Posted by: aidshike | March 28, 2017

Deep inside support groups in the late 80’s

Hello Shelly

I post this piece to my Facebook page every year but just realized that I’ve never shared it here. It is about gratitude and remembrance

Long term … survived

The day before Thanksgiving this year marks the 30 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here… I am also sometimes consumed with guilt … survivor’s guilt … “Why me?” … Why me in an opposite sense. Not why me… why did I become HV+? but why me … why am I still here…and so many others are not? I am a very small minority who made it through the 80’s – when AIDS was considered a death sentence- and are still around to talk about it. I can only look back and wonder why I am still here and so many others are not.
Today many people call me a “long term survivor,” they tell me that it is a miracle that I am still alive and they honor my life and fighting spirit; but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS”. I had choices to make but none of them reflected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people, we came together to support and love each other in a way no-one outside the group could ever imagine, could ever understand … could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.
We talked of our fears – of death, of pain, of hurt and how some of us were dealing with loved ones that did or did not know our plight, did or did not support us. We talked of a community that so many folks in the public masses could never understand. Those who misunderstood us, misunderstood HIV & AIDS and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown.

People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl. We were the ones they had to believe they were not.

People assumed we were all gay, drug addicts, or Latino. These were obviously misconceptions but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, include the possibility that they too may become HIV+. There were many that even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand. It was easier sometimes to just let the reality be swept under a carpet of worry and shame, but many of us were in that fishbowl, we were the human beings with a life threatening disease and it scared people to have to admit to themselves that this was happening.
At our meetings we shared horror stories – of families, partners and friends that turned their backs on some and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds.) We talked of some doctors in the medical field from military to public who wore yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overgrown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.
I am blessed to still be here today. It is easy to question why and it can be very hard to have to process these reflections. Today is my anniversary. It is impossible for a Thanksgiving to come and go without my being reminded that I was diagnosed the day before Thanksgiving in 1987… 30 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 16 years ago and have stayed the same.
Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you look at things.

I think I am blessed and the god of my understanding has looked over me. Why? I am not sure, maybe I will be able to accomplish some things, to give back, to take my experience and by sharing it make a difference in people’s lives. Or maybe I am just still around because I have been hanging on…Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that my change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
So, in retrospective sadness and current pride, I look forward to this anniversary every year; and want to honor the spirits of those friends that I lost from those support groups, to support those who I never met who shared our path, to honor all those thousands and tens of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss.
Moshe Mark Adler
November 27, 2013


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