “The utilities, electric –“

“I am, Mom. There’s nothing to worry about.”

“I still need to know how much it is so I can pay you back.”

* * *

“I don’t even know where I’ve been the last few months.”

* * *

December 2, 2014

And today I wrote nothing.

I worry about getting used to this routine. I suppose over five weeks of this may have worn me out, caused me to begin to conserve energy, or sanity. Either way, it weighs on my mind.

* * *

Mom ate two small bowls of chicken noodle soup. I thought of one of the nurses yesterday, telling Mom, “You’re a tough woman, Inge.” I gathered the nurse thought she was hanging on longer than expected.

* * *

December 3, 2014

Every time I open my mouth I wonder if I can trust you.

Well, I’m the same trustworthy son you’ve always known.

That’s what you say, but there are trust issues.

* * *

“If you didn’t think I was your mother, I wouldn’t be worth anything.” Something like that. The syntax was a bit different, but I think this is what she meant.

* * *

I’d been helping her out. “Thank you,” she whispered.

“Thank you,” I said, “for being my mom.”

Such a grand smile crept across her face, and she opened her arms for a hug.

* * *

December 4, 2014 6:18a.m.

I’ve been up for an hour with Mom. She has such pain in her abdomen that she was crying, again. I hit her pain pump, gave her some morphine (a mistake?), and renewed her Ativan and the other thing, Halo-something.

“I been thinking,” she says, “about comparing the good colors with the evil colors.”

“What are the evil colors?”

“There are also safe colors,” she says.

“What are the safe colors?”

“Yellow,” she says.

“Yellow is a safe color?”

“Well,” she says, “I wouldn’t say safe, but you can rest a while.”

“What are some good colors?”

“Temerald green,” she says.

“Emerald green?”

“No, not emerald, temerald.” She thinks for a moment. “Did I dream that?”

* * *

December 6, 2014

“Who says that is good for me?” she says, referring to the Ativan I’m offering her.

“Well, the nurses do and I do.”

“Who are you?”

“I’m your son.”

“You’re not my son. My son would be frantic with worry. My son would be kind and compassionate. My son would offer me food.”

This followed her crying “Rudeness!” when I took a cup out of her hand so she didn’t have to risk falling out of bed to set it on the floor.

* * *

In the middle of last night, Adam and I are both up. Adam was up with Mom first, and I took over to sit her on the toilet. Adam retreats to the kitchen and I follow. We talk for a while, and then I hear Mom sobbing. I walk into the living room. “Are you okay, Mom? Are you in pain?”

She shakes her head. “It’s just fear,” she says. She’s been prickly so I don’t ask her fear of what. Besides, most human beings would say she had plenty to be afraid of.

* * *

With Adam here to watch Mom, Alex and I drove to Telluride in his rental car. Alex, one of

Alejandro and Cameron in Telluride

Alejandro and Cameron in Telluride

my best friends from law school, had arrived on Thursday night from the Dominican Republic, and would go back early Monday morning.  We had a few hours of really nice skiing under lifts 4, 5, and 6. I’m so out of shape. Six weeks of sedentariness. My thighs gave out early. We went to the Brown Dog for pizza. Then we drove home, tired as could be. Probably some altitude effects there. Alex and I began to watch a movie at about 7p.m. but at about 8p.m. he begged off, saying he was going back to his hotel to sleep. He leaves already tomorrow to spend his last night in Grand Junction.

But how to capture the gesture he made, a guy without a lot of time to spend away from work and family, traveling for longer than it would have taken for him to get to Eastern Europe? I’m grateful, and I’m also happy that he (surely) feels better for having come. He said he’s seen how his mother never really recovered from the deaths of her parents, so he felt he had some insight into what I must be going through.

That’s empathy.

* * *

I remain almost disturbingly sanguine. I seem to have accepted reality far more quickly than I’d have imagined.

* * *

December 7, 2014

Alejandro has gone. He came to the house this morning at around ten, we hung out together with Adam for a while, and then he drove Adam to the urgent care to check on a staph infection. Not long afterward Bonnie came to watch Mom and we three boys went to Starbucks, where I showed Adam and Alex the rough video of my company’s differential diagnosis

Adam, Alex, and Cameron at the Black Canyon

Adam, Alex, and Cameron at the Black Canyon

product, and then, because we still had time but nothing to do with our hands, we went to Horsefly, a bar across from Coffee Trader. And then to the Black Canyon, whose steep walls in the coming dusk they both enjoyed. “Thank you, Cameron,” Alex said.

* * *

Back at home I was happy to have Alex join me in a movie, though we said almost nothing during it. I’d never heard of “Detachment,” with Adrien Brody, but it was very good. It was late, and Alex said he’d be leaving for Grand Junction soon. As Alex was in the kitchen giving Adam his new contact information, I was standing by the front door, ready to give him a hug and escort him out. But they were taking longer than I thought they would, and I decided I wanted to watch my mother sleep. I stood there watching her, and after a while I began to cry.

She opened her eyes and I leaned down to hug her and kiss her head, and also to hide my eyes from her. She made some cooing sounds and stroked my arm. “What’s the matter, son?” she said, tenderly.  How did she know?

“I’m okay,” I said, because it seemed better than saying, “Nothing.”

I hugged her some more and kissed her. By now Alex was watching us. I stood up and he saw my face. He reached for her hand in both of his and said goodbye, and said something like, “Bless you.”

I walked ahead of him out the door.

“It’s tough,” he said.

“I think that movie softened me up,” I said, laughing.

“Me too,” he said. I heard him sniff. He took his glasses off and began to clean them.

I wondered why I was still standing there. I moved to hug Alex. “I’m so grateful you came,” I said. We both shook as we cried. I could feel his belly contracting with the same kind of silent tears I shed. “You’re a real friend,” I said.

“You are too.”

We hugged for a good long while. “Keep us posted,” he said.

“Yeah,” I said, and, remembering that some of the Teal Warriors had said my last post was on November 21 and they feared the worst, I added, “I know I’ve left people hanging with the blog.”

He told me not to worry about that, but to keep him updated. “Even if it’s something short,” he said.

And then he was off to the Caribbean.

* * *

December 9 (really 10, at 1:24a.m.), 2014

This morning I showed her pictures from her Facebook feed. A warm orange-yellow sunset over the ocean. A picture of Carrie, now living in Nebraska. “Gorgeous,” Mom murmured. She gazed at these with such wonder and gratitude. I started showing her videos. A dog that walked (or appeared to) on its front legs, its body in the air, while pissing on the sidewalk. A baby chimp clutching a stuffed-animal baby chimp. I was sitting on the emerald couch and holding the phone’s screen toward her, so that she watched the video with the open curiosity of a child and I watched her beautiful face and shining eyes. I read people’s comments on her Facebook page. I spoke in different voices and made everything sound better, or explained or summarized things to sound wonderful. I noticed she didn’t respond as much as she did a few weeks ago.

* * *

December 11, 2014   From Telluride, brief overnight visit

Slept in a bit, dehydrated from karaoke the night before, and got up at around 10:20a.m. I then spent a few hours cleaning up the condo for holiday guests before driving back to Montrose. Adam said Inge Bell had decided to stay the night, and that Mom had awakened in the middle of the night and was obstreperous and paranoid. Very difficult. Suzanne said this sounds like “terminal restlessness.”

Mom said, when she saw Suzanne, “I’m glad it’s you.”

Mom said she hurts all over. “Why does it have to be this way?” she asked Suzanne, who told her that she appreciated Mom’s example and her grace.

“She doesn’t want to go,” Suzanne, said, “she’s just really bummed. She got some peace during that conversation.”

“The folks who usually go down kicking and screaming are strong-willed and they’re women,” Suzanne told me. “Maybe because of all the obstacles they have to overcome. Your mom definitely falls into that category.”

But she refused to take the liquid bowel care medicine or a suppository. Suzanne gave her a choice among those two and hurting and Mom chose not to take the medication.

* * *

11:25p.m. Nurse Suzanne, I have learned from Adam, more than doubled Mom’s base dose. Suzanne thought Mom had crossed a line between consciousness and comfort, and she needed to be less conscious. Indeed, Mom hasn’t been able to sit up, wake up, or say much of anything since I arrived 10 hours ago. “Why are you so loving to me?” was her sole sentence of the day.

“Because you’re lovable,” I said, bearing in mind her primal wound, hoping I could somehow reach her more effectively now than at any other time in her life. “Because I love you. You’re worth loving.”

It is . . . something (sad? Buddhists say no) that I have been feeling my mother’s face and hair and holding her hand more in the last few weeks than in the rest of my life together. Kissing her, calling her sweetheart. I think her insecurities caused her to push people away at times.

* * *

I was concerned that so much mouth breathing during sleep would really dehydrate her.

“Are you thirsty, Mom?” I asked this several times. She shook her head at the first. At the second she simply stared ahead, vacantly.

* * *

I have had a few moments of sadness. In the car on the way from Telluride. In the house as I watched her and reflected on “terminal restlessness” or how she doesn’t want to die, even now.

* * *

She reached an arm up. The gesture wasn’t clear but I had the feeling she was seeking a hug. I leaned down and hugged her, and she reached up, this woman who was unable to wake up or respond to questions, and wrapped both arms around my torso, holding them there herself. After a long hug I stood up and caressed her face and her head. It’s now something you’d think of, I suppose, as a skull. The bones that give a skull its shape are to her face as a mountain range is to the plains on either side.

* * *

My having nothing to say in my blog after late November coincided with a surprising lift in my mood. How could I be less depressed, less sad, less anxious as my mother’s condition worsened? But there I was, trying out a number of theories to explain why. Acceptance? Had I, as humans do, adapted to a new normal? I had found a routine in the midst of things. Or maybe I just recognized her less and less? Or medication that included thyroid pills was working.

* * *

The routine left the stage of her bedroom and stuck to the stage that was the hospital bed in the living room. We stopped walking her to the bathroom and instead helped her to step out of bed, turn around about 120 degrees, and sit on the portable commode. (How many people who have used that commode have died within weeks or days?) She was able to eat fewer and fewer things, even as she complained of hunger and blamed others for not bringing her something she could eat, whatever that was. For about the last week, she has probably not consumed and kept down more than a spoonful of anything. She’s not even drinking much water. How can a person survive for weeks on less than six ounces a day? In a dry climate? And now she sleeps without cease and breathes out over and over through her mouth.

* * *

Sometimes there is a long pause between her breaths. Some are only five seconds, but some are seven, even ten. Ten seconds between her out-breath and her in-breath.
Our friend Michele texted from the Middle East to tell me that she wanted to visit Mom again. She didn’t care that Mom might not be able to talk, and didn’t seem dissuaded by the prospect of arriving (next weekend) after Mom had already passed away. “For support,” she said. And, she added, because the love between my mother and me had inspired her to go to her own mother, herself with Stage 4 breast cancer. Her mother had abused her, physically and emotionally. When Michele was 14 her mother threatened to kill her over a dish of food. “My world changed completely,” she said. I told her that Mom had suffered a similarly arbitrary act from her father that propelled her out of the house.  Imagine how bad home must have been when she all but ran from it at the age of 15.

How on earth did Mom manage to live with Opa, in Germany, when I was an infant? She was only 23, 24 years old, just a stone’s throw from the terrified 15-year-old who had spirited herself to safety.

* * *

December 12, 2014

My master Samuel Beckett once wrote a good friend, a producer of BBC Radio, after her estranged husband died.

All I could say, and much more, and much better, you will have said to yourself long ago. And I have so little light and wisdom in me, when it comes to such disaster, that I can see nothing for us but the old earth turning onward and time feasting on our suffering along with the rest. Somewhere at the heart of the gales of grief (and of love too, I’ve been told) already they have blown themselves out.

* * *

“Would you just . . . stop talking? Leave me alone?” She was nearly as obstreperous tonight, but not as bad as Wednesday night, when she pinched and bit Adam and Inge Bell and threatened to call the police on these people who were holding her in this house against her will. Today she was sedated with both painkillers (the dosage had gone from .45ml an hour to 1.0ml an hour) and the two relaxant medications. Perhaps selfishly, I asked Nurse Suzanne to dial the painkiller down to .9. Several hours later, Mom and I had some tender moments.

* * *

The next time she woke up, she was sitting on the edge of the bed. I ran out to help her use the commode. She sat there for quite a while, that vacant look on her face, queerly expressionless, along with her disinclination or inability to speak much. Separated by several minutes each, she peed four or five streams. At last I sat her on the bed and there she would sit, stubbornly, falling asleep while sitting, falling backwards, but refusing to lie back in the bed. “I want to go to sleep,” she’d say, and no sooner had I stood up and repeated, “You want to go to sleep?” than she would shake her head or say “no”. When Adam or I offered her water or help getting in bed, she was prickly. And she refused to take her relaxant medication. We went ‘round like this.

* * *

December 13, 2014

Mom was up and restless from about 5:30, when Adam called me out because Mom was trying to get out on the wrong side of the bed, to a little after 7. She spent most of that time sitting, as before, on the edge of the bed. “This will be another indecision marathon,” I said to Adam. He nodded. Once again she would not either go to the bathroom or lie back down in bed, and once again she kept saying she wanted to go to sleep, or wanted to go to the bathroom, and I’d stand up and repeat what she’d said and she would shake her head or say “no”. And she was still refusing to take her sublingual drops. Adam and I have been dropping them in while she sleeps, and trying not to get caught.

* * *

“Who are you?” she asked, after she’d awakened in the early afternoon.

“I’m your son.”

“Aww,” Berle said, and to Mom, “That’s Prince Cameron, Inge.”

* * *

I still have more tics when I’m out of the house.

* * *

At a little after five I got into bed next to Mom, squeezing myself between her shoulder and the railing. With my left hand I held her left, while I reached my right arm across her chest and my right hand cupping the side of her face. I listened to her breathing, once even a light snore like old times, and I tried to imagine not hearing any such thing, being alone in my Telluride condo, or here, or a hotel room, and knowing I would never see or hear my mother again. It’s just such scenarios that get the waterworks going. But I also feel the gratitude: it hasn’t happened yet, she’s still here. I imagined a dream in which I touched my mother in the same way, and then woke up. I felt the difference between the slicing pain of waking up and realizing it was all a dream and waking up and thinking she’s right here with me now, just as in the dream, hallelujah.

* * *

Berle told me her father died five years ago and it still just kills her. She said it took two years before she stopped crying regularly.

* * *

I walked into the living room a little after midnight. Mom was on the floor between the bed and the reddish couch. “What are you doing, Mom?” Adam was coming out of the other bedroom. We got her back on the bed. She talked about birds. Yesterday, she’d said she had a cat. Still, she’d recently come out of sleep and asked me not to crack my knuckles, something she’s been complaining about for about 40 years.

* * *

Tonight she was speaking in German, and I spoke German back.

She said something about getting spanked when you get home.

“Did this happen in Germany?” I said. I think she said yes.

“I’ve really got to get home,” she said. It was the second time in half an hour that she’d talked about going home. I told her she could go whenever she wanted. I’d be okay.

* * *

It is well-documented that observing others in a particular emotional state automatically triggers the representation of that state in the observer (Dimberg & Thunberg, 1998).

* * *

December 14, 2014

I began last night in my bed (Adam was snoring in the living room), switched to the couch after we got up with Mom and Adam went into Mom’s bedroom, and was awakened from the couch by Mom moving toward the edge of the bed. Bonnie came over. Mom asked who I was. But she also smiled when I kissed her head over and over. “She’s smiling,” Bonnie said, with joy.

8:58p.m. I sit sometimes and look at her. Sometimes I do Tonglen. If I start thinking at all, especially of my future, without her, wishing she could see and experience what I am, my eyes fill up.

Wishing she could be here to experience more joy, that she could have experienced more joy, will, I think, be the hardest on me.

* * *

I thought I read somewhere that when someone is close to death, their eyes become “glassy”. Mom’s eyes are definitely different in their sheen, and they often focus at random places before her – even when I am trying to direct her attention to a particular thing, like the marijuana pipe or water bottle.

* * *

December 15, 2014

Mom has been all but unable to speak all day, and as of 9:30p.m., it has gotten worse. Her stays on the commode get longer and longer. For some reason she keeps getting out on the wrong side of the bed, and then it’s nearly impossible to persuade her to go back across the bed to the commode. She either freezes and continually says, “In a minute”, or she tries to get out on the wrong side of the bed, as if she thinks she’s going all the way around – or is just suffering too much short-term memory loss coupled with disorientation.

* * *

She calls Adam “son”.

* * *

I say, Are you in physical pain?

No.

Psychological pain?

No.

You’re not feeling a little angry or anxious or sad?

No response.

* * *

Nurse Suzanne nods toward my restless mother and says, “Is the new medication amount working for you?”

“She has hardly had any pain that required us to hit the pain pump and she’s still alert at times.”

“I mean are you okay with the behavior?” I look at her dumbly. “Some people aren’t,” she says.

“So they medicate their parents?” I said, bewildered. “Because they can’t just slow down, or manage their emotions?”

* * *

Sometimes I just park across from her and watch her. I look at the physical, pharmaceutical, and cognitive ravages to her face and neck and the erector set of her bones everywhere.Her right eye and the right half of her mouth droop open more than her left.

It’s as if she wants to jump in the air and hike across someone’s country and cook a meal for twenty, but all she can do, instead, is to sit on the edge of the bed. It’s a compromise between body and spirit.

For the first time ever, she’s now refusing her medical marijuana against nausea.  Adam and I talk about how much certain things make sense or are good for her, in hopes she’ll overhear and understand and be persuaded.

“You used to love your medical marijuana. You were always posting on Facebook and evangelizing about it.” I take a puff from her glass pipe. “Oh, man, I feel less sick already.”

Adam says, “And all the cool kids are doing it. Look, Inge, I’ll do it if you’ll do it.”

We have no evidence this has ever worked.

* * *

She lifts up a red box of tissues and drinks from it.

“Are you thirsty, Mom?”

“Very,” she says, in that slight wheeze.

“I’ve got water right here.”

“It better be water,” she says.

* * *

December 16, 2014

Adam left just after noon.  Lately he had taken to calling her “sweetheart” and “my beautiful Inge”.

* * *

I return from an errand and see a lot of people sitting in the living room with Mom. Bonnie, of course, but now also Peggie, another Bonnie, and a young guy named Trevor. Turns out I’d met Trevor at Peggie’s ranch a few months ago. He was kneeling on the floor next to Mom’s bed, on the emerald couch side, and eventually I noticed that he was crying.

Peggie said to me, “He learned German with your mom, took her cooking classes – they go back.”

Trevor got up to leave soon afterward. He went around to the other side of the bed, which Mom was closer to. He leaned down and hugged her and touched her and my eyes teared up because he was an age I used to be, and he was crying.

Bonnie cried today too. She said she usually holds it together until she’s at home – “I’m a shower crier” – but today had been different. She was also crying when she left this evening. She said she wanted a hug and said something to the effect that I had given her or made her feel something very special in the last few weeks, but I can’t recall what it was. Aunt Christa said, by phone from Germany, that I was “grossartig,” which means, according to Google, magnificent, fabulous, gorgeous, sublime, and whatnot. Fiona had made the call, listened to my update in English, and then given the phone to Christa, who, Fiona said, was having a hard time. She’s watching her family disappear, really. Renate and Mom and Horst all in less than a year. So am I.

* * *

She always wanted to be loved, and she was. I’d like to think she knew it, in the end.

* * *

With about four weeks to go, cancer took her curiosity, and the questions largely ceased.

* * *

I would do this again. For my mother, for others. If there is anything that is God’s work, it’s showering love upon the dying. Love is healing, and the more love, the more healing. Hospice workers are lucky: they get to express love and compassion five days a week. Mother Theresa may have said that if you wanted to stop being depressed or improve your life, you had only to be of service to others. She also said something I think my mother and I both intuitively understood: “Loneliness and the feeling of being unwanted is the most terrible poverty.” And: “The hunger for love is much more difficult to remove than the hunger for bread.”

And this gem: “Let us not be satisfied with just giving money. Money is not enough, money can be got, but they need your hearts to love them. So, spread your love everywhere you go.”

* * *

December 17, 2014

Recently, some of Mom’s friends have taken to telling me they love me. Now that I can actually work, they’re even relieving me at home so I can go to Starbucks for a few hours of work. Bonnie in particular. “Get out of here!” she’ll say. “Go do something.” Yesterday after Trevor left Peggie broke down crying. She said she’d been having a really tough time lately with Mom’s imminent death. (Things have changed so much in the last two months that I can write that matter-of-factly. Before, I’d have been freaked out to contemplate it.) I sat on the couch with her and hugged her close as she let herself cry.

Mom is refusing her medicine again. That’s hard on me, as Adam pointed out to me. I feel like it would be abuse to force it on her, but then she will suffer more without it. Bonnie was more forceful, and got in a milliliter of Ativan.

Mom had apparently nodded yes to whether the chaplain might come, so he came today – really nice guy – and as I showered I realized he was singing “Silent Night”. I had just been thinking of finding the German lyrics of “Stille Nacht” to sing to her. Even before my mother’s health became an issue, I could cry while singing that song by myself. And now it may well be that she will choose Christmas, or Christmas Eve, for her time to leave. I suppose the association makes sense. Candy and I already associate Mom with a special kind of German Christmas.

Ten or so days ago, Mom stopped really getting any sustenance. She would still say she was hungry, but most of the time she’d veto whatever we mentioned or brought out to her. When she did try to eat something, I’d find the forkful or spoonful of food still orbiting her mouth, unswallowed, for quite a while afterward. For the last few days, she has expressed no hunger, and has eaten nothing. When she drank water, she almost always choked a little. For several weeks now she has taken in so little water that I marvel a person can survive. A few ounces a day? Two days ago that changed: she drank more water than in the prior three weeks combined.

She is more likely to become obstreperous, or the new consciousness that used to be Mom’s is, the one demanded of Adam and Inge that she be allowed to leave, threatened to call the police, and even tried to pinch and bite them. On Wednesday night she did the same with me for not hearing what she was saying. “I’m gonna call the police.” And after I couldn’t understand something she’d said: “God, I’m going to a hotel.” I had to laugh.

* * *

She would awaken and mumble something.

“Do you need water?” I’d ask. “To pee?”

“Pee.”

She’d sit up. Adam or I would prepare to help her off the bed.

Then she’d wave us off. “Not now!” or “In a minute.”

She might sit there for half an hour, forty-five minutes, and while she did we couldn’t go anywhere. Questions about whether she was ready, or whether she wanted to go back to bed, were ill-received. I understand that this negativity and restlessness or agitation hits many of the dying across the board, but I have wondered if hers has not followed some of its old courses. The exasperation, the defensiveness and prickliness, the victimhood, the annoyance and even anger when asked a question or given a suggestion.  The little girl who had been told (she once told me) that she was stupid and ugly and no man would ever love her — she was still inside.

“Don’t you touch me!” she said to me, one could call it a snarl, four nights ago, as Adam and I tried to help her out of the bed. I hadn’t heard that particular voice, I think, since I was a kid. It’s not the fullness of her speaking, so I don’t take it personally.

* * *

About two weeks ago, Bonnie said my mother wanted to talk to me. I went to the bedside and she said, “I’ve done a lot of wrong by you.” I said not at all, and that she should forgive herself. “I want you to forgive me,” she said.

“Mom, I have already forgiven you. A long time ago. I just love you, unconditionally.”

Bonnie said her face relaxed then.

* * *

Today, hospice nurse Suzanne told Bonnie, Lynne, and me that she thought Mom had another 48 hours or so. For the last two weeks I’d thought we were 1-2 weeks away, but this news, and the concreteness of an actual date (Saturday morning!), caught me by surprise.

“I thought you said she had three to nine days after her urine output stopped,” I said.

“I know,” she said, “but I’m seeing other things, like all the pain medication she’s needing, and her terminal restlessness and agitation.”

* * *

Bonnie and Lynne and I talked afterward.

“Whenever I imagined how this would go,” I said, “I saw her talking more about death and what would come after, for her and for us. She got that do-not-resuscitate living will a long time ago. She prepared all these other documents and put them in binders. She told us the combination to the safe and the PIN to her bank account.  She told us she wanted to be cremated and have the ashes spread over the Black Canyon. Even a few weeks ago she was concerned about the right people getting her things. But she hasn’t said anything about it lately, nothing about where she’s going or her feelings about it or what I or anyone will do afterward.”

Bonnie agreed. “She just doesn’t want to talk about it at all. It surprises me, too. But she just doesn’t want to go.”

“I don’t know if there’s some conversation I’ll regret not having. But I don’t think so.”

“Cameron,” Bonnie said, “I think everything your mother wanted to say to you she said.”

* * *

I learned that Mom often told her visiting friends, perhaps more than once each, about my having given her a flatscreen TV and a computer and a tablet and an iPhone and, recently, a Samsung phone. “She was so grateful for all that,” Bonnie said.

* * *

“You have taught me a great deal,” Bonnie said.

I looked up at her. “Really?”

“Absolutely. I’ve seen your calm, and your compassion. You showed me that it was okay to laugh and it was okay to cry. And,” she added, referring to a conversation I’d had with my mom about three months ago, “that I could gracefully leave a conversation without having to prove I was right or make someone see sense. I was so impressed when you calmly left the hospital room when you were trying to talk to your mom about things and she was resisting so much.”

“I don’t always do that,” I said. Which was probably an understatement.

“I got in a lot of trouble after you left,” she said. “Your mom looked at me and said, ‘And you! I’m mad at you. You didn’t even stand up for me.’ And I said, ‘Well, I can see where he’s coming from.’”

Bonnie stayed till mid-afternoon. I went to Starbucks for a few hours. Peggie relieved Bonnie. Lynne came over during Bonnie’s stay. Another Bonnie whom I’ve never met has been very helpful and caring since she got here.  She offered to come anytime, day or night. Madeline told me I was always welcome in her home. Bonnie had told me the same.

Peggie read a children’s book that involves heaven (can’t recall title) to Mom. “Are you ready to go, Inge? Do you want to go home?”

Peggie said that Mom nodded. New Bonnie affirmed it.

* * *

When I got back from Starbucks, and saw that Peggie was here and looked so serious and Mom’s gaunt bony face was pointed at the sky and her eyelids haven’t been closing all the way lately, before I knew it I started to cry. Peggie said to sit next to her and gave me a hug.

Still, it’s the aftermath that I’m worried about. I’ve been lonely enough for the past five years of separations and uncertainties and several different places to call home. How will I be afterward, without the original center of the solar system around?

What the master does better than we do is to proceed through uncertainty.

* * *

December 19, 2014 The Last Camino

Mom was mostly unconscious and unresponsive last night, and I could have slept in the bedroom without worry, but with the clock ticking I didn’t want to spend so many hours apart from her. I slept on the couch within arm’s reach of her bed again, getting to sleep sometime after 1a.m.

At about 6:30, when it was still dark, I woke up. I must have heard her in my sleep. The slight gargling in her breathing that we’d heard last night was now loud, ragged. It sounded terrible, the glottal, mucousy gurgling. I could have heard it anywhere in the house.

I raised the head of her bed. I got a sponge on a stick, and three or four times dipped it in water and squeezed it into her mouth. She moved her head slightly when I cleaned her parched lips. Her breaths were shallow and quick. Her hands were hot. Her forehead too. I texted this information to Bonnie, Berle, Peggie, Lynne, and Adam.

Mom was not at all responsive.  I brought out the big guns:  as I watched her face, I cracked all of my knuckles.

Nothing.

It was about ten minutes before it hit me: This sound is what they call the death rattle.

I looked it up to be sure.

A death rattle, known clinically as terminal respiratory secretions . . . is a sound often produced by someone who is near death when fluids such as saliva and bronchial secretions accumulate in the throat and upper chest.

Each description I found added that the sound was often very disturbing to family members, but it was not uncomfortable for the dying.  That all seemed to fit.

Oh, boy, here we go.

* * *

I climbed into the bed next to her, held her hand, kissed her head. Her hand was limp now. Her body like a furnace against my leg. I wept, quietly, unobtrusively, as usual, in case she could still hear and understand anything and worry about me.

For almost forty-eight years she’d been as constant as the sun and moon.

* * *

A text from Peggie. I’ll get dressed and be right over.

Peggie arrived at a quarter after seven. She talked to Mom about her strength, how she’d fought bravely and hard, and now she could go, she could just let go. She read from Psalms. There were a lot of praise the Lords. I wondered if that was too many praise the Lords for Mom. I found the “Do Not Weep at My Grave” poem and read it to Mom. Peggie said she saw tears leave Mom’s eyes.

Bonnie, who goes to work in Grand Junction on Fridays, had texted me, Cameron. I can’t come. I love you both. Please remind her that heart friends go on forever. And that I love her most. But she was here for ten minutes before I saw the text. “I was just called to come here, I had to pay attention.”

By now, Mom’s breathing was barely audible. She seemed much more peaceful now.

We found a German Christmas song on YouTube and played it for her. I played some of the videos I’d taken during the Camino – her singing a German folk song while walking, poles clacking along (here, again, she sings the same song almost exactly 3 years later); the Mourning Tenor of Los Arcos who had so touched her with his three different versions of Ave Maria, sung in a nearly empty church, in honor of his son; the Spanish woman playing the flying-saucer-like hang instrument; and the glorious scene of her spinning round and round in the great plaza of Santiago de Compostela:

Bonnie left and Peggie stayed on, encouraging me to go back to sleep. I wanted to write, but as I lay down on the reddish couch I found I couldn’t keep my eyes open.

* * *

Bonnie from the Plains, as she calls herself, arrived while I was sleeping and, according to Peggie, while Mom and I were both snoring, side by side.

When I awoke, Peggie was gone. Bonnie from the Plains sat on the opposite couch. She had just come back to Montrose from helping her husband, a dentist, do pro bono work for the Sioux tribe on the Standing Rock reservation in South Dakota. She said she had met Mom years ago through Peggie.

Peggie had said a few months ago, “Your mom is like a mother to me. Even though she’s not old enough to be.” Bonnie from the Plains said, “You know, your mom wasn’t that much older than Peggie, but Peggie had lost her mother a long time before and your mother just took her under her wing. That’s just how she was. A beautiful, classy lady.”

* * *

Nurse Suzanne arrived. After her divorce she had given herself the surname of Onelove.

“You know,” she said, “as a traveling nurse, I come into a lot of different families and get dropped into this great intimacy. This has been one of those that reminds me why I do this.”

“What’s different about them?” I asked.

“Some sort of heart connection,” she said. “With Inge, there’s a spiritual connection, and the way she’s like Lady Godiva, always out front, leading, saying to hell with rules that don’t make sense. She’s special. So thank you for sharing her.”

She continued. “One of the biggest gifts I got from Inge is that it’s okay to be normal, and you can still be special. She reminded me of that life lesson.”

Suzanne now checked Mom’s vitals.

“She’s tachy,” said Suzanne, referring to an abnormally fast heartbeat. It was about 110.  “She has a slight fever, which is normal. She’s breathing 28 times a minute. Twelve to twenty is normal breathing.”

Twenty-eight, I thought, was probably closer to her respiration on that first day of climbing over the Pyrenees a little over three years ago.  Almost 20 miles, up and down only, with a pack.

Suzanne took her blood pressure. “It’s 80 over something I can’t hear,” she said.

In the midst of the hubbub, I worked to finish writing this update for the many readers I left hanging in late November. Some have even written me privately or posted in the Teal Warriors Facebook group to ask me what was happening.

I hold her hand or kiss her head and eyelids every so often.

About half an hour ago, she was as responsive as I’ve seen her in a while.  She was conscious of my hug, squeezed my hand.

“I love you so much, Mom.  And I’m so glad I’ll be able to feel your presence every day.  I’ll be okay.  You go home whenever you need to.”  Now I was crying.

It was like one of those dreams you have after someone has died, when they’re alive again, for just a few, bittersweet moments.

Mom Rides Into the Sunset in her Wheelchair

Updated as of 5:15p.m., December 19, 2014

Not Enough World and Not Enough Time

November 10, 2014  Cont’d

6:55p.m. Today felt a bit more blah than yesterday. Aggravation with landlord. Mom’s complaints and my telling her she sounds like an ingrate. “Oh, kick me when I’m down,” she said. “I’m not kicking you,” I said. “I’m holding you accountable: I don’t deserve this. I know you’re angry but please find something else to take it out on.”

I was in another room when she called my name. “What?” I said.

“Are you upset with me?”

Was I? No. Wouldn’t be good to say yes even if I was. “No.” I walked into the living room. “I just want you to be mindful of the people around you. We’re on your side.”

* * *

Five minutes ago may have marked the first time since this crisis began that I found myself wondering how I could endure. And I think the reason I wondered that is that I first noticed how Mom can still move her legs, still stand with help and for a little while, and it occurred to me that we could be doing this for weeks, months. Can I do this that long?

I need to settle into a rhythm, and to have no attachments. If we must both suffer longer, then suffer we shall. There is no getting out of it.

But I also feel fear. I imagine how much she will suffer when she loses the use of her legs. And when would she no longer be able to eat? The hospice nurse said last week that Mom would only be able to keep down broth, but she’s still eating. Though not much today. Yesterday was relatively abundant eating for her, but today was light. Vomited twice this morning. My theory is that it had been almost six hours since her last Ativan when she hit her pain pump twice in a row and drank some coffee. I thought of these additional steps, each a descent into the hell that can exist on earth.

I brought her coffee.  “Oh, small pleasures,” she said. She would later tell Berle and Adam, with half-joking amazement, “My son made me a perfect cup of coffee this morning.” And this in spite of the fact that I had not known about her habit of pouring hot water in the mug so that the mug doesn’t cool off the coffee. Mom likes everything hot. I can’t remember if she was always like that and I just didn’t notice, or if this is a new thing. But everything we bring her should be near boiling.

The tenderest moment I will have ever shared with my mother happens when I hug her gently up off her bed. She is so light, so fragile and vulnerable, and she reaches her hands over my shoulders and around my neck, so that I am at once supporting the weight of her and gently hugging her to pick her up. As we start moving she puts the top of her head against my chest and holds on tight. We walk in a shuffling minuet to another part of the house.

November 11, 2014

It’s a little after 10a.m. and Mom is still sleeping. She’s sleeping more and more, it seems. It may not be a coincidence that I am playing my music in the house for the first time since I got here. I also spent some time decluttering my bedroom and the living room, and moved her music system, which she can no longer bear to use, into my closet. This frees up room for Adam’s things, which are stored in the living room.

Mieshelle, my former wife, is arriving on Sunday afternoon. “How do you feel about that?” Adam asked, like a psychotherapist. I shrug. “It’s fine. She may get more out of it than Mom, but that’s fine too.” Maybe I will take a few days’ break in Telluride while she – and the next day, Linda – is here. Nah, I shouldn’t.

Gratitude. I am so grateful that Adam came back. I feel badly that he is spending so much time here, in this dark, crowded, cluttered little house in a town of little interest to him. But when I gave him an out to spend less time here – “I think this could go on for weeks or longer,” I told him – he said that he had nothing else to do and could work from anywhere. I’m grateful that my friend and colleague Mark Kozak has been doing such great work for our differential diagnosis startup.

She sleeps until after ten, which is unheard of. When she wakes up she begins to vomit up her coffee along with bile. Adam and I tend to her, wiping her mouth and nose, holding her bag, holding her up. She is shivering. She says, “I’m going to starve to death.”

“You’ve always come back and started eating again, Mom,” I say. But the last forty-eight hours have seen her eat very little, and she’s vomited up her beloved coffee two days in a row.

I haven’t heard from Candy about her idea of switching work shifts with coworkers. I wonder if this means she will make a decision simply by not taking action.

* * *

At a little after noon she asked for some Savoy cabbage. Whatever that was, we had none. I made her some salad, but it was “too rough”. The watermelon was too sweet. She didn’t want chicken noodle soup, and when I persuaded her to have some she complained that it had nutmeg in it, but she did eat some noodles. Shortly after, she asked me how to give herself a dose on her pain pump. “I forgot how,” she said, rooting around on the machine end rather than the end with the bolus.

She has slept most of the day so far. It’s a little after 2p.m.

At about 2:30 the hospice nurse Suzanne dropped by. She had called earlier to tell us to put a numbing cream on the chest area around Mom’s port so that a new needle could be put in. We found the cream and let Mom do it herself without supervision. Suzanne came into the kitchen where I was getting something to eat.

“I wanted to – I’m sorry, I shouldn’t laugh, but she’s just so cute. Your mom put the cream on her nipple. Which has nothing to do with where the port needs to go. I think we’ve reached another milestone here.” I relayed to her how Mom hadn’t been able to find her pain bolus earlier. She nodded.

Back in the living room, I got Mom her Ativan and Suzanne handed her the water. Mom put the bottle to her mouth and began to drink. “No,” I said, “you need to put the Ativan in first.”

Suzanne gave me a look. I left the room to hide my tears from my mother.

* * *

Mom looked at me a little later. “Did someone steal a street in Germany or a book?”

* * *

Suzanne said, “With about two weeks in life, there’s a phenomena where the person gets bedsores all over and nothing on God’s green earth can prevent them.”

I find myself questioning whether that’s the wisest thing she can say in front of my mother.

I get on a business call for almost an hour and walk back into the living room. Mom has drunk a good bit of Berle’s goat milk, and Suzanne has got Adam and Berle in a huddle that elevates my anxiety. Now she turns to me. “Your mother said – and I know she might change her mind at any time – she said there are too many people coming in here. So she may be doing the final withdrawal we do in our lives, and you might want to consider limiting visitors.” She gives some specific suggestions, but I am still reeling from my mother’s impaired cognition today, and now from this mention of “final withdrawal”.

* * *

Bonnie comes by at around 4:30p.m. Mom is sleeping almost continuously. Bonnie will just sit with my mother, occupying the same room, for almost three hours.

* * *

Occasionally she will awaken to lift a hand uncertainly and murmur, Do we need to take a pill?

And I will say, No, Mom, we don’t need a pill yet. We just took the last one a little while ago.

Because that is what you do, with the dying. You give them every comfort you and others denied them in their lives. Death, as someone once wrote about a hanging, concentrates the mind, and I would add the heart. Suffering does the same. We just feel more. More than we normally do, or ever have, or maybe more than other people too. We are ablaze with feeling. With each feeling there is a thought. Sometimes the feeling comes first, and then thoughts about it, and sometimes the thought comes first and I feel: sadness – my mother is suffering and my mother is dying, are there sadder words in the English language? – and fear – I fear her losing her life, I fear her continued suffering, I fear being lonely, I fear being unable to function – and guilt and the fear of guilt – Why did I say that? Should I be thinking this? I hope I don’t feel guilty – and finally compassion, which means being willing to be sad for another person’s sadness.

And when I tell my mother no, we don’t need another pill, she is satisfied because she knows what’s happening. She feels control over something in her life and safe in knowing that we are doing our pills the right way, like a good girl. And she drifts off to sleep again.

* * *

As I write this at a few minutes to nine p.m., with my mother and Adam both slumbering, I am wondering, Am I ever going to see my mom again? Or was yesterday the last of anything familiar to me? I’m in a foreign country. Mom has said something like that a few times in recent months. It’s all foreign to me, too – losing so much, so quickly, being so surprised, and with such enormous stakes, losing sight of my mother in her descent (or ascent?) to another level of consciousness.

God, I hope she’s happy there.

* * *

She moans softly and I look to see her turning more on her side. She is facing me. “That’s good, Mom. You move just like that.” I don’t know if she can hear me, but I praise and reassure her just in case.

She hiccups. It sounds a little different now. I think it’s shorter now, more of a sharp high yip or even ip than the throatier uhuup she did for months.

I am going to miss that.

I have to stop writing to get up and answer the phone, where a woman begins a marketing pitch honed by the type of company I hope never to run, and I say, “It’s not a good time.” My voice still husky with tears, no doubt. I am hanging up the phone already when I hear her moving to the part of her flowchart where she asks if there’s a better time she could reach me.

I take a break. Read and answer email. Grow bored of what’s left. I read what commenters have said to my posts on Facebook, and Like them all. I hear my mother groan and realize she is reacting to the chainsaw that just started up in Adam’s nose. I invite Adam to go into Mom’s bedroom and shut the door. He goes to the kitchen. I read the Facebook comments to Mom and have to keep stopping to get ahold of my self.

She dozily awakens, eyes barely open, and asks for some hash. “You want some shatter hash?” I ask, to make sure she isn’t confusing hash with her usual leaf. She does. I’m in her room trying to scrape the glue-like substance out of its tiny plastic container and onto some leaf in the glass pipe when she says, “Do we have to go pick up anybody?”

Adam chooses one route – “No” – and I choose another – “Sure, Mom, we can pick up anyone you like.” Either way, her primal anxieties are quelled.

From a Facebook message from a stranger who has followed my mother’s posts for some time: She will have thousands of people lining up in heaven thanking her for what she has done.

Will this morning mark the last time I see my mother as she was, or will she, a morning person if there ever was one, rally again tomorrow morning?

* * *

She asks for orange juice. Adam has already bought a low-acid variety. While I massage her head, he explains that he hasn’t filled the cup all the way up, but there’s more if she wants it.

“You’re my favorite son,” she tells him.

We both start laughing, and I am delighted to see my mother’s face light up with a smile.

As I tuck her in and tell her I love her, she murmurs, “Don’t worry. You don’t have to worry.”

November 12, 2014

I hear my name. I haven’t been able to sleep since Adam’s coughing woke me up, so it doesn’t take me long to get to Mom’s side.

“I need to go to the bathroom,” she says.

When we return to the bed, she is exhausted. She is breathing hard. “Put your legs this way,” she says, pointing at the slice of bed beside her. “Help me get warm.” There isn’t room for putting my legs that way, so I sit down on the bed next to her. I pull the featherbed into her from the front and embrace her from behind.

“You need to call your cousin Renate,” she says. I say I will, ask if we have her current number. She thinks we do, but the last time she told me about Renate she said she had no number of the facility where she was being cared for.

I hug her some more.

She says something to the effect of “I always wanted to be close to you” or perhaps “I feel like I want to be close to you.” Then she adds, “Even when you roll your eyes at me.”

“Oh, Mom, I’m sorry.”

She shakes her head almost imperceptibly. “It’s all right. I do it too. It’s like a pre-conditioned thing.” She tells me I can go back to bed. “I’m not that selfish,” she says.

* * *

Sometime later, after trying to sleep, I go out again. She is sitting forward in her bed and there is a moist patch on her featherbed. I hold her again and press her pain pump. She seems to have forgotten that she can use it, which worries me. I make a note to check on her pain level more.

I’m concerned she’s not drinking enough fluids. But then, enough to what?

Cousin Fiona and Aunt Christa write (as Google Translate renders it):

With great concern we pursue Inge’s dramatic deterioration of their condition. As we have read, Candy is with you ?!
It sure is good and important for your mother, that you two are there and can give you all the love and help.
Our hearts are heavy and sad, but we can remotely only pray for you.
Unfortunately Renate state is equally dramatic, as the your mother.
One can hardly speak by phone with her. All this is a great psychological burden for us.
To see two of our closest and dearest relatives in such a serious condition and experience.

Teach your Mom please all love and warm greetings and embrace it for us.

Our thoughts are very much with you.
In love and embrace
Fiona and your aunt Christa

* * *

I walk up to Mom’s hospital bed and she says, in that slow, almost inaudible murmur, “It’s been a week.”

“What’s been a week?”

“Since I been here. Anybody have any ideas yet? Are we waiting for something?”

“We don’t have any new ideas, Mom.” I couldn’t even mention what we might be waiting for.

“I’m happy the nausea has improved,” she says.

“Me too, Mom.”

She looks stricken. “I’m so far from where I used to be.” She begins to cry. “It’s like the guy said, you better starting livin or get busy dyin, and this shit ain’t workin.”

“No, Mom. It’s not.”

We put our heads together, my right hand on the back of her head, and she cries and I cry in a way that I think she may not notice.

* * *

The hospice assistant seats Mom on a cold shower bench. Mom protests pitifully. Surely they learned a best practice around warming up the bench first? “I don’t want to do this,” I hear Mom say. She’s practically crying. When she gets back to her hospital bed, she’s cold and exhausted from the trip.

The hospice assistant, who has said she must be going soon, asks Mom to roll over onto her side.

“I don’t want to do any damn thing for five minutes,” Mom says. A few seconds later, she smiles that slow smile.

“I’ll stay as long as you need me,” the assistant says.

“No, five minutes was the limit,” Mom says firmly. We all laugh. Mom beams.

* * *

“I’m always here,” Mom tells Lynn on the phone. “I’m just stuck in some crevice.”

* * *

She is gazing toward the TV, which is off, and its cabinet.

“Do you see something?” I ask.

“Just for a second,” she says. “I saw two blips of a camino sign.” She gestured vaguely ahead of her.

“You mean the yellow arrow?”

“Yes,” she says.

* * *

I sometimes think of all the love I felt and did not show, and of all the love I felt and could not show.

* * *

I run errands. WalMart, City Market. When I walk through these places I feel at once heavy and like an open wound. I feel I’m in a race against time. Imagine someone shows up on your doorstep and says, “Your mother has a few days, a few weeks at most, to live. Good luck.” It’s like awaiting an execution, hurtling toward a death sentence. There isn’t enough time. Just as I wanted the future to come sooner when I was anxious to get divorced and move on, now I want to hold the future at bay. Not enough time.2014-11-12 12.28.20

 

The End of Suffering vs. The Will to Live

November 4, 2014

Mom and Adam in the kitchen store

Mom and Adam in the kitchen store

Mom reached for her lamp in the night and fell out of bed. It was a little after 4am. Adam heard her calling and helped her back to bed. He recorded a half milligram of Ativan and an unusual three pumps from her pain meds.

When I go into her room at 8a.m., she says, “I’m feeling a lot of pain from my leg. And I’m dizzy.”

“I’m sorry, Mom.”

* * *

She is irritable this morning. I hear her tone of complaint. It’s always been hard on me.

* * *

 

“I should get outside today,” she says, “don’t you think?”

“Sure, if you want to, Mom.”

“I need to take better care of myself.”

“You’re doing the best you can.”

“I just don’t know what to do anymore.”

* * *

 

She wants to call her bank because she has been convinced that she paid a doctor’s bill that she keeps getting in the mail.

“They’re probably not open till 9,” I say.

She looks at me. “It’s not 9 yet? This has been a long day.”

* * *

 

“She shouldn’t leave today,” Mom said, breaking into tears. She’s talking about Muschi. “But I know she has to watch her grandkids.”

Muschi brings mom fried potatoes and eggs. Mom begins to eat, and then to cry. She pushes the food around on her plate. I reach out to clasp her shoulder.

“I can’t do this all day.”

“Do what, Mom?”

“Watch her leave.” She looks at Muschi. “We’ve both been through this many times. We know how this goes.”

“Every time I’ve said goodbye to you,” Muschi says, “I’ve seen you again, and this time is no different, honey.”

* * *

 

I suggest that Mom turn over on her side, so as not to put stress on her bedsore.

“Which way?” she says. She speaks slowly, and a bit thickly, like a child just awakened.

“It doesn’t matter,” I say. She begins to roll to her right side, groaning a bit as she does so.
“You can put a pillow behind her,” the hospice nurse says.

Mom turns her head toward me. “You stay here,” she says.

“I’ll just be your bolster,” I say. I climb onto the bed and support her back with my body. The hospice nurse is delighted. My right arm goes under the stack of pillows and my left rests on Mom’s arm. She dozes. I work on being present. Mostly asleep, she says something about a fairytale. “A fairytale, Mom?”

“He dies in the end,” she says.

We all die in the end, I think.

She is so fragile. So scared. I cannot but weep unobtrusively.

In the living room later, Adam surprises me by opening his arms. “Come here,” he says.
The instant we embrace my body begins to shake, and for the first time in my life I cry on a man’s shoulder, and his hug just goes on.  His eyes are wet.

I sometimes find myself wondering how I will manage during the period after her passing. Will I be able to work? I think I will just leave the house empty until spring, no renters, and then sell it. The work that needs to be done on it overwhelms me.

* * *

 

“I love you, son,” Mom says.

“I love you too, Mom.”

“More and more,” she says. “Not less and less.” She is silent for a moment. “Amazing how that happens.”

* * *

 

In the late morning, Adam and I look into flights, prices, and frequent flyer miles to get my sister, who lives in Alabama, back to Colorado.

Adam and Muschi hatch the idea of bringing in a proper hospital bed, one with air sacs that are supposed to alleviate her bedsore. It is delivered just before noon. Mom’s German friends Monika and Inge come as well, and talk to Mom. We have the bed installed in the living room – with a couch on either side for visitors, and the TV straight ahead so Mom can watch her German TV shows. The air pump that circulates air through the sacs is quite loud. I take it off the metal bedframe and sandwich it between two pillows, where it can barely be heard.

* * *

 

At around noon Muschi goes into Mom’s room to say goodbye. “I will see you soon,” she says. “I love you.”

“I love you,” Mom says, groggily.

“I love you so much,” Muschi says. She caresses Mom’s face and hair.

“Just go,” Mom says, not unkindly. She always preferred just to be dropped off at the airport curb, to avoid all the long goodbyes and drama that go with accompanying a traveler inside.

They say goodbye again, these two women who have been best friends since 1948, and who came to the United States at almost the same time, and Muschi departs.

* * *

My good friend Tedd writes me from D.C.:

i send you a big hug. cried again when i saw your mom’s pic with you. it’s so hard cam, i am really sorry you and your family are going through this. always your brother, tedd

So many people have written so many nice things, some by email, some on Facebook, and some in the comments on the blog.

* * *

Mom’s legs bear some weight today, but she still began crying as we came back from the bathroom. “I can’t even be dignified,” she said. She is now in her hospital bed, which we’ve put in the middle of the living room.

“You’re plenty dignified, Mom. Courage and grace personified.”

She gave me a skeptical look.

* * *

She is upset that Pumpkin doesn’t come to her as before. I know her well enough to suspect that she is wondering if Pumpkin senses something changed in her. What she says is, “It’s too much change.” She pets him and cries more than I have seen her cry.
“I’m just having a little falling apart,” she says.

“Don’t you worry about that, Mom. You have every right. I’m surprised you’ve not done it more.”

Somehow, my nephew Dylan materializes. He hasn’t contacted Mom since he moved out of her house about four months ago. She hears his voice as he comes in the back door. “I’m not ready for this,” she says. But he is here. She hears his tales of financial and legal woes and I catch what I think is impatience. He does kiss her on the head and tell her he loves her as he leaves to go to his second job.

But before he leaves, Mom says, “I don’t know how to do this. This has been such a horrible day. Muschi left. I can’t walk . . . I just want to go to sleep.”

Did she literally mean to sleep? Or something more final? “Whenever you want to do that,” I said, in either case, “you just go ahead.”

Not long after, she asks for another Ativan, sooner than usual, because she literally wants to sleep.

* * *

In the mid-afternoon, Mom has a hankering, she says, for steak and broccoli and zucchini. Adam goes out to buy these things and then prepares them. As a cook, Adam is very enthusiastic. The meat, though expensive, turns out not to be very good – not Adam’s fault – and I’m still hungry.

“I’ll fix you something,” Mom says.

“You’ll what?” Mom hasn’t been able to stand up to cook in the kitchen for over a week now. Cooking is one of the many basic pleasures she’s been denied.

“Help me up,” she says.

So we actually shuffle into the kitchen together, and Mom goes to the refrigerator, bends down to rummage around, finds chicory roots and yogurt, and somehow stands up long enough to slice up the chicory — and make a chicory salad with curry, olive oil, and garlic. I’ve had this before from her, with sour cream in place of yogurt, and it’s surprisingly good. The soundtrack to “Rocky” may as well have been playing in the background. To sit up, to get out of bed, to shuffle and stagger to the kitchen, to bend down and push and lift, to stand and wobble and cut and pound, to stretch toward a high shelf and carry, to stir, to shuffle and stagger back to bed, to get into the bed without much use of legs – she may as well have been competing in a decathlon. If her goal was to rage, rage against the dying of the light and do what she loved, she succeeded.

* * *

I know she has a lot of life left in her because she can still annoy me.

This reminds me of a Facebook comment by my sister-in-law Jannilynn’s mother, Linda. When Linda visited a week ago, she spent a good deal of time massaging my mother’s feet. In her comment, she said that she could tell from touching my mother that it wasn’t yet time.

November 5, 2014

I was wearing my ear buds last night, watching TV on my laptop, and didn’t hear Mom calling for me. Note to self. Adam eventually heard her, and helped her to the bathroom and back. We were both up again in the middle of the night with her, and as I was stirring in the morning I heard her hiccupping – three or four times, five or six hiccups each. And sure enough, she then started to vomit. Adam was holding the bag when I came out to help. She cried. When she was done she felt dirty, wanted all the sheets cleaned, wanted to brush her teeth and use mouthwash, wanted a bath.

“I feel like I’m walking into this strange place and I don’t know what’s going on or what to do. And I’m doing it all alone.” She wept.

* * *

Getting to the bath, and into the bath, and out of the bath, and dressed, and back into bed, was a trial.  She seemed in constant pain, and it took great effort to move in small ways.  “I just wish I could go to sleep.”

I wasn’t sure I heard her. “What, Mom?”

“I wish I could go to sleep. If it must happen, I wish it wouldn’t be prolonged. I just want to go to sleep.”

So maybe that’s what she had meant yesterday, when she said she just wanted to go to sleep.

“I know, Mom.”

As she was getting back in her hospital bed she said to me, crying again, “I don’t want to do this.”

“I know, Mom.”

She curled into a fetal position and wept quietly. Tears ran down her face. There is nothing harder to watch. I leaned over the bed railing and hugged her.

“When’s the last time we clicked my pump?” she asked.

“It doesn’t matter, you can do it whenever you want.”

“Click it again,” she said. “I don’t want to feel anything. I don’t want to feel mad, sad, glad, nothing. I just want to be nothing.” I pressed the delivery button on the pump’s bolus. She had already used her glass pipe after her vomiting. Now I offered her my vaporizer. The marijuana would reduce her anxiety, and help her to sleep, and even help to prevent further nausea.

She had just taken a few draws on the vaporizer when Rob came by. Rob is Mom’s neighbor, the one who rolls the joints, and takes out her trash, and drops by to check on her.

As he walked into the living room his eyes took in her hospital bed. “Wow,” he said. I sort of hoped he wouldn’t do that. “You’ve got your own hospital bed and everything. Not doing too well?”

“Not worth a crap,” she said. “You’ve sure been gone a long time,” she said.

“My back has just been killing me,” he said. Rob had recently had back surgery. “I thought I had problems walking,” he said. “I’m sorry.”

“Light one up,” she said. “Let’s share one.”

So they did. Adam, who had begun to nap in Mom’s room before coming out to meet Rob, went back to sleep.

“It may have been a dream,” Mom said, “but I dreamt I was in a tub of pot water.” In a sort of fog now, she asked if there were any good movies out on Netflix or RedBox or at Hastings Books and Video. “I want to see a good movie,” she said. “Not weird, not heads chopped off, not muscles growing out of weird places.”

After Rob said goodbye she lay back and closed her eyes.

To sleep, perchance to dream.

* * *

In an email a few days ago, Julio had said he hoped I would soon share good news. I told him I wasn’t able to do that. He wrote back this morning.

Amigo Cameron
My spanish , my pseudoenglish aren´t good enough to express feelings
Only one thing i can tell you, Courage !
The fact that things like that happens, makes my “ faith “ collapse…
I insist, Courage !
Perhaps…
Julio

Mom awoke from her nap and turned on the TV, she said, to get her mind off things. I was putting on my shoes to hang out the wash when she said, from her hospital bed, “I didn’t know I would be so incapacitated. I thought I could do stuff. Slowly, carefully, but I thought we would still be able to do stuff. Now I don’t even know where I am.”

* * *

7:52p.m. Mom is sleeping. She is losing the use of her legs, and feels pain in them. That may be due to the retroperitoneal tumor pressing against her spine and other nerves. I think a doctor told us this could happen. She is on constant pain drip, and must take Ativan around the clock to avoid vomiting. And today she vomited in spite of the Ativan. As it has been for over a week, the vomit was greenish bile.  The hospice nurse says that may just be her liver giving up, and she may be switching to liquids-only pretty soon.

Yesterday and today Mom said what was previously unthinkable: that she just wanted to go to sleep and not wake up.

Her desire to end her suffering is finally starting to outweigh her will to live. And that is becoming my feeling as well, but more slowly. Because I’m not the one suffering, I can’t know how to properly weigh the pros of the longer life with the cons of the terrible psychological and physical suffering that life requires.

But I do know that the more time I spend fearing the end, the less time I’ll be spending with my mother.

* * *

At 8p.m. I walked into her room. “Mom,” I said. “Mom. I need you to take your Ativan.” She did not open her eyes. She just opened her mouth. I put the pill in her mouth and still without opening her eyes she drank water from the bottle I held to her lips. A few moments later, she groaned. “What is it, Mom? What hurts?”

“My butt,” she mumbled, meaning the bedsore.

Nothing to be done about that. I had already applied a marijuana and coconut salve. She whimpered again. I stood there for a moment, watching her, and then walked around the bed. I got up on it and put my head against hers.

Look at her hands, crossed over her abdomen. Inscribe them on your memory. They are thin now, fingers slender, the left one looks older, in this light, than the right one, which looks smooth. My right hand lies atop hers. These are the hands that have lovingly made me many a meal. They’ve caressed me and patted me on the shoulder or the side of my head. I take in her clavicle and collarbone, more prominent now, but familiar, a part of her I must have seen thousands of times without registering what they looked like.

I start writing in my head, and then I think about the fact that I’m writing in my head rather than being present with my mother, and then I’m reminded of Natalie Goldberg, in Writing Down the Bones, relaying the story of how her Zen master had told her, “Zen or writing. You can pick only one.” Which affirmed for me that writing is a form of meditation.

Pay attention. Be here now. See and hear her breathing.

I then began thinking again, this time about the two little books hospice had evidently decided it was time to bring and casually leave lying around. The books listed the symptoms that tell you someone is likely to die in one to three months, and when they’re days to weeks away, and when they’re hours to days away. Specific changes in breathing that I didn’t commit to memory apparently happen near and at the end.

She’s still breathing.Mom and Leaves

Messages to My Mother

Listening to all the letters and Facebook posts we’ve been reading to her, my mother has had a

Mom, early September 2014

Mom, left, and sister Christa, early September 2014

hard time believing how people really see her.  She seems truly bewildered that she inspires people so much with her signature combination of passion and gratitude. With her passion for cooking and teaching kids to cook, she’s inspired an extraordinary proportion of her pupils to go into the culinary business.  She inspired many people with her walk on the Camino de Santiago, and with the blog she wrote of her journey with cancer before, during, and after the Camino.  On Facebook, and especially in the Teal Warriors group of women with ovarian cancer and their caregivers, she is known as an eternally positive, encouraging presence, and readers are clearly inspired by her perspective, like her gratitude for nature’s beauty even in the midst of life’s great challenges.

Here’s what I’m talking about.  Herewith, a letter from Grace, whom I met in Washington, D.C. several years ago, and, below that, a number of Facebook posts from my mother’s Teal Warriors, a wonderful Facebook group consisting of women with ovarian cancer and their caregivers:

Dear Inge,

We have never met, and yet, you have influenced my life immensely. I write these words to you today with so much love and gratitude.

Many years ago, I decided that someday I would walk the Camino de Santiago.

Last year, when the funds were (finally) there for me and the trip became a real possibility, I began my research and planning.

Your blog, Camino not Chemo, appeared on my Google search.

I read the entire story in one evening. I remember so clearly curling up on the couch, laptop there with me, ignoring my phone as it rang, literally blocking out the world… reading long into the night. “Just one more entry…and then I’ll go to sleep…”

But I couldn’t stop reading. Hours went by. Quickly!

Reading all about your journey, the physical one and the spiritual one, was a godsend to me. I know the words were sometimes yours, sometimes Cameron’s, but what shined through always was your strength. Your infallible spirit. Your determination. Your bravery. You are, quite frankly, one of the strongest women I “know”.

I was truly overcome with emotion when I saw the pictures of you there, outside the Cathedral in Santiago. A beautiful, joyful face. Healthy in body and soul.

And then, upon your return to America, I continued to follow your journey…

This battle that you have faced with such dignity and courage.

Many months later, when I began my own pilgrimage across Spain, you were with me. I thought of you as I followed your footsteps across the Pyrenees, when I knelt at the base of the Cruz de Ferro, when I swam in the lake at Molinaseca, and when I embraced my friends when we arrived in Santiago. I thought of you as I continued on to Fisterra, when I jumped in the ocean there at the “end of the world”; for me a pagan baptism, of sorts.

And I think of you now. Everyday! With so much love and gratitude.

Thank you Inge. Thank you for sharing your journey. Thank you for sharing your life. Thank you for educating so many of us, your faithful readers, on healthy living.

Your story has inspired me. In many ways, you have changed my life. My journey would not have been the same without your words. And I will think of you as I continue to walk my life’s journey.

I am eternally grateful.

Your friend,

Grace Santarelli

The notes below are a sampling from the comments from members of Mom’s Facebook group, Teal Warriors:

‪Denise:  Please tell Inge I’m thinking of her from the UK. Her posts, her pictures helped me through my toughest times with my late ‘Little Mum’.

‪Pam: There are no words to describe my feelings and I am sure those of many others. ‪Inge Cheatham‬ – you are an amazing warrior. As Kerie said, you have set a very high bar. I too was drawn in by the beautiful pictures and inspiring comments you posted each day. I miss them but mainly because they reflect you. Even through all of what I just read about, you were posting encouraging positive comments when you could. I am pleased that you are receiving such wonderful support. We will have tea together in a beautiful flower garden someday… Praying for a miracle. Also comfort, peace, and some joy in each day. I love you my friend!

‪Susan:  Please Let dear ‪Inge Cheatham‬ how very much she is loved by us all. We are keeping you all in our thoughts and prayers. She has warmed all of our hearts at one time or another.. God Bless

‪Linda: ‬ This flower is for you Inge… Protea – the flower of strength. Love and Prayers to you sweet Inge. Thinking of you now and always.

‪Andrea:  All the beautiful words and photos you have given us Inge here is one for you [with a photo]

Colleen:  Thank-you for letting us know ,your Mom has helped so many of us please let her know we are sending her positive healing thoughts.

‪Betty: ‬ Inge, my dear teal warrior sister, never have I known a more compassionate and loving lady that understands the sad part of our illnesses yet always finds joy in everyday. I love you, Inge. Please find peace and comfort in your coming days. God bless you, my special friend.‪

Valerie:  Inge….you are an inspiration to a lot of us,,,you are very courageous and beautiful. Prayers to you my dear.

Victoria: Cameron! Thank you very much for updating us. I am thinking about your Mom every day, and she is in my prayers. Even when i am not feeling good and can not write my post, i am looking if there an update from Inge. She is Amasing. Sending my prayers, energy and healing hugs to her. God bless your family!

Karen:  When I check Facebook, I usually start by looking for Inge’s post. The beautiful pictures and encouraging words are a great start to my day. Even when she is going through a rough time, she remains optimistic and informing. I have been going through a rough patch and had not checked for Inge so this news is hitting hard. Please let her know what an inspiration she is to us and what pleasure she gives us. You, Cameron, are such a loving and caring son. I’m sorry for all you’ve gone through but you have given so much to your mom and her pride in you comes through in all her posts. My heart is breaking but thank you for keeping us informed.

‪Ruth:  Please tell Inge all the messages she is getting, she has helped so many of us. She inspired me to get on with life. Cancer does not define us, it’s a part of us. She has helped so many of us to stop and see the beauty in nature around us. She is the rock on our teal warriors. (((((((((((((((Biggest hug ever))))))))))))

Susanna:  Thank you for letting us know Cameron , I think about you Inge every day , you are my backbone , you giving all of us hope and strength , and a lot of useful advice, a kick in the butt sometimes, you made us cry, and you made us laugh, you are an absolute angel. Lots of hugs prayers for you and your loved ones.

Sharon:  Prayers for you ‪Inge Cheatham‬, you have given so many of your teal sisters inspiration to keep going. Love and hugs to you.

Beth:‬ ‪Inge Cheatham‬ has been a beacon to me. She is the light of love and caring. Always striving for just a bit more of life’s beauty.

Want to see what they all mean?  Then enjoy this!

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom and Julio

Out from Under Myself

January 14.  I write that to keep track.  I’ve been sick for almost exactly two weeks, and in a sense I feel like I’ve missed 2012.  I’m in the city now, that singular city, Manhattan. Standing before my MacBook Air at a tall, chairless table in Le Pain Quotidien, the kind of table meant to encourage executives to quaff their coffee and tourists to eat their croissant and then to get the hell out, I begin, suddenly, at long last, to write . . .

I was so happy to get into the city again, after over two weeks away.  If I didn’t get a visual of John Travolta walking the streets to the sound of “Stayin’ Alive”, that’s about how I felt.  Sometimes I can really feel the heels of my shoes hit the sidewalk, and at about 40th Street and 7th Avenue I was having one of those moments.  When I realized my gloves were missing and turned to see my bus heading down 7th I was just starting to listen, on my iPhone, to the guitars of Jet’s blistering “Are You Gonna Be My Girl?”  What are the odds that, just when I need to sprint after a bus, on comes a soundtrack song from the Ski Dance Drive mix?

I leapt into the street, outran a taxi, and ran down the bus.  Whew!  That the gloves weren’t there (I’d left them on the first bus) hardly dampened my enthusiasm.

Afterward, I posted a photo on Facebook, of a different bus, which sparked general outrage that I would stop to take a picture of my prey before running it down.  One person suggested the gloves must have been lined with rabbit fur, but the suggestion is patently ridiculous.  They were actually lined with down harvested from a hundred virgins’ inner thighs.

As I continued my walk to the New York Public Library, I reached into my change pocket and without looking gave the contents to a sad-looking seated man who wasn’t even begging.  Outside the library I would later set up a recurring donation to Somali refugees.

And I walked east on 40th Street and soaked up the energy of the city.

Why didn’t I do this more often over the last two weeks?  Was I thatsick?

Bryant Park Grill, with the New York Public Library behind it

You might wonder – well, you probably aren’t wondering, but lately I have been so self-absorbed I can readily imagine you thinking about me almost as much as I do – you might wonder, I was saying, if I, a coach, made New Year’s resolutions this year.  In most prior years I’d have said no.  This year, I have been putting together ideas, so I have a sort of plan, but it’s not done.  It can’t be done until I figure out what the purpose of 2012 is, other than to scrawl on the wall another tally mark of years gone by.

My resolutions, that is, like me, are a work in serious progress.  Whither Cameron?  There are no yellow arrows here.  “Snap back to reality, oh, there goes gravity,” sings Eminem as I write this.  Exactly.  Back from a camino, or path, with clear markings on it, I am still on this latest quest, the kind of quest outlined in the hero’s journey of myth and cinema.

When I left Bend in August, my plan, which I’d arrived at after visiting several cities last summer, was to move to the winner, San Francisco, sometime after I got back.  That “sometime,” I suppose, holds the rub.  In August I had no idea when my house would sell, but there I was, on an October 14 morning in Galicia, three days from the end of the Camino, executing the closing documents on my house and signing most of my considerable down payment into the recessiosphere.  My wonderful Bend real estate agent, Kelly Neuman, hired movers to pack up my things and put them in storage somewhere in Bend.

At this point in telling my story, the language I overhear myself using with people is revealing:

I sold my house out from under myself.

I find it incredibly useful to watch thoughts, and to deconstruct them like a committee comprised of a literary critic, a psychoanalyst, a lawyer, and a writer (Freud was arguably all of these, the lawyer courtesy of his late 1800s Viennese Judaism).  The metaphor I used – out from under myself — told me I believed, or felt as if, I had knocked the foundations of my life out from under myself, the way you might kick away a ladder you’re standing on.

When I got back to New York on October 22, I wasn’t ready to go back to Oregon on the October 25 flight I’d scheduled.  I felt drained to contemplate it.  Besides, what would I do there?  My life, including my BMW, was in storage.  The Land “World’s Most Expensive Ski Accessory” Rover I listed for sale on Craigslist.  And if I would ever be ready to move to San Francisco, I knew it was not anytime soon.

After all the metaphorical running, running, of the past year-and-a-half, after the literal walk through Spain and jaunt through Portugal, I was, at last, without anything in particular to do.  Oh, the coaching continued, but it was the next mission, the next purposeful and deliberate search for meaning, that was not clear.  And as I tell clients, clarity is confidence, and confidence clarity.  They are really two ways of describing the same phenomenon; you’ll never have one without the other.

In hindsight, it was probably unreasonable to expect that I would attain that clarity and confidence so quickly.  Right.  So, I’ll get back from the trip and I’ll be totally done with the past and completely clear about the future and life will just sort of proceed from there.  There are measurable steps in life’s major transitions, and I was still, on all the evidence, engaged in some form of rest, recovery, recuperation, rejuvenation, perhaps even a subtle, low-grade form of mourning. Whatever it was, I was not my usually hyper-efficient, hard-charging self.

I tried not to resist this, because resisting reality always hurts.  I should be different.  I should be other than what I am.  Even though any sentence that begins with “I” and continues with “should” is almost always untrue on arrival, I “knew” I should be writing.  The following captured thought, repeated incessantly day and night, is how I knew:

I should be writing.

. . . multiplied, like horseflies and gnats and sometimes a mallet, by several thousand.

But what to write?  The camino blog felt over for me.  In title, intent, and practice, it had been a blog about Mom and the Camino and cancer:  I hesitated to make it a blog about me.  But even that was probably academic, because I didn’t know even what I might want to share with the world, or at least with the blog’s hundred-plus readers.  I can see why all the gurus write their books from the perspective of having already reached their grail, after the fact, rather than showing us the dirty confusing embarrassing spectacle of themselves floundering about, flapping about like a fish on shore and in search of oxygen.  Eckhart Tolle wrote his books after his enlightenment, and they’re fine, important books, but how do you relate to a Zen master?

Before the Camino, I had thought about keeping a blog on my journey of separation and divorce in real-time, to illustrate most pungently how a fairly normal person gets through, and to differentiate any related book from all those that show gurus dispensing wisdom in hindsight.  It seemed to me that people don’t benefit from seeing or reading someone tell of their journey once it’s over as much as they would from witnessing the journey itself.  But the Anatomy of a Divorce blog also was not to be.

I also toyed for a while with launching a blog about one of the few things I was , apparently, motivated to do while in New York, which was trying to meet women.  But that idea too has languished, for reasons that need not detain us here.

Happily, for a while in May I had felt like working on “The Novel,” by which I mean the first in a trilogy I conceived of over seven years ago.  I had worked on it peripatetically for about five years, but drifted away from it in 2009, as I spent my time being a senior executive in a start-up, being married, helping my wife run her business, and researching and co-writing a book for several publishers.  I had a brief fling with The Novel during my two weeks in Israel, in May, felt great about it – but arrived back in Bend to reality.  I also lost most of what I had written, after my new hard drive crashed.  This was discouraging, but a drop in the bucket of everything else going on at the time.

And so the writing proceeds very slowly, though it is mostly about the Camino project, which I am tentatively calling Mom and Me, along with some subtitle, perhaps relating to divorce and other cancers.  Could I finish it before the next camino season, say, by May, and get it in Kindle format so pilgrims could take it with them on the Camino?  Could I get enough word-of-mouth and other buzz to sell more than a few copies? We shall see…

In early December, I decided to go to Bend to tie up many of the loose ends that had been grating on me.  But that trip would turn out to be completely different from what I imagined.

 

On Auschwitz and Cancer

For at least two weeks I have had in mind a post that addresses Mom’s PET scan and the expectations that so many people have about what will happen to her cancer now that she has been on the Camino.  I discern these expectations in what people say to Mom, in her telling me, a week ago, that she felt “pressure”, and in our tribe’s utter inability to stop telling ourselves stories . . .

But for at least two weeks, I have not found myself writing anything.  Why that has been so could justify its own essay.  It wasn’t until I read Mom’s “Cheers and Kindness” post of this morning (about her experience with her friendly townspeople and her wait for the results of the PET scan), and found myself crying at the end, that I began to write this post.  I don’t know where it’s going, but I begin anyway.  “I can’t go on, I’ll go on,” as my master and hero Samuel Beckett once had a nameless character say.

Humans see patterns in everything.  Hypnotize a person (as researchers did in a now famous set of experiments) and tell him to get up from his chair and walk to stand by a window, and when you wake him up and ask him why he is standing by the window, he will say, for example, “There was a cold draft, and I was shutting the window.”  Of course this is not true, but we now know that the brain searches relentlessly for explanations of everything it does not understand or does not wish to grapple with.

Not so long ago, we prayed to the sun to intervene

Just today I opened The New Yorker to read “It was an article of faith among the [Libyan] rebels that Qaddafi had regularly used magic to prop up his long reign.  What other explanation could there be?”  Lacking explanation, man often turns to the supernatural.

Stories are easiest to see in beliefs about politics and religion — two areas that, not coincidentally, wise people know it’s best not to argue about.  That’s because such beliefs are usually not arrived at by reason but by responses to emotion, and it’s pointless to argue with conclusions reached by emotion.  Today I saw one writer’s interpretation of New York City’s shutdown of Occupy Wall Street, as he looked at the site that once housed the 5000 books of the Occupy Wall Street Library:

What a picture it would be . . . of police in riot gear gathering boxes of donated books and loading them into garbage trucks. A perfect metaphor for what appears to be the intention of last night’s raid: destroying the body of knowledge that had been collected by a movement just two months old . . .

If you want to spot tendentious, made-up belief systems, look for words like “appears to be,” as in “the contents of another person’s mind appear to be an intention to destroy knowledge.”  A great many marriages founder on this one powerful impulse, that of imagining we know the meaning in another person’s mind.  All storytelling arises from man’s wrestling with painful sensations of ignorance and uncertainty — which is fear.  The results of this wrestling, this agon, we call myth, religion, fiction, cinema, psychology, ideology, doctrine, dogma.

So we see a woman walk across Spain on (and in) a dream and we

Mom displays good food on the Camino

continue the story.  She has cancer, right?  She wants it to go away, right?  And look at all that bravery, all that effort!  Look what a story so far, with all the blog posts illustrating the triumph of the human spirit!  Why, we’ve even got her in high-definition video!

It’s a story fit for the movies!

What is left behind

Except for one thing, we think:  we don’t have our ending yet.  As the writer of the Gospel of Matthew well knew, adding, as he did, the all-important Resurrection to Mark’s far more abrupt ending*, there can be no meaning without a proper ending.  And the only acceptable ending to this fairytale is, of course, that somehow, in magical ways we don’t need to understand but need to believe in, the walk across Spain – the exercise, the sun, the intention, the bravery, the purpose, God – cured the cancer.  I would guess that nearly every reader of this blog will acknowledge in herself this secret hope, this small buried voice whose sister whispered in my mother’s head as she approached the Cruz de Ferro with the earlier PET scan, with the cancer, she hoped somehow to leave behind.

I don’t need to understand how it can happen, we think, but I would love to see a fairytale ending.  I’d love to see God choose to play a role in this drama and give a woman her just dessert.

This is a way of thinking pilgrims were familiar with a thousand years ago:  surely if I go to all this effort, God will reward me.  The medieval Catholic Church validated this thinking, handing out “indulgences”, in its role as God’s mouthpiece on earth, to people who made some kind of effort – the Camino pilgrims, say, or the people, both wealthy and poor, who got karma credits with God for handing over their money to the Church.

Setting aside the Church’s confusion of money with divine will (and itself with divinity), all of this relies on belief in an intercessionary God — that is, a God who will intercede, or intervene, in human affairs, if we simply do something noticeable enough to catch “His” attention (a God who intervenes in human affairs is nothing if not person-like).

I would like to believe such a God exists, but then if such a God did exist, and either set in motion or stood by and did nothing for the shot, gassed, and hung-by-their-tongues Jews of the Shoah, or the Rwandans, or the victims of Stalin, Mao, and Pol Pot, I would find Him unworthy of the barest worship.  Either he is weak beyond imagining, or he is capable of ending unbearable suffering but lacks all compassion.

It is this God who is said to have died in the concentration camp at Auschwitz, and for people who study history and its lessons there is no resurrecting him.  Can there be a kind of divinity who intervenes in the cancers of mothers who do pilgrimages but ignores the cries of children in gas chambers?  I do not think so.  Not that kind, by that definition.

This is not to say divinity, or a consciousness that pervades the universe, does not exist.  It is only to say that I’m not able to believe there is a person-like entity who intervenes in human affairs.

If Mom’s cancer does not reappear on her PET scan, there are a number of possible reasons for it, from what science now tells us of the power of the human mind (in science’s belated validation of prayer and meditation) to what we know love and purpose can do for the human immune system.

I create meaning and emotion just by inserting an image in a particular place

Love and purpose.  Immune system.  For those who don’t credit an intercessionary God, these are the building blocks of their hope, vague as it may be:  Inge did that amazing walk, such great purpose, we all love her, we hope her cancer goes away now.

I do too.  And I too don’t care how it happens or whether I could ever explain it.  My mind bends toward the romantic and the idealistic as much as the next person’s.

But I have worried since the first moment Mom mentioned doing this trip that it would begin to work on her mind, whispering to her of salvation, giving her a hope — so powerful in the agon with dis-ease — that might turn on her if the outcome to which she had inevitably grown attached did not come about.  I have worried for many months about us measuring the success of the trip, or Mom’s chances of survival, by the same meaningless yardstick, the PET scan of November 14.  (See the end of my post a day before we reached the Cruz de Ferro, when Mom voiced aloud what until then had only been the whispers of going to the cross and leaving her cancer behind).

But the PET scan is meaningless, in the sense that it neither signals an objective truth — someone will or will not die — nor has within it a pre-fabricated storyline of what must happen next — of what it means.  We create the storyline.  Yesterday’s PET scan is just

Another Day on the Camino

another day on the camino, and just as there were days before it that did not speak of life or death, there will now come days after it that are silent on the matter.  The PET scan is just data; we supply the meaning of it.

Mom is powerful precisely because she gets to choose what meaning to assign the PET scan.  Doctors and others will look at a certain scan and say, “This is great!”  They will look at different results and say, “Oh, oh, my, this is unfortunate.”  They are, however, simply speaking from their own, inevitably blinkered, system of belief.

Mom can decide what storyline she will believe in, and as one of my favorite Taoist stories shows, her storyline doesn’t have to grasping for meaning prematurely.

Sometimes a horse is just a horse, of course

There was an old farmer who had worked his land for many years.  One day his horse ran away.  His neighbors heard the news and ran to see him.

“Such bad luck!” they said.

“We’ll see,” said the farmer.

The next day, the horse came back, bringing with it three wild horses.

“How wonderful!” the neighbors said.

“We’ll see,” said the farmer.

The next day, the farmer’s son tried to ride one of the wild horses, was thrown, and broke his leg.

Here came the neighbors.

“What a disaster!” they said, patting the farmer on the back.  “Your fields will rot if he can’t work the farm.”

“We’ll see,” said the farmer.

A day later, the emperor’s army recruiters passed through the village to draft young men into the army.  They saw that the farmer’s son had a broken leg, and they passed him by.

The neighbors, again.

“Such good fortune!” they said.

“We’ll see,” said the farmer.

All this is to say that the Lord moves in ways mysterious, not ways we can divine in our desperate interpretations of this event and that . . . In the absence of knowing, then, what we’ll see, we can

Give it a try -- supply your own caption

only let go of the need to know, which sometimes comes in the form of patience and other times forgiveness, and cultivate those states of mind — love, compassion, positivity — that lead to healing.

The “unfortunate” PET scan of May has unfolded into some of the greatest experiences of Mom’s life, not to mention mine, Carrie’s, and many others’.  Who, then, will claim to know that yesterday’s PET scan can be “bad news”?

That camino continues, and we’ll all be walking with Mom as she walks it.

 

* The original Mark ends with the women fleeing from the empty tomb, and saying “nothing to anyone, because they were afraid.”  (How the writer of Mark knew what they saw when they said nothing to anyone is another story.)  In Mark, there is no Resurrection, and without the decades-later additions of Matthew, Luke, and John, Christianity as we know it would not exist.

Walking at home…

It’s been a few days since we’ve returned. The first few days were busy with all the usual tasks. Mail sorting, bill paying, laundry, dusting, leave raking and shopping for groceries.

The day after I got home, a friend came to pick me up to drive to Grand Junction. T.V. station KREX wanted an interview with Carrie and I. Well, that was fun.


Also a reporter from the Daily Sentinel was there at the same time (click link to read). See the NBC11 News report.  It was on the news that Sunday night. KREX took some artistic license with the contents (and my name) but overall the word was out. Carrie had an interview with KKCO the next day and some more pictures of our journey were shown.

Sunday afternoon, Carrie, her mom, and her sister came, as did a few friends of mine, who wanted to meet Carrie. They wanted to hear what her impression and thoughts were. How or why it had changed her. That was a very nice afternoon, recalling and remembering our journey and as long as we get to talk about it, it hasn’t ended. My friend Carla stayed to help me write a letter to Marianne, in French.

All my friends and people I know, i.e. Post Office, grocery store, etc. tell me how well I look. They say I’m glowing. Perfect picture of health. (From their lips to God’s ear.) I feel really well. I’ve lost 5 lbs since I’m back. My body is shedding fluids. I’ve also started to take Avemar. This is a fermented wheat germ product and is to improve immune system as well as detox. I’ve seen a one-hour special, called Run from the cure“.  It’s about oil made from hemp that helps to cure or alleviate many illnesses. Smoking marijuana, on the other hand, apparently does not help in cancer cases.

Strangers called me and asked for advice for lifestyle changes, to improve their health. I told them that I’m working on getting a cooking class together and would love to show them how this can be done, making small changes and working up to the grander scale.

During those first days, I still felt displaced and out of sorts. I was missing the simple act of walking, of meeting pilgrims.  I was told when the P.E.T scan appointment was made that I was not to do straineous exercise. The long walk was the reason I had to wait 3 weeks for my body to become ‘resting’. I’ve tried. I really have, but yesterday, was a gorgeous late fall day. The special kind we have here on the Western Slope. My body was idling, revving to go. (What I did not miss, was the JAMON.)

So, I put my snazzy camino boots on and walked the path by the river. The San Juan mountains, south of me were snow covered and brilliant against the azure sky. Trees still had gold, green, yellow foliage. I could almost pretend I was walking the camino. Horses were in one pasture and then I saw a pair of foxes. Their ears came up as I passed but they stayed.

I was still thinking about some of the places I’d been, when some people walked toward me. Automatically I said ‘Buen Camino’.  They smiled and said “Good morning.” I chuckled to myself; maybe they thought I was Mexican.

I felt bad thinking about those poor people getting pounded by this freak snow storm, back East, when I was enjoying this perfect weather that we have here, oh, about 300 days out of the year.

It felt so good to just keep moving. I walked a measly 3.5 miles but felt so much better. I don’t think this will hurt anything? In any case, I’ll stop walking a few days prior to the appointment. It’ll all settle. Of course, now I’m also thinking what all these tests might show? But, I push those thoughts away. There’s no use on trying to analyze something that I don’t know. Would drive you crazy, if you allow it.

I suppose walking the camino at my age and circumstance may be a bigger deal than I thought. Or, perhaps it’s the curiosity of avoiding chemo that makes this newsworthy. Could be, because I did finish the walk. In any case, a reporter from “The Watch”, a regional newspaper called yesterday for an interview. This one is coming out Thursday and can accessed online. My 15 minutes of fame. But more so, everyone is anticipating the results of these tests. Waiting, wondering if all this walking has done something unique. I know it has, without results from tests. Meanwhile, I will enjoy the great weather and walks and even go up to the Black Canyon. I think walking there will be gorgeous right now.

 

 

 

 

How Did the Camino Change Me?

Everyone seems to want to know:  How did the Camino change you?

So far, I have had a few surprises upon my re-entry to the Ordinary World.  And that’s not even counting the fact that I recently bought a fresh red pepper for the first time in my life, and ate it, and enjoyed it.  In fact, I find that my appetite for healthy food has increased.

The First Surprise

During the walk across Spain, I longed for a good yoga stretch.  I’d grown so fond of my yoga classes over the last year and more that I really missed yoga while on the road.  On the road I was sure I’d never needed yoga more; after all, I was walking thirteen or more miles a day, with all that means for the legs and back, and I was carrying a pack, with all that means for the back and neck.  I imagined myself a stiff mass of bunched-up muscle and ligament.

So I was very excited to get to my first yoga class in about six weeks, in uptown Hoboken’s Devotion Yoga studio.

What I found surprised me.  Far from being rusty and out of

Balancing in Montauk, New York

practice, I was more balanced.  I could easily get into and hold balance poses that had been more difficult before the Camino.  As I flipped up into a crow pose and held it easily, I felt as if an Olympic gymnast had just taken over my body.

I may have even been more flexible, or unstuck, in other poses that I had never been able to do well — the upside-down wheel, for example, which something in my neck — the knots? — had always made difficult.  But here I was in the most complete wheel I’d ever done, as if my (tight, burdened?) shoulders had at last gotten out of the way.

Experienced yogis will say that the mat is a microcosm of life.  On the mat, you practice being comfortable with discomfort, you practice slowing your thoughts and (I think relatedly) your balance, and you practice being kind to yourself rather than abrupt or forcing.  You also practice concentration.  And all of these things will be directly reflected in your life off the mat.

But in my yoga class, I was finding that what I had done off the mat was affecting the yoga!  I was more mentally, emotionally, and physically balanced.  I may have also been more flexible, less tight.

I had already sensed that I did successfully slow down my thoughts on the Camino, and that I had fewer negative thoughts and emotions, but these things are hard to measure.  The yoga class was, happily, more objective – like stepping on a scale that measures How the Camino Changed Me.  You either fall over where you used to fall over, and struggle where you used to struggle – or you don’t.  And I wasn’t.

And because balance is a reflection of clarity of mind, I think my yoga session confirmed for me that I had somehow reached my goal of slowing down my mind, and with it, the negative thoughts that make for negative feeling.  With the mind racing less, the body can be still; with the mind less mired in anxiety, your body can be calm.  And you can balance yourself in ways you previously couldn’t.

What Caused These Changes?

So the question we need to be asking ourselves is this:  what was it about the last five weeks that put me into such a state of balance? The food?  Certainly not.  The sun?  There are many variables, of course, but here are the ones that I would hypothesize:  the meditativeness of walking; the exercise (and, yes, the sun, a known mood enhancer or anti-depressant); and the sense of purpose.  It’s this last, the sense of purpose, that interests me most.  Because what I want to do now is replicate it in my “real” life.

I want to figure out what I was doing on the Camino that can be brought back with me.  Because if I can’t do that, then a great deal of the value of the experience will be lost to me.

An Unfolding Surprise

While I was on the Camino, I wondered what it would be like to be off it.  Would I be, as Marie Anne always is after the end of a long walk, sad?  I wrote about this from Portugal, after we were done.  At the time, I did not feel sadness about being done.

But then, I wasn’t done.

Simply finishing the Camino did not mean I was done with what I call the Special World.  During our several days in Portugal, I was still away from my Ordinary World.  And so any reaction to the real world would have to wait.

Now that I’m back in the temporary life I was in just before I left for Spain – cooling my heels in and around New York — I’m starting to feel that reaction.

At the post office a few days ago I underwent a petty frustration, and by the time I got back into the car I almost had tears in my eyes.  Back at the apartment, I felt tears come up — frustration, I think, a kind of sadness that I had lost something, or perhaps a fear that I would not be able to find it again.  On the Camino I had felt an occasional annoyance and even anger, but I didn’t feel the kind of existential sadness I recognized early in the week.

I found myself resisting this, and then I found myself saying, Stop resisting.

The next day was different yet again.  I felt no sadness at all.  But I still felt some of what Mom wrapped up well earlier today, on the phone, after I’d said the return to the real world was sometimes a bit disorienting: “Yes, I know!  I don’t know what to do with myself!” she said.  “I walked to the post office, I made a salad and ate fruits again, I did the leaves, I went grocery shopping . . . My body is revved up and ready to go.”

I realize that there is a particular journey that is still going on, one that is not done yet.  I have been telling myself not to develop expectations of what I must be doing now that I am back.  I have been telling myself to stay on the Way – which unfolds only a day at a time.

So this is the challenge I have set myself (a hopeless type-A, I often do better if I call something a challenge):  to come to understand what it was about the Camino experience that made me feel less bad, less often, and made me feel very good, very often, and then to make sure my life after the Camino is designed as similarly as possible.

In the next post, I’ll talk about what I miss from the Camino.  And that may lead me closer to understanding what I had there that I must create here.

Bringing the Way to the Everyday World | Camino Not Chemo!

The Last Camino

December 18, 2014

On November 24, I stopped publishing my writings on my mom’s last camino. I have a number of theories about why that is, but one must surely be that I simply had nothing new to say, nor the same need or desire to say it. My mother’s decline simply went on and on, longer than any of us expected. It was inevitable that I’d adapt to the unfortunate situation just as we humans quickly adapt to (and take for granted) the good things in life. I could see that death was not as imminent as I had feared. That had made me feel a certain desperation in the first weeks, but I couldn’t sustain that intensity for so long. Maybe I had compassion fatigue.

Another theory is that my depression had lifted, and I began both to work more on my medical diagnostic startup and to have less desire, or need, to capture everything, to feel heard. I was not especially sad in the morning, nor did I walk through the outside world like a duckling who’d lost its mother. Why did my depression lift? I have read a lot of research on the power of cultivating positive emotion, how, in the words of Dr. Barbara Fredrickson, positivity broadens our cognition and creativity while building our resilience and immunity. For almost seven weeks now I have shown and felt more love and compassion and gratitude than for any similar period of time in my life. That may have lifted me in spite of myself.

Catching Up

Here is where we left off last month, ending with the latest as of Friday evening, December 19, 2014.

November 25, 2014

I don’t even know where I am.

You’re in your bed, Mom, in your living room, in your house.

You keep saying that.

* * *

Pain in my tummy, she says, crying.

I press the bolus button. I’m sorry, I say. It’s not your fault.

What if I partied too hard? she says. And got drunk all the time and –

You didn’t do any of that, Mom. You lived a good, honest life. You were a hard worker, you cared about people, you were always thoughtful and giving.

Then why doesn’t anybody visit me? she says.

I remind her that she’s constantly got visitors, and she can’t name anyone she wants to visit her who hasn’t.

* * *

She is tetchy. Tells me I speak to her very disrespectfully, then that I have an offensive tone. “I think you are mistaken,” I say. “That’s your opinion,” she says. She is peevish that I can’t hear her in the kitchen. She leans over with her big coffee mug full of coffee and I think she’s trying to set it on the floor. I reach out for it and she withdraws it quickly and gives me a stare I can’t figure out.

Later, she is frustrated with her nausea. “I wish I could just go away,” she says.

“Come here,” she says later, motioning me to come closer. I go to the bedside and she holds up her arms. I lean down to hug her and she says, with tears, “I’m sorry I’ve been so unbearable.” I tell her she’s not at all, and that no one thinks that. Regarding her inability to eat most food, she also apologized for being a “prima donna”. Again I told her that it wasn’t her fault and no one thought of her that way. We all loved her.

“I want to go home,” she says.

Hospice must not have seen their first How to Die book lying around, so they had brought another one. It says that with 1 to 2 weeks to live, a person uses “symbolic language” of “going home”.

“You want to go home?”

“Yes.”

I consider this. “Where is home?”

“Someplace not here,” she said.

* * *

I’m still not depressed. I trust this is a temporary state of affairs, but I’m curious about why. A kind of fatigue or numbness? Shock? Not denial, certainly. Since Peggie called me weeks ago I have had no hope. But I don’t go about my day in quite the same hopelessness and sadness. I can become sad very quickly – if I think about Mom’s psychological suffering, or what my life will be like afterward, or even something I’ve written down. The tell-tale humidity enters my nose, the lump that Mom calls Timothy lodges in my throat, and if I want not to cry I have to stop thinking about whatever I was thinking about.

* * *

November 26, 2014

We were up at about 2:30a.m. Mom went to the bathroom and took a milligram of Ativan. She was up again at about 8a.m. and asked for her coffee. As she drank it I asked her to take some more Ativan.

“What’s it for?” she asked.

“It helps you not to be nauseated,” I said.

“I don’t like not knowing what I’m taking.”

“You’ve taken it every few hours for over four weeks.”

“I want to see a piece of paper,” she said, and mimed words going across a piece of paper, “that says what it’s for.”

We went around on this for quite a while. It would be almost an hour before she agreed to take the Ativan. We’re lucky she didn’t vomit after drinking her coffee.

* * *

She seems to have awakened with less short-term memory in place than ever before. “What are we going to do today?” “I’d like to go somewhere.” “I want to go outside and read.”

“It’s cold outside, Mom. The last two times we took you out in your wheelchair it was warmer than today and you got cold.”

“You can dress me and we’ll go outside.”

“You can’t walk, Mom.”

“I can’t?” She struggles to absorb this.

Each discovery like a new blow. I was reminded of Bill Murray’s character in “Groundhog Day”. Each day begins anew, exactly as the day before, except for the new choices he makes. But Murray’s character remembers the previous days, and so is able to learn. My mother awakens each day into a nightmare of unremembered incapacitation.

The hospice nurse Deb asked Mom what she thinks about “this process” – of dying – and Mom said, “I don’t even know what process is going on.”

* * *

She talks of travel with friends, and “an ocean of pumpernickel”.

* * *

After I have reminded her of the situation she is in, she says, “You’re so stoical and it’s my LIFE we’re talking about.”

* * *

She looks at her glass mosaic lamp. “I remember how EXCITED I was to get the lamp. Through the lamp came three colors: yellow, green, green, and emerald.”

“How did you show up in my life? I didn’t just show up and say hello are you my son? I would have never ever ever ever left you alone.”

* * *

“Do I have a clear thought?”

“Sometimes you do.”

She begins to cry.

* * *

Nurse Deb says, “Are you excited for what’s next?”

Uh-oh.

“No,” Mom says. “I don’t even know what’s next.”

“You don’t know where you’re going next?”

“My whole life was taken overnight, not to be replaced by anything I know,” Mom says.

“Do you know heaven?”

Mom shuts down. “I don’t want to have this discussion,” she says. “I’m not having this discussion. I’m sorry.”

* * *

“I just want to go home,” she says. “Just get it over with.”

* * *

For two and a half hours this morning, my mother was more morose and dejected than I have ever seen her. Not crying, but seemingly utterly defeated. Nurse Deb mentioned something about Mom’s condition and Mom simply stared at her for a long time. Deb would later say, “I can see you’re angry, Inge.” Mom didn’t answer. “And I can understand why,” Deb added.

Deb met Mom a number of years ago, when Mom taught a class on cooking and culinary arts at the Rocky Mountain Academy, a private school that’s now shuttered. “In a very short time,” she tells Mom, “you made a huge impact on my daughters’ lives.” Deb has tears in her eyes. “At the worst time of their lives, you were there for them. And my oldest daughter is who she is and is doing what she’s doing in large part because of you.” Her daughter, who had taken Mom’s cooking and manners classes, is a professional baker. “She especially loved the manners you taught around eating. I’m so grateful that I could come here and see you this morning, Inge. I admire you so much. You are such a strong, brave, creative woman. I wish I had an ounce of your creative juices.”

* * *

“Pumpkin?” she calls. Once again the dog has gone into her bedroom and jumped up on the bed, where he has always slept. I go and fetch the dog. Madeline had given him a bath for the occasion, so he’s pleasantly fluffy. I put him down on Mom’s lap and she smiles. She says to Pumpkin, “Tomorrow I’ll have to give you treats.”

“Do you want me to get some of his baloney from the fridge?”

“That would be nice,” she says. Her smile is like direct sunlight after darkness.

She’s getting to do at least this one thing that she used to do before. It’s a happy moment, if you can catch it, and I was lucky enough to be paying attention to what had just happened. I cultivated gratitude then and there. One day I will be happy I did – that I had a moment that felt happy at the time rather than just in retrospect. May there be more such moments for both of us before she goes.

* * *

So we just threw ourselves into the very expensive popcorn, she says.

* * *

Adam calls. Mom gives me a thumbs-up. Later she chuckles at something. Again I can’t believe I’m seeing my mother happy. I can barely hear her chuckle and it sounds very different, but she is clearly enjoying a moment in time.

She hasn’t fully surrendered yet. Maybe she just can’t remember to.

* * *

Shall I wake up my arm or wake up Big Ben?

* * *

9:42a.m. She’s asleep again. Though I will say that if one sound can bring her out of her sleep, it’s the awful-to-her sound of me cracking my knuckles.

In the early evenings, not long after sundown, she will fall asleep. I watch a movie or work on my laptop from the emerald couch to her left. Sometimes I go into the spare bedroom so as not to worry about waking her. At around 11 or midnight I throw Mom’s bedroom comforter onto the reddish couch to which I’ve added a foamy couch-width layer of some kind of substance brought by hospice. It fits the couch perfectly, and it’s a lot more comfortable. Some nights, like tonight, I hear her making sounds that might mean she’s distressed, but I’m not sure. I ask the question.

Are you having pain?

Tonight, just now, she says “yes” and nods her head. I find the bolus and press the button. She groans a few times over three or four minutes and then falls asleep. It occurs to me that I’m lying in one of three places where Mom spent a lot of her time, and certainly most of her time in the house: this end of this couch. Well, it’s no big deal. But that is the sort of story that might bring me to nostalgia after she’s gone.

I read things on the web for a while. I hear Mom whimper. I press the button.

I stay up too late to reliably get seven and a half hours of sleep. This morning, for example, during what I hoped was a brief interlude of wakefulness before we went back to sleep, she said she wanted coffee. It was 7:30a.m., and I’d gone to bed at a little before 2a.m. I’m doing the same thing tonight. I suppose, for the same reason Americans refuse to carpool: it’s just the only really private, and unworried, time I have.

* * *

Thanksgiving November 27, 2014

Another night of pain the base level of hydromorphone drip can’t handle. Several times I awoke to hear her and to press the button. She whimpered. “Just make it go away.”

We woke up at a magisterial 10:20a.m.

“Happy Thanksgiving, Mom.”

She brightens. “Happy Thanksgiving.” A pause. “I didn’t intend to forget about it.”

“I know you didn’t, Mom. It’s okay to forget.”

* * *

“Would you like some tea?” I ask.

Her smile was beatific.

* * *

“Can you tell me, in complete sentences, what is going to happen?”

“What is going to happen when, Mom?”

“Today. What are we going to do? Are we going to get dressed, go outside, see a movie, or the dolphins, or – I just want to know something.”

* * *

Are you a doctor? she asks, for the second time.

No, but I’m a lawyer.

You can’t help me.

No, but the doctors couldn’t either.

She chuckles.

* * *

It feels like you’re holding me here.

No, Mom.

I don’t know what to think. I’m trying to be kind. But I don’t know for what purpose.

* * *

She has mentioned two things that don’t seem to relate to one another. I ask her what one has to do with the other. I am calm.

“I thought I might find a friend in you,” she says, “but I guess not.”

She has been like this today. She’s a little paranoid, hears disrespect and offense in neutral or even loving statements.

Picking at her primal wound.

* * *

The TV reminds her of someone’s sister being buried above Meeker. It becomes exhausting to ask her to repeat herself, see her annoyance or discouragement, hear what she’s saying, realize it makes no sense, and try to think of what to say that will not upset her. Sometimes, whether I have heard or understood her, I say, “I think that’s exactly right.”

* * *

Madeline’s daughter Kelly has offered to stay overnight with Mom to give me a break. She dropped by this evening to pick up Pumpkin and bring some Thanksgiving food. Mom wasn’t interested in eating. Kelly, who had also taken cooking and manners classes from my mother, kneeled next to the bed and took Mom’s hand and told her, “I think about you every day. I love you so much.” Mom’s eyes welled up.

Later, Mom said, “I know everything is difficult for me.” I didn’t hear what she said. Kelly repeated it.

“I know, Mom. A lot of things are difficult. But you don’t have to do anything now. Just give yourself a break. Forgive yourself.”

She turned her head away from me.

* * *

She goes to sleep at around six. I hear her whimper and pause the movie I’m watching to listen. No more sound. I press the button just to be sure. Moments later, she reaches for it herself and I tell her I already got it.

In my Facebook feed, our friend Michele had brought back a photo from late September by liking it. I liked it too. As I did so, it hit me that I will be most sad when I revisit old memories – in videos, pictures, prose, her Facebook page, my own mind. I’m not doing it now. At least partly because it’s premature, but also for lack of time.

* * *

November 28, 2014

She needed six straight pumps of her medication last night. We eventually slept in till around 10a.m. She vomited up green bile, more than I thought she could have in her. When she vomits it comes out through her nose, too. She was nauseated several times lately, but without having eaten anything.

She has been sleeping for at least half an hour. I hear her stir slightly and she says, “I don’t want to die anymore.” She’s silent for a moment and then she says something else. I don’t recall it, but it doesn’t seem to be related.

I am less tearful now, in less pain, and even, one could say, less compassionate. Or maybe it’s just excessive pity I’m no longer feeling? I certainly couldn’t have kept up with the pace I set in the first two weeks.

* * *

“I just shot two lynxes,” Mom says. She’s been dreaming.

I’m tired of blogging, or just have no interest right now. When events and emotions were changing quickly, I wanted to write. Now that Mom’s changes are subtler and smaller, now that my emotions are higher and more stable, there’s not much that interests me. It’s just going to be a waiting thing.

* * *

“Do you want to sleep now?”

She nods. “There’s nothing else to do anyway.”

“Except talk or watch TV. Or we could look at the Camino pictures now if you want to.”

She shakes her head. “That part of my life is over,” she says.

I feel chilled. Is this just self-pity or is she really not able to appreciate it anymore?

* * *

Lilyhammer. Does it have to be pressed?

What?

Does it have to be pressed? she says. She pushes an imaginary button in front of her.  She doesn’t know what has to be pressed to get the show started, but she knows there’s pressing that needs to go on.

* * *

November 29, 2014

2a.m. I’ve been pressing her pain pump. She asks to go to the bathroom – and then she wants to read, bless her heart. Is she able to understand? Will her eyes work? She’s said she can’t read text on the TV any longer.

“I’m a very avid reader,” she says, as if she were explaining her hobbies and interests on a game show. “And an even greater writer.” She’d never said anything like this. “Some people may think it’s not that great but I like it.”

I go through a number of books to find one she agrees on. I guess correctly that she has not read Doris Kearns Goodwin’s No Ordinary Time. She was never a reader of history or biography. She says she started it once, and it was an excellent book, and she’d like to start it again. I pull it out and hand it to her. I turn on the light behind her. For a few minutes she flips through some pages, stopping occasionally because her eyes are closed.

* * *

The nurse who came late, at my request, to increase Mom’s demand dosage from .2ml to .3 ml, mentioned a drug that will help with Mom’s agitation. I don’t know where she heard that Mom was agitated, but I was happy to know we might be able to reduce her irritability and paranoia.

* * *

November 30, 2014

It was a nice visit with Damon and Jannilyn. I left at a little before noon because Bonnie was ending her shift with Mom at 1p.m. When Silke arrived at a little after 3p.m., Mom woke up.

And then she, and we, went through her prognosis all over again. And she cried, and she cried.

* * *

6:40p.m. Mom woke up and began crying again. She looked at my face and started crying. I hugged her head close to me and placed my cheek against her head. It’s so hard to watch her keening. Not as hard as it would have been a few weeks ago. I have detachment now. Chemical, maybe. I’m more like Adam, the least sentimental person I know: This is part of the process. It’s sad but not tragic. It’ll hit me later.

* * *

I ask her, “What’re you thinking?”

“Oh, son.” She lifts her hand to the level of her forehead and waves it in circles for several seconds. “I don’t have a coherent thought,” she says.

This happens again at about 1:30a.m. The lights are out and I’m on the couch, unable to fall asleep, needing to wait to press Mom’s pain pump in any event. Mom begins crying vigorously. “Mom,” I say. “Are you having a dream?” She nods. “Do you want to talk about it?”

“Oh, son,” she says, and turns away.

I feel shut out. She has refused to talk about anything of depth because, I suppose, depth is now equivalent to death.

* * *

“Do you want some water?” I say.

She looks at me. “What does it matter, really?”

I don’t have an answer. I have thought the same thing: why would we force food or water on her? It’s not like it’s going to heal her, or extend her life by weeks or months. If she drank more she might live a day or two longer.

“It’s up to you, Mom,” I say.

* * *

She would later explain that she had died and people were late to her funeral. This was what she’d been dreaming, apparently. But at first she didn’t understand it as a dream. She said it wasn’t, but I repeated that she had been dreaming and she didn’t resist it further.

When Silke was here earlier I told Mom the Teal Warrior sisters had asked me to let her know that she shouldn’t stay on their account, for fear of disappointing them. Mom also cried about Candy and me. Silke told her we were mature and could handle it.

* * *

“Bin ich krank?” Mom asks.  Am I sick?

Silke and I say yes.

“Mit was?”  With what?

“Krebs,” I say.  Cancer.

“How much quality time do I have?” she asks, in German.

“We don’t know for sure,” I say. “We know that people can survive for two weeks without food, on just water, but you’re not drinking much water either.”

Unless I see evidence of some greater acceptance that may have come from repeating this for the third or fourth time, I may not tell her about her situation again without a strong reason.

* * *

She puts her hand on my face. “From your first breath,” she says. She’s gazing at me with so much love.

* * *

“I wanted more time,” she says to Silke and me. “More time to accept.”

* * *

“What is the etiquette for this?” she says.

“There is none,” Silke says.

“I feel I’m making a mess of it.”

“Not at all, Mom.”

“I just want to pack my things and go home.”

* * *

“What do they say is wrong with me?”

* * *

“Where is Brianna?” She’s crying.

“She’s in Alabama.”

“Does she have a job?”

“She just got one, I think.”

“Who hasn’t visited at all?”

Of course the answer is, Most of the people on the planet have not visited. What does she want to know? “All of your friends have visited,” I say. “Some of them come almost every day.”

* * *

“Why don’t you go in the spare room and go to bed,” she says. “I don’t want to feel guilty because I can’t go to sleep.”

“Well, I’m concerned about you having pain and not remembering to press the button.”

“I’ll find it right here,” she says, pointing correctly. “I’m just going to read.”

“Okay. I need to pick out a book for you then.”

“I can just browse on my own,” she says.

“No, Mom, you can’t.”

“Why not?” she says, astounded by my answer.

“You can’t walk.”

“I can’t?” she says. She’s genuinely amazed. “Have we had this conversation before?”

* * *

December 1, 2014

Since about yesterday, she has become very weepy, she sometimes speaks to me in German, and her body and especially her hands shake with a kind of palsy. She drank only a small portion of her 6-ounce water bottle yesterday.

“Who is paying my finances?” she asked this morning. “The utilities, electric –“

“I am, Mom. There’s nothing to worry about.”

“I still need to know how much it is so I can pay you back.”

* * *

“I don’t even know where I’ve been the last few months.”

* * *

December 2, 2014

And today I wrote nothing.

I worry about getting used to this routine. I suppose over five weeks of this may have worn me out, caused me to begin to conserve energy, or sanity. Either way, it weighs on my mind.

* * *

Mom ate two small bowls of chicken noodle soup. I thought of one of the nurses yesterday, telling Mom, “You’re a tough woman, Inge.” I gathered the nurse thought she was hanging on longer than expected.

* * *

December 3, 2014

Every time I open my mouth I wonder if I can trust you.

Well, I’m the same trustworthy son you’ve always known.

That’s what you say, but there are trust issues.

* * *

“If you didn’t think I was your mother, I wouldn’t be worth anything.” Something like that. The syntax was a bit different, but I think this is what she meant.

* * *

I’d been helping her out. “Thank you,” she whispered.

“Thank you,” I said, “for being my mom.”

Such a grand smile crept across her face, and she opened her arms for a hug.

* * *

December 4, 2014 6:18a.m.

I’ve been up for an hour with Mom. She has such pain in her abdomen that she was crying, again. I hit her pain pump, gave her some morphine (a mistake?), and renewed her Ativan and the other thing, Halo-something.

“I been thinking,” she says, “about comparing the good colors with the evil colors.”

“What are the evil colors?”

“There are also safe colors,” she says.

“What are the safe colors?”

“Yellow,” she says.

“Yellow is a safe color?”

“Well,” she says, “I wouldn’t say safe, but you can rest a while.”

“What are some good colors?”

“Temerald green,” she says.

“Emerald green?”

“No, not emerald, temerald.” She thinks for a moment. “Did I dream that?”

* * *

December 6, 2014

“Who says that is good for me?” she says, referring to the Ativan I’m offering her.

“Well, the nurses do and I do.”

“Who are you?”

“I’m your son.”

“You’re not my son. My son would be frantic with worry. My son would be kind and compassionate. My son would offer me food.”

This followed her crying “Rudeness!” when I took a cup out of her hand so she didn’t have to risk falling out of bed to set it on the floor.

* * *

In the middle of last night, Adam and I are both up. Adam was up with Mom first, and I took over to sit her on the toilet. Adam retreats to the kitchen and I follow. We talk for a while, and then I hear Mom sobbing. I walk into the living room. “Are you okay, Mom? Are you in pain?”

She shakes her head. “It’s just fear,” she says. She’s been prickly so I don’t ask her fear of what. Besides, most human beings would say she had plenty to be afraid of.

* * *

With Adam here to watch Mom, Alex and I drove to Telluride in his rental car. Alex, one of

Alejandro and Cameron in Telluride

Alejandro and Cameron in Telluride

my best friends from law school, had arrived on Thursday night from the Dominican Republic, and would go back early Monday morning.  We had a few hours of really nice skiing under lifts 4, 5, and 6. I’m so out of shape. Six weeks of sedentariness. My thighs gave out early. We went to the Brown Dog for pizza. Then we drove home, tired as could be. Probably some altitude effects there. Alex and I began to watch a movie at about 7p.m. but at about 8p.m. he begged off, saying he was going back to his hotel to sleep. He leaves already tomorrow to spend his last night in Grand Junction.

But how to capture the gesture he made, a guy without a lot of time to spend away from work and family, traveling for longer than it would have taken for him to get to Eastern Europe? I’m grateful, and I’m also happy that he (surely) feels better for having come. He said he’s seen how his mother never really recovered from the deaths of her parents, so he felt he had some insight into what I must be going through.

That’s empathy.

* * *

I remain almost disturbingly sanguine. I seem to have accepted reality far more quickly than I’d have imagined.

* * *

December 7, 2014

Alejandro has gone. He came to the house this morning at around ten, we hung out together with Adam for a while, and then he drove Adam to the urgent care to check on a staph infection. Not long afterward Bonnie came to watch Mom and we three boys went to Starbucks, where I showed Adam and Alex the rough video of my company’s differential diagnosis

Adam, Alex, and Cameron at the Black Canyon

Adam, Alex, and Cameron at the Black Canyon

product, and then, because we still had time but nothing to do with our hands, we went to Horsefly, a bar across from Coffee Trader. And then to the Black Canyon, whose steep walls in the coming dusk they both enjoyed. “Thank you, Cameron,” Alex said.

* * *

Back at home I was happy to have Alex join me in a movie, though we said almost nothing during it. I’d never heard of “Detachment,” with Adrien Brody, but it was very good. It was late, and Alex said he’d be leaving for Grand Junction soon. As Alex was in the kitchen giving Adam his new contact information, I was standing by the front door, ready to give him a hug and escort him out. But they were taking longer than I thought they would, and I decided I wanted to watch my mother sleep. I stood there watching her, and after a while I began to cry.

She opened her eyes and I leaned down to hug her and kiss her head, and also to hide my eyes from her. She made some cooing sounds and stroked my arm. “What’s the matter, son?” she said, tenderly.  How did she know?

“I’m okay,” I said, because it seemed better than saying, “Nothing.”

I hugged her some more and kissed her. By now Alex was watching us. I stood up and he saw my face. He reached for her hand in both of his and said goodbye, and said something like, “Bless you.”

I walked ahead of him out the door.

“It’s tough,” he said.

“I think that movie softened me up,” I said, laughing.

“Me too,” he said. I heard him sniff. He took his glasses off and began to clean them.

I wondered why I was still standing there. I moved to hug Alex. “I’m so grateful you came,” I said. We both shook as we cried. I could feel his belly contracting with the same kind of silent tears I shed. “You’re a real friend,” I said.

“You are too.”

We hugged for a good long while. “Keep us posted,” he said.

“Yeah,” I said, and, remembering that some of the Teal Warriors had said my last post was on November 21 and they feared the worst, I added, “I know I’ve left people hanging with the blog.”

He told me not to worry about that, but to keep him updated. “Even if it’s something short,” he said.

And then he was off to the Caribbean.

* * *

December 9 (really 10, at 1:24a.m.), 2014

This morning I showed her pictures from her Facebook feed. A warm orange-yellow sunset over the ocean. A picture of Carrie, now living in Nebraska. “Gorgeous,” Mom murmured. She gazed at these with such wonder and gratitude. I started showing her videos. A dog that walked (or appeared to) on its front legs, its body in the air, while pissing on the sidewalk. A baby chimp clutching a stuffed-animal baby chimp. I was sitting on the emerald couch and holding the phone’s screen toward her, so that she watched the video with the open curiosity of a child and I watched her beautiful face and shining eyes. I read people’s comments on her Facebook page. I spoke in different voices and made everything sound better, or explained or summarized things to sound wonderful. I noticed she didn’t respond as much as she did a few weeks ago.

* * *

December 11, 2014   From Telluride, brief overnight visit

Slept in a bit, dehydrated from karaoke the night before, and got up at around 10:20a.m. I then spent a few hours cleaning up the condo for holiday guests before driving back to Montrose. Adam said Inge Bell had decided to stay the night, and that Mom had awakened in the middle of the night and was obstreperous and paranoid. Very difficult. Suzanne said this sounds like “terminal restlessness.”

Mom said, when she saw Suzanne, “I’m glad it’s you.”

Mom said she hurts all over. “Why does it have to be this way?” she asked Suzanne, who told her that she appreciated Mom’s example and her grace.

“She doesn’t want to go,” Suzanne, said, “she’s just really bummed. She got some peace during that conversation.”

“The folks who usually go down kicking and screaming are strong-willed and they’re women,” Suzanne told me. “Maybe because of all the obstacles they have to overcome. Your mom definitely falls into that category.”

But she refused to take the liquid bowel care medicine or a suppository. Suzanne gave her a choice among those two and hurting and Mom chose not to take the medication.

* * *

11:25p.m. Nurse Suzanne, I have learned from Adam, more than doubled Mom’s base dose. Suzanne thought Mom had crossed a line between consciousness and comfort, and she needed to be less conscious. Indeed, Mom hasn’t been able to sit up, wake up, or say much of anything since I arrived 10 hours ago. “Why are you so loving to me?” was her sole sentence of the day.

“Because you’re lovable,” I said, bearing in mind her primal wound, hoping I could somehow reach her more effectively now than at any other time in her life. “Because I love you. You’re worth loving.”

It is . . . something (sad? Buddhists say no) that I have been feeling my mother’s face and hair and holding her hand more in the last few weeks than in the rest of my life together. Kissing her, calling her sweetheart. I think her insecurities caused her to push people away at times.

* * *

I was concerned that so much mouth breathing during sleep would really dehydrate her.

“Are you thirsty, Mom?” I asked this several times. She shook her head at the first. At the second she simply stared ahead, vacantly.

* * *

I have had a few moments of sadness. In the car on the way from Telluride. In the house as I watched her and reflected on “terminal restlessness” or how she doesn’t want to die, even now.

* * *

She reached an arm up. The gesture wasn’t clear but I had the feeling she was seeking a hug. I leaned down and hugged her, and she reached up, this woman who was unable to wake up or respond to questions, and wrapped both arms around my torso, holding them there herself. After a long hug I stood up and caressed her face and her head. It’s now something you’d think of, I suppose, as a skull. The bones that give a skull its shape are to her face as a mountain range is to the plains on either side.

* * *

My having nothing to say in my blog after late November coincided with a surprising lift in my mood. How could I be less depressed, less sad, less anxious as my mother’s condition worsened? But there I was, trying out a number of theories to explain why. Acceptance? Had I, as humans do, adapted to a new normal? I had found a routine in the midst of things. Or maybe I just recognized her less and less? Or medication that included thyroid pills was working.

* * *

The routine left the stage of her bedroom and stuck to the stage that was the hospital bed in the living room. We stopped walking her to the bathroom and instead helped her to step out of bed, turn around about 120 degrees, and sit on the portable commode. (How many people who have used that commode have died within weeks or days?) She was able to eat fewer and fewer things, even as she complained of hunger and blamed others for not bringing her something she could eat, whatever that was. For about the last week, she has probably not consumed and kept down more than a spoonful of anything. She’s not even drinking much water. How can a person survive for weeks on less than six ounces a day? In a dry climate? And now she sleeps without cease and breathes out over and over through her mouth.

* * *

Sometimes there is a long pause between her breaths. Some are only five seconds, but some are seven, even ten. Ten seconds between her out-breath and her in-breath.
Our friend Michele texted from the Middle East to tell me that she wanted to visit Mom again. She didn’t care that Mom might not be able to talk, and didn’t seem dissuaded by the prospect of arriving (next weekend) after Mom had already passed away. “For support,” she said. And, she added, because the love between my mother and me had inspired her to go to her own mother, herself with Stage 4 breast cancer. Her mother had abused her, physically and emotionally. When Michele was 14 her mother threatened to kill her over a dish of food. “My world changed completely,” she said. I told her that Mom had suffered a similarly arbitrary act from her father that propelled her out of the house.  Imagine how bad home must have been when she all but ran from it at the age of 15.

How on earth did Mom manage to live with Opa, in Germany, when I was an infant? She was only 23, 24 years old, just a stone’s throw from the terrified 15-year-old who had spirited herself to safety.

* * *

December 12, 2014

My master Samuel Beckett once wrote a good friend, a producer of BBC Radio, after her estranged husband died.

All I could say, and much more, and much better, you will have said to yourself long ago. And I have so little light and wisdom in me, when it comes to such disaster, that I can see nothing for us but the old earth turning onward and time feasting on our suffering along with the rest. Somewhere at the heart of the gales of grief (and of love too, I’ve been told) already they have blown themselves out.

* * *

“Would you just . . . stop talking? Leave me alone?” She was nearly as obstreperous tonight, but not as bad as Wednesday night, when she pinched and bit Adam and Inge Bell and threatened to call the police on these people who were holding her in this house against her will. Today she was sedated with both painkillers (the dosage had gone from .45ml an hour to 1.0ml an hour) and the two relaxant medications. Perhaps selfishly, I asked Nurse Suzanne to dial the painkiller down to .9. Several hours later, Mom and I had some tender moments.

* * *

The next time she woke up, she was sitting on the edge of the bed. I ran out to help her use the commode. She sat there for quite a while, that vacant look on her face, queerly expressionless, along with her disinclination or inability to speak much. Separated by several minutes each, she peed four or five streams. At last I sat her on the bed and there she would sit, stubbornly, falling asleep while sitting, falling backwards, but refusing to lie back in the bed. “I want to go to sleep,” she’d say, and no sooner had I stood up and repeated, “You want to go to sleep?” than she would shake her head or say “no”. When Adam or I offered her water or help getting in bed, she was prickly. And she refused to take her relaxant medication. We went ‘round like this.

* * *

December 13, 2014

Mom was up and restless from about 5:30, when Adam called me out because Mom was trying to get out on the wrong side of the bed, to a little after 7. She spent most of that time sitting, as before, on the edge of the bed. “This will be another indecision marathon,” I said to Adam. He nodded. Once again she would not either go to the bathroom or lie back down in bed, and once again she kept saying she wanted to go to sleep, or wanted to go to the bathroom, and I’d stand up and repeat what she’d said and she would shake her head or say “no”. And she was still refusing to take her sublingual drops. Adam and I have been dropping them in while she sleeps, and trying not to get caught.

* * *

“Who are you?” she asked, after she’d awakened in the early afternoon.

“I’m your son.”

“Aww,” Berle said, and to Mom, “That’s Prince Cameron, Inge.”

* * *

I still have more tics when I’m out of the house.

* * *

At a little after five I got into bed next to Mom, squeezing myself between her shoulder and the railing. With my left hand I held her left, while I reached my right arm across her chest and my right hand cupping the side of her face. I listened to her breathing, once even a light snore like old times, and I tried to imagine not hearing any such thing, being alone in my Telluride condo, or here, or a hotel room, and knowing I would never see or hear my mother again. It’s just such scenarios that get the waterworks going. But I also feel the gratitude: it hasn’t happened yet, she’s still here. I imagined a dream in which I touched my mother in the same way, and then woke up. I felt the difference between the slicing pain of waking up and realizing it was all a dream and waking up and thinking she’s right here with me now, just as in the dream, hallelujah.

* * *

Berle told me her father died five years ago and it still just kills her. She said it took two years before she stopped crying regularly.

* * *

I walked into the living room a little after midnight. Mom was on the floor between the bed and the reddish couch. “What are you doing, Mom?” Adam was coming out of the other bedroom. We got her back on the bed. She talked about birds. Yesterday, she’d said she had a cat. Still, she’d recently come out of sleep and asked me not to crack my knuckles, something she’s been complaining about for about 40 years.

* * *

Tonight she was speaking in German, and I spoke German back.

She said something about getting spanked when you get home.

“Did this happen in Germany?” I said. I think she said yes.

“I’ve really got to get home,” she said. It was the second time in half an hour that she’d talked about going home. I told her she could go whenever she wanted. I’d be okay.

* * *

It is well-documented that observing others in a particular emotional state automatically triggers the representation of that state in the observer (Dimberg & Thunberg, 1998).

* * *

December 14, 2014

I began last night in my bed (Adam was snoring in the living room), switched to the couch after we got up with Mom and Adam went into Mom’s bedroom, and was awakened from the couch by Mom moving toward the edge of the bed. Bonnie came over. Mom asked who I was. But she also smiled when I kissed her head over and over. “She’s smiling,” Bonnie said, with joy.

8:58p.m. I sit sometimes and look at her. Sometimes I do Tonglen. If I start thinking at all, especially of my future, without her, wishing she could see and experience what I am, my eyes fill up.

Wishing she could be here to experience more joy, that she could have experienced more joy, will, I think, be the hardest on me.

* * *

I thought I read somewhere that when someone is close to death, their eyes become “glassy”. Mom’s eyes are definitely different in their sheen, and they often focus at random places before her – even when I am trying to direct her attention to a particular thing, like the marijuana pipe or water bottle.

* * *

December 15, 2014

Mom has been all but unable to speak all day, and as of 9:30p.m., it has gotten worse. Her stays on the commode get longer and longer. For some reason she keeps getting out on the wrong side of the bed, and then it’s nearly impossible to persuade her to go back across the bed to the commode. She either freezes and continually says, “In a minute”, or she tries to get out on the wrong side of the bed, as if she thinks she’s going all the way around – or is just suffering too much short-term memory loss coupled with disorientation.

* * *

She calls Adam “son”.

* * *

I say, Are you in physical pain?

No.

Psychological pain?

No.

You’re not feeling a little angry or anxious or sad?

No response.

* * *

Nurse Suzanne nods toward my restless mother and says, “Is the new medication amount working for you?”

“She has hardly had any pain that required us to hit the pain pump and she’s still alert at times.”

“I mean are you okay with the behavior?” I look at her dumbly. “Some people aren’t,” she says.

“So they medicate their parents?” I said, bewildered. “Because they can’t just slow down, or manage their emotions?”

* * *

Sometimes I just park across from her and watch her. I look at the physical, pharmaceutical, and cognitive ravages to her face and neck and the erector set of her bones everywhere.Her right eye and the right half of her mouth droop open more than her left.

It’s as if she wants to jump in the air and hike across someone’s country and cook a meal for twenty, but all she can do, instead, is to sit on the edge of the bed. It’s a compromise between body and spirit.

For the first time ever, she’s now refusing her medical marijuana against nausea.  Adam and I talk about how much certain things make sense or are good for her, in hopes she’ll overhear and understand and be persuaded.

“You used to love your medical marijuana. You were always posting on Facebook and evangelizing about it.” I take a puff from her glass pipe. “Oh, man, I feel less sick already.”

Adam says, “And all the cool kids are doing it. Look, Inge, I’ll do it if you’ll do it.”

We have no evidence this has ever worked.

* * *

She lifts up a red box of tissues and drinks from it.

“Are you thirsty, Mom?”

“Very,” she says, in that slight wheeze.

“I’ve got water right here.”

“It better be water,” she says.

* * *

December 16, 2014

Adam left just after noon.  Lately he had taken to calling her “sweetheart” and “my beautiful Inge”.

* * *

I return from an errand and see a lot of people sitting in the living room with Mom. Bonnie, of course, but now also Peggie, another Bonnie, and a young guy named Trevor. Turns out I’d met Trevor at Peggie’s ranch a few months ago. He was kneeling on the floor next to Mom’s bed, on the emerald couch side, and eventually I noticed that he was crying.

Peggie said to me, “He learned German with your mom, took her cooking classes – they go back.”

Trevor got up to leave soon afterward. He went around to the other side of the bed, which Mom was closer to. He leaned down and hugged her and touched her and my eyes teared up because he was an age I used to be, and he was crying.

Bonnie cried today too. She said she usually holds it together until she’s at home – “I’m a shower crier” – but today had been different. She was also crying when she left this evening. She said she wanted a hug and said something to the effect that I had given her or made her feel something very special in the last few weeks, but I can’t recall what it was. Aunt Christa said, by phone from Germany, that I was “grossartig,” which means, according to Google, magnificent, fabulous, gorgeous, sublime, and whatnot. Fiona had made the call, listened to my update in English, and then given the phone to Christa, who, Fiona said, was having a hard time. She’s watching her family disappear, really. Renate and Mom and Horst all in less than a year. So am I.

* * *

She always wanted to be loved, and she was. I’d like to think she knew it, in the end.

* * *

With about four weeks to go, cancer took her curiosity, and the questions largely ceased.

* * *

I would do this again. For my mother, for others. If there is anything that is God’s work, it’s showering love upon the dying. Love is healing, and the more love, the more healing. Hospice workers are lucky: they get to express love and compassion five days a week. Mother Theresa may have said that if you wanted to stop being depressed or improve your life, you had only to be of service to others. She also said something I think my mother and I both intuitively understood: “Loneliness and the feeling of being unwanted is the most terrible poverty.” And: “The hunger for love is much more difficult to remove than the hunger for bread.”

And this gem: “Let us not be satisfied with just giving money. Money is not enough, money can be got, but they need your hearts to love them. So, spread your love everywhere you go.”

* * *

December 17, 2014

Recently, some of Mom’s friends have taken to telling me they love me. Now that I can actually work, they’re even relieving me at home so I can go to Starbucks for a few hours of work. Bonnie in particular. “Get out of here!” she’ll say. “Go do something.” Yesterday after Trevor left Peggie broke down crying. She said she’d been having a really tough time lately with Mom’s imminent death. (Things have changed so much in the last two months that I can write that matter-of-factly. Before, I’d have been freaked out to contemplate it.) I sat on the couch with her and hugged her close as she let herself cry.

Mom is refusing her medicine again. That’s hard on me, as Adam pointed out to me. I feel like it would be abuse to force it on her, but then she will suffer more without it. Bonnie was more forceful, and got in a milliliter of Ativan.

Mom had apparently nodded yes to whether the chaplain might come, so he came today – really nice guy – and as I showered I realized he was singing “Silent Night”. I had just been thinking of finding the German lyrics of “Stille Nacht” to sing to her. Even before my mother’s health became an issue, I could cry while singing that song by myself. And now it may well be that she will choose Christmas, or Christmas Eve, for her time to leave. I suppose the association makes sense. Candy and I already associate Mom with a special kind of German Christmas.

Ten or so days ago, Mom stopped really getting any sustenance. She would still say she was hungry, but most of the time she’d veto whatever we mentioned or brought out to her. When she did try to eat something, I’d find the forkful or spoonful of food still orbiting her mouth, unswallowed, for quite a while afterward. For the last few days, she has expressed no hunger, and has eaten nothing. When she drank water, she almost always choked a little. For several weeks now she has taken in so little water that I marvel a person can survive. A few ounces a day? Two days ago that changed: she drank more water than in the prior three weeks combined.

She is more likely to become obstreperous, or the new consciousness that used to be Mom’s is, the one demanded of Adam and Inge that she be allowed to leave, threatened to call the police, and even tried to pinch and bite them. On Wednesday night she did the same with me for not hearing what she was saying. “I’m gonna call the police.” And after I couldn’t understand something she’d said: “God, I’m going to a hotel.” I had to laugh.

* * *

She would awaken and mumble something.

“Do you need water?” I’d ask. “To pee?”

“Pee.”

She’d sit up. Adam or I would prepare to help her off the bed.

Then she’d wave us off. “Not now!” or “In a minute.”

She might sit there for half an hour, forty-five minutes, and while she did we couldn’t go anywhere. Questions about whether she was ready, or whether she wanted to go back to bed, were ill-received. I understand that this negativity and restlessness or agitation hits many of the dying across the board, but I have wondered if hers has not followed some of its old courses. The exasperation, the defensiveness and prickliness, the victimhood, the annoyance and even anger when asked a question or given a suggestion.  The little girl who had been told (she once told me) that she was stupid and ugly and no man would ever love her — she was still inside.

“Don’t you touch me!” she said to me, one could call it a snarl, four nights ago, as Adam and I tried to help her out of the bed. I hadn’t heard that particular voice, I think, since I was a kid. It’s not the fullness of her speaking, so I don’t take it personally.

* * *

About two weeks ago, Bonnie said my mother wanted to talk to me. I went to the bedside and she said, “I’ve done a lot of wrong by you.” I said not at all, and that she should forgive herself. “I want you to forgive me,” she said.

“Mom, I have already forgiven you. A long time ago. I just love you, unconditionally.”

Bonnie said her face relaxed then.

* * *

Today, hospice nurse Suzanne told Bonnie, Lynne, and me that she thought Mom had another 48 hours or so. For the last two weeks I’d thought we were 1-2 weeks away, but this news, and the concreteness of an actual date (Saturday morning!), caught me by surprise.

“I thought you said she had three to nine days after her urine output stopped,” I said.

“I know,” she said, “but I’m seeing other things, like all the pain medication she’s needing, and her terminal restlessness and agitation.”

* * *

Bonnie and Lynne and I talked afterward.

“Whenever I imagined how this would go,” I said, “I saw her talking more about death and what would come after, for her and for us. She got that do-not-resuscitate living will a long time ago. She prepared all these other documents and put them in binders. She told us the combination to the safe and the PIN to her bank account.  She told us she wanted to be cremated and have the ashes spread over the Black Canyon. Even a few weeks ago she was concerned about the right people getting her things. But she hasn’t said anything about it lately, nothing about where she’s going or her feelings about it or what I or anyone will do afterward.”

Bonnie agreed. “She just doesn’t want to talk about it at all. It surprises me, too. But she just doesn’t want to go.”

“I don’t know if there’s some conversation I’ll regret not having. But I don’t think so.”

“Cameron,” Bonnie said, “I think everything your mother wanted to say to you she said.”

* * *

I learned that Mom often told her visiting friends, perhaps more than once each, about my having given her a flatscreen TV and a computer and a tablet and an iPhone and, recently, a Samsung phone. “She was so grateful for all that,” Bonnie said.

* * *

“You have taught me a great deal,” Bonnie said.

I looked up at her. “Really?”

“Absolutely. I’ve seen your calm, and your compassion. You showed me that it was okay to laugh and it was okay to cry. And,” she added, referring to a conversation I’d had with my mom about three months ago, “that I could gracefully leave a conversation without having to prove I was right or make someone see sense. I was so impressed when you calmly left the hospital room when you were trying to talk to your mom about things and she was resisting so much.”

“I don’t always do that,” I said. Which was probably an understatement.

“I got in a lot of trouble after you left,” she said. “Your mom looked at me and said, ‘And you! I’m mad at you. You didn’t even stand up for me.’ And I said, ‘Well, I can see where he’s coming from.’”

Bonnie stayed till mid-afternoon. I went to Starbucks for a few hours. Peggie relieved Bonnie. Lynne came over during Bonnie’s stay. Another Bonnie whom I’ve never met has been very helpful and caring since she got here.  She offered to come anytime, day or night. Madeline told me I was always welcome in her home. Bonnie had told me the same.

Peggie read a children’s book that involves heaven (can’t recall title) to Mom. “Are you ready to go, Inge? Do you want to go home?”

Peggie said that Mom nodded. New Bonnie affirmed it.

* * *

When I got back from Starbucks, and saw that Peggie was here and looked so serious and Mom’s gaunt bony face was pointed at the sky and her eyelids haven’t been closing all the way lately, before I knew it I started to cry. Peggie said to sit next to her and gave me a hug.

Still, it’s the aftermath that I’m worried about. I’ve been lonely enough for the past five years of separations and uncertainties and several different places to call home. How will I be afterward, without the original center of the solar system around?

What the master does better than we do is to proceed through uncertainty.

* * *

December 19, 2014 The Last Camino

Mom was mostly unconscious and unresponsive last night, and I could have slept in the bedroom without worry, but with the clock ticking I didn’t want to spend so many hours apart from her. I slept on the couch within arm’s reach of her bed again, getting to sleep sometime after 1a.m.

At about 6:30, when it was still dark, I woke up. I must have heard her in my sleep. The slight gargling in her breathing that we’d heard last night was now loud, ragged. It sounded terrible, the glottal, mucousy gurgling. I could have heard it anywhere in the house.

I raised the head of her bed. I got a sponge on a stick, and three or four times dipped it in water and squeezed it into her mouth. She moved her head slightly when I cleaned her parched lips. Her breaths were shallow and quick. Her hands were hot. Her forehead too. I texted this information to Bonnie, Berle, Peggie, Lynne, and Adam.

Mom was not at all responsive.  I brought out the big guns:  as I watched her face, I cracked all of my knuckles.

Nothing.

It was about ten minutes before it hit me: This sound is what they call the death rattle.

I looked it up to be sure.

A death rattle, known clinically as terminal respiratory secretions . . . is a sound often produced by someone who is near death when fluids such as saliva and bronchial secretions accumulate in the throat and upper chest.

Each description I found added that the sound was often very disturbing to family members, but it was not uncomfortable for the dying.  That all seemed to fit.

Oh, boy, here we go.

* * *

I climbed into the bed next to her, held her hand, kissed her head. Her hand was limp now. Her body like a furnace against my leg. I wept, quietly, unobtrusively, as usual, in case she could still hear and understand anything and worry about me.

For almost forty-eight years she’d been as constant as the sun and moon.

* * *

A text from Peggie. I’ll get dressed and be right over.

Peggie arrived at a quarter after seven. She talked to Mom about her strength, how she’d fought bravely and hard, and now she could go, she could just let go. She read from Psalms. There were a lot of praise the Lords. I wondered if that was too many praise the Lords for Mom. I found the “Do Not Weep at My Grave” poem and read it to Mom. Peggie said she saw tears leave Mom’s eyes.

Bonnie, who goes to work in Grand Junction on Fridays, had texted me, Cameron. I can’t come. I love you both. Please remind her that heart friends go on forever. And that I love her most. But she was here for ten minutes before I saw the text. “I was just called to come here, I had to pay attention.”

By now, Mom’s breathing was barely audible. She seemed much more peaceful now.

We found a German Christmas song on YouTube and played it for her. I played some of the videos I’d taken during the Camino – her singing a German folk song while walking, poles clacking along (here, again, she sings the same song almost exactly 3 years later); the Mourning Tenor of Los Arcos who had so touched her with his three different versions of Ave Maria, sung in a nearly empty church, in honor of his son; the Spanish woman playing the flying-saucer-like hang instrument; and the glorious scene of her spinning round and round in the great plaza of Santiago de Compostela:

Bonnie left and Peggie stayed on, encouraging me to go back to sleep. I wanted to write, but as I lay down on the reddish couch I found I couldn’t keep my eyes open.

* * *

Bonnie from the Plains, as she calls herself, arrived while I was sleeping and, according to Peggie, while Mom and I were both snoring, side by side.

When I awoke, Peggie was gone. Bonnie from the Plains sat on the opposite couch. She had just come back to Montrose from helping her husband, a dentist, do pro bono work for the Sioux tribe on the Standing Rock reservation in South Dakota. She said she had met Mom years ago through Peggie.

Peggie had said a few months ago, “Your mom is like a mother to me. Even though she’s not old enough to be.” Bonnie from the Plains said, “You know, your mom wasn’t that much older than Peggie, but Peggie had lost her mother a long time before and your mother just took her under her wing. That’s just how she was. A beautiful, classy lady.”

* * *

Nurse Suzanne arrived. After her divorce she had given herself the surname of Onelove.

“You know,” she said, “as a traveling nurse, I come into a lot of different families and get dropped into this great intimacy. This has been one of those that reminds me why I do this.”

“What’s different about them?” I asked.

“Some sort of heart connection,” she said. “With Inge, there’s a spiritual connection, and the way she’s like Lady Godiva, always out front, leading, saying to hell with rules that don’t make sense. She’s special. So thank you for sharing her.”

She continued. “One of the biggest gifts I got from Inge is that it’s okay to be normal, and you can still be special. She reminded me of that life lesson.”

Suzanne now checked Mom’s vitals.

“She’s tachy,” said Suzanne, referring to an abnormally fast heartbeat. It was about 110.  “She has a slight fever, which is normal. She’s breathing 28 times a minute. Twelve to twenty is normal breathing.”

Twenty-eight, I thought, was probably closer to her respiration on that first day of climbing over the Pyrenees a little over three years ago.  Almost 20 miles, up and down only, with a pack.

Suzanne took her blood pressure. “It’s 80 over something I can’t hear,” she said.

In the midst of the hubbub, I worked to finish writing this update for the many readers I left hanging in late November. Some have even written me privately or posted in the Teal Warriors Facebook group to ask me what was happening.

I hold her hand or kiss her head and eyelids every so often.

About half an hour ago, she was as responsive as I’ve seen her in a while.  She was conscious of my hug, squeezed my hand.

“I love you so much, Mom.  And I’m so glad I’ll be able to feel your presence every day.  I’ll be okay.  You go home whenever you need to.”  Now I was crying.

It was like one of those dreams you have after someone has died, when they’re alive again, for just a few, bittersweet moments.

Mom Rides Into the Sunset in her Wheelchair

Updated as of 5:15p.m., December 19, 2014

Not Enough World and Not Enough Time

November 10, 2014  Cont’d

6:55p.m. Today felt a bit more blah than yesterday. Aggravation with landlord. Mom’s complaints and my telling her she sounds like an ingrate. “Oh, kick me when I’m down,” she said. “I’m not kicking you,” I said. “I’m holding you accountable: I don’t deserve this. I know you’re angry but please find something else to take it out on.”

I was in another room when she called my name. “What?” I said.

“Are you upset with me?”

Was I? No. Wouldn’t be good to say yes even if I was. “No.” I walked into the living room. “I just want you to be mindful of the people around you. We’re on your side.”

* * *

Five minutes ago may have marked the first time since this crisis began that I found myself wondering how I could endure. And I think the reason I wondered that is that I first noticed how Mom can still move her legs, still stand with help and for a little while, and it occurred to me that we could be doing this for weeks, months. Can I do this that long?

I need to settle into a rhythm, and to have no attachments. If we must both suffer longer, then suffer we shall. There is no getting out of it.

But I also feel fear. I imagine how much she will suffer when she loses the use of her legs. And when would she no longer be able to eat? The hospice nurse said last week that Mom would only be able to keep down broth, but she’s still eating. Though not much today. Yesterday was relatively abundant eating for her, but today was light. Vomited twice this morning. My theory is that it had been almost six hours since her last Ativan when she hit her pain pump twice in a row and drank some coffee. I thought of these additional steps, each a descent into the hell that can exist on earth.

I brought her coffee.  “Oh, small pleasures,” she said. She would later tell Berle and Adam, with half-joking amazement, “My son made me a perfect cup of coffee this morning.” And this in spite of the fact that I had not known about her habit of pouring hot water in the mug so that the mug doesn’t cool off the coffee. Mom likes everything hot. I can’t remember if she was always like that and I just didn’t notice, or if this is a new thing. But everything we bring her should be near boiling.

The tenderest moment I will have ever shared with my mother happens when I hug her gently up off her bed. She is so light, so fragile and vulnerable, and she reaches her hands over my shoulders and around my neck, so that I am at once supporting the weight of her and gently hugging her to pick her up. As we start moving she puts the top of her head against my chest and holds on tight. We walk in a shuffling minuet to another part of the house.

November 11, 2014

It’s a little after 10a.m. and Mom is still sleeping. She’s sleeping more and more, it seems. It may not be a coincidence that I am playing my music in the house for the first time since I got here. I also spent some time decluttering my bedroom and the living room, and moved her music system, which she can no longer bear to use, into my closet. This frees up room for Adam’s things, which are stored in the living room.

Mieshelle, my former wife, is arriving on Sunday afternoon. “How do you feel about that?” Adam asked, like a psychotherapist. I shrug. “It’s fine. She may get more out of it than Mom, but that’s fine too.” Maybe I will take a few days’ break in Telluride while she – and the next day, Linda – is here. Nah, I shouldn’t.

Gratitude. I am so grateful that Adam came back. I feel badly that he is spending so much time here, in this dark, crowded, cluttered little house in a town of little interest to him. But when I gave him an out to spend less time here – “I think this could go on for weeks or longer,” I told him – he said that he had nothing else to do and could work from anywhere. I’m grateful that my friend and colleague Mark Kozak has been doing such great work for our differential diagnosis startup.

She sleeps until after ten, which is unheard of. When she wakes up she begins to vomit up her coffee along with bile. Adam and I tend to her, wiping her mouth and nose, holding her bag, holding her up. She is shivering. She says, “I’m going to starve to death.”

“You’ve always come back and started eating again, Mom,” I say. But the last forty-eight hours have seen her eat very little, and she’s vomited up her beloved coffee two days in a row.

I haven’t heard from Candy about her idea of switching work shifts with coworkers. I wonder if this means she will make a decision simply by not taking action.

* * *

At a little after noon she asked for some Savoy cabbage. Whatever that was, we had none. I made her some salad, but it was “too rough”. The watermelon was too sweet. She didn’t want chicken noodle soup, and when I persuaded her to have some she complained that it had nutmeg in it, but she did eat some noodles. Shortly after, she asked me how to give herself a dose on her pain pump. “I forgot how,” she said, rooting around on the machine end rather than the end with the bolus.

She has slept most of the day so far. It’s a little after 2p.m.

At about 2:30 the hospice nurse Suzanne dropped by. She had called earlier to tell us to put a numbing cream on the chest area around Mom’s port so that a new needle could be put in. We found the cream and let Mom do it herself without supervision. Suzanne came into the kitchen where I was getting something to eat.

“I wanted to – I’m sorry, I shouldn’t laugh, but she’s just so cute. Your mom put the cream on her nipple. Which has nothing to do with where the port needs to go. I think we’ve reached another milestone here.” I relayed to her how Mom hadn’t been able to find her pain bolus earlier. She nodded.

Back in the living room, I got Mom her Ativan and Suzanne handed her the water. Mom put the bottle to her mouth and began to drink. “No,” I said, “you need to put the Ativan in first.”

Suzanne gave me a look. I left the room to hide my tears from my mother.

* * *

Mom looked at me a little later. “Did someone steal a street in Germany or a book?”

* * *

Suzanne said, “With about two weeks in life, there’s a phenomena where the person gets bedsores all over and nothing on God’s green earth can prevent them.”

I find myself questioning whether that’s the wisest thing she can say in front of my mother.

I get on a business call for almost an hour and walk back into the living room. Mom has drunk a good bit of Berle’s goat milk, and Suzanne has got Adam and Berle in a huddle that elevates my anxiety. Now she turns to me. “Your mother said – and I know she might change her mind at any time – she said there are too many people coming in here. So she may be doing the final withdrawal we do in our lives, and you might want to consider limiting visitors.” She gives some specific suggestions, but I am still reeling from my mother’s impaired cognition today, and now from this mention of “final withdrawal”.

* * *

Bonnie comes by at around 4:30p.m. Mom is sleeping almost continuously. Bonnie will just sit with my mother, occupying the same room, for almost three hours.

* * *

Occasionally she will awaken to lift a hand uncertainly and murmur, Do we need to take a pill?

And I will say, No, Mom, we don’t need a pill yet. We just took the last one a little while ago.

Because that is what you do, with the dying. You give them every comfort you and others denied them in their lives. Death, as someone once wrote about a hanging, concentrates the mind, and I would add the heart. Suffering does the same. We just feel more. More than we normally do, or ever have, or maybe more than other people too. We are ablaze with feeling. With each feeling there is a thought. Sometimes the feeling comes first, and then thoughts about it, and sometimes the thought comes first and I feel: sadness – my mother is suffering and my mother is dying, are there sadder words in the English language? – and fear – I fear her losing her life, I fear her continued suffering, I fear being lonely, I fear being unable to function – and guilt and the fear of guilt – Why did I say that? Should I be thinking this? I hope I don’t feel guilty – and finally compassion, which means being willing to be sad for another person’s sadness.

And when I tell my mother no, we don’t need another pill, she is satisfied because she knows what’s happening. She feels control over something in her life and safe in knowing that we are doing our pills the right way, like a good girl. And she drifts off to sleep again.

* * *

As I write this at a few minutes to nine p.m., with my mother and Adam both slumbering, I am wondering, Am I ever going to see my mom again? Or was yesterday the last of anything familiar to me? I’m in a foreign country. Mom has said something like that a few times in recent months. It’s all foreign to me, too – losing so much, so quickly, being so surprised, and with such enormous stakes, losing sight of my mother in her descent (or ascent?) to another level of consciousness.

God, I hope she’s happy there.

* * *

She moans softly and I look to see her turning more on her side. She is facing me. “That’s good, Mom. You move just like that.” I don’t know if she can hear me, but I praise and reassure her just in case.

She hiccups. It sounds a little different now. I think it’s shorter now, more of a sharp high yip or even ip than the throatier uhuup she did for months.

I am going to miss that.

I have to stop writing to get up and answer the phone, where a woman begins a marketing pitch honed by the type of company I hope never to run, and I say, “It’s not a good time.” My voice still husky with tears, no doubt. I am hanging up the phone already when I hear her moving to the part of her flowchart where she asks if there’s a better time she could reach me.

I take a break. Read and answer email. Grow bored of what’s left. I read what commenters have said to my posts on Facebook, and Like them all. I hear my mother groan and realize she is reacting to the chainsaw that just started up in Adam’s nose. I invite Adam to go into Mom’s bedroom and shut the door. He goes to the kitchen. I read the Facebook comments to Mom and have to keep stopping to get ahold of my self.

She dozily awakens, eyes barely open, and asks for some hash. “You want some shatter hash?” I ask, to make sure she isn’t confusing hash with her usual leaf. She does. I’m in her room trying to scrape the glue-like substance out of its tiny plastic container and onto some leaf in the glass pipe when she says, “Do we have to go pick up anybody?”

Adam chooses one route – “No” – and I choose another – “Sure, Mom, we can pick up anyone you like.” Either way, her primal anxieties are quelled.

From a Facebook message from a stranger who has followed my mother’s posts for some time: She will have thousands of people lining up in heaven thanking her for what she has done.

Will this morning mark the last time I see my mother as she was, or will she, a morning person if there ever was one, rally again tomorrow morning?

* * *

She asks for orange juice. Adam has already bought a low-acid variety. While I massage her head, he explains that he hasn’t filled the cup all the way up, but there’s more if she wants it.

“You’re my favorite son,” she tells him.

We both start laughing, and I am delighted to see my mother’s face light up with a smile.

As I tuck her in and tell her I love her, she murmurs, “Don’t worry. You don’t have to worry.”

November 12, 2014

I hear my name. I haven’t been able to sleep since Adam’s coughing woke me up, so it doesn’t take me long to get to Mom’s side.

“I need to go to the bathroom,” she says.

When we return to the bed, she is exhausted. She is breathing hard. “Put your legs this way,” she says, pointing at the slice of bed beside her. “Help me get warm.” There isn’t room for putting my legs that way, so I sit down on the bed next to her. I pull the featherbed into her from the front and embrace her from behind.

“You need to call your cousin Renate,” she says. I say I will, ask if we have her current number. She thinks we do, but the last time she told me about Renate she said she had no number of the facility where she was being cared for.

I hug her some more.

She says something to the effect of “I always wanted to be close to you” or perhaps “I feel like I want to be close to you.” Then she adds, “Even when you roll your eyes at me.”

“Oh, Mom, I’m sorry.”

She shakes her head almost imperceptibly. “It’s all right. I do it too. It’s like a pre-conditioned thing.” She tells me I can go back to bed. “I’m not that selfish,” she says.

* * *

Sometime later, after trying to sleep, I go out again. She is sitting forward in her bed and there is a moist patch on her featherbed. I hold her again and press her pain pump. She seems to have forgotten that she can use it, which worries me. I make a note to check on her pain level more.

I’m concerned she’s not drinking enough fluids. But then, enough to what?

Cousin Fiona and Aunt Christa write (as Google Translate renders it):

With great concern we pursue Inge’s dramatic deterioration of their condition. As we have read, Candy is with you ?!
It sure is good and important for your mother, that you two are there and can give you all the love and help.
Our hearts are heavy and sad, but we can remotely only pray for you.
Unfortunately Renate state is equally dramatic, as the your mother.
One can hardly speak by phone with her. All this is a great psychological burden for us.
To see two of our closest and dearest relatives in such a serious condition and experience.

Teach your Mom please all love and warm greetings and embrace it for us.

Our thoughts are very much with you.
In love and embrace
Fiona and your aunt Christa

* * *

I walk up to Mom’s hospital bed and she says, in that slow, almost inaudible murmur, “It’s been a week.”

“What’s been a week?”

“Since I been here. Anybody have any ideas yet? Are we waiting for something?”

“We don’t have any new ideas, Mom.” I couldn’t even mention what we might be waiting for.

“I’m happy the nausea has improved,” she says.

“Me too, Mom.”

She looks stricken. “I’m so far from where I used to be.” She begins to cry. “It’s like the guy said, you better starting livin or get busy dyin, and this shit ain’t workin.”

“No, Mom. It’s not.”

We put our heads together, my right hand on the back of her head, and she cries and I cry in a way that I think she may not notice.

* * *

The hospice assistant seats Mom on a cold shower bench. Mom protests pitifully. Surely they learned a best practice around warming up the bench first? “I don’t want to do this,” I hear Mom say. She’s practically crying. When she gets back to her hospital bed, she’s cold and exhausted from the trip.

The hospice assistant, who has said she must be going soon, asks Mom to roll over onto her side.

“I don’t want to do any damn thing for five minutes,” Mom says. A few seconds later, she smiles that slow smile.

“I’ll stay as long as you need me,” the assistant says.

“No, five minutes was the limit,” Mom says firmly. We all laugh. Mom beams.

* * *

“I’m always here,” Mom tells Lynn on the phone. “I’m just stuck in some crevice.”

* * *

She is gazing toward the TV, which is off, and its cabinet.

“Do you see something?” I ask.

“Just for a second,” she says. “I saw two blips of a camino sign.” She gestured vaguely ahead of her.

“You mean the yellow arrow?”

“Yes,” she says.

* * *

I sometimes think of all the love I felt and did not show, and of all the love I felt and could not show.

* * *

I run errands. WalMart, City Market. When I walk through these places I feel at once heavy and like an open wound. I feel I’m in a race against time. Imagine someone shows up on your doorstep and says, “Your mother has a few days, a few weeks at most, to live. Good luck.” It’s like awaiting an execution, hurtling toward a death sentence. There isn’t enough time. Just as I wanted the future to come sooner when I was anxious to get divorced and move on, now I want to hold the future at bay. Not enough time.2014-11-12 12.28.20

 

The End of Suffering vs. The Will to Live

November 4, 2014

Mom and Adam in the kitchen store

Mom and Adam in the kitchen store

Mom reached for her lamp in the night and fell out of bed. It was a little after 4am. Adam heard her calling and helped her back to bed. He recorded a half milligram of Ativan and an unusual three pumps from her pain meds.

When I go into her room at 8a.m., she says, “I’m feeling a lot of pain from my leg. And I’m dizzy.”

“I’m sorry, Mom.”

* * *

She is irritable this morning. I hear her tone of complaint. It’s always been hard on me.

* * *

 

“I should get outside today,” she says, “don’t you think?”

“Sure, if you want to, Mom.”

“I need to take better care of myself.”

“You’re doing the best you can.”

“I just don’t know what to do anymore.”

* * *

 

She wants to call her bank because she has been convinced that she paid a doctor’s bill that she keeps getting in the mail.

“They’re probably not open till 9,” I say.

She looks at me. “It’s not 9 yet? This has been a long day.”

* * *

 

“She shouldn’t leave today,” Mom said, breaking into tears. She’s talking about Muschi. “But I know she has to watch her grandkids.”

Muschi brings mom fried potatoes and eggs. Mom begins to eat, and then to cry. She pushes the food around on her plate. I reach out to clasp her shoulder.

“I can’t do this all day.”

“Do what, Mom?”

“Watch her leave.” She looks at Muschi. “We’ve both been through this many times. We know how this goes.”

“Every time I’ve said goodbye to you,” Muschi says, “I’ve seen you again, and this time is no different, honey.”

* * *

 

I suggest that Mom turn over on her side, so as not to put stress on her bedsore.

“Which way?” she says. She speaks slowly, and a bit thickly, like a child just awakened.

“It doesn’t matter,” I say. She begins to roll to her right side, groaning a bit as she does so.
“You can put a pillow behind her,” the hospice nurse says.

Mom turns her head toward me. “You stay here,” she says.

“I’ll just be your bolster,” I say. I climb onto the bed and support her back with my body. The hospice nurse is delighted. My right arm goes under the stack of pillows and my left rests on Mom’s arm. She dozes. I work on being present. Mostly asleep, she says something about a fairytale. “A fairytale, Mom?”

“He dies in the end,” she says.

We all die in the end, I think.

She is so fragile. So scared. I cannot but weep unobtrusively.

In the living room later, Adam surprises me by opening his arms. “Come here,” he says.
The instant we embrace my body begins to shake, and for the first time in my life I cry on a man’s shoulder, and his hug just goes on.  His eyes are wet.

I sometimes find myself wondering how I will manage during the period after her passing. Will I be able to work? I think I will just leave the house empty until spring, no renters, and then sell it. The work that needs to be done on it overwhelms me.

* * *

 

“I love you, son,” Mom says.

“I love you too, Mom.”

“More and more,” she says. “Not less and less.” She is silent for a moment. “Amazing how that happens.”

* * *

 

In the late morning, Adam and I look into flights, prices, and frequent flyer miles to get my sister, who lives in Alabama, back to Colorado.

Adam and Muschi hatch the idea of bringing in a proper hospital bed, one with air sacs that are supposed to alleviate her bedsore. It is delivered just before noon. Mom’s German friends Monika and Inge come as well, and talk to Mom. We have the bed installed in the living room – with a couch on either side for visitors, and the TV straight ahead so Mom can watch her German TV shows. The air pump that circulates air through the sacs is quite loud. I take it off the metal bedframe and sandwich it between two pillows, where it can barely be heard.

* * *

 

At around noon Muschi goes into Mom’s room to say goodbye. “I will see you soon,” she says. “I love you.”

“I love you,” Mom says, groggily.

“I love you so much,” Muschi says. She caresses Mom’s face and hair.

“Just go,” Mom says, not unkindly. She always preferred just to be dropped off at the airport curb, to avoid all the long goodbyes and drama that go with accompanying a traveler inside.

They say goodbye again, these two women who have been best friends since 1948, and who came to the United States at almost the same time, and Muschi departs.

* * *

My good friend Tedd writes me from D.C.:

i send you a big hug. cried again when i saw your mom’s pic with you. it’s so hard cam, i am really sorry you and your family are going through this. always your brother, tedd

So many people have written so many nice things, some by email, some on Facebook, and some in the comments on the blog.

* * *

Mom’s legs bear some weight today, but she still began crying as we came back from the bathroom. “I can’t even be dignified,” she said. She is now in her hospital bed, which we’ve put in the middle of the living room.

“You’re plenty dignified, Mom. Courage and grace personified.”

She gave me a skeptical look.

* * *

She is upset that Pumpkin doesn’t come to her as before. I know her well enough to suspect that she is wondering if Pumpkin senses something changed in her. What she says is, “It’s too much change.” She pets him and cries more than I have seen her cry.
“I’m just having a little falling apart,” she says.

“Don’t you worry about that, Mom. You have every right. I’m surprised you’ve not done it more.”

Somehow, my nephew Dylan materializes. He hasn’t contacted Mom since he moved out of her house about four months ago. She hears his voice as he comes in the back door. “I’m not ready for this,” she says. But he is here. She hears his tales of financial and legal woes and I catch what I think is impatience. He does kiss her on the head and tell her he loves her as he leaves to go to his second job.

But before he leaves, Mom says, “I don’t know how to do this. This has been such a horrible day. Muschi left. I can’t walk . . . I just want to go to sleep.”

Did she literally mean to sleep? Or something more final? “Whenever you want to do that,” I said, in either case, “you just go ahead.”

Not long after, she asks for another Ativan, sooner than usual, because she literally wants to sleep.

* * *

In the mid-afternoon, Mom has a hankering, she says, for steak and broccoli and zucchini. Adam goes out to buy these things and then prepares them. As a cook, Adam is very enthusiastic. The meat, though expensive, turns out not to be very good – not Adam’s fault – and I’m still hungry.

“I’ll fix you something,” Mom says.

“You’ll what?” Mom hasn’t been able to stand up to cook in the kitchen for over a week now. Cooking is one of the many basic pleasures she’s been denied.

“Help me up,” she says.

So we actually shuffle into the kitchen together, and Mom goes to the refrigerator, bends down to rummage around, finds chicory roots and yogurt, and somehow stands up long enough to slice up the chicory — and make a chicory salad with curry, olive oil, and garlic. I’ve had this before from her, with sour cream in place of yogurt, and it’s surprisingly good. The soundtrack to “Rocky” may as well have been playing in the background. To sit up, to get out of bed, to shuffle and stagger to the kitchen, to bend down and push and lift, to stand and wobble and cut and pound, to stretch toward a high shelf and carry, to stir, to shuffle and stagger back to bed, to get into the bed without much use of legs – she may as well have been competing in a decathlon. If her goal was to rage, rage against the dying of the light and do what she loved, she succeeded.

* * *

I know she has a lot of life left in her because she can still annoy me.

This reminds me of a Facebook comment by my sister-in-law Jannilynn’s mother, Linda. When Linda visited a week ago, she spent a good deal of time massaging my mother’s feet. In her comment, she said that she could tell from touching my mother that it wasn’t yet time.

November 5, 2014

I was wearing my ear buds last night, watching TV on my laptop, and didn’t hear Mom calling for me. Note to self. Adam eventually heard her, and helped her to the bathroom and back. We were both up again in the middle of the night with her, and as I was stirring in the morning I heard her hiccupping – three or four times, five or six hiccups each. And sure enough, she then started to vomit. Adam was holding the bag when I came out to help. She cried. When she was done she felt dirty, wanted all the sheets cleaned, wanted to brush her teeth and use mouthwash, wanted a bath.

“I feel like I’m walking into this strange place and I don’t know what’s going on or what to do. And I’m doing it all alone.” She wept.

* * *

Getting to the bath, and into the bath, and out of the bath, and dressed, and back into bed, was a trial.  She seemed in constant pain, and it took great effort to move in small ways.  “I just wish I could go to sleep.”

I wasn’t sure I heard her. “What, Mom?”

“I wish I could go to sleep. If it must happen, I wish it wouldn’t be prolonged. I just want to go to sleep.”

So maybe that’s what she had meant yesterday, when she said she just wanted to go to sleep.

“I know, Mom.”

As she was getting back in her hospital bed she said to me, crying again, “I don’t want to do this.”

“I know, Mom.”

She curled into a fetal position and wept quietly. Tears ran down her face. There is nothing harder to watch. I leaned over the bed railing and hugged her.

“When’s the last time we clicked my pump?” she asked.

“It doesn’t matter, you can do it whenever you want.”

“Click it again,” she said. “I don’t want to feel anything. I don’t want to feel mad, sad, glad, nothing. I just want to be nothing.” I pressed the delivery button on the pump’s bolus. She had already used her glass pipe after her vomiting. Now I offered her my vaporizer. The marijuana would reduce her anxiety, and help her to sleep, and even help to prevent further nausea.

She had just taken a few draws on the vaporizer when Rob came by. Rob is Mom’s neighbor, the one who rolls the joints, and takes out her trash, and drops by to check on her.

As he walked into the living room his eyes took in her hospital bed. “Wow,” he said. I sort of hoped he wouldn’t do that. “You’ve got your own hospital bed and everything. Not doing too well?”

“Not worth a crap,” she said. “You’ve sure been gone a long time,” she said.

“My back has just been killing me,” he said. Rob had recently had back surgery. “I thought I had problems walking,” he said. “I’m sorry.”

“Light one up,” she said. “Let’s share one.”

So they did. Adam, who had begun to nap in Mom’s room before coming out to meet Rob, went back to sleep.

“It may have been a dream,” Mom said, “but I dreamt I was in a tub of pot water.” In a sort of fog now, she asked if there were any good movies out on Netflix or RedBox or at Hastings Books and Video. “I want to see a good movie,” she said. “Not weird, not heads chopped off, not muscles growing out of weird places.”

After Rob said goodbye she lay back and closed her eyes.

To sleep, perchance to dream.

* * *

In an email a few days ago, Julio had said he hoped I would soon share good news. I told him I wasn’t able to do that. He wrote back this morning.

Amigo Cameron
My spanish , my pseudoenglish aren´t good enough to express feelings
Only one thing i can tell you, Courage !
The fact that things like that happens, makes my “ faith “ collapse…
I insist, Courage !
Perhaps…
Julio

Mom awoke from her nap and turned on the TV, she said, to get her mind off things. I was putting on my shoes to hang out the wash when she said, from her hospital bed, “I didn’t know I would be so incapacitated. I thought I could do stuff. Slowly, carefully, but I thought we would still be able to do stuff. Now I don’t even know where I am.”

* * *

7:52p.m. Mom is sleeping. She is losing the use of her legs, and feels pain in them. That may be due to the retroperitoneal tumor pressing against her spine and other nerves. I think a doctor told us this could happen. She is on constant pain drip, and must take Ativan around the clock to avoid vomiting. And today she vomited in spite of the Ativan. As it has been for over a week, the vomit was greenish bile.  The hospice nurse says that may just be her liver giving up, and she may be switching to liquids-only pretty soon.

Yesterday and today Mom said what was previously unthinkable: that she just wanted to go to sleep and not wake up.

Her desire to end her suffering is finally starting to outweigh her will to live. And that is becoming my feeling as well, but more slowly. Because I’m not the one suffering, I can’t know how to properly weigh the pros of the longer life with the cons of the terrible psychological and physical suffering that life requires.

But I do know that the more time I spend fearing the end, the less time I’ll be spending with my mother.

* * *

At 8p.m. I walked into her room. “Mom,” I said. “Mom. I need you to take your Ativan.” She did not open her eyes. She just opened her mouth. I put the pill in her mouth and still without opening her eyes she drank water from the bottle I held to her lips. A few moments later, she groaned. “What is it, Mom? What hurts?”

“My butt,” she mumbled, meaning the bedsore.

Nothing to be done about that. I had already applied a marijuana and coconut salve. She whimpered again. I stood there for a moment, watching her, and then walked around the bed. I got up on it and put my head against hers.

Look at her hands, crossed over her abdomen. Inscribe them on your memory. They are thin now, fingers slender, the left one looks older, in this light, than the right one, which looks smooth. My right hand lies atop hers. These are the hands that have lovingly made me many a meal. They’ve caressed me and patted me on the shoulder or the side of my head. I take in her clavicle and collarbone, more prominent now, but familiar, a part of her I must have seen thousands of times without registering what they looked like.

I start writing in my head, and then I think about the fact that I’m writing in my head rather than being present with my mother, and then I’m reminded of Natalie Goldberg, in Writing Down the Bones, relaying the story of how her Zen master had told her, “Zen or writing. You can pick only one.” Which affirmed for me that writing is a form of meditation.

Pay attention. Be here now. See and hear her breathing.

I then began thinking again, this time about the two little books hospice had evidently decided it was time to bring and casually leave lying around. The books listed the symptoms that tell you someone is likely to die in one to three months, and when they’re days to weeks away, and when they’re hours to days away. Specific changes in breathing that I didn’t commit to memory apparently happen near and at the end.

She’s still breathing.Mom and Leaves

Messages to My Mother

Listening to all the letters and Facebook posts we’ve been reading to her, my mother has had a

Mom, early September 2014

Mom, left, and sister Christa, early September 2014

hard time believing how people really see her.  She seems truly bewildered that she inspires people so much with her signature combination of passion and gratitude. With her passion for cooking and teaching kids to cook, she’s inspired an extraordinary proportion of her pupils to go into the culinary business.  She inspired many people with her walk on the Camino de Santiago, and with the blog she wrote of her journey with cancer before, during, and after the Camino.  On Facebook, and especially in the Teal Warriors group of women with ovarian cancer and their caregivers, she is known as an eternally positive, encouraging presence, and readers are clearly inspired by her perspective, like her gratitude for nature’s beauty even in the midst of life’s great challenges.

Here’s what I’m talking about.  Herewith, a letter from Grace, whom I met in Washington, D.C. several years ago, and, below that, a number of Facebook posts from my mother’s Teal Warriors, a wonderful Facebook group consisting of women with ovarian cancer and their caregivers:

Dear Inge,

We have never met, and yet, you have influenced my life immensely. I write these words to you today with so much love and gratitude.

Many years ago, I decided that someday I would walk the Camino de Santiago.

Last year, when the funds were (finally) there for me and the trip became a real possibility, I began my research and planning.

Your blog, Camino not Chemo, appeared on my Google search.

I read the entire story in one evening. I remember so clearly curling up on the couch, laptop there with me, ignoring my phone as it rang, literally blocking out the world… reading long into the night. “Just one more entry…and then I’ll go to sleep…”

But I couldn’t stop reading. Hours went by. Quickly!

Reading all about your journey, the physical one and the spiritual one, was a godsend to me. I know the words were sometimes yours, sometimes Cameron’s, but what shined through always was your strength. Your infallible spirit. Your determination. Your bravery. You are, quite frankly, one of the strongest women I “know”.

I was truly overcome with emotion when I saw the pictures of you there, outside the Cathedral in Santiago. A beautiful, joyful face. Healthy in body and soul.

And then, upon your return to America, I continued to follow your journey…

This battle that you have faced with such dignity and courage.

Many months later, when I began my own pilgrimage across Spain, you were with me. I thought of you as I followed your footsteps across the Pyrenees, when I knelt at the base of the Cruz de Ferro, when I swam in the lake at Molinaseca, and when I embraced my friends when we arrived in Santiago. I thought of you as I continued on to Fisterra, when I jumped in the ocean there at the “end of the world”; for me a pagan baptism, of sorts.

And I think of you now. Everyday! With so much love and gratitude.

Thank you Inge. Thank you for sharing your journey. Thank you for sharing your life. Thank you for educating so many of us, your faithful readers, on healthy living.

Your story has inspired me. In many ways, you have changed my life. My journey would not have been the same without your words. And I will think of you as I continue to walk my life’s journey.

I am eternally grateful.

Your friend,

Grace Santarelli

The notes below are a sampling from the comments from members of Mom’s Facebook group, Teal Warriors:

‪Denise:  Please tell Inge I’m thinking of her from the UK. Her posts, her pictures helped me through my toughest times with my late ‘Little Mum’.

‪Pam: There are no words to describe my feelings and I am sure those of many others. ‪Inge Cheatham‬ – you are an amazing warrior. As Kerie said, you have set a very high bar. I too was drawn in by the beautiful pictures and inspiring comments you posted each day. I miss them but mainly because they reflect you. Even through all of what I just read about, you were posting encouraging positive comments when you could. I am pleased that you are receiving such wonderful support. We will have tea together in a beautiful flower garden someday… Praying for a miracle. Also comfort, peace, and some joy in each day. I love you my friend!

‪Susan:  Please Let dear ‪Inge Cheatham‬ how very much she is loved by us all. We are keeping you all in our thoughts and prayers. She has warmed all of our hearts at one time or another.. God Bless

‪Linda: ‬ This flower is for you Inge… Protea – the flower of strength. Love and Prayers to you sweet Inge. Thinking of you now and always.

‪Andrea:  All the beautiful words and photos you have given us Inge here is one for you [with a photo]

Colleen:  Thank-you for letting us know ,your Mom has helped so many of us please let her know we are sending her positive healing thoughts.

‪Betty: ‬ Inge, my dear teal warrior sister, never have I known a more compassionate and loving lady that understands the sad part of our illnesses yet always finds joy in everyday. I love you, Inge. Please find peace and comfort in your coming days. God bless you, my special friend.‪

Valerie:  Inge….you are an inspiration to a lot of us,,,you are very courageous and beautiful. Prayers to you my dear.

Victoria: Cameron! Thank you very much for updating us. I am thinking about your Mom every day, and she is in my prayers. Even when i am not feeling good and can not write my post, i am looking if there an update from Inge. She is Amasing. Sending my prayers, energy and healing hugs to her. God bless your family!

Karen:  When I check Facebook, I usually start by looking for Inge’s post. The beautiful pictures and encouraging words are a great start to my day. Even when she is going through a rough time, she remains optimistic and informing. I have been going through a rough patch and had not checked for Inge so this news is hitting hard. Please let her know what an inspiration she is to us and what pleasure she gives us. You, Cameron, are such a loving and caring son. I’m sorry for all you’ve gone through but you have given so much to your mom and her pride in you comes through in all her posts. My heart is breaking but thank you for keeping us informed.

‪Ruth:  Please tell Inge all the messages she is getting, she has helped so many of us. She inspired me to get on with life. Cancer does not define us, it’s a part of us. She has helped so many of us to stop and see the beauty in nature around us. She is the rock on our teal warriors. (((((((((((((((Biggest hug ever))))))))))))

Susanna:  Thank you for letting us know Cameron , I think about you Inge every day , you are my backbone , you giving all of us hope and strength , and a lot of useful advice, a kick in the butt sometimes, you made us cry, and you made us laugh, you are an absolute angel. Lots of hugs prayers for you and your loved ones.

Sharon:  Prayers for you ‪Inge Cheatham‬, you have given so many of your teal sisters inspiration to keep going. Love and hugs to you.

Beth:‬ ‪Inge Cheatham‬ has been a beacon to me. She is the light of love and caring. Always striving for just a bit more of life’s beauty.

Want to see what they all mean?  Then enjoy this!

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom and Julio

Out from Under Myself

January 14.  I write that to keep track.  I’ve been sick for almost exactly two weeks, and in a sense I feel like I’ve missed 2012.  I’m in the city now, that singular city, Manhattan. Standing before my MacBook Air at a tall, chairless table in Le Pain Quotidien, the kind of table meant to encourage executives to quaff their coffee and tourists to eat their croissant and then to get the hell out, I begin, suddenly, at long last, to write . . .

I was so happy to get into the city again, after over two weeks away.  If I didn’t get a visual of John Travolta walking the streets to the sound of “Stayin’ Alive”, that’s about how I felt.  Sometimes I can really feel the heels of my shoes hit the sidewalk, and at about 40th Street and 7th Avenue I was having one of those moments.  When I realized my gloves were missing and turned to see my bus heading down 7th I was just starting to listen, on my iPhone, to the guitars of Jet’s blistering “Are You Gonna Be My Girl?”  What are the odds that, just when I need to sprint after a bus, on comes a soundtrack song from the Ski Dance Drive mix?

I leapt into the street, outran a taxi, and ran down the bus.  Whew!  That the gloves weren’t there (I’d left them on the first bus) hardly dampened my enthusiasm.

Afterward, I posted a photo on Facebook, of a different bus, which sparked general outrage that I would stop to take a picture of my prey before running it down.  One person suggested the gloves must have been lined with rabbit fur, but the suggestion is patently ridiculous.  They were actually lined with down harvested from a hundred virgins’ inner thighs.

As I continued my walk to the New York Public Library, I reached into my change pocket and without looking gave the contents to a sad-looking seated man who wasn’t even begging.  Outside the library I would later set up a recurring donation to Somali refugees.

And I walked east on 40th Street and soaked up the energy of the city.

Why didn’t I do this more often over the last two weeks?  Was I thatsick?

Bryant Park Grill, with the New York Public Library behind it

You might wonder – well, you probably aren’t wondering, but lately I have been so self-absorbed I can readily imagine you thinking about me almost as much as I do – you might wonder, I was saying, if I, a coach, made New Year’s resolutions this year.  In most prior years I’d have said no.  This year, I have been putting together ideas, so I have a sort of plan, but it’s not done.  It can’t be done until I figure out what the purpose of 2012 is, other than to scrawl on the wall another tally mark of years gone by.

My resolutions, that is, like me, are a work in serious progress.  Whither Cameron?  There are no yellow arrows here.  “Snap back to reality, oh, there goes gravity,” sings Eminem as I write this.  Exactly.  Back from a camino, or path, with clear markings on it, I am still on this latest quest, the kind of quest outlined in the hero’s journey of myth and cinema.

When I left Bend in August, my plan, which I’d arrived at after visiting several cities last summer, was to move to the winner, San Francisco, sometime after I got back.  That “sometime,” I suppose, holds the rub.  In August I had no idea when my house would sell, but there I was, on an October 14 morning in Galicia, three days from the end of the Camino, executing the closing documents on my house and signing most of my considerable down payment into the recessiosphere.  My wonderful Bend real estate agent, Kelly Neuman, hired movers to pack up my things and put them in storage somewhere in Bend.

At this point in telling my story, the language I overhear myself using with people is revealing:

I sold my house out from under myself.

I find it incredibly useful to watch thoughts, and to deconstruct them like a committee comprised of a literary critic, a psychoanalyst, a lawyer, and a writer (Freud was arguably all of these, the lawyer courtesy of his late 1800s Viennese Judaism).  The metaphor I used – out from under myself — told me I believed, or felt as if, I had knocked the foundations of my life out from under myself, the way you might kick away a ladder you’re standing on.

When I got back to New York on October 22, I wasn’t ready to go back to Oregon on the October 25 flight I’d scheduled.  I felt drained to contemplate it.  Besides, what would I do there?  My life, including my BMW, was in storage.  The Land “World’s Most Expensive Ski Accessory” Rover I listed for sale on Craigslist.  And if I would ever be ready to move to San Francisco, I knew it was not anytime soon.

After all the metaphorical running, running, of the past year-and-a-half, after the literal walk through Spain and jaunt through Portugal, I was, at last, without anything in particular to do.  Oh, the coaching continued, but it was the next mission, the next purposeful and deliberate search for meaning, that was not clear.  And as I tell clients, clarity is confidence, and confidence clarity.  They are really two ways of describing the same phenomenon; you’ll never have one without the other.

In hindsight, it was probably unreasonable to expect that I would attain that clarity and confidence so quickly.  Right.  So, I’ll get back from the trip and I’ll be totally done with the past and completely clear about the future and life will just sort of proceed from there.  There are measurable steps in life’s major transitions, and I was still, on all the evidence, engaged in some form of rest, recovery, recuperation, rejuvenation, perhaps even a subtle, low-grade form of mourning. Whatever it was, I was not my usually hyper-efficient, hard-charging self.

I tried not to resist this, because resisting reality always hurts.  I should be different.  I should be other than what I am.  Even though any sentence that begins with “I” and continues with “should” is almost always untrue on arrival, I “knew” I should be writing.  The following captured thought, repeated incessantly day and night, is how I knew:

I should be writing.

. . . multiplied, like horseflies and gnats and sometimes a mallet, by several thousand.

But what to write?  The camino blog felt over for me.  In title, intent, and practice, it had been a blog about Mom and the Camino and cancer:  I hesitated to make it a blog about me.  But even that was probably academic, because I didn’t know even what I might want to share with the world, or at least with the blog’s hundred-plus readers.  I can see why all the gurus write their books from the perspective of having already reached their grail, after the fact, rather than showing us the dirty confusing embarrassing spectacle of themselves floundering about, flapping about like a fish on shore and in search of oxygen.  Eckhart Tolle wrote his books after his enlightenment, and they’re fine, important books, but how do you relate to a Zen master?

Before the Camino, I had thought about keeping a blog on my journey of separation and divorce in real-time, to illustrate most pungently how a fairly normal person gets through, and to differentiate any related book from all those that show gurus dispensing wisdom in hindsight.  It seemed to me that people don’t benefit from seeing or reading someone tell of their journey once it’s over as much as they would from witnessing the journey itself.  But the Anatomy of a Divorce blog also was not to be.

I also toyed for a while with launching a blog about one of the few things I was , apparently, motivated to do while in New York, which was trying to meet women.  But that idea too has languished, for reasons that need not detain us here.

Happily, for a while in May I had felt like working on “The Novel,” by which I mean the first in a trilogy I conceived of over seven years ago.  I had worked on it peripatetically for about five years, but drifted away from it in 2009, as I spent my time being a senior executive in a start-up, being married, helping my wife run her business, and researching and co-writing a book for several publishers.  I had a brief fling with The Novel during my two weeks in Israel, in May, felt great about it – but arrived back in Bend to reality.  I also lost most of what I had written, after my new hard drive crashed.  This was discouraging, but a drop in the bucket of everything else going on at the time.

And so the writing proceeds very slowly, though it is mostly about the Camino project, which I am tentatively calling Mom and Me, along with some subtitle, perhaps relating to divorce and other cancers.  Could I finish it before the next camino season, say, by May, and get it in Kindle format so pilgrims could take it with them on the Camino?  Could I get enough word-of-mouth and other buzz to sell more than a few copies? We shall see…

In early December, I decided to go to Bend to tie up many of the loose ends that had been grating on me.  But that trip would turn out to be completely different from what I imagined.

 

On Auschwitz and Cancer

For at least two weeks I have had in mind a post that addresses Mom’s PET scan and the expectations that so many people have about what will happen to her cancer now that she has been on the Camino.  I discern these expectations in what people say to Mom, in her telling me, a week ago, that she felt “pressure”, and in our tribe’s utter inability to stop telling ourselves stories . . .

But for at least two weeks, I have not found myself writing anything.  Why that has been so could justify its own essay.  It wasn’t until I read Mom’s “Cheers and Kindness” post of this morning (about her experience with her friendly townspeople and her wait for the results of the PET scan), and found myself crying at the end, that I began to write this post.  I don’t know where it’s going, but I begin anyway.  “I can’t go on, I’ll go on,” as my master and hero Samuel Beckett once had a nameless character say.

Humans see patterns in everything.  Hypnotize a person (as researchers did in a now famous set of experiments) and tell him to get up from his chair and walk to stand by a window, and when you wake him up and ask him why he is standing by the window, he will say, for example, “There was a cold draft, and I was shutting the window.”  Of course this is not true, but we now know that the brain searches relentlessly for explanations of everything it does not understand or does not wish to grapple with.

Not so long ago, we prayed to the sun to intervene

Just today I opened The New Yorker to read “It was an article of faith among the [Libyan] rebels that Qaddafi had regularly used magic to prop up his long reign.  What other explanation could there be?”  Lacking explanation, man often turns to the supernatural.

Stories are easiest to see in beliefs about politics and religion — two areas that, not coincidentally, wise people know it’s best not to argue about.  That’s because such beliefs are usually not arrived at by reason but by responses to emotion, and it’s pointless to argue with conclusions reached by emotion.  Today I saw one writer’s interpretation of New York City’s shutdown of Occupy Wall Street, as he looked at the site that once housed the 5000 books of the Occupy Wall Street Library:

What a picture it would be . . . of police in riot gear gathering boxes of donated books and loading them into garbage trucks. A perfect metaphor for what appears to be the intention of last night’s raid: destroying the body of knowledge that had been collected by a movement just two months old . . .

If you want to spot tendentious, made-up belief systems, look for words like “appears to be,” as in “the contents of another person’s mind appear to be an intention to destroy knowledge.”  A great many marriages founder on this one powerful impulse, that of imagining we know the meaning in another person’s mind.  All storytelling arises from man’s wrestling with painful sensations of ignorance and uncertainty — which is fear.  The results of this wrestling, this agon, we call myth, religion, fiction, cinema, psychology, ideology, doctrine, dogma.

So we see a woman walk across Spain on (and in) a dream and we

Mom displays good food on the Camino

continue the story.  She has cancer, right?  She wants it to go away, right?  And look at all that bravery, all that effort!  Look what a story so far, with all the blog posts illustrating the triumph of the human spirit!  Why, we’ve even got her in high-definition video!

It’s a story fit for the movies!

What is left behind

Except for one thing, we think:  we don’t have our ending yet.  As the writer of the Gospel of Matthew well knew, adding, as he did, the all-important Resurrection to Mark’s far more abrupt ending*, there can be no meaning without a proper ending.  And the only acceptable ending to this fairytale is, of course, that somehow, in magical ways we don’t need to understand but need to believe in, the walk across Spain – the exercise, the sun, the intention, the bravery, the purpose, God – cured the cancer.  I would guess that nearly every reader of this blog will acknowledge in herself this secret hope, this small buried voice whose sister whispered in my mother’s head as she approached the Cruz de Ferro with the earlier PET scan, with the cancer, she hoped somehow to leave behind.

I don’t need to understand how it can happen, we think, but I would love to see a fairytale ending.  I’d love to see God choose to play a role in this drama and give a woman her just dessert.

This is a way of thinking pilgrims were familiar with a thousand years ago:  surely if I go to all this effort, God will reward me.  The medieval Catholic Church validated this thinking, handing out “indulgences”, in its role as God’s mouthpiece on earth, to people who made some kind of effort – the Camino pilgrims, say, or the people, both wealthy and poor, who got karma credits with God for handing over their money to the Church.

Setting aside the Church’s confusion of money with divine will (and itself with divinity), all of this relies on belief in an intercessionary God — that is, a God who will intercede, or intervene, in human affairs, if we simply do something noticeable enough to catch “His” attention (a God who intervenes in human affairs is nothing if not person-like).

I would like to believe such a God exists, but then if such a God did exist, and either set in motion or stood by and did nothing for the shot, gassed, and hung-by-their-tongues Jews of the Shoah, or the Rwandans, or the victims of Stalin, Mao, and Pol Pot, I would find Him unworthy of the barest worship.  Either he is weak beyond imagining, or he is capable of ending unbearable suffering but lacks all compassion.

It is this God who is said to have died in the concentration camp at Auschwitz, and for people who study history and its lessons there is no resurrecting him.  Can there be a kind of divinity who intervenes in the cancers of mothers who do pilgrimages but ignores the cries of children in gas chambers?  I do not think so.  Not that kind, by that definition.

This is not to say divinity, or a consciousness that pervades the universe, does not exist.  It is only to say that I’m not able to believe there is a person-like entity who intervenes in human affairs.

If Mom’s cancer does not reappear on her PET scan, there are a number of possible reasons for it, from what science now tells us of the power of the human mind (in science’s belated validation of prayer and meditation) to what we know love and purpose can do for the human immune system.

I create meaning and emotion just by inserting an image in a particular place

Love and purpose.  Immune system.  For those who don’t credit an intercessionary God, these are the building blocks of their hope, vague as it may be:  Inge did that amazing walk, such great purpose, we all love her, we hope her cancer goes away now.

I do too.  And I too don’t care how it happens or whether I could ever explain it.  My mind bends toward the romantic and the idealistic as much as the next person’s.

But I have worried since the first moment Mom mentioned doing this trip that it would begin to work on her mind, whispering to her of salvation, giving her a hope — so powerful in the agon with dis-ease — that might turn on her if the outcome to which she had inevitably grown attached did not come about.  I have worried for many months about us measuring the success of the trip, or Mom’s chances of survival, by the same meaningless yardstick, the PET scan of November 14.  (See the end of my post a day before we reached the Cruz de Ferro, when Mom voiced aloud what until then had only been the whispers of going to the cross and leaving her cancer behind).

But the PET scan is meaningless, in the sense that it neither signals an objective truth — someone will or will not die — nor has within it a pre-fabricated storyline of what must happen next — of what it means.  We create the storyline.  Yesterday’s PET scan is just

Another Day on the Camino

another day on the camino, and just as there were days before it that did not speak of life or death, there will now come days after it that are silent on the matter.  The PET scan is just data; we supply the meaning of it.

Mom is powerful precisely because she gets to choose what meaning to assign the PET scan.  Doctors and others will look at a certain scan and say, “This is great!”  They will look at different results and say, “Oh, oh, my, this is unfortunate.”  They are, however, simply speaking from their own, inevitably blinkered, system of belief.

Mom can decide what storyline she will believe in, and as one of my favorite Taoist stories shows, her storyline doesn’t have to grasping for meaning prematurely.

Sometimes a horse is just a horse, of course

There was an old farmer who had worked his land for many years.  One day his horse ran away.  His neighbors heard the news and ran to see him.

“Such bad luck!” they said.

“We’ll see,” said the farmer.

The next day, the horse came back, bringing with it three wild horses.

“How wonderful!” the neighbors said.

“We’ll see,” said the farmer.

The next day, the farmer’s son tried to ride one of the wild horses, was thrown, and broke his leg.

Here came the neighbors.

“What a disaster!” they said, patting the farmer on the back.  “Your fields will rot if he can’t work the farm.”

“We’ll see,” said the farmer.

A day later, the emperor’s army recruiters passed through the village to draft young men into the army.  They saw that the farmer’s son had a broken leg, and they passed him by.

The neighbors, again.

“Such good fortune!” they said.

“We’ll see,” said the farmer.

All this is to say that the Lord moves in ways mysterious, not ways we can divine in our desperate interpretations of this event and that . . . In the absence of knowing, then, what we’ll see, we can

Give it a try -- supply your own caption

only let go of the need to know, which sometimes comes in the form of patience and other times forgiveness, and cultivate those states of mind — love, compassion, positivity — that lead to healing.

The “unfortunate” PET scan of May has unfolded into some of the greatest experiences of Mom’s life, not to mention mine, Carrie’s, and many others’.  Who, then, will claim to know that yesterday’s PET scan can be “bad news”?

That camino continues, and we’ll all be walking with Mom as she walks it.

 

* The original Mark ends with the women fleeing from the empty tomb, and saying “nothing to anyone, because they were afraid.”  (How the writer of Mark knew what they saw when they said nothing to anyone is another story.)  In Mark, there is no Resurrection, and without the decades-later additions of Matthew, Luke, and John, Christianity as we know it would not exist.

Walking at home…

It’s been a few days since we’ve returned. The first few days were busy with all the usual tasks. Mail sorting, bill paying, laundry, dusting, leave raking and shopping for groceries.

The day after I got home, a friend came to pick me up to drive to Grand Junction. T.V. station KREX wanted an interview with Carrie and I. Well, that was fun.


Also a reporter from the Daily Sentinel was there at the same time (click link to read). See the NBC11 News report.  It was on the news that Sunday night. KREX took some artistic license with the contents (and my name) but overall the word was out. Carrie had an interview with KKCO the next day and some more pictures of our journey were shown.

Sunday afternoon, Carrie, her mom, and her sister came, as did a few friends of mine, who wanted to meet Carrie. They wanted to hear what her impression and thoughts were. How or why it had changed her. That was a very nice afternoon, recalling and remembering our journey and as long as we get to talk about it, it hasn’t ended. My friend Carla stayed to help me write a letter to Marianne, in French.

All my friends and people I know, i.e. Post Office, grocery store, etc. tell me how well I look. They say I’m glowing. Perfect picture of health. (From their lips to God’s ear.) I feel really well. I’ve lost 5 lbs since I’m back. My body is shedding fluids. I’ve also started to take Avemar. This is a fermented wheat germ product and is to improve immune system as well as detox. I’ve seen a one-hour special, called Run from the cure“.  It’s about oil made from hemp that helps to cure or alleviate many illnesses. Smoking marijuana, on the other hand, apparently does not help in cancer cases.

Strangers called me and asked for advice for lifestyle changes, to improve their health. I told them that I’m working on getting a cooking class together and would love to show them how this can be done, making small changes and working up to the grander scale.

During those first days, I still felt displaced and out of sorts. I was missing the simple act of walking, of meeting pilgrims.  I was told when the P.E.T scan appointment was made that I was not to do straineous exercise. The long walk was the reason I had to wait 3 weeks for my body to become ‘resting’. I’ve tried. I really have, but yesterday, was a gorgeous late fall day. The special kind we have here on the Western Slope. My body was idling, revving to go. (What I did not miss, was the JAMON.)

So, I put my snazzy camino boots on and walked the path by the river. The San Juan mountains, south of me were snow covered and brilliant against the azure sky. Trees still had gold, green, yellow foliage. I could almost pretend I was walking the camino. Horses were in one pasture and then I saw a pair of foxes. Their ears came up as I passed but they stayed.

I was still thinking about some of the places I’d been, when some people walked toward me. Automatically I said ‘Buen Camino’.  They smiled and said “Good morning.” I chuckled to myself; maybe they thought I was Mexican.

I felt bad thinking about those poor people getting pounded by this freak snow storm, back East, when I was enjoying this perfect weather that we have here, oh, about 300 days out of the year.

It felt so good to just keep moving. I walked a measly 3.5 miles but felt so much better. I don’t think this will hurt anything? In any case, I’ll stop walking a few days prior to the appointment. It’ll all settle. Of course, now I’m also thinking what all these tests might show? But, I push those thoughts away. There’s no use on trying to analyze something that I don’t know. Would drive you crazy, if you allow it.

I suppose walking the camino at my age and circumstance may be a bigger deal than I thought. Or, perhaps it’s the curiosity of avoiding chemo that makes this newsworthy. Could be, because I did finish the walk. In any case, a reporter from “The Watch”, a regional newspaper called yesterday for an interview. This one is coming out Thursday and can accessed online. My 15 minutes of fame. But more so, everyone is anticipating the results of these tests. Waiting, wondering if all this walking has done something unique. I know it has, without results from tests. Meanwhile, I will enjoy the great weather and walks and even go up to the Black Canyon. I think walking there will be gorgeous right now.

 

 

 

 

How Did the Camino Change Me?

Everyone seems to want to know:  How did the Camino change you?

So far, I have had a few surprises upon my re-entry to the Ordinary World.  And that’s not even counting the fact that I recently bought a fresh red pepper for the first time in my life, and ate it, and enjoyed it.  In fact, I find that my appetite for healthy food has increased.

The First Surprise

During the walk across Spain, I longed for a good yoga stretch.  I’d grown so fond of my yoga classes over the last year and more that I really missed yoga while on the road.  On the road I was sure I’d never needed yoga more; after all, I was walking thirteen or more miles a day, with all that means for the legs and back, and I was carrying a pack, with all that means for the back and neck.  I imagined myself a stiff mass of bunched-up muscle and ligament.

So I was very excited to get to my first yoga class in about six weeks, in uptown Hoboken’s Devotion Yoga studio.

What I found surprised me.  Far from being rusty and out of

Balancing in Montauk, New York

practice, I was more balanced.  I could easily get into and hold balance poses that had been more difficult before the Camino.  As I flipped up into a crow pose and held it easily, I felt as if an Olympic gymnast had just taken over my body.

I may have even been more flexible, or unstuck, in other poses that I had never been able to do well — the upside-down wheel, for example, which something in my neck — the knots? — had always made difficult.  But here I was in the most complete wheel I’d ever done, as if my (tight, burdened?) shoulders had at last gotten out of the way.

Experienced yogis will say that the mat is a microcosm of life.  On the mat, you practice being comfortable with discomfort, you practice slowing your thoughts and (I think relatedly) your balance, and you practice being kind to yourself rather than abrupt or forcing.  You also practice concentration.  And all of these things will be directly reflected in your life off the mat.

But in my yoga class, I was finding that what I had done off the mat was affecting the yoga!  I was more mentally, emotionally, and physically balanced.  I may have also been more flexible, less tight.

I had already sensed that I did successfully slow down my thoughts on the Camino, and that I had fewer negative thoughts and emotions, but these things are hard to measure.  The yoga class was, happily, more objective – like stepping on a scale that measures How the Camino Changed Me.  You either fall over where you used to fall over, and struggle where you used to struggle – or you don’t.  And I wasn’t.

And because balance is a reflection of clarity of mind, I think my yoga session confirmed for me that I had somehow reached my goal of slowing down my mind, and with it, the negative thoughts that make for negative feeling.  With the mind racing less, the body can be still; with the mind less mired in anxiety, your body can be calm.  And you can balance yourself in ways you previously couldn’t.

What Caused These Changes?

So the question we need to be asking ourselves is this:  what was it about the last five weeks that put me into such a state of balance? The food?  Certainly not.  The sun?  There are many variables, of course, but here are the ones that I would hypothesize:  the meditativeness of walking; the exercise (and, yes, the sun, a known mood enhancer or anti-depressant); and the sense of purpose.  It’s this last, the sense of purpose, that interests me most.  Because what I want to do now is replicate it in my “real” life.

I want to figure out what I was doing on the Camino that can be brought back with me.  Because if I can’t do that, then a great deal of the value of the experience will be lost to me.

An Unfolding Surprise

While I was on the Camino, I wondered what it would be like to be off it.  Would I be, as Marie Anne always is after the end of a long walk, sad?  I wrote about this from Portugal, after we were done.  At the time, I did not feel sadness about being done.

But then, I wasn’t done.

Simply finishing the Camino did not mean I was done with what I call the Special World.  During our several days in Portugal, I was still away from my Ordinary World.  And so any reaction to the real world would have to wait.

Now that I’m back in the temporary life I was in just before I left for Spain – cooling my heels in and around New York — I’m starting to feel that reaction.

At the post office a few days ago I underwent a petty frustration, and by the time I got back into the car I almost had tears in my eyes.  Back at the apartment, I felt tears come up — frustration, I think, a kind of sadness that I had lost something, or perhaps a fear that I would not be able to find it again.  On the Camino I had felt an occasional annoyance and even anger, but I didn’t feel the kind of existential sadness I recognized early in the week.

I found myself resisting this, and then I found myself saying, Stop resisting.

The next day was different yet again.  I felt no sadness at all.  But I still felt some of what Mom wrapped up well earlier today, on the phone, after I’d said the return to the real world was sometimes a bit disorienting: “Yes, I know!  I don’t know what to do with myself!” she said.  “I walked to the post office, I made a salad and ate fruits again, I did the leaves, I went grocery shopping . . . My body is revved up and ready to go.”

I realize that there is a particular journey that is still going on, one that is not done yet.  I have been telling myself not to develop expectations of what I must be doing now that I am back.  I have been telling myself to stay on the Way – which unfolds only a day at a time.

So this is the challenge I have set myself (a hopeless type-A, I often do better if I call something a challenge):  to come to understand what it was about the Camino experience that made me feel less bad, less often, and made me feel very good, very often, and then to make sure my life after the Camino is designed as similarly as possible.

In the next post, I’ll talk about what I miss from the Camino.  And that may lead me closer to understanding what I had there that I must create here.