Sunday, June 12, 2011
The Death Sentence That Defined My Life
But nothing then could promise you an average lifespan. My everyday health and my “numbers” — the T-cell counts and helper-suppressor ratios and all the AIDS lingo that became our vocabulary — said I was running out of time. I’d seen too many friends die at their desks. I wanted to live my final days in my beloved San Francisco.
In 1994, my partner and I sat in a gazebo at the Greenbrier Hotel on a hot July night in West Virginia with my honeymooning brother and sister-in-law. Before I could ask, they offered to care for us as we died. The next year I abandoned my dream job and ambition itself, retired to the Bay Area and bought a house a mile from my family to make it easier to manage the messy business of our deaths.
Then, everything changed. Protease inhibitors became available. The “cocktail” was born. You couldn’t beat AIDS but you could fight it to a draw, perhaps indefinitely. For 15 years, death had been ever present. I’d thought about it daily, got familiar with it and planned around it. It had amazed me that people could walk around every day as if they were immune to it. Now I had to adjust to a life I’d been schooled to believe I’d never have. It was one of the hardest and most welcome things I’ve ever had to do.
Still in my 40s, I had to rethink everything if I was going to live. My financial plan wasn’t feasible now. Decades of retirement suddenly seemed not so amiable. I had to think about work. My relationship needed an overhaul because although there was much tying us together, we’d ignored differences that had seemed inconsequential against the sacred obligation to care for each other as we died. Now we faced a lifetime with those differences. Both of us would survive, but “we” didn’t.
Staying alive was now a full-time job in health management. Whack-a-Mole medicine became insanely complicated. And the blessed cocktail came with cursed side effects, including cardiovascular disease.
I had joked that dying of a heart attack at 75 was the least of my worries. By the time I was 51, I’d had two of them, and four angioplasties. The pill-taking was overwhelming. What with the pills taken every 4 or 6 or 12 hours and the pills taken on an empty stomach and the pills taken with food and more and more pills, every infected person I knew carried a beeper to remind him of the day’s next pill-taking event.
My pill regimen became so contradictory it was simply impossible to execute properly. Doctors were just throwing meds at me. There weren’t enough hours in the day for everything to work; the overlapping of starving versus full-stomach regimens, combined with the dosage frequency, couldn’t be accomplished in a 24-hour day, for example, because you couldn’t be both at the same time. Choices had to be made as to what to take, and what not to take. To this day, I still swallow about 25 pills a day.
But the dead don’t have problems, so I was grateful for mine. I was alive and my deathly companion less insistent. AIDS and I have been together for almost 30 years now. My relationship with AIDS is one of my most enduring ones, and has both enriched and beggared my life. It robbed me of friends and loved ones, and with them memories we would have had and repositories of my own history. It ended a career I loved. It cost me a marriage. My intimacy with health care in America has been costly and exhausting. I know these are small prices to pay for life.
What I’ve gained is precious. Above all, the constant companionship of plague has taught me that life is about living, not cheating death. Fighting disease is required and struggling with life inevitable. But I accept the outcomes now, whatever they are. My disease does not make me special, nor does my survival make me courageous.
On that day I walked from the hospital knowing I had “it,” I was given a great gift: the realization that we all dangle from that most delicate of threads and that the only way to live a life is to love it.
I haven’t died on schedule, and I’ve been learning not to live life on one either.