Posted by: aidshike | March 8, 2013

The Horror and Reality of HIV/Aids in the 80’s – day eleven

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Dearest Shelly­­­,

I think about you every now and then and today I really wish you could join me in my ventures… things are really moving on in my life and in my abilities to make a difference in the world. In 1988 when I met you, we had both recently been diagnosed HIV+. We met in a support group that took place weekly in a relatively new HIV positive clinic. We were just two of the scared people that came in and out of the group. Your spirit moved me from the very first time I met you… you were so vibrant, colorful, gentle and kind. You helped me get through my initial fears and uncertainty. You were a stable support during a very difficult time.

It was a time when people came to the groups, but many did not return. There were so many who were suffering such awful emotional duress in addition to the physical health challenges. There was tremendous fear and ignorance in the world. People didn’t understand the danger and nature of HIV and looking back how could they have. No one knew. The doctors sure didn’t. There was brutal prejudice that I saw inflicted on other members of the community. And we were a smaller community… a tight group of people who shared what was then considered a death sentence – AIDS – The word itself was scary. We came from all walks of life and many of us would never have met if we hadn’t shared the same disease. But we bonded like a team of brothers and sisters.

I often felt bad because I had many resources – a clinic and doctors right from the beginning and an unconditionally loving family and friends. The first person I told after hearing about my diagnosis was my Mom. I became openly HIV positive almost right from the beginning and that was a true blessing. I met people early on who had to deal with such a different path. For many others… one after another, their partners, their families and/or their co-workers had all turned their backs on them. My new friends had been ignored, shamed, blamed … even hated. It was bad enough that we all were HIV+ but some of my new friends were also not openly gay, they had not come out of the closet yet. So the shocks and sudden information blew people away.

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There was so little knowledge and so much fear amongst the health providers as well. They didn’t know what they were dealing with and were understandably scared (some sadly still are) so these new friends had bright yellow signs on the door of their hospital rooms. Right there on the door… no one could miss it. It broadcast this fear and labeled the patients. So the family and friends came to visit and many of my friends were immediately ­“out-ed”. Suddenly it was announced to the world that they were gay AND positive. Ouch! And then many of visitors and potential support systems disappeared and never came back. And often these friends got sick, and died alone. We shared these common fears, yet I had none of the same worries.

And sometimes the stories were even worse. I met a veteran in our group who had government health care and needed dental work. He arrived for his appointment to find the doctors and nurses all wearing yellow suits! Like Hazmat suits! I can’t remember if he stayed or not, but this was just another time that one of us were shamed. I watched as men found out that their partners were also HIV+. They were often blamed… back and forth. It was disgusting to me that people could be so nasty and inhumane. Yet this happened way too often.

But who I am talking to, Shelly, YOU knew of this prejudice, you knew the stories, the worries, the pain and the sorrow. But you were so strong and thankfully you were also already “out” in the world. Sister, how could you not have been!!! You were one of the most flaming people I ever met and almost funny in your theatrics…. And you knew it. You thrived on it.

I learned so much from you. I watched as so many fought and fought to survive; I watched as so many gave up; I watched as so many lived in denial until they died.  But YOU decided it was your time to shine (even more than you always already were!) You decided to go out in a Blaze of Glory. While I was changing my lifestyle and my choices right & left I watched you stay in your zone. You somehow got a dealership to give you an Acura. You drove it like you were possessed. You drove it right back to New York City. You went right back to the bars, the crazy lifestyle, the drugs and the late nights that morphed into early mornings. And then you didn’t cry a tear or have any shame as you got sick. You carried yourself with such pride till the end. I will always remember what you said to me the day before you died.  “Mark (I still went by my birth name then) you make sure you stay around here now…you make sure to fight, to hold on… because you will live to make a difference one day”  I have never forgotten those words and that message. Like the guilt of being a long term survivor and wondering “Why me” for years when watching so many other’s succumb to the disease; For many years the message carried a heavy burden for me…But no longer…

I will use this current opportunity to help make AIDS HIKE happen. I will use this blog, the Facebook page, the website and any tools I can find to let others know about my story and the stories of millions of others… those who are no longer with us and those of us who are still suffering today. I have a unique opportunity now and I will no longer shy away. I will use these platforms to make a difference as much as I possibly can. I will make you proud…

I miss you and will continue to think of you and your journey often, but I will smile each time…

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Keith Haring “Focus on Aids”

First two pictures also credit Keith Haring

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Sadly, I have taken a bit of a hiatus from walking and/or hiking since the early night stumbling and bumbling through the prickly bushes a week ago. I could make any number of excuses, but one truth is that first I was in a self-care zone, then I got lazy and then starting Monday I became so focused on the projects that have followed this blog that I was inside on this computer for hours and hours every day. But the work has certainly paid off. AIDS HIKE is now a non-profit and the Facebook page has been looking better and better. Moshe helped me do a marketing blast and we now have over 1,650 “likes” on the page. We will use these contacts to reach out and get the word out as AIDS HIKE evolves more and more…first with public hikes, then with the first multiple-day hikes and hopefully start preparing the details and then the team to hike the Appalachian Trail.

I look forward to going for a walk or hike tomorrow and I have a date to go for a short hike Sunday. I have not met her yet so there is a double kind of anticipation. Should get me back on track!


Responses

  1. Moshe, I have known you a long time, must be nearly ten years now. But nothing I have read has moved me as much as this. Thank you, for sharing with everyone what it was like, because I certainly didn’t know. I knew it was bad, but not… this.
    *gentle hugs*
    Ash


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