A DIALYSIS DIARY | Kristin Camitta Zimet
Now we are three.
Man, Woman and Machine.
He has gone at last into that chilly room.
He has married her, it, the dialyzer, with a ring of his own blood, a ceremony intimate and cold, a vow he will renew three nights a week.
She, it, will know him in the flesh, half a cup at a time, four hours at a go, three nights a week. A shared circulation, the kind of blood sisterhood my preteen friends and I pretended to with a pledge and a nick from a Swiss Army knife. The brief umbilical bridge I built with my babies, cut before my arms held them.
In the waiting room, I am the only one. I can’t follow him inside. He has eloped. I am the other wife. I am not sufficient for him any more.
Every thought begins with I. This is happening to him, I try to say, not happening to me. But it is, too. This is my place to tell it.
*
He was promised to it.
At birth, when milk made him twist, bawl and slacken, till the doctor saved him with formula of mashed banana. Eating was mother comfort.
At seven, when fever wrung him out rope-skinny, till an unheard-of drug—penicillin—saved his life. Fat was his assurance.
At thirty-five, when he prowled the studio in a blue shaggy robe, cooking chowder to win me. Food was his love gift.
Food fleshed out our marriage. Häagen-Dazs Rum Raisin in bed on steamy nights; Cheez Whiz in the fishing boat; homemade birthday cakes; moon cakes in Chongqing, taro along the Rio Negro. For thirty years of shared and furtive treats, he was promised to it.
*
It was coming, but maybe I connived.
I welcomed his size, token of solidity. I loved that there was more of him than my arms could go around.
My grandmother would smell a box of chocolates and pass it on. My mother would labor over exquisite recipes and serve little tastes. Miniature pots de crème with baby spoons. Brownies cut in four. Dainty artistic canapés. I loved that he never measured what he gave. Food or anything else, he heaped my portion.
His mother would take me aside. Press him, push him, mold him thin. As if the ones we love are made of dough. I did ask the hard, bottom-line questions. Do you want to live? Do you want to be here for the children and me? But tenderly. I waited for the choice to come from him. I loved him as he was.
*
In a good marriage, there is no changing the other. Only making room for what the other is and comes to be.
But they did change him, remake him for her, it. A month ago the surgeon took a vein and an artery in his left arm and spliced them together, making a port for needles. The vessels fattened and rose to the surface. When I touched that arm, I felt the “thrill.” The alarmed shiver of a flushed rabbit, unable to bolt for dear life.
Under my fingers now it feels more alive than the rest of him. His energies gather there. A massed army of trembling raw recruits.
*
After he got the fistula, at first he could not sleep, worrying that his head would rest on his own foreign arm and damage it. He worried that I might press it. He skimmed the surface of sleep and if I touched him, he growled.
After thirty years, we were back to being unskilled lovers, practicing how to sleep. He put a pillow between his ear and his arm. I stuck a pillow under his armpit, so I could rest my head on it instead of on his shoulder. But pillows get lost in the night.
He asked me to trade sides of the bed. I was going to change what time was mine, how I cooked, how far I went from home, which chores I took on. This change seemed trivial. But the left side of bed was mine. It put me close to the window, next to moon, wind, downpour and sunrise. I squeezed into that skinny alleyway between his snoring bulk and the dog’s. I held on to that sliver of my own life.
*
I began to lie sleepless beside him, rigid with hesitation, fear and regret.
One week before dialysis, he dreamed.
We stood side by side at the shore, wading out into warm water. The sea and the sky were so bright, they ran into one another; we could not tell where one left off and the next began.
He grinned sleepily, handing me this dream like a juicy pear. We simply would go forward, bathed in light.
*
My dream that week was different. I did not tell it.
We were in a narrow car, like a roller coaster car, one person wide. I was sitting in front, free to enjoy the view, while he sat behind and steered. We drove out a headland with next to nothing growing on it, grass grazed flat, the sea below on our right. At the end of the headland the road veered sharply left, but he did not. The car sailed gently over the embankment, touched on an asphalt slope, hung briefly and rolled into the water. I was already wriggling free. But he could not climb out, he simply began to sink. I would not even be able to mark where the car went down.
Already I felt survivor’s guilt. Already I knew I needed to learn to drive my own life.
Separately.
*
Every year since we married, the pool of ingredients has shrunk. Tight budgets, my hypoglycemia, vegetarianism, Weight Watchers, his heart, his diabetes. Ha! Now subtract the foods he can’t eat without a kidney. I spin more and more straw into gold.
The renal diet is scary, as it asks me to leach nutrients out of his food, when dear god, in spite of it all, I’ve managed for thirty years to put them in.
But I won’t let it stop me. Here is something I can give him: if not the blood of life, then the food of life. I tell myself I will make his food sustaining, beautiful, joyous. He loves eating, and I refuse to let that love be taken away.
We got so casual when the children left; we took turns cooking, or went out, or grabbed a peanut butter sandwich. It was a relief to stop being the Great Provider. Now we soak the dinner potatoes after breakfast, to leach out the potassium. We write down every ounce. Will we be casual again?
*
I find myself hoarding foods forbidden to him. One day I binge on Perugina bittersweet chocolate. I hide navel oranges, goat cheese and olives; bake date-raisin-nut bread. I gobble cinnamon ice cream cones.
The milk that is rebuilding my thin bones, the cheddar and almonds and tofu that keep my wobbly blood sugar even, the fresh corn I munch raw on the cob—the foods that are my allies and friends—would poison him. I feel like Rappacini’s daughter.
With defiance and a little pang, I nourish myself. Separately.
*
Kidney failure was a process of contraction. He went to bed soon and woke late. Activities dropped away. Sleep kept him busy. Finally he slept fourteen hours a day, with a window of maybe four bright hours.
I was contracting, too. Not much seemed worth paying attention to, besides the life together that might be completing itself.
*
I am afraid, not only for him, but for myself. I will have to account for everything I rely on him to grasp or remember or handle: dates, taxes, half of my memories. I will stand exposed in the ways I have not yet grown up.
The comfortable work of helpmeet has absorbed me for thirty years. Suddenly I walk through the gallery of could-have-been.
Who is in your support system, the social worker asked him. Kristin, he said, just Kristin. I am the sun to his earth. When I consider that he might die, I shrink to an asteroid, an incidental, aging stranger.
The night I finally say this out loud to him, I remember how to sleep.
*
Both of us are hanging on to the present. But both of us are frantically thinking ahead.
At the seminar, “Living Well with Kidney Disease,” I was the one who voiced the forbidden question: What is his life expectancy on dialysis? They were dispensing comfort, but I needed truth.
Fifteen percent die every year. I went outside, sat on the steps of the conference center and cried. Then I said out loud, “Well, then, we’ll be in the other 85.”
John woke me this morning to tell me what music he wants at his funeral. I wrote it down, but I countered with the music I want at mine.
*
His kidneys can hurt everything else: bones, muscles, blood, eyes, hormones, heart. His doctors are puppeteers with more and more strings to pull.
The dye they use to look at the heart kills the kidneys, so we stayed blind until dialysis. We nearly waited too long. It turns out his heart is starved for blood.
They could not send out a balloon to open the way to his heart. They will have to do quintuple bypass surgery.
*
He wants to leap into it. Stay in the hospital, have the operation tomorrow. We are obliged to wait ten days.
The ten days are a gift. We go from numb to afraid, sad, almost relaxed. There is a little time to tell people, to finish small silly tasks. To go on line and scare ourselves with bloody details, to reassure ourselves with our surgeon’s life story. To say and say and say I love you, the only thing that is worth saying.
There are no grand gestures to make. We live in grace with one another.
*
The diary stops here; the grace does not. He survived open-heart surgery. It made him eligible for a kidney transplant. For seventeen years more he relied on part of the body of our oldest son—a different three-way union. Together we gave of ourselves as much as we could, took trips, made music, made art and made love.
But of course, this story loops back to its beginning: kidney failure, dialysis. Now I am learning how to live without him.
Kristin Camitta Zimet is the author of Take in My Arms the Dark and the editor of The Sow’s Ear Poetry Review. Her poetry is in journals in eight countries. She has been a full-time caregiver, two-time cancer survivor, EMT, hospice patient care volunteer and hospital volunteer in the NICU. She is co-authoring a book about aging and dying.