By Jena Ardell
By Jon Campbell
By Alan Scherstuhl
By Tessa Stuart
By Roy Edroso
By Jon Campbell
By Albert Samaha
By Zachary D. Roberts
On January 1, 1990, I met Tom, the love of my life. On May 15, 2001, I helped him die.
Tom seroconverted (i.e., was exposed to HIV) in late 1992. From the beginning, he was what is known as a rapid progressor. He didnt respond to the new drug cocktails, AZT, nutritional supplements, or anything else. He contracted every possible opportunistic infection. His nose swelled up and developed painful blisters from sporotrichosis, a disease that normally afflicts miners and spelunkers exposed to bat dung. Edema had swelled his ankles so badly that every step became a painful journey. Weight loss (in Africa, AIDS is known as the Wasting Disease) eroded any protection of fat or muscle so that a pebble felt like a bullet fired into his skin. Constant coughs wracked his body, and every breath sapped him of his last reserves of strength. Eczema made his skin feel like burning coals. His throat had become so infected with Kaposis sarcoma, swollen lymph glands, and other infections that every swallow became a horrific struggle.
The KS meant chemotherapy; I had to go to Central Park to score dime bags of pot to ease the nausea and try to stimulate his appetite. Every orifice oozed fluids: nosebleeds, night sweats, incontinence and diarrhea, runny eyes, bursting pustules, bleeding gums. His ears, hair, nails, teethevery organ rebelled. Worse than the physical misery was the self-consciousness of peoples revulsion. Always meticulous about his appearance, he had trouble shaving because of lesions and swelling and became unable to bathe himself. Clothes hung limp on his tiny, emaciated frame.
Hospital stays became more frequent and lasted longer. The only comfort I could give him was to lie next to him while holding his emaciated body in my arms. After his last release from the hospital, Tom researched plans for the end game. For the past few weeks, he had been talking about jumping off the top of our building. I begged him not to do something so gruesome and public. Besides, we both knew that he was too weak to climb up to the roof and I certainly wasnt going to take him up there.
So instead, he studied all of the options in Final Exit, the bestseller that calmly explained self-deliverance and sparked the right-to-die movement. He had underlined the instructions he wanted me to follow: beta-blockerspills given to slow the heart ratefollowed by an overdose of sleeping pills. The combination allows the sufferer simply to fall asleep while the heart slows down and then stops.
Unfortunately for Tom (and me), his doctor knew why Tom had asked for beta-blockers and refused the script. His doctor was a good man, but he was totally at a loss: He hadnt seen anyone slip as rapidly as Tom since the 80s. Up until the end, he insisted that Toms vital signs remained good. There was always another drug coming onto the market, a new treatment, a new theory. But Tom couldnt hold on any longer.
I asked Tom why he couldnt just overdose on sleeping pills, but he had researched the topic thoroughly. He said that he feared lapsing into unconsciousness and being placed on a respirator, despite having made out a living will. As a substitute for the beta-blockers, I suggested GHB, a club drug that, combined with the sleeping pills, would do the same awful work of slowing down his heart rate and easing him into death. I thought he could use a quasi-legal GHB derivative sold under names like Blue Nitro and Renutrient. So at 7 p.m., I found myself in the subway trying to score a street drug so that the person I cared most about in the world could die. But none of the pharmacies or head shops in the Village or Chelsea sold these sleep aids any longer. I headed back uptown, knowing that this would be the longest night of my life.
The alternative method in Final Exit detailed, in the books vaguely New Age wording, self-deliverance using a plastic bag. The book was very specific: Oven bags, turkey-size 19 by 23 1/2. I marched off to Gristedes for the bags.
All that night, he kept asking me: Are you OK with this? Of course not! I wanted him to live. But I understood that this was his decision. The next day, he was supposed to meet with his doctor to arrange for hospice care. We both knew what that meant. Neither of us wanted to go through the hell we had seen so many of our friends suffer.
The rest of the evening was spent reminiscing. We looked through his favorite books, listened to music, leafed through photo albums. Theres so much beauty in the world, he told me. Im so lucky that Ive been able to experience it. Tom wasnt religious, but as his illness progressed, we discussed God and an afterlife. We went over his memorial service. Then he sat down and wrote notes to his closest relatives.
He put off getting into bed for as long as he could, but finally said, Im tired. I need to sleep. When he got into bed that last time, it was 11:30 p.m. I gave him a soft drink mixed with 12 pulverized Ambiens. In his weakened state, it didnt take him long to slip into unconsciousness. His last words were: Im only worried about you. I want to make sure that you get through this all right.
Then, following the Final Exit playbook, I fit two oven bags on his head. I tightened them around his neck with rubber bands. If the book was correct, he would gently suffocate in about 20 minutes. I held his hand and watched. Just as the book described, his breath slowly became deeper and longer. He was snoring loudly and began gurgling. After 10 minutes, he pulled his body upward, in a gesture of helplessness. I knew that he was unconscious, that this was only an automatic response, the final grasp of life before the spirit left the body. Even so, I cried out helplessly: What is it? What do you want?
The books description and timeline proved accurate. After 20 minutes, I felt his pulse and put my head on his chest. I couldnt feel or hear anything. I glanced at the clock. It was 12:23 a.m.
He was dead.
I curled up against him and put my arms around him. After several minutes, I decided I had to get some sleep. At 7:20 the next morning, I awoke next to his lifeless body, and the whole evening came flooding back to me. I called his doctor. Toms dead, I said. He killed himself. One look at his emaciated body, destroyed by a host of infections, and no one would have doubted that he had died in his sleep, not by his own hand. So why did I blurt out that he had committed suicide? Its a question Ive asked myself many times. One of the first phone calls I made helped me cope with my indiscretion. A friend, a longtime AIDS activist, told me, Good for you! Let his final act be a political one. Let the record show that people are killing themselves over this disease. I knew then that I could face any questions the police would throw at me.
I called his family, then I called the police. They asked whether he had been taking any medications. I showed them the medicine cabinet, the linen closet, the refrigerator, the bathroom shelves, the bedside stand, all stuffed full of pills, lotions, tinctures, vials, salves, sprays, vitamins, Ensure. I showed them the suicide note he had written, just in case: I have decided to terminate my life because the continued suffering from AIDS and opportunistic infections is unsufferable to me. I have had a wonderful life but no longer wish it to continue.
The police summoned a detective and a medical examiner. It was obvious to everyone who saw the corpse that this was a man whoregardless of how he might have diedwas already in the terminal stages of his illness. Only when two attendants from the City Morgue wrapped his corpse in a body bag did I finally break down. That was the last time I ever saw him.
The next day, I took several bags of medicine to an office in Tribeca, where an organization called AID for AIDS collects unused medical supplies. Though illegal to reuse them here, theyre good enough for people in poor countries. I just wanted them gone. They had become hated symbols of failed cures, of promises broken. Since Toms death, I have thought and read much about the way people choose to die. The right-to-die movement, I have come to realize, is not a bunch of crazed Kevorkians or euthanasia Nazis, trying to impose suicide on otherwise-healthy people, but an enlightened response to a hopeless situation. Still, the debate rages on.
Mark Mostert, a director at the Institute for the Study of Disability & Bioethics at Regent University, believes that its a slippery slope from aid in dying to disposing of people because in some way theyre not worthwhile. There is a progression where it moves to Well, it may be taboo, but its justified, he told me. When someone is at the end of life, you can keep them comfortable, away from pain and suffering.
Kathryn Tucker, the legal director of Compassion & Choices, cites statistics from Oregon, where the Death With Dignity Act has provided the option of physician-assisted death since 1994. It has improved end-of-life care for all patients, she told me. Its well known that theres an underground practice across the nation, but its covert and its random. The patient doesnt know how to find a willing doctorand studies who the risk of complications and anxiety is much greater.
Howard Grossman, a well-known Manhattan doctor with a large gay practice, has seen too many cases of patients who have no legal option to ease their pain. Ive hastened peoples deaths, he told me. Why should you, as a partner, not have anyone to help you? You were left on your own to make a very difficult thing happen. I dont care if its a hospital board or whatever safeguards people feel need to be put into place to protect patients. But dont leave people hanging here because no one wants to deal with the moral complexities of someone like you.
The morning after he died, I read the note Tom had written to me: Dearest Steve, If youre reading this, it worked! I hope it did, for both our sakes. You have given me more than anyone could possibly want. I am so sorry it came down to a youthful death, but I need to sleep and you need to get on with your life without more worry about me. If that is a gift to give, then I give you my spirit to have with you at all times.