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Thursday, July 17, 2014

It's been 24 years yesterday

Well, if you have been reading this blog any length of time, you know yesterday was a milestone event for me.  I was in NYC last night, staying at the Chelsea Savoy in the Chelsea Neighborhood of West 21 and Fashion Avenue and I celebrated living twenty-four years with AIDS.  (Me at the right with Swatch of Mood Fabric's and Project Runway Fame!)

First let me begin by saying that this trip to NYC was planned around the start of my second Residency at Fairfield Universities Creative Writing MFA Program, which I am very blessed to be in.  My major is Creative Writing and I have spent the last seven months writing my memoirs.  What has it been like, in my perspective, to be have lived twenty-four years in NE Ohio with AIDS.  It's given me a lot of time to reflect, to write and to see things in a new way.

Until January of this year I had this feeling that I didn't know why I had lived as long as I had, when so many others have died --- most recently my friend Edye Gregory.  January I finally was able to put the pieces together and know I had simply had survived to write.  I write to give my voice to the diaspora of literature on what it means to live with AIDS and to live with it long-term.

Many of you know I have had my share or hurdles to face: three rounds of Chemotherapy for Kaposi Scarcoma, four rounds of pneumonia, two rounds of double pneumonia, a spell of meningitis, bouts of neuropathy, the death of two partners from AIDS as well as countless friends and most recently a stay in a nursing facility for physical rehab last August.  It, simply, has been no cake walk; but I'm not complaining.  I had had it easy.

Let me explain.  I met a young man today, actually a young homeless man, living on the streets of NYC.  He was around 23, covered in KS sores and a cardboard sign "Homeless.  HIV+.  Please Help."  We spoke for a few minutes.  Since he is homeless he is ineligible for Medicaid/Medicare.  Which makes him ineligible for medication, except through the Free Clinic and except from receiving Radiation to help with the KS.  It gets worse.  Since there is no address he is ineligible for Food Stamps and relies on an overworked, inadequate Free Meals through different shelters.  A friend of his, also HIV+, this last January froze to death on the streets.  His friend was 21 at the time.  I have not been able to get this young man out of my mind.  I gave him some money and my left over lunch I couldn't eat.  Unable to find a "solution" to his "issue", he says he fears he will freeze to death as well.

It has never been that bad for me.  I deeply grateful.  Yet, HIV/AIDS in this country is a chronic, manageable disease.  Till this to this young man.  Better yet, till it to our soon to be incoming President whomever he/she may be.  What can we do?  Right now, I really don't know.  There has to be something.  Maybe it was just telling his story.  Maybe it was the few bills I gave him.

My life after all has been a cake walk.  I am so very thankful, for so very much.

My mind was filled with memories to this trip.  Last time I was in the Chelsea Savoy Ron was alive, and if I think right that was at least 18 years ago.  I kept thinking of him today.  Wondering if he would be proud of who I am become since 2002 when he died.  What would he say to me.  Better yet, what would I say to him?

I came to this trip nervous and anxious.  I've greyed considerably since January when I left Enders Island.  I'm twenty pounds heavier too.  I was (or am) out of mind ––– when there is so much to be thankful for.

If you've read this far I wouldn't change much of the last twenty-four years.  Here's looking for the next twenty-four

1 comment:

Rebecca said...

An amazing story, Charlie. I am proud to have been your friend through many of those years.
Rebecca aka Weaver