Category Archives: Bringing the Way to the Everyday World

Not Enough World and Not Enough Time

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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

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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

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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

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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

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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.