Letter to Zoketsu Norman Fischer

December 8, 2005 Dear Norman,

Thank you for asking me to write this.

As you know, my mom died one month ago, today. She had three terminal conditions: Alzheimer’s, cancer of the jaw, and ninety years of living. Her death should have come as no surprise, but of course when she died in my arms, I was astonished.

How can this life, which has persisted here on this earth for over ninety years, be over? Just like that? This strange new state of momlessness is inconceivable to me. It is new and foreign, a condition I’ve never experienced in my own forty-eight years of living.

I’ve been taking care of my mom for the last ten years, so my grieving is minute and quotidian. When I go to the grocery store, I find myself searching for things that are soft and sweet (she loved chocolate and she had no teeth), or beautiful bright things (she loved flowers, but her sight was failing). Then I remember that she isn’t here anymore, and I’ll never see her face light up when I come into her room, or hear her exclaim over the color of a leaf or a petal or the sky. For the first couple of weeks, I just stood in the ice cream aisle, stunned and weeping.

When I think about her death from her perspective, mostly I just feel relief. She was beginning to suffer a lot of pain and confusion, and I believe she was ready to go. But when I think about her death from my point of view, it breaks my heart. Maybe that’s selfish. I don’t know. All I know is that I miss her like crazy.

I miss her thin little fingers. I miss holding her hand. I miss twirling her wedding ring around so the tiny chip of a diamond sits back on top.

I’ve tried so hard to be strong for her. When she was diagnosed with Alzheimer’s ten years ago, our roles began to switch. I took over caring for her, and slowly she became dependent on me. In the end, I was feeding her and changing her, and she was calling me mom. Alzheimer’s is an achingly long way to say goodbye, but I had to be strong, I thought. It would only confuse and upset her to see me cry.

Then a few months ago, I had to take a trip and leave her for a couple of weeks. I went to tell her, knowing that she might die while I was gone, and as I sat on the bed next to her, the tears just came and there was no stopping them. I tried not to let her see, but of course she noticed. She’s my mom, after all—it’s her job to notice these things. She put her arm around me, put her head on my shoulder, and although she’d pretty much stopped using language by then, she made these sweet, singing, mom-like noises meant to comfort me. And it worked, and I felt better, and when I left, we were both laughing. So that was good. My grieving gave her something that she could do well, something she could succeed at, and that made her happy. It let her be the strong one for a change.

They say every death is different, and I think every occasion of grief is different, too.

When my dad died, I was angry because he was angry and despairing. He did not want to die. He was not ready; and I was in charge of his health care; and neither of us could do a damn thing to prevent or forestall this utterly unthinkable and unacceptably terminal outcome. I was mad at him for his lack of readiness, and I was furious at myself for my impotence and lack of compassion. After he died, I couldn’t think of him without a lot of pain and anger and confusion and despair and sense of having failed him. I couldn’t look at his picture without feeling my insides twist. I wanted to look away. And I did. I remember I drank a lot, too, in order to get through it. I took his death very personally.

It was different with my mom. We’d had lots of time together, and we were both as ready as we could ever be. And I wasn’t drinking. I quit two months before she died. I’d done drunken death-and-grieving thing once, and it was lousy. I didn’t want to do it again. I wanted to keep my wits about me. I didn’t want to run away.

The last thing I promised my dad was to take care of my mom. He knew she had Alzheimer’s, and he was tortured at having to leave her behind. So for ten years now, I’ve been fulfilling my promise to him. And this has been good, too. His request gave me something that I could do well, something I could succeed at, and this has made me happy.

So I’m grateful to my parents for dying in my presence, and for teaching me their two different ways of how it can be done. It is hard work, dying, but after watching my mom and dad, I realize that we’re built to do it.

Grieving is hard work, too, but again, I guess we’re built to do it. We come equipped with hearts to break, and eyes to cry with. We have brains to hold the memories and stories, and voices to tell them with. We have the capacity to love and heal.

I have my dad’s picture on my altar, next to my mom’s, and now that the anger and remorse has subsided, I can look at him with gratitude. And a month after my mom’s death, I’m not crying in the grocery store so often anymore. Instead, when I think of my mom, I buy a sweet and offer it to her, and then I eat it (she hated wasting perfectly good food). I bring home flowers and admire them through her eyes. I takes walks for her by the ocean and look at the sky.

So that’s a little bit of what it’s been like. Thanks again, Norman, for asking me to write this. It helps to have a place to put the feelings.

with love, Ruth

mom, by the ocean, eating ice cream

catching up...

Well, I'm sorry about the gap in the chronology of this weblog. I think I just needed to take a break from the relentless passage of time. Maybe I thought I could make time stop by stepping out of its current, but I can't.

A lot has happened. My mother turned 90 last month and we had a little birthday party for her.

"How old am I?" she asked me.
"You're ninety, mom."
Her eyes widened. "I am! That's unbelievable! How can I be ninety? I don't feel ninety."
"How old do you feel?"
She was perfectly serious.
I laughed. "You can't be forty. Even I'm older than forty."
"You are?" she exclaimed. "That's terrible!"
"Gee, thanks."
She shook her head. "You know, I must be getting old. I just can't remember anything, anymore." She looked up at me and blinked. "How old am I?"

Later on, I asked her, "How does it feel?"
"When you can't remember things. Does it frighten you? Do you feel sad?"
"Well, not really. I have this condition, you see. It's called osteo...ost..."
"You mean Alzheimer's?" I said, helping her out.
She looked astonished. "Yes! How on earth did you know that?"
"Just a guess..."
"I can never remember the name," she explained.
"Of course not."
"It affects my memory..."
"...And that's why you can't remember."
She frowned and shook her head. "Remember what?"

"There's not a single thing I can do about it," she told me, when I reminded her. "If there was something I could do and I wasn't doing it, then I could feel sad or depressed. But as it is...." She shrugged.
"So you're okay with it?"
She looked at me, patiently. "I don't have much choice," she explained, "so I may as well be happy."

mom, at 90.
photo by ester strijbos

linear acceleration

I’m in Victoria, B.C., with my mom. We’re here because a second biopsy of her jaw yielded a positive diagnosis: squamous cell carcinoma. She just completed a series of ten radiation therapy treatments, or fractionations, in the hopes of shrinking the tumor. Left unchecked, the cancer would most likely eat into her jawbone, resulting in debilitating pain. Of course, there was a chance that the radiation would also result in debilitating pain caused by osteoradionecrosis, or bone death. So there you go. Old age is not for the faint of heart.

On the first day she was brought into a dark and cavernous room called the Simulator. Isolated in the center was a table on a dais, where they laid her, face up. A technician stood over a stainless steel vat of hot water, cooking a square sheet of white plastic mesh. Once the plastic was hot and malleable, they placed it across mom’s face, stretching and pressing it around the contours of her nose and jaw, over her cheekbones and into her eye sockets, pulling it down around her ears until eventually it reached the table, where it was screwed down and left to harden. A network of red laser beams, crisscrossed the darkened room, mapping out the paths the x-rays would take. Once the cancerous target had been sited, the mask was gridded off with felt markers and removed.

From here, we were taken to a treatment room—this being the Pacific Northwest, all the radiation rooms are given the names of trees, and we were assigned to Fir, which was next to Arbutus. Fir is the home of Linac, or the linear accelerator, which is a large L-shaped machine that generates x-rays and aims them at the tumor site. Once a day, for ten days, mom's head was buckled down onto the table and 300 centigrays (CGYs) of precisely directed photon x-rays beamed from two angles into her jaw.

The treatments themselves were quick and painless. The skin around the tumor site got a little bit inflamed, and she had some trouble swallowing, but the side effects were minor, consisting primarily of intense fatigue, loss of appetite, and general debilitation and lethargy. The trick was to keep her awake long enough to eat, but she was losing weight and getting weaker and weaker. After a week or so, she could barely walk the ten steps from the bedroom to the bathroom.

That's when we thought we were losing her. Her pulse was erratic, and she was having trouble breathing. I heard fluid in her lungs. She was fretful, the way people get when they are actively dying. She would stare wide-eyed at the white ceiling, and from time to time she’d laugh and point upwards, gesturing wildly. She was trying to tell me something, or talk to someone, but she’d stopped using words I could understand. I could tell she didn't recognize me. Sometimes she'd start speaking in Japanese. She was sleeping about twenty-three hours a day. But somehow she managed to go on.

Over the course of the treatment and the weeks that followed, she had a couple of bad dips like this, but each time she'd stabilize again. Finally, one night as I was tucking her in, I gave her a kiss on the forehead.

"Good night, my little sweetie pie...," I said.

She looked up at me for the longest time searching my face. Finally she smiled.

"Good night, big pie," she said.

That's when I knew she was going to be alright.

It's been a month since she started the radiation treatments and she is back on her feet, walking in the park, climbing stairs, enjoying her food, and gaining weight again. The radiation treatment was palliative and never meant to cure the cancer, but rather just to control its metastasis, and it has succeeded in doing this. The tumor is still there, but it has shrunk dramatically. Mom rarely notices it, and because of her Alzheimer's, she has no memory of being sick at all, which seems just fine to me.


So, my mother said to me, the other day, “When I die, are you going to start renting out this house to other people?” She is staying in a little house down the driveway from ours.

“I haven’t thought about it,” I replied, hedging. Obviously I don’t like it when she talks about dying.

“Well, you should take the washer dryer up to your house before you rent it to anyone.”

“The washing machine…?”

“Yes," she said. "I don’t know why you put it in this house. You have to come all the way down here every time you want to do your laundry.”

“We put it down here so we could all share....” We put it down here so we’d have another excuse to hang out with you. We put it down here because we are afraid you’ll become bedridden and incontinent.

“Well," she said, "that’s very nice of you, but after I die I don’t want to have to worry about you not having a washer dryer.”

“Mom,” I told her. “Please.” She’s had Alzheimer’s since the mid 1990’s, she’s just been diagnosed with what looks like jaw cancer, and she’s eighty-nine years old. She has enough on her mind without worrying about our laundry.

“So you’ll take it back up to your house?”

“Mom, when you die, I’m burying the washer dryer with you.”

“Don’t be silly.”

“I don’t want to have to worry about your dirty clothes when you’re in heaven.” (I don’t really believe in heaven, and neither does she, but I know she will humor me.)

“Clothes don’t get dirty in heaven,” she said, staring at a tall Douglas fir outside the window. “Clothes are always clean in heaven.”

“They are?”

“Yes. They have angels there who do all the laundry. Now, isn’t that a lovely tree? What kind of tree is that?”

mom in trees