Unit 7>Section 2>Exercise 4>Coping with death
Clinical correlate 4: AIDS: then and now
As Thomas Lynch wrote in a review of Sandra Gilbert’s book, Death’s Door, “Like writing about sex, writing about death draws greater scrutiny because when it comes to dying—and here the numbers are convincing—everybody’s doing it.” The following are some examples of writing (and other art) that show how different individuals have used their art to grapple with their mortality. There are endless reflections on death, needless to say, and these selections are as random as dying itself. At the end of this section, you will be asked to contrast these reflections with evidence in yourself, in patients and our society, of the denial of death. Read or view the following examples, and answer the discussion questions for each.
The following are excerpts from a diary Stephen Mendelson wrote as he was dying of AIDS
Dying of the light (Mendelson)
March 19, 1995 The Washington Post
June 6, 1993
It happened this way. A crow came to my window and said it was taking me to the dark side of the moon. I asked why, and it told me not to be such a fool.
Often in my life, just before bad things happen, a black bird appears. I cannot explain it, but there it is. Once, as I pedaled my bike, a crow slammed into me, beak sunk deep in my flesh, wings beating warm and frantic against my chest. I still bear the jagged black scar of it, and of the rape that followed a short time later.
Now here was the crow again, on my windowsill, pecking the glass. The phone was ringing. It was my doctor and he told me Steven I Have Bad News and before he said what it was I knew what it was.
I write and illustrate children’s books. At the moment I learned I had the AIDS virus and would someday die of it, I was at the easel in my apartment in Chicago finishing a watercolor book called “Stupid Emilien.” It is the story of a rabbit in czarist Russia who wanted nothing more in life that to sit on his potbelly stove in the winter and enjoy the heat and sit on the roof of his house and enjoy the breeze. By the final page, one understands that Emilien is not so stupid after all. I hung up the phone and finished the last panel. When I look at it now, I see it is curiously shadowed. Too much black.
I don’t hate the crow or even feat it anymore. I suppose I welcome its return. It gives me comfort. Don’t worry, Steve, it is saying. This is meant to be.
July 5, 1993 Exeter, NH
A boy came lusting after me in the library. He was maybe 15, beautiful and vulnerable and hot as a tailfin in the sun. He followed me with a hunger I should have found exciting. But I pretended not to notice. I wanted to shout at him, “Don’t you recognize death? Run! Now!”
What a world that poor kid has to look forward to.
Memory is in pictures. Some are snapshots, some are still lifes, some are cartoons, some are sharp as woodcuts. I remember lying on my back in the grass in an unmowed field on the first day of summer vacation between second grade and third. Hidden completely by the grass, visible only to the Almighty, I stared at the clouds. In my head, with symphonic clarity, played a piece of music I had recently heard: the Berceuse from Stravinsky’s Firebird. I remember thinking that this was a perfect moment, and that so long as I could remember it in precise detail, it would never end. Whatever is, is forever.
July 9, 1993 Providence, RI
At the Rhode Island School of Design, Tom Sgouros taught me to love watercolors. Tom is a gifted landscape artist. Three years ago, over five days’ time, he lost his sight.
Today I visited my teacher and friend for the first time since his world became a murky taupe. I was so fearful of failing to deliver the requisite compassion salted with doughty good cheer, that I failed to realize an important fact. It turned out Tom did not want or expect anything from me.
Tom has a sliver of vision at the corner of one eye. He peeks through this, which is something of a trick since his tiny window exists only at the periphery and to see it you must not look for it, but coax it out coyly, by looking away. In this sly manner, Tom obtains glimpses of scenes, which he paints the only way he can, with big, bold brush strokes on large canvases, ferocious abstractions, nothing like the elegantly detained landscapes for which he is known.
Tom said he wished I could see the canvases he paints in his head. Oh, my friend, how I wish I could.
Tom lives tormented by his unfinished work. I may well have the luxury of dying when my work it complete. How dare I complain?
I was first kissed when I was a teen. We were in a car. I recoiled, rolled out the door, and threw myself on the ground and bit into the damp dirt, and spat it out, and raked grass over my tongue and beat my head against the ground. Anything to expunge the foul event that had occurred. If you are gay, you are gay from the moment you have your first sexual thought, from that first grinding knot, and all but the most self-deluded gay men understand this. For most of us, though, there comes a moment when your arousal betrays you to yourself in a fashion that cannot be ignored. It is seldom an entirely pleasant moment. It is always-always—deliverance. I never again felt guilt in loving a man. Fear, but not guilt.
August 4, 1993
I took Daniel to the Art Institute of Chicago. He is 13, a distant relative. I had dreaded the trip. I felt scoured by pain and oppressed by the responsibility of having to entertain a child. The sky was gray on gray.
Daniel likes to draw. He leapt excitedly from painting to painting, noticing things that I—blinded by my education—no longer even saw. How brush strokes recapitulate an artist’s mood. How paintings, at a distance, rearrange themselves into entirely different images often more compelling than close-up.
The joy of discovery is a never-ending process. It is the only reality. Pain can main you, or it can become just another artistic tool.
How does one thank a child for such a gift?
Thank you, Daniel.
When I was 18, I told my mother and father I was gay. She said she knew, and was glad I told her. He said he knew, and was sorry I told him.
My father is a decent, brilliant, frightened man. Sometimes, he drives me to despair.
September 8m 1993
Few people are deliberately cruel. When they learn you have AIDS, most manage a civil conversation, expression of sympathy, promises of future concourse, etc., before they flee like a skater bug on a pond. Sometimes, people are impertinent enough or honest enough to ask how you got it. In my case, there are two answers. The first is the only important one: It was out there and I picked it up. Anything more is conjecture. I was usually careful, but not always. I was usually monogamous, but not always.
The second answer is what I believe to be true. I believe that at the moment the virus entered my body, it was June 5, 1987, a cool Friday evening around 9 o’clock. I was in a washroom at the back of a dirty movie house in Boston with my pants around my knees and a towel jammed in my mouth to stifle my screams, being held by two men and raped by a third. I had gotten bad news about a job I wanted. I do not drink, but that night I was drunk. I do not frequent sleazy places in disreputable neighborhoods, but there I was.
There is not much to say about rape except that forever after there is a fundamental part of oneself that is torn away, and the remainder of your life must be spent trying to find that pathetic filigree and tat it back on as best you can. It flaps there like the half-buttoned seat of a Doctor Dentons, ludicrous, humiliating, exposing you.
October 3, 1993
Today I was supposed to leave for San Francisco to visit my friend Tim, whom I love. In a sense we are all dying, but Tim is dying more rapidly than you. He is dying even more rapidly than I. He is dying now, of AIDS.
I could not get on the plane. It is because I am not ready to see what awaits me, not yet. For all my bluster, I have betrayed a friend.
I am in far too much pain to draw people today, so I walked the streets and sketched buildings. Can’t bear confronting people. People speak in banalities. Brick and mortar speak with timeless fluency.
November 20, 1993
Horsemen! Horsemen! History, you bleak tablet. Empires crumble, learning fades, beauty is shattered. Thundering death. Horsemen! I hear them, I hear my doom.
Today is my birthday. Thirty-five and still alive.
Hooray, I suppose.
Which will kill me first, false hope or despair?
November 22, 1993
The bottom dropped out last night. High fever, intense pain, couldn’t breathe, couldn’t move, my speech became imprecise and I couldn’t organize my thoughts.
And then this morning death came to visit. As I lay in bed unable to move, I felt it next to me. Suddenly I was on the ceiling looking at my body. I felt wonderful, no pain, no fear, only an odd but soothing tingling. New Age enthusiasts would call it an out-of-body experience. I prefer to think of it as a free sample. Minty fresh Ipana. New Honey-toasted Reality Chex. Try it Take a test drive. Go for a spin.
I liked it.
Suddenly I was looking at the ceiling again, gripped by pain, but not as scared any more.
If free samples didn’t work, the mailman’s job would be a lot easier.
Molly, my father’s mother, asked me if I had AIDS. I said I did. This is what my Grandma Molly said: “Your poor parents.”
November 26, 1993
My old friend Alan came for a visit. He is an odd one. Rigid, dowdy, socially inept, in my mind he has always embodied New England stodginess at its Calvinist worst. His lover, Rusty, was Alan’s one rebellion against his heritage. Rusty was a stripper, an alcoholic, a maddeningly promiscuous man, but Alan stayed fiercely loyal to him, long past the point of reason.
Alan’s response to Rusty’s death was this: He gave up his successful career as an architect and went back to school to become a nurse, to work with the dying. The well from which this man draws his strength is deep and cool. It is New England stodginess at its puritanical, Calvinist best.
I am rotting from within. There is pain in my spine, feebleness in my hands, anger in my heart. Anger has always sharpened my pen, but now I am a slave to my own self-pity.
As is so often the case, one’s greatest strength is ultimately one’s greatest weakness. My fuel consumes me. I am tearing myself apart.
December 16, 1993
This is Symphony No. 4, written when Sibelius was 45 and battling cancer. It was a battle he won—he lived into his nineties. But never again did he write so brilliantly.
December 20, 1993: The Death of a Salesman
Tim traveled for a big company, selling biotech equipment. He was an elegant, handsome man who secretly thought himself a gargoyle because he was born with only one ear. And so he barreled through life an insolent leper, in your face, daring you to deny him. His appetites were boundless. What a salesman. What a con man. What a splendid, sordid life. A few months ago, when an airline tried to bump him from a flight because other passengers complained that he had visible lesions, Tim took an IV bag, brandished it for everyone to see, hung it from the overhead compartment and sprawled spread-eagled in his seat, tongue lolling, defiantly diseased. They dragged him from the plane, and later had to settle a lawsuit for their brutality.
Today, Tim is in a hospital bed in San Francisco. I am going to see him, finally, not because I am any more ready to confront what awaits me, but because, if I must choose, I can sooner face my future than my guilt. This is how we live, my friends, all of us, in a triage of our fears.
I have arrived, Tim, I am here at the airport. You can’t know how I dread this.
When you face death from AIDS, you must make a choice. I have decided that when there is no way to win, one must lose gracefully. This has been the benefit of dignity and the risk of despair. Tim has chosen the alternative course, which has the benefit of passion and the risk of betrayal. In the last year, Tim has been going to seminars with other desperate people. He kept calling me with news of miraculous quack cures. Once he mailed me a jar of photographic developing fluid that you were supposed to slather onto your skin. He said it burned like the fires of Hell but performed miracles. I kept it in my refrigerator, unopened, and finally sent it back to him. He was furious with me for my lack of faith.
Here lies Tim, in his hospital bed, caved in like a rotted jack-o’-lantern, gasping for breath.
December 27, 1993
Tim forbade me to draw him. For two hours he balked, but finally he relented. And so these are my final portraits of my friend. As soon as I was done, and showed them to him, he began to cry. I think, in that moment, he understood it was over.
He said he loved me, which was not easy for him, and I said I loved him, which was quite easy for me.
January 1, 1994
Back in Chicago.
A new year. Life proceeds apace. My soul has to hold me now, because my body has begun to betray me, Today, I became pathetic, a turtle on its back, and the world became a nasty kid with a baseball bat.
Here is what happened. I got dizzy and fell off my exercise bike. Bruised my bottom. Threw out the bike, because if I didn’t, it would just happen again. Took a bracing walk. Had sex with a stranger. Used two condoms, just to be sure. Did some sketches. Got a phone call. Tim died.
January 27, 1994
I took my mother and father out to lunch and over bagels we discussed the possibility of my suicide. Not now, but whenever. I said I am content to be a living ghost, subject of pitying sidelong glances, mourned before he is actually gone. But I do not wish to become a living corpse.
There are times in everyone’s life when one’s parents can seem impossibly stupid, hidebound, hectoring, cringing, contentious, censorious, belittling, sanctimoniuous, obstructionist, lame. This was not one of those times.
These are not bad people, my parents. What a time to find out.
For years I was a political cartoonist, handsomely paid by newspapers like The Washington Post to draw important people as cartoon characters with little bodies and huge heads. I was considered good, but mean. Somehow, Reagan kept coming out looking like a dimwit, Kissinger like a scheming homunculus, Haig like a mountebank. I didn’t intend to be malicious, but when you are drawing politicians, your inkwell sometimes fills with contempt. I suppose it was good for my soul, if not for my wallet, that I stopped doing it.
I much prefer drawing for children. Children intuitively understand right and wrong. And, if you catch them early enough, they have not yet learned the defenses by which we suppress our feelings and rationalize our collective guilt. A child would look at Kissinger, watch his furtive eyes, listen to his voice, and conclude not that this man is a marvelous intellectual with a fabulous vocabulary, or that he is a tragic hero of global importance juggling the good of the masses against regrettable but necessary acts of restrained situational violence, but That Man is Fibbing.
I much prefer drawing for children. They haven’t been ruined yet
As Shostakovich lay dying he composed music, despite osteoporosis so severe his finger bones broke from the effort. He called it the “gymnastics of dying.” I decided today that I wanted to be drawing on my deathbed. Not for the drama of it—there is ample drama in dying, whatever the logistics and geometries—and certainly not because it denies or defies death, but because it affirms life. I wish to die creating something.
Possibly I will be too ill or scared or weary. Possibly the only tangible thing I will be creating will be my own death. That thought has occurred to me. And that will be all right too. There is creation in that too.
February 19, 1994
My friend Dale is stricken. Her little cockatiel died. The grief on her face is palpable. She looked this way many years ago, when she learned that her dear friend Jamie had died suddenly a half a planet away, in Japan.
Today, Dale found herself looking in the mirror, thinking about her dead bird, and about her dead friend, and about how Jamie will never have wrinkles around her eyes.
This is how we accept death.
This is how we accept death.
This is how we accept death. In tiny wobbly baby steps.
Some time ago, a silversmith friend of mine gave me a trinket he made, a copy of an ancient Norse amulet called the Thor hammer. Its mythology is intriguing. It is to be given to a great warrior before he goes into a battle he is certain to lose. It confers not protection, but passage to an afterlife. It is to be reclaimed from his bloody body and passed on to someone else in the same circumstances.
So it is about acceptance.
Big decision ahead.
To whom shall I will it?
I know so many who will need it.
April 6, 1994
I have a friend who is sick. Tonight he told me about how when he was a little boy, he spent his first seven years looking for something, and finally his mother told him he’d had a twin brother who died at birth.
From that time on, he said, he has always understood that we must live and die alone.
I agree. In the end, it will be only me having the adventure. But whereas my friend has seen the crow and is terrified of it, I am not. I suspect the crow has a sense of humor. What awaits me could be anything. It could be rapturous or redemptive of thunderously judgmental, or punishing or it could be boring or it could be absurd, such as an endless game of miniature gold. But there is something.
I will prove it to you. I will send you a sign from my grave. You will know it if one morning you awake to discover your bedroom tastefully decorated.
May 2, 1994
AIDS is playful. It attacks different people differently. It turned Tim into a monster of suppurating sores. I look okay, if consumptive. I sometimes need an eye patch because of blurred vision. I use an oxygen tube when I feel faint. I walk with a cane. And then there is this pump attached to a belt, feeding morphine directly into my heart.
I am a morphine addict now. There is no physical pleasure in this, at least not in the conventional sense. You are the man who hits himself in the head with a hammer because it feels so good when it he stops. You are reduced to finding pleasure in the absence of pain.
I was the illustrator for several of Art Buchwald’s books. Art is a delightful, warm, vulnerable neurotic. Like many celebrities, he can sometimes be a hellish pissant. He delights in throwing his weight around, and the editors at Putnam walk on eggshells around him. I did too, until the third book, when I learned the secret of how to deal with Art.
Art loves to demand changes. Whatever you do, however good, he needs to find something to criticize. So I would produce the dozen or so illustrations I was contracted to draw, but submit only 11 of them. I’d hold one back. Instead, I’d submit a bogus one, something aggressively bad, what I call a purple cow: inept perspective, puerile concept, people with six fingers on a hand, that sort of thing. This gave Art something about which to bitch. Reluctantly, I would; fess up, yessir, Mt. Buchwald, I really screwed up on this one, lucky for all of us you noticed. And then I would meekly slink off, spend a couple of days listening to Prokofiev, and return with the original 12th drawing, which Art would find much more to his liking.
Let this be our secret. Don’t ever tell Art I told you.
Unknown date
Much time has gone by without an entry in this journal. I have been in the hospital, flattened by spinal meningitis, a sadistic little handmaiden of AIDS. Meningitis gives you headaches and neckaches, but its worst artifact is nausea. Nausea rolls through you like a sick yellow tide. You are held in a hammerlock by a sweating fiend, nose down in a cesspool, too weak to struggle, liking and swallowing filth. It is an indescribable insult to human dignity.
Couldn’t you draw at all, politely inquires the editor of this memoir, a hint of disappointment in his voice.
No.
Well can you draw it now, afterward? Show what it was like?
No, I cannot.
Why not?
Because. Because even if you draw for a living, you must draw a line somewhere.
The hospital sent a rabbi in to see me. The poor man was very upset. I had to comfort him. There was no place for AIDS in his universe.
July 25, 1994
I have moved back home, into the room I grew up in. On the walls are murals I painted at 13, of handsome young blond boys in Fauntleroy outfits, in capes and cloaks of crushed velvet. Outside the bedroom window is the gnarled tree I saw growing up, the tree that taught me how to draw. From its impossible complexity I learned to see all objects as layers of light. From that tree I learned everything I know about color, light, composition and the subtlety of motion. There are echoes of the tree in everything I have drawn since. It is where I plan to die, in this bed, looking at that tree.
Artists love symmetry.
In the living room of my parents’ house is a delightful drawing I had almost forgotten, a large pen-and-ink done many years ago by my cousin Shelly Canton. In it, people are creating art by throwing mud on walls, smashing concrete with a sledgehammer, splashing paint on canvases. In the middle, nearly hidden in all this riotous avant-garde activity, a man is quietly, lovingly studying a daisy and sketching it. The piece is title “In Defense of Someone, Somewhere, Drawing a Flower.”
Shelly Canton lived for years with depression, until her suicide.
There are lilies in my parents’ back yard. I have begun drawing lilies.
August 21, 1994
Every morning I wake and pray that the blackness all around me is just the darkness before dawn. Then light filters into the room, and I am horrified by the prospect of another day to endure. My soul is fighting my body’s instinct to live. My body requires my soul flight. There is no reconciling these two.
October 2, 1994
Something strange has been happening to me these last few weeks. I have noticed the irises of my eyes growing paler, as though some animating force is draining away.
Only now have I come to terms with the fact that I will not finish my final book. There were to have been a dozen and a half full-page gouache illustrations, and I shall have completed no more than four or five.
The book is “The Sorcerer’s Apprentice.” You know the Disney version, probably. Brooms and pails and a near drowning from the devastating triumph of curiosity over prudence. It can be seen as a cautionary tale, a warning about the pitfalls of excessive ambition, but I never saw it that way. What kind of children’s story would serve up as a moral anything so discouraging as Know Your Place? To me, “The Sorcerer’s Apprentice” is a benign allegory with a hopeful message. The sorcerer is a fearsome fulminating figure, a jealous Old Testament tyrant who in the end forgives and rescues.
No matter how bleak like may look, things work out.
That is my “Sorcerer’s Apprentice,” to remain unfinished.
December 30, 1994
Because I asked her, and because she is honest, my hospice nurse, Linda, admitted she has seen only terrible deaths from AIDS. This is because the patients succumb with total awareness of pain. But where is the awareness of freedom? Perhaps one must grab death with both hands to allow for freedom.
Life is such a beautiful gift. There has to be a beauty in letting it go. I want to let go from a position of strength.
December 31, 1994
Harold came to visit. He is my family’s rabbi.
There is nothing like impending death to dismantle protocol. Harold admitted to not really knowing how to pray, because at some level he doubts the existence of a biblical God. He sees shadows and hears echoes of a supreme being he wants terribly to trust in, and these things give him hope but not proof. He is a noble man whose faith in the redemptive goodness of the human spirit is more valuable than any catechism recited by the unquestioning faithful.
How hard it must be to be Harold.
He allowed me to sketch him. It took five minutes. When he studied the portrait of a strong, troubled man, he wept. I think I have never been so honored.
As I get more fatigued, I am learning to appreciate stillness. I listen to classical music and must appreciate the notes, but one must learn also how to value the silence after each note.
“Behold that which speaks from the silence,” Sibelius said.
January 19, 2005
I went with a friend to the dinosaur exhibit at the Museum of Natural History. I was limping and winded, but made it there and back with the aid of a wheelchair and cane.
If there is a controlling hand to life, you will find it here, in the masterly architecture of pterodactyl skulls and spines. At a time when life on Earth plodded thick-skulled through primordial muck, lumbering oafs with prognathous jaws contained within their bodies a latticework crafted with fathomless artistry. By what eye? By what hand?
I came home and wanted to draw dinosaurs, but was too weary to grasp a pen. And then, the next morning, I was too indifferent.
That has begun to happen. Little by little, art and music have begun to hold less excitement for me. Food has become something I must take to survive. It is no more interesting than a Tylenol gelcap. I have not experienced a sexual thought in weeks, not a dream, not a tickle of memory, not a flickering fantasy, feeble pulse.
Odd. It is as though there is a tactical shutting down of passion, as though I am being prepared. As though there is a civilized retreat we are all of us permitted as the end draws near.
January 20, 1995
Mom and I understand each other as I don’t believe we have in 15 years. Because my eyes no longer focus well enough, she reads to me, for hours at a time.
When I whimper in pain she takes my hand and holds it firm against her face. My mother will never recover from my death, but she will never really want to. The question is, can she incorporate my death into her life?
My mother has always been the weak one. This was not uncommon, I think, among women of her generation. All her life she has used her emotional frailty like a commodity, a tool to petition others for closeness and sympathy. But this has changed everything. She can no longer be weak; that tactic is useless now. She had had to dredge up strength, and she has done it with astonishing grace.
In the last eight months, my mother has turned a living hell into an awakening for me. I see how it has cost her. I can see it most clearly in the tremolo behind her eyes.
I am increasingly dependent on those around me, and in my heart I know that remaining alive is a selfish act. But my mother will not permit me to acknowledge this simple obvious fact, at times not even to myself
To her, my death is inevitable, and it is an occasion for mourning but not grief. There is a subtle distinction. She has taught me to love something fully one must not grasp it too tightly. One must be ready to let it slip away.
In these months, my mother has helped me be unafraid.
She has helped me find my peace of mind.
She has helped me find charity in an imperfect heart.
She has helped me find my soul.
On February 11, Steven T. Mendelson was seized by a final attack of spinal meningitis. He informed his family he was about to die. And then he went to his bedroom, lay on his bed, and did.
Study questions
- This reflective diary is, in powerful ways, a summing up of the author’s life. The most prominent themes are his friends, his homosexuality, art and music, his relationship with his parents, and illness/death itself. Pick one or more of these themes to show how he looks back on his life and what role the theme plays in the present.
- A frequently recurring theme in writing about illness is the reaction of others. You can use this text and many other examples from this web curriculum, as well as from your own reading or experience to comment on the behavior of friends and relatives in dealing with another’s serious or terminal illness. Describe and explain this behavior. What should a person do in the face of this behavior? How could one promote more supportive behavior among lay persons and doctors?
- Does Mendelson have a ‘good death?’
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