Monday, October 8, 2012

i'm still here

Concordant with the 30th anniversary of AIDS, there has been a renewed interest in the subject, especially in arts and media. Last year, Larry Kramer's "The Normal Heart" (1985) had a successful Broadway run and won the 2011 Tony award for best revival of a play. I didn't see it. Also last year, included in several film critic's Top Ten Films of the Year lists was "We Were Here" (2011), a documentary focusing on the impact of AIDS in San Francisco's gay community in the 1980s. I didn't see it. Released just a few weeks ago, "How to Survive a Plague" (2012) is a documentary detailing the formation of ACT UP, and the righteous anger and activism that this group of brave young people harnessed to create advances in AIDS treatment and legislation. I saw it.

The human mind possesses remarkable defense mechanisms - oftentimes I feel as if I'm remembering only parts of a bad dream, as if nothing bad has happened at all. Mostly, I walk through life with an unspoken understanding that I carry within me a history of loss and personal trauma, but those feelings are usually emotionally distant, remote. For many years, I used alcohol and drugs to anesthetize myself until I was unable to feel anything at all. Eventually, when I stopped drinking and drugging, feelings I'd been suppressing began to bubble to the surface. It was no longer possible to avoid the truth of my past or the implication of my health status. It became necessary to mourn, to make sense of all the loss I'd experienced, and to come to terms with  the significance of my condition. Even with the slow development of a few emotional and psychological tools that I use to cope with the challenges of my life experience, it is often easier to avoid or ignore the unpleasantries of reality. 
Post Traumatic Stress Disorder (PTSD) is a frequently debilitating psychological disorder stemming from experiencing or witnessing traumatic events. In a 2010 U.K. study published in the August 16 issue of AIDS Patient Care and STDs, one third of HIV positive men participating in the study met the criteria for an HIV-related diagnosis of PTSD. Numerous studies have examined whether HIV-related experiences, such as threat of illness or death due to disease, or threat of social rejection due to a person’s HIV status can increase the risk of developing PTSD. It is believed that rates of PTSD in people with HIV have ranged from 13 to 64 percent, depending on the group being studied.

I was diagnosed with HIV in 1995 or 96 (hard to pinpoint the exact year; memories of that entire decade reside in the recesses of my mind behind a drug induced haze), sixteen or seventeen years ago. It's hard to imagine how it has been possible for me to downplay and minimize the ramifications of my status for so long with all of the ensuing particulars necessary for long-term HIV treatment, but that is exactly what I've done. Regular blood-draws, doctor visits, insurance nightmares, handful after handful of pills: three pills two hours before meals, two right after, one upon awakening, refrigerated liquids, injections, growth hormones, anti-depressants, increased blood pressure and cholesterol, neuropathy, lipodystrophy, diet restrictions, et cetera, et cetera. Even with all of that, I'd managed to trick myself into believing that these treatments were mere inconveniences; that my life was perfectly manageable and was barely affected by my condition. Mostly, this was true. The exceedingly strict drug regiments of the late 90s gave way as newer, more effective and less toxic classes of drugs came on the market making daily living even more seemingly normal. The only times that I had to concede my utter dissimilarity to others was related to dating and sex. Most painful was the time I disclosed my status to someone I was romantically interested in, only to have him reject me because of it. Now, those hurt feelings and rancor only stir when I see someone on an online sex site use the word 'clean' to describe themselves as negative. This insensitive, ignorant language that implicates anyone being HIV positive as being 'dirty' has seeped into the online sex vernacular, and is a sharp reminder of my distinct difference.

While I have never received a medical diagnosis of PTSD, I don't believe I've ever been specifically tested for it either. Understanding that some of the symptoms include re-experiencing traumatic events through distressing thoughts or nightmares, excessive and prolonged emotional hypersensitivity (irritability, angry outbursts, insomnia, etc.), and avoidance of places, thoughts, or situations that may be reminders of traumatic events, it fits that I would be a candidate for a positive diagnosis having exhibited some or all of those symptoms at different times. 

What proved most difficult for me while watching the documentary yesterday (which I fully recommend as essential viewing for anyone concerned with HIV/AIDS or community activism), was the flooding back of memories that have been either bottled up or neatly circumvented for the past 30 years. Catching glimpses of people I knew who are no longer here - the rush of subsequent memories of others who are gone - seeing moving images of people I know now as they were then; young and beautiful, as I must've been too - the reminder, the evidence of loss and decay - it's almost too much for me to wrap my mind around.

I'm not suffering survivor guilt, I'm just sad. I miss what I never had; what could have been. I love my life and I'm moving forward as best I can. I'm grateful to have lived long enough to see the development of protease inhibitors and the subsequent classes of antiviral drugs that have made HIV a chronic yet more manageable condition rather than the death sentence it once was. I'm happy for the strides that have been made in regards to LGBT legislation, marriage equality, DADT, etc. We are living in a new century, and the luxury of hammering out civil rights issues without the urgency of a dying community is something emerging generations will never fully understand. But, the immeasurable suffering and personal loss; the historical context of people being sentenced to die because of their behavior, orientation, or social classification as academic modern history or contemporary anthropological study rather than a story that hasn't ended yet is disturbing to me. Yes, we were here, some of us still are. What happens next? I don't know. 


Suzanne said...

Heartbreaking. Healing adaat.

bruce said...


Steven said...

Very powerful. Jeff you write beautifully from real truth. I found this unbearably moving and of course, personally relevant. Thanks.