Over the years, I’ve chatted with many other HIV/AIDS long-term survivors about the myriad complications of being among the “AIDS Generation,” those of us diagnosed prior to 1996, whose diagnosis was presumed, with good cause, to be an inescapable death sentence. In those discussions, we’ve touched upon all the usual complaints—nausea and other side effects of the toxic medications we’ve ingested for twenty years or more; debilitating neuropathy; disfiguring lipodystrophy; the devastation of ill-advised financial decisions; the indignity of growing older in a culture that fails to respect its elders; the unrelieved grief of having lost so many friends and lovers. Every long-term survivor I know has experienced some form of each of those complaints, myself included.
But there is one complaint common among these survivors that is utterly alien to me: survivor’s guilt. Intellectually, I understand the concept of survivor’s guilt, I understand its roots and its manifestations—but to be honest, I have never felt it on a personal gut level. Not once, not for a moment. Thus, I am forced to ask myself,
Should I feel guilty for not feeling guilty?
The research I’ve done shows that the concept of survivor’s guilt first arose after World War II among psychologists who treated survivors of the Holocaust. Since then, the term has broadened to include a wide range of individuals who have survived events in which they watched, helplessly, as large numbers of others perished—soldiers on the frontlines of battle; airline crash survivors; survivors of natural disasters (hurricanes, earthquakes); and of course us gay men who survived the AIDS crisis.
The symptoms of survivor’s guilt include deep depression, ADHD-like agitation and difficulty concentrating, reduced interest in activities that once brought pleasure (including sex), difficulty maintaining relationships, sleep difficulties, lack of appetite, and feelings of worthlessness that can lead to contemplation of or even actual suicide attempts. I have seen these symptoms in many of my LTS friends; I know they are real.
Perhaps most damaging of all, though, is the paralyzing sense of guilt for surviving when so many simply didn’t. This form of survivor’s guilt, researchers say, stems from the survivor’s belief that he continues to live at the expense of those who did not survive—he imagines that his survival is an offense against those who fell. Many long-term survivors live with the constant gnawing question, “Why am I still here when so many are gone?” This can cause the survivor to feel unworthy, undeserving of life itself, and can lead to self-punishing behaviors (isolating oneself from friends and family, etc.). Surviving is, indeed, a mixed blessing.
Again, I understand the roots and manifestations of survivor’s guilt. So why do I not feel even the slightest bit of guilt for surviving? Like many of us long-term survivors, I lived through death sentence after death sentence while watching my friends die from the same diagnosis; I know the nausea, the neuropathy, the lipodystrophy, the sleep difficulty, and the feeling of worthlessness as intimately as anyone. But guilt?
No, no guilt.
For me, the word “guilt” carries a verdict of responsibility for an event. There are indeed things I’ve done in my life for which I harbor deep feelings of guilt—I have not always been as kind or as forgiving as I might have been. But I cannot feel guilty for outliving those dozens of friends and lovers whom I’ve lost. I mourn them, of course—hell, I have cried for them every damned day for the last thirty-five years! And I miss them, heart-achingly, constantly.
But it is not my fault that they are gone and I am not. If I had done something to cause their demise—or if there were something that I could have done to prevent their deaths, but didn’t do it—then I would feel “guilty,” I would deserve to feel guilty about their deaths. But I am not responsible for their deaths. There was no 1984 “Do it to Julia!” moment. My surviving the virus that took their lives is, so far as I can tell, utter and complete happenstance. As an atheist, I find the notion of “there but for the grace of…” to be utter nonsense—but whatever the reason for so many others’ perishing while I survived, I know that it was not my doing. I cannot feel guilty about it.
Still, I cannot help wondering…. Am I somehow psychologically incomplete or inadequate because I do not feel guilty for surviving when others I loved didn’t? Is my lack of guilt just an iron-clad defense mechanism that I have constructed, a fort I’ve built up to protect myself? I don’t know.
But I’ve decided that—to quote Bruce Springsteen—“it ain’t no sin to be glad you’re alive.”
And I am indeed very glad to be alive.
Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.