Notes on My Dying

I believe in death with dignity, don’t you? At least in the abstract.
Grace. Nobility. Even beauty.
As abstract as that.
As abstract as other people.

 

As abstract as characters in fiction.
"All anyone wants is a good death," I read. This is in a short story.
It’s a prize-winning story, a story about a nurse who is dying of cancer. She is graceful, noble, and even beautiful.
I hate the story. I hate stories about people dying of cancer, no matter how graceful, noble, or beautiful.
When I read the author’s note, I learn that he is an administrator in the famous cancer center where I am enduring chemotherapy and the news that I am going to die very shortly.
This is what I say to his story: I do not want your good death.
This is what I say to his biography: You make your living off other people’s deaths.
This is what I insist: I am not your story.

 

If I were constructing this as a story, with myself as the protagonist, I would not only be dignified, I would be brave and beautiful, courageous and kind, humorous and honorable.
I would enshrine myself in narrative.
But this cannot be a success because the elements of narrative are corrupted.
There is no beginning. The beginning is not diagnosis. The beginning is before that. Before the suspicions, before the reconstructed past when one began to feel this or that, before everything except a tiny cell that got twisted and frisky. The absence of the beginning is compounded by the middle collapsing into the past.
Everything is end.

 

Some endings are longer than others.
I am trying to act as if I have a future.
When I’m not too weak, I go to work. I go to the library and the post office. I go for walks. And when I am too weak, I go anyway. The worst that could happen to me is already happening.
I cannot pretend I am who I was a few months before, so I pretend I am a fashion model. I am a Buddhist nun with a shaved head. I am anorexic. I have a lovely pallor. I have a noble beauty, a beautiful nobility.
I am not interested in fooling anyone except myself.
I call it survival.

 

I survived a dangerous adolescence.
In school, the sentiments of "Death Be Not Proud" belied its title. On the large and small screens, "Love Story" jerked tears, and the body bags and the immolated monks screamed for my attention. In the streets and bathrooms, needles in the arm and suicide sang their romantic dirges.
Not all of us made it.
When I made it to 21, I assumed I would live until 87.
Death was for the young. And the old.

 

At 26, I was hospitalized intermittently for six weeks with a strange malady that spiked my temperature to 107 degrees.
"You should be dead," the doctor said, confirming my temperature.
"I’m not," I replied, thinking myself witty.
The year was 1984.
I was sure I had AIDS.

 

Instead, I was diagnosed with pesticide poisoning, contracted from the sugarcane fields where the migrant farm workers who were my clients worked.
A nurse told me I should be grateful for the advancement of antibiotics.
No one told me I should be irate about the development of agribusiness.
I knew I had almost died.
I thought I was cured.

 

There are those who argue that cancer is ancient, prevalent now because other diseases have been cured and humans live longer, and unconnected to environmental degradation.
My body knows differently.
But who is there to blame? Industrialization? Capitalism? Corporate greed?
Anger is the second stage of dying in the classic work of Elisabeth Kübler-Ross. She notes that dying can cause a "usually dignified" person to act "furious," but with a bit of tolerance by the caregivers, the patient’s anger can be soothed. Dying people, above all, want to be heard.
I do not want to be heard.
I do not want to talk.
I want to live.

 

My first decision about dying is that I will die at home. I will have the control and comfort I would not have in a hospital. The winter sun will be weak but brilliant, sifting through my window, refracting through a prism I have had since I was young. Then the light will fade, leaving only a slat of brilliant pink. Twilight was once my favorite time of day.
My second decision about dying is that I won’t. Like all my most outrageous ambitions, it first appears on my horizon as a question: "what if?" What if I refused to die? I am neither stupid nor naive and know that it isn’t a simple matter of choice. Nevertheless, my aspiration persists.
The first stage of dying is denial.
Ask anyone who has read Elisabeth Kübler-Ross.
Or who has not.
Still, what if I refused to cooperate?
The manifestations of my resistance are illogical and small. I refuse Ensure, Ativan, a port, a wig. I refuse to talk to my oncologist, who warns me about depression. Depression, the fourth stage of dying, is the "preparatory grief that the terminally ill patient has to undergo in order to prepare himself for his final separation from this world."
If I were talking to her, I would tell her I am not depressed, although I may seem defeated, decimated.
I am simply deep.
I am inside myself so deeply the world is an abstraction. I cannot bridge the distance between my self and everyone else, including the ones I love most. The ones I said I loved more than life itself. Now, this is no longer true.
My death is only my own. No matter the connection, no matter the love. No matter that I came from the bodies of my parents or that my child came from my body or that my lover and I have joined as if we inhabit one body without boundaries. Each body lives separately. And dies separately. Perhaps I knew this before. In the abstract.

 

I think about taking someone with me.
If I’m going to die anyway, shouldn’t I kill someone? Shouldn’t my death be useful? I scan my personal life but find no one evil enough to deserve to die. My passions are faded. I concentrate on the person I once hated most, but cannot seem to despise him enough to deprive him of his narrow miserable life.
Assassination is a possibility. I imagine buying a semi-automatic weapon. I have enough time for the license waiting period, to learn how to shoot, to do the legwork necessary to find a gap in the security. I think it would be relatively easy, since I’m not worried about getting caught. I would prefer not to die in prison, so I guess I’d kill myself as soon as my deed is done. I settle on a certain Supreme Court justice. But I find I don’t care enough to kill him. Or even to think about it more than once.
Dying is lonely.

 

I am popular in my dying: People I have not heard from in several years call me.
"Is there anything you want to say to me?" she asks.
She is crying.
"My mother died of cancer," he says to me.
He must think this is an expression of empathy.
"You have always meant so much to me," she blurts.
She does not stumble over the past tense.
I never respond.
They must think I am being dignified.

 

Someone actually tells me this: "I really admire the way you are conducting yourself with such dignity," she says to me.
"I’m not."
"Well, it seems like that to us," she persists. She is a colleague and has always been comfortable speaking for everyone at work.
"That’s not the way it seems to me." I prove I can still argue.
She smiles as if she thinks I am being modest.
I am not.
I am trying to be honest: I am all claws and sobs and vomit. I am small and getting smaller. I am bereft and bald. I am more tired than tired.
How could she not see that when she looks at me?
But she does see that. Despite the dignity, when she looks at me she sees I am dying.
And when I look at her, I see my dying reflected back to me, a shiny silvery object without form or function, an abyss of pity.

 

I am grateful for the people who do not pity me. Or at least who do not show their pity.
We have written letters for almost 20 years. When I write to tell her the news that I am dying, I ask her to try to write to me as she always has, to write to me about her life and what she is reading. She writes me every day. Every single fucking day. Beautiful exquisitely boring letters about her job or what she ate for breakfast or something she hopes will be amusing. I live for her letters.

We have written letters for eight years. I fudge the fact that I am dying, but also ask her to keep writing to me as she always has. Her letters get longer. Pages and pages that require extra postage, pages filled with assessments of novels, pages brimming with struggles about her own writing, pages of poetry. I reread every page until I believe that I am strong enough to write back.

We have never written letters. She sends me a card. "Here’s a second opinion: You’re the greatest." It’s in a package of gourmet food that once would have been appetizing.

We have lived together for more years than I can count. She was once my lover, now she is my caretaker. She tries not to cry in my presence. I am not so considerate.
She brings me books from the library when I can’t get there myself. "Novels," I tell her, "from the new fiction section." Sometimes she brings me the same book twice. Three times. Sometimes I recognize when this has happened.
Maybe I believe I can save myself through reading. Or at least escape.
Or maybe it is that I have always read. Books were my first acquaintance with grace.
Although soon I stop reading fiction. I know she is screening the selections, but death penetrates the pages. Sometimes it is in the prize-winning story. Sometimes it is there casually and without warning. It seems there is always a convenient cancer death in the background somewhere, even if only in a character’s memory.
In novels, they never recover.
Loss. Grieving. But life goes on.
I close the book and reach for the next one.
Soon, I am requesting biographies. As if I have forgotten that the person in the biography is going to die. As if I didn’t know somehow that Rachel Carson died, at 57, of cancer. She hid it from the world, as if her dying was an recrimination of her work linking the toxins with tumors in humans, an irrefutable rebuke that she was less than objective. Or perhaps she was trying to be dignified.

 

Desperation is not dignified.
Perhaps that is why Kübler-Ross does not name desperation as a stage. There is "bargaining," the third stage, but she gives it short shrift. She theorizes it as a belief in a reward for good behavior. She doesn’t seem to understand the will to live.
It allows the decision to be strapped into a chair and poison injected into my veins to seem rational.
It propels me into the alleys of alternative healing, alternative theories, alternative alternatives. I visualize and vitaminize. I spread myself on the floor of an apartment in Chinatown so that a man can bruise my flesh as a way of clearing my meridians. I ingest herbs from different continents, animal parts pressed into pill form, teas that smell like mentholated piss.
I meditate.

 

There are those who argue that cancer is a message: "Appreciate the beauty of each moment."
The moments most often invoked are populated with children. What could be more precious than the kiss of a toddler?
Other moments to be cherished occur in nature: oceans, sunsets, trees and their turning leaves.
Even a circumscribed life has its moments to be appreciated. The soft sheets of the bed, the taste of a strawberry, the flames in the fireplace.
Never mentioned are the moments in which I am managing to live. The moments, long and slow, during which I am dizzy and puking red on the bathroom floor, trying to appreciate the texture and temperature of the tile against my cheek. (How smooth! How cool!) The moments, as panic-filled as a fire, when I can feel the chemical burn in my veins and watch the skin on my arm lose all its color. The moments, shallow and distant, when I try to think about anything other than what is happening to me.

 

Acceptance is the fifth and final stage of dying, according to Kübler-Ross. She warns that the harder the struggle to avoid the inevitable death and the more denial, the more difficult it will be to reach acceptance with peace and dignity. In her examples, the patient wants to die, but the medical professionals believe it is better to prolong life.
This is not my experience.

 

My medical professionals are very accepting of my death. They proclaim it inevitable and do not deny or struggle They do not seem to believe it is better to prolong my life. They are very noble.
Perhaps they read Kübler-Ross in medical school. Or perhaps they’re simply burnt out. Or they know the grim statistics for my rare cancer and see no reason why I should be in the smallest of minorities who might survive.

 

I loot the world for survival stories. Not the narratives of Himalayan treks or being lost at sea, but illness. The bookstore has an entire section on diseases and five shelves on cancer. I inspect every title, except the "prevention" ones, looking for possibilities. I buy a book by a Christian fundamentalist woman who attributes her survival to prayer and coffee enemas. I buy a book by a scientist who attributes his survival to vitamins. I buy books on healing by popular writers who intersperse their homilies with anecdotes of people given "six months to live" but who are alive 10 years later.
Possibilities.
I do not want nobility or beauty.
I do not want a good death.
I want possibility.

 

I am in my office, looking at the diplomas on my wall and sobbing over all that accomplishment, now utterly worthless. The skills I had mastered are the wrong skills for my situation. I know no medicine; my last biology class was in the ninth grade. I can’t even cope: my degrees are not in psychology or divinity. I learned how to think, how to read, how to argue.
My faith--in hard work, in intellectual pursuits, in books--has been misplaced. Nothing I know could save me. I want to rip my diplomas from the wall.
With dignity.
But I don’t have the strength to carry a single book down the hall to the classroom. I can’t stand up more than three and a half minutes. I no longer have the ability to assassinate that Supreme Court justice or to recall which one I had singled out as especially dastardly.
Still, I refuse to accept I am dying. I prefer denial, anger, and even desperation.

 

When I can sit up, I spend hours at the computer, leaving no website unturned. I become an expert in my rare type of cancer. A medical dictionary replaces my thesaurus.
I read books, articles, pamphlets. I have begun to eschew fiction. I want true stories of survival. I relish attacks on statistics and science.
I avoid all eulogies, all obituaries. I do not update my will or think about the existence of my property without me. I don’t care what happens to those hundreds of letters, the ones I have written or the ones I have read. I don’t worry about my office and its diplomas. I am not interested in any legacy.
I try to think. To argue.

 

There are those who argue that cancer is an infectious disease, like tuberculosis, because a gene-based disease would have been eliminated through natural selection. Cancer could be cured by the correct antibiotic.
I would like this to be true.
Now.

 

I had thought I had looked at death before. I had seen her dance with the ones I loved who have died. I had suffered my own flirtations. This time, though, death is gazing back. Not just a glance, but a full seductive stare. As if we are in a bar and I am dressed in black leather, ready for adventure tinged with danger.
How alluring to be chosen.
This is what she whispers: I can follow her with grace and dignity. Or I can resist and it can get ugly. Either way, she will win, she promises me.
That is her story.
If she writes my story, I will be brave, beautiful, and dignified. The word struggle will be used, but with no incidents of sweating or cursing or thrashing. In her story, it will be as if I have fallen into a deep sleep.

 

As long as I am still able to write, this is my story: I resist the lure of dignity; I refuse to be graceful, beautiful, and beloved. I am not going to sleep with her. I’m going home, alone.
Back to my books, my computer, my Australian herb and shark cartilage, my visualizations, meditations, and bruised meridians. Back to my bedroom with the prism at twilight. Back to my office and its useless diplomas.
Back to my life.

Ruthann Robson is on the board of www.sarcoma.net, a Web site devoted to the rare cancer of sarcoma, with which she was diagnosed in 1998 and from which she is now in remission. She is a professor of law at the City University of New York School of Law and has written widely on lesbian legal theory, including "Sappho Goes to Law School" (Columbia Univ. Press 1998). She is also the author of several novels, including "A/K/A" (St. Martin's Press 1998).