"The Death Sentence That Has Defined My Life" By Mark Trutwein

I HAVEN’T died on schedule.


Most people don’t think death has a schedule, at least a knowable one. But if you were infected early in the AIDS epidemic, you thought otherwise. At 61, I have now lived half my life with AIDS, my constant companion and distant cousin, the inseparable identity I won’t let define me, the everyday fact and special circumstance that bent the arc of my life in every way.

Although there was not yet a test for the disease, I mark the beginning of my AIDS life in 1982. It’s hard to imagine now the intensity of sexual liberation that gripped gay men then. Oppression was out. Freedom was ours, and we declared it with sex.

But after a tryst with a famous, closeted actor, a huge raincloud of a bruise appeared on my arm. I was hospitalized with a blood disorder that had no apparent explanation. Befuddled doctors guessed a lot, and asked if I drank gin and tonic. I told them it was my father’s drink. Less absurdly, the disorder had been seen among gay men in New York. The phrase “gay plague” was in the air, but no one knew what it was or how anyone got it. It seemed so random then, picking off strangers and acquaintances for no particular reason, but always, you told yourself, for reasons far from you. Then suddenly it wasn’t far from me at all. I left the hospital certain that I had “it.”

As the epidemic grew through the 1980s, all gay men lived with AIDS, whether infected or not. Thirty years ago today, the Centers for Disease Control and Prevention reported the first cases of the disease. It was a helpless and terrifying time. Medical information grew. We learned about H.I.V. and sexual transmission, but everything was misty and qualified.

Nothing you knew or did mattered. There was no treatment. Every sniffle threatened something worse, every germ was a dagger pointed at your immune system. A good friend stomped out of my house one night, furious I’d served pork for dinner, because pork, everyone knew, could kill you if you had “it.” Even after the test became available, many chose not to know. When my partner and I tested positive, we shrugged. We already knew.

I felt stalked by death. Sex could mean death now, not freedom. More friends became ill, then more. Far too many died. Often their deaths were gruesome. Eulogies were perfected. TV news anchors looked at you every night and calmly pronounced your disease “always fatal.”

Those who took precautions got sick and died. Those who didn’t also got sick and died. Everybody was dying. My death was just a matter of time, and probably very little of it.

Living went on amid all the dying. I had a dream job working for Congress. We accomplished great things. Many colleagues were gay and infected, including my immediate boss. We talked about it a lot, behind closed doors at the end of a day doing the people’s business.

Meanwhile, the government I worked for ignored us. The public feared us. There was talk of quarantine, and endless moral judgment. All we had was each other. Alone, we came together to care for ourselves. In a few short decades a despised minority went from oppression, to resistance, to liberation, to devastation and finally to community. We found community not in the bars but in clinics and hospices and service organizations we created to care for one another, to inform and support one another, to grieve and remember together. It wasn’t happy work, but it was necessary work.

By the early ’90s, my name still had not been called. Initial medications were eked out of a health care system that had been bashed into compliance by angry activists. They were mere BBs hurled at battleships, but they promised more time, time for better drugs, time for more life. My doctor said the only reason not to take the first of them, AZT, was that I’d be taking it every day forever, which didn’t seem a problem then.

So I took them all, endured their side effects and began the Whack-a-Mole phase of living with AIDS. The new AIDS pill might slow the ravaging of my immune system, but it clobbered my liver, so I had to take another pill for that, which put something else at risk ... and on and on.

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.

Mark Trautwein is an editor for KQED Public Radio.