I was only nineteen years old in 1981, when the first cases of “Gay Cancer” were reported by the Centers of Disease Control thirty-eight years ago today, an anniversary long-term AIDS survivors have now reclaimed as their own: HIV Long Term Survivors Awareness Day. I had come out of the closet as a teenager only a few years before, learning how to navigate gay adulthood with few role models — and I would return to the closet just a few years later, illogically seeking, by enlisting in the US Navy, refuge from a doom I did not yet know was already within me.
I learned I had contracted the human immunodeficiency virus (HIV) two years later, as the Navy was discharging me for homosexuality in 1987. “Go home, son,” the Navy doctor advised, “get your affairs in order. Spend time with your family. “ AIDS was a certain death sentence then. I was twenty-five years old.
Over the coming years, I watched friends die as my own t-cells dwindled, and cared for dying lovers as I prepared for my own end. As 1995 approached its last days, so I seemed anointed for mine. Diagnostics had found no measurable t-cells in my blood for more than a year, and my actual viral levels, now being tested for the first time, were beyond what anyone had been known to survive for very long. I had suffered pneumocystis pneumonia, Kaposi’s Sarcoma, and thrush so severe it permanently damaged my esophagus. I had lost a third of my healthy body weight to AIDS wasting syndrome, driven, in my case largely, by a then effectively untreatable fungal parasite of the intestines called microsporidia. To fight these ills, I braved injections of every kind, submitted to the most probing of medical procedures, and consumed handfuls of pills, each with its own battery of harrowing side effects. And to hold these down, I smoked a great deal of medical cannabis, which together with the oral morphine and tincture of opium, calmed my soul in the face of death, and thinned the veils between the worlds, through which I was certain I’d soon pass.
Fortunately, through the work of the very giants of AIDS activism I’d once had the privilege to follow to the barricades, a new class of drugs proving effective in FDA trials, trials for which my advanced condition disqualified me, was made available through random lottery to dying patients. By my thirty-fourth birthday in late January 1996, I had been granted reprieve.
The years since are largely a happy blur of trying to work meaningfully and live joyfully on behalf of all those comrades who were not so lucky, all my fellow soldiers in the war against AIDS who didn’t survive the trenches we once shared. In a sense, they are always with me, reminding me that however valid my own petty complaints of the moment, whatever permanent damage I carry still, regardless the side effects I may continue to suffer, and notwithstanding the geriatric medical issues I now face prematurely, I still prefer growing old with AIDS to the alternative. The memories of fallen comrades steel me against the slow, softer ravages of this now restrained, managed killer within me.
Since my miraculous anti-retroviral-therapy-driven recovery, some days, some weeks, some years have indeed been harder than others, and in recent years these come harder and more often. The intricate synergy between physical and mental health is perhaps nowhere more apparent than in the interplay between emotion and immunity, emphasizing the need for a holistic and effective self care plan; indeed, successfully implementing such a plan is integral to long-term survival with AIDS, and can be difficult even for me, privileged as I am, a white cisgendered male from a loving, working class background with stable housing, a modest disability income, and comprehensive health care. Even I, with all my privilege, must guard against the fatal self-embitterment that comes so easily to those of us who cannot compare ourselves to our peers without seeing loss: the lost health, the lost youth, the lost romance, the lost adventure, the lost intimacy, the lost career, the lost wealth of every species. So I fear for the long term survivors who struggle without these advantages in these seemingly ever meaner times. Although I can only speak with authority about my own experience, I urge us all to remember that any small challenge I, or someone like me, might recount is magnified manifold without the basic supports I enjoy.
And yes, I could recount a litany of such challenges in crude detail, no doubt to the surprise of many who see me as an unlikely picture of wellness. But my wellness is not the point.
With my support system and advantages, I am deftly handling this litany of difficulties. But what if I didn’t have access to comprehensive health care that accounts for mental health and social support systems? What if I didn’t have access to a clean bathroom in safe, stable housing? What if I were living with AIDS in prison because of a marijuana conviction? What if I were socially isolated, without friends or family to whom I might, at least, complain of these petty miseries? What if my only source of income were sex work or manual labor? What if the ordinary pressures of aging had overtaken my capacities for self-care?
Without my advantages, we can easily imagine, the merely difficult quickly becomes the impossible, and for me, this is the important message of HIV Long Term Survivors Awareness Day. My various experiences as a long-term AIDS survivor have taught me both what it takes to survive, even thrive, with HIV for many years, as well as how elusive the fulfillment of such basic needs remains for many long term survivors. Many queer communities are now earnestly committed to caring for our queer elders. As these efforts expand, we must consider the special needs of HIV long term survivors, especially those without the many advantages that have made my own marvelous and unexpected life possible.