Posted by: aidshike | May 4, 2013

MY STORY – 10 years along the path

Hello, my name is Moshe Mark Adler and I am HIV+. I am a Person Thriving with AIDS. I have been HIV+ for over 27 years. I was diagnosed HIV+ the day before Thanksgiving 1987, 25 years ago. I am what many call a long term survivor. I am heterosexual, Caucasian and have never used needles for drugs.

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For most of the last 25 years I have been very openly HIV+, basically telling my story to anyone who will listen. I do so not to brag, to glorify or to shock others. I do so because I believe my story needs to be told. In a time of fundraisers for fantastic causes like LiveStrong and to raise money and awareness for breast cancer – very public and successful campaigns raising millions of dollars; many people assume that AIDS is now a chronic disease. I wish I could believe this. There is still no cure for HIV/AIDs and there is no guarantee that my current cocktail of medications will still support my health in five years, a decade or longer… they simply have not done enough research to prove so… especially since none of the currently “successful” cocktails have been around that long.

Since attending my first support group for people diagnosed with HIV like myself, I have heard so many sad horrific stories of pain & suffering and seen so many proud people slowly deteriorate and die. I have watched so many people struggle painfully against so much denial, ignorance and prejudice. I have been blessed with the support of family and friends but many have not. We all have experienced layers of pain, fear and worry.

In the mid to late 80’s being HIV+ was considered a death sentence by most inside and outside our support groups. Our support group was a band of brothers and sisters; gay, bi, lesbian, transgender and straight; varied ethnicities; folks coming from all financial and social backgrounds… yet we shared at least one thing in common: Fear that we would succumb to the dreaded disease; that we would get sick and sicker. Fear that despite pride and dignity, honor and strength, nothing could save us from a painful and awful demise.

Amongst my support group, I found that no matter our differences, we quickly bonded, shared very personal thoughts & feelings and began to also spend time on the phone and socially outside the meetings. We shared a label and a stigma that only we could understand. Then suddenly another one of us got sick, got weak, looked gaunt, couldn’t walk and often lost hope… and then wasn’t there the next week. The reality did not need to be expressed or shared. It just was what it was – another sad story that could now only be told.

For over 10 years I never attended a funeral. I never talked to any deceased friend’s loved ones &/or families. I always felt incredibly awful, but I later learned that this was a coping and survival mechanism. As Mike, Tom, Shelly, Jan, Randy and so many more died, I survived. I was plagued with questions – Why Mike? Why Tom? Why Shelly? Why Tom? WHY NOT ME??? Survivor’s guilt is brutal and I still feel it sometimes today. It is a heavy load. (In future years I would use it as motivation.)

I sure didn’t know why I was so blessed, but I knew I refused to give in. This was reinforced by the tremendous support network of family and friends, the great doctors I had and the clinics where everyone on the staff always greeted me with a smile… and hope. Fueled by this encouragement, I began to make better and better choices, one at a time. I stopped drinking and doing drugs. These behaviors had partly defined and underscored my lifestyle. One by one I chose to end friendships that no longer served me and searched for healthier friends. As I made these choices I also stopped hanging out in the dark and dangerous places that I had frequented with these friends and where I likely contracted the virus. But the future was still bleak and I was still filled with deep dread, deep fear and incessant worry that I could not express in words.

The early 90’s passed as I was amazingly still healthy, working full time and even travelling. But another milestone loomed ahead. I had lived to be 25, but 30 seemed like a dream. Amongst my HIV+ peers, it was an unspoken reality that most of us didn’t live to their 10th anniversary of their diagnosis. In the summer of 1997 sure enough my health rapidly began to decline. The number of my t-cells began to decline. For years the test for our t-cells was an accurate measurement of our health – or at least our doctor’s thought so. In 1997 my t cells dropped well under 200. When this happened I was officially considered a person living with AIDS (I always bristled with anger when people described us as … “having AIDS”) Thanks I said, sarcastically… an “upgrade” in my diagnosis. At this time of fear and stark reality, one blessing was that by being below the 200 mark I was considered officially disabled too and this allowed me to qualify for Medicare… which still helps pay most of my doctors and medical bills today. (In conjunction with my secondary insurance)

In my support groups and in the tightknit HIV community it was also sadly an unspoken reality that most folks who had their t-cells drop below 200 just DIED. There is no gentler way to put this. Some died soon after, others got sicker and sicker as their numbers declined and most then died often agonizing deaths.

A transsexual woman who had become a very close friend had reached a point where she had only 6 t-cells. In her true spirit she named them Huey, Dooey and Looey, Curly Larry and Moe. The numbers never increased. I visited her in the hospital in her last days and she just smiled and told me to stick around. She had long before sworn off doctors, sworn off the meds and chosen to live her life out in what I call a Blaze of Glory. She somehow got enough credit to by a (red!) sports car, drove it fast and far. She returned to Studio 54 in New York and then continued to party with wild abandon.

Many chose the same route, others just gave up, many got overdosed on AZT by doctors who really were totally guessing – with other’s lives; but many of us fought in any way we could. And fight I needed to. There was a new test called Viral Load, which tested the amount of AIDS in our bloodstream. This test unlike the t-cells was one where you wanted your numbers to be lower, but at the time mine were as high as could be recorded… while my t-cells were down to 56. I had not taken any medications for HIV till this time, but it was time to give the choice very deep thought ….

…to be continued


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