Why A.S.S. is about so much more that just Survivor's Guilt.

It was unimaginably awful, that moment when I realized my crippling depression was due to the fact that I had a long and healthy life ahead of me.  I had spent my life living in acceptance of HIV’s terminal effect on life.  I had held that foremost truth in all my life choices.  But the rules had changed. I had to live.  At least that’s how it felt to me. I had to live a long life.  Not I get to, not I want to. I had to. I had to live because so many others hadn’t. Not only was it impossible to explain what that felt like, but if I tried to—no one wanted to listen. The message from the world was that AIDS was over, and I should just get over it. But getting over it is much harder than we think —because to simply label it all survivor’s guilt is woefully insufficient.  The “why them and not me?” question was long buried. It was not what would cripple me years later.

I began to understand it one rainy afternoon in 2011. On a porch, I was talking with a friend about my scary and uncertain future. My friend didn’t understand my angst.  To him it was like I was becoming a different person.  I had done so much with my life, why was I paralyzed now?  He asked, “What’s the worst that can happen? Another two decades of a life — like the two you just lived?” 

My heart sank when I realized how much that thought scared me.  In those two decades, I had accomplished a lot, but I had also witnessed awful things. The memories were a lot to carry.  Those awful memories included 9/11 and the death of my mother, but those things had been experienced through a lens of unprocessed AIDS grief.  It all got wrapped up together into a bulking mass of pain that had no place to go but deeper inside.  I couldn't dare to hope that the next two decades would not just add to that already massive and crushing weight.

Plus, living was going to be complicated. I had to face the consequences of living my life as though it were going to be short. I had created a lot of wreckage and made many sacrifices in living that way. It would take a lot of work to clean up that mess— mostly fiscal, which in turn created messes professionally and personally. If I did start that work at forty, could I really trust that I would live long enough to justify it? 

Few people understood the crippling depth of that question. I had known only one truth from the time I was a teen.  AIDS would kill me. The one medical reality was that eventually, my luck would run out. There might be relief, but it wouldn’t last. HIV would adapt and find a way. I had seen the treatments work, for a while, and then abruptly fail. I had watched men get their hopes up, and then get sick from their new miracle treatment.  There was no cure, so why should I trust that we had made HIV inert and that the new meds would not tear my body apart? Maybe it would be slower than before, but the meds would get me if the virus didn't.  I didn’t believe the medical community, the data, the research and least of all—that the days of the dying had truly ended. 

In the early days of my diagnosis, as a way of making the most of my time, I had embraced my reality.  I spent what little money I had to experience what I could. I chose to fully witness the sickness, the wasting, and the pain of my friends. I could have hidden, but instead, I held the hand of every sick friend that would let me. As others took to the streets in protest, my friends and I often stayed in the hospital, providing support where we could. I watched a generation die, but I had remained strong. By the end, I had lost more than fifty friends and colleagues and to AIDS, and I was only twenty-six.  But unlike them, instead of becoming a statistic, I would live. And I would live as a healthy anomaly. I would not spend one day ill from HIV, or my medications. For almost fifteen years, I had been biding my time, fully believing it all began again. The denial of my new potential was a kind of self-preservation. But I could not deny reality forever, and as my life was becoming more assuredly long, I was crumbling underneath the emotional mass I carried. 

Even that rainy day on the porch with my friend, I was unable to tell him how our conversation had solidified my problem.  I was too ashamed of what I felt.  Life was less like a gift and more like a burden. It was the burden of being a witness, a survivor, one of the lucky ones. I was angry that science had made me healthy enough to have to carry that burden.  I was tired of carrying it; I wanted to be free of it.  But what was I expected to be without it?

Looking at the long road ahead, feeling its weight, I could not imagine what it would be like to carry that burden another twenty-five or, dare I even think it, forty years?  Seeing that possibility ahead made me angry, but I judged myself harshly for any emotion that was not gratitude. That being alive was a roadblock to my emotional development seemed too ridiculous to actually admit. This was my version of AIDS Survivor Syndrome, which effects each person differently.

This list of AIDS Survivor Syndrome symptoms from the San Fransisco based group, "Let's Kick ASS."  Click the image to go to their website and learn more.

I wanted and needed help, but my reality was impossible to discuss. Therapy was a rabbit hole leading me deeper into self-absorption.  People who didn’t have my experience looked at me cross-eyed. They said things like, “but you beat the odds,” or “shouldn’t you have dealt with this by now?”  My slow, lackluster response to my good fortune was woefully insufficient for other people.  Some misconstrued my angst as a suicidal ideation.  Some called it a mid-life crisis.  Others simply decided that if I had not gotten my shit together by now, I probably never would. 

In some ways, I needed to start over from the beginning. I had to learn to believe I could have things that I had never allowed myself to have.  I had to learn to put down roots and be stable.  I had to learn routines. I had to learn patience and how to temper my passions.  In love, I had to learn to hold out for what I deserved, not to settle what I could have now.  I had to grow up, play nice in the sandbox, and be responsible for my own future.

Most of my friends that had been around in the days of the dying were still negative. The HIV+ men that had survived were mostly in two groups.  The first was made up of healthy men who had let HIV and AIDS define their lives, real activists. The other group was comprised of men who were more physically affected by HIV than I.  They still faced serious medical issues.  They regularly dealt with the horrible long-term consequences of early meds or the ravages of opportunistic infections.  

I was neither. Not being among those groups left me with and even smaller group of people I could talk to.  How do you have a discussion about moving substantively forward with men who built their lives on the drive of their anger? When you have never been sick, how do you talk to a friend that just had part of his lung removed about your depression? 

I held my tongue and tried to pretend I wasn’t feeling what I was feeling. I didn’t believe myself entitled to feel it. The less willing I became to talk, the harder it became to get up in the morning. Because I couldn’t or wouldn’t talk about it, I couldn’t name what was eating me up inside.  I never got to the words, “I am afraid of my future.”  And if I did, I rejected those thoughts, unspoken, because…  How dare I feel that?   It all seemed like someone’s cruel joke.

Tez Anderson and Matt Sharp co-founded Let's Kick ASS, click the image to read this article about their work.

Tez Anderson and Matt Sharp co-founded Let's Kick ASS, click the image to read this article about their work.

The days of the dying abruptly ended in time with a societal move out of bars and community centers and into cyberspace.  We stopped talking.  There was no physical place for my grief.  But grief was all I had ever known; I was too young to know the days before AIDS.  Whether or not I should have, I felt rejected. I faced the pit of unprocessed loss each day when I took my ever-decreasing number of more effective medications. 

I would go on to witness an evolution in gay politics, knowing that the progress we were winning only happened because AIDS activism won all gays a seat at the political table. But now that table rarely discussed our needs, or, perhaps more importantly, the legacy of those lost. Changing HIV prevention needs were pushed to the back of the line, because the discussion of risky gay sexual behavior might endanger the inroads being made in marriage equality.  Men who had stayed negative through the worst of AIDS were suddenly becoming positive. Younger gay men tried to distance themselves from that part of our history, and became resentful of living under its shadow. Everyone else seemed willing to forget the lessons of the past in favor of the battles of the present. But I wasn’t. For me the past was still out to get me.  As a result, I resented the marriage movement, and I never fully embraced it. That too made me more isolated. 

In the end, the emotional trap was a fairly simple one.  The problem was not that I didn’t want to live a long life.  The problem was that I didn’t want to carry these burdens for that distance.  To be happy, I would have to put them down.  But I had been a witness.  How could I abandon that responsibility?  What kind of man would I be if I simply moved on and left what I had seen and learned behind? Was that even possible?

Not exactly Sisyphus, but close...

I ultimately learned that it wasn’t an all or nothing question. If I chose to carry the burdens forward, I could find ways to lighten their load.  I could let go of parts of my reality.  Suddenly, it all started to get more manageable. 

The most debilitating part was the first to go.  It was the part that wanted the world around me to be different.  I had to accept that most Americans would only ever know AIDS as an abstract.  No matter what anyone says or does, what had been the center of my early life will only be moment in our darkly checkered history.  Today’s HIV reality is very different than the one I grew up in. Tomorrow’s will be different from Today’s.  And that's more than okay, it is good.

Next came organizing my feelings. Therapy helped there, but not until I was ready to move forward.   I had to understand what I needed for therapy to work. I committed to finishing Sally Field Can Play The Transsexual, and to turning it into a now story instead of a then story.  The book would become a basecamp for my future.  In that fictional journey, I could place some of my past burdens, orient myself to the world’s current reality, and point myself forward.  In writing it, my understanding of being a witness, and its responsibility, altered. I now know that to truly honor what I saw, I must not just carry the burden.  Instead, I must actively choose to live. To do that, I had to let go of what weighed me down.  I had to engage in the present and become active again. I had allowed my unprocessed emotion to silence me, to disengage me from feeling any passion.  And I was weaker for it.  I had to find my voice once again and apply it to today’s world, perhaps, more maturely than I had before. I had to make room not just for the new world order, but also for my new experience of it. To live, I needed celebrate and participate in all our progresses toward equality— even if that required that I too let go of some of the lessons of the past.

None of that was easy, but I did the work.  Now, my future is not daunting, but calling.