My Life in the Chair, by Lillian Firestone

I was determined not to let dialysis take over my life. But it already had. […]

Kidney Donor. Hey Paul Studios
Kidney Donor. Hey Paul Studios

The edge of death, the gift of life

I was determined not to let dialysis take over my life. But it already had.

Three days a week I spent three and a half hours in a reclining chair, tethered to a machine that vacuumed-up, filtered, and returned my blood through a protesting vein. Alternate days I spent dreading it.

All my former interests and activities were now subsumed by this new reality. I could skirt around it but the fact was that my life as I knew it was gone. There didn’t seem to be a reprieve.

Unless you had a transplant donor, once on dialysis, you never got off. If I did nothing, tried nothing, there would be only an unvarying round of pain and dread, followed by death. Living in the spaces between treatments, how to go on was strictly up to me.

Once upon a time I had a friend diagnosed with an “always-fatal” cancer. Determined to live she tried everything—all at the same time: Western medicine, Eastern remedies, chemo, radiation, lipids, acupuncture, visualization, meditation, even Hawaiian chanting. When the cancer disappeared I asked her what had cured her?

“I really don’t know,” she said.

Couldn’t my kidney recover as well, I thought? It is an organ after all, capable of regeneration, and someone must have that knowledge. I just didn’t know who.

A medical error was to blame.

“Can I give you a dye injection?” the x-ray technician asked. “It will help me see the kidney better.”

“Yes,” I said, unaware that this radioactive dye was fatal to an already weak organ.

Was it my ignorance that I allowed it? Ignorance of the law is no excuse. It was all a mistake.

Live with that.

As my friend had done, I tried alternative remedies. Something had to work. But nothing did.

At the clinic we were randomly assigned to one of the long rows of facing chairs—you do not undergo dialysis in private. We were intimately connected with each other’s suffering though we pretended not to be. I dreaded being opposite The Scratcher.  He was blind and used a long-handled wooden fork to attack the uncontrollable itching of some part of himself, as skin breakdown is a component of the dialysis process. What was so hard about trying not to watch him? Pity and revulsion struggled together. Sometimes the experience opened me to the common humanity of all of us “end-stagers.” I found myself envying the harried, fast-moving techs, then remembered that they also were mortal.

There were four shifts at the clinic—the first started at 6 a.m. and enabled the stronger to have their blood vacuumed before they went to their jobs. At 10 a.m., wheelchairs outnumbered the walkers—a patient population tubed to oxygen, to old age. Another shift in the afternoon; another in the evening. I tried all of them hoping to find one that made dialysis seem like an afterthought and not my real life.

My years of public relations taught me how to work a crowd. It gave me something to do. I tried to make eye contact with the occupant of each chair that I had to pass; not all would meet my gaze. “Hi, hello, you ok?” To each tech a smile, some remark, as if I were running for office, for class president of the end-stage class. I could see that some of the techs were also trying to lighten the weight of an overwhelmingly negative field.

When Jennifer came on shift it became a party. Plump, pretty, her very bleached blond hair calling out, “Look, look,” she made theater out of whatever was at hand—scolded, flirted, yelled, pretending to be outraged, a spectacle staged to help us. And we needed help.

To spend my life on a machine that enabled me to live seemed like a hard alternative to living. Would I rather be dead? I kept coming, so I guessed not.

Years of practicing meditation didn’t magically make this reality go away. I still had to find a spiritual practice strong enough to sustain me. The alternative was to lose myself in a book or the TV, as if I didn’t exist at all.

The dread of the procedure wasn’t entirely psychological. The body resisted. My veins twisted and rolled in an instinctive attempt to escape. Some techs grew impatient, stabbed at the vein, and a gush of blood would splatter my clothes, the chair, the floor. Another attempt would be made. And another.

One time, Francis, a Ghanaian tech with a linebacker’s build, sat quietly next to me, tapped my arm for what seemed like a long time until magically he slipped the needles in and it was done. I could not help but love him. The shifts sometimes changed. Once to the amusement of the other techs I walked out when I saw he was not there. On my cab rides to the clinic I started to pray he would be there.

Francis looked puzzled when he saw me one night. He wasn’t due to work that shift but had been called in at the very last moment.

“What are you doing?” he demanded, “You brought me here.”

I tried to look surprised. “Nothing,” I said, “I didn’t do anything.”

He laughed.

As year passed, another. I was registered for a kidney transplant and appeared regularly at the coordinator’s office, as the system required.

“What are my chances, really?” I finally asked him.

“There are 6,547 people on the list ahead of you, so I would say your chance of getting a transplant is about as good as winning the lottery.”

That was a shock. It was getting harder to keep going. The necessity for a stronger inner work grew more urgent. What to try?

Among all the teachings of George Gurdjieff what struck me was his first aphorism: Like what “it” does not like. Since I didn’t like anything in my present predicament, it seemed made for me.

Everything I did not like, all habitual negative emotions, had to be countered immediately by their opposite. Walking along the narrow corridor to the treatment room—dreading what was to come—I tried it out. “I like this,” I told myself. “Not true,” my self responded. I tried again—and again. Still not true. I could not like this moment.

Teresa’s wheelchair blocked my path. Her pretty adult head was set on the malformed body of a child with only stumps for feet.  Today she was crying bitterly. “Don’t cry—everything will be all right,” I wanted to say, but couldn’t.

Returning to “I like this” was impossible.

“Liking” never happened. But the exercise had an unexpected result—something new appeared in place of the dread. Like and dislike began to seem arbitrary, almost irrelevant, equally unreal. My likes and dislikes created the suffering. There is only what is. When I was able to accept the world as it was, my personal drama disappeared.

Black Elk
Black Elk

Storm, a thirty-ish patient who was also a nurse stopped me one evening. She had a striking mane of thick blond hair which she tossed for effect. It gave me some comfort to see her there among all the elderly and infirm.

“How do you stay so positive?” she demanded. Seeing my cheerfulness gave her hope, she said. As I never felt particularly cheerful, I admitted reluctantly that I tried often to pray. “I don’t know how to pray,” she said. “How do you do that?”

Prayer is a complicated subject with endless possibilities. Where to begin?

The Way of the Pilgrim suggests, “Lord have mercy” repeated one thousand times a day, while keeping the count. Occasionally I could get to two hundred before losing track.

“You need to know only a few words” I finally explained. “Just say, ‘Lord Have Mercy’ to yourself and try to feel it.”

She listened intently.

After treatment she found me again.

“Tell me again. I forgot the words,” she said.

How was it possible she forgot? Wasn’t she desperate?

When I hadn’t seen Storm for a few weeks, I asked Francis.

“She had her transplant,” he said.

So it was possible to escape. Transplants actually occurred in our forgotten segment of the universe. But my buddy had left me behind. I was devastated.

I began to look for alternative transplant facilities that friends recommended: Albuquerque, Israel, Singapore, Shanghai, even Thailand. But nothing panned out.

A year passed. Then another, then another. Something would save me, I knew, but as time went on the White Knight didn’t appear. Was I mistaken? Dialysis works for only a certain time, and it was running out—I reviewed my life.

And found a new aim: to face each step with courage, like Black Elk who at the end put on his best clothes and sang his death song.

Lord Ganesha, Pune, India
Lord Ganesha, Pune, India

Do angels walk the earth in the guise of ordinary humans? Opinions vary.

One day a tall striking brunette fashionably dressed—I didn’t remember seeing her before—stopped by my chair.

“You have an old Hepatitis C infection, don’t you?” she said.

“It never gave me any trouble,” I said defensively.

“Would you accept an infected Hepatitis C kidney?”

“Gladly” I replied. “There is a cure for Hep C.”

“Don’t leave town for the next few weeks,” she cautioned.

Two days later she called and told me to report to the hospital at once.

“We have a kidney for you.”

After a successful transplant operation, I found a new yogic exercise called: “Gaze of the Elephant”: Look upon everything as if for the first time. Look upon everything as if for the last time.

Carrying chocolates and cakes I went back to the clinic. Seeing the techs as if for the first time—so alive, so welcoming. They had tracked my operation in real time and had felt a triumphant, personal joy in the outcome. I had not expected that—part of a feeling world I had not fully experienced, an aspect of reality hidden from me.

Looking upon the techs as if for the last time was more difficult. There was regret. And did I really believe that I would never have to see them or the clinic again? Did I dare to believe?

Walking down the familiar corridor as if for the first and last time, it was not possible to hold both impressions together. But in the space between them were glimpses of freedom from the tyranny of time, of yesterday and tomorrow, and moments of just immediate now.

Only the still-raised scar on my arm connects me to the reality of those four years. The rest of the time, the memory has vanished. As if in a dream. ♦

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By Lillian Firestone

Lillian Firestone (1932-2024), was Parabola's editor-at-large, and the author of several books including most recently Repairing the Past: Fate, Destiny, and the Possibility of Change.