By Alex Distefano
By Scott Snowden
By Anna Merlan
By Steve Almond
By Jena Ardell
By Jon Campbell
By Alan Scherstuhl
By Tessa Stuart
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.