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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: slb on November 24, 2018, 02:42:41 pm

Title: What I’m Thankful For Every Single Thanksgiving
Post by: slb on November 24, 2018, 02:42:41 pm
And then there's my friend Bruce, one of the most engaging people I ever met in my entire life, who was diagnosed HIV+ soon after my own diagnosis in October 1985.  As our grim prognosis became clear, and as we grappled in our late twenties with the reality of our undeniable death sentences, we both decided to go to grad school in 1989.  I entered a history Ph.D program, he a rigorous, multi-year program studying acupuncture.  Bruce was already quite established as a RN, but he wanted to pursue his dream of mastering Chinese medicine.  Our bond as friends solidified further as we both embarked on this irrational and ridiculous venture to reinvent our professional lives when our lives had already been deemed to soon be over. 

I would call Bruce on the phone and ask in my typically self-doubting and obsessive manner:  “Are we the only people on this planet crazy enough to be starting graduate programs that are the very essence of delayed gratification, of working long and hard for a goal many years in the future—  when we’re completely aware that we don’t have that future??” 

That question certainly applied to Bruce, whose acupuncture program would take three or four years to complete; but it was even more true for me, as history Ph.D programs take on average some seven years to complete, and quite typically take longer.  Were we really that crazy to be entering four- and seven-year programs when we were already in our fourth year since our diagnosis and when the life-expectancy of people diagnosed with HIV was no longer than seven years?  Why would I be stupid enough to start a Ph.D program in September 1989 when I was expected to  be dead by the end of 1992?? 

I will never forget Bruce’s sardonic answer to my anguished question:  “Don’t worry.  You’ll be fine until you graduate.  Then you’ll drop dead.”

And that’s exactly what happened to him.

When he died less than a year after graduating, all of us who loved and adored Bruce couldn’t help but wonder whether it was that god damn acupuncture program, with its long hours and grueling work, that did him in— not exactly a frivolous question, since he died not long before the cocktail appeared on the scene in 1996.  We now know that 1995— that fateful year before the cocktail’s appearance— saw the largest number of people die of AIDS in the US.  Just another bit of painful irony of the AIDS years.  How many of our loved ones had to hold on for just a few more months, a few more weeks, a few more days, before being blessed to experience the Lazarus Effect that the cocktail brought forth?  How many would still be here if they had reduced their stress level just a little bit, or had taken pains not to push themselves too much, in those final few months before salvation?  So, it’s more than natural to wonder whether Bruce would have survived had he stuck to nursing and not pursued that crazy dream of his.  But, at the same time, it’s natural to wonder whether he would have perished even sooner had he not pursued his passion and threw himself into work that sustained him. 

These were questions that preoccupied me as I pushed forward in that Ph.D program of mine, as I spent two years doing research in Eastern Europe, and as I worked around the clock writing my dissertation (my “magnum opus” that I considered to be my life’s work).  Was it this work and passion of mine that was keeping me going?  Was I beating HIV because I had something to live for?  Is this the secret to survival?

I had read somewhere that Golda Meir, the Prime Minister of Israel in the early 1970s, had secretly suffered from leukemia the entire time she was Prime Minister and had endured regular bouts of chemotherapy throughout her tenure.  But she was able to hold off the disease— until she left office.  Once she was no longer doing her “life’s work,”  however, she was a gonner— and she died six years later. 

So I worried what my fate would be when I finally finished my Ph.D and finished my "magnum opus."  Would I be a dead duck as well?  A month after my dissertation was published, I confided to my friend Barbara that I feared that the only thing keeping me alive was this work I was doing, and that I would decline and die the minute I was done. 

“It doesn’t work that way,” she angrily replied.  She spoke from experience, as her husband (even more creative and productive than I) had just died after a long illness.  Three weeks later, she herself would die in a freak accident, even though she had everything to live for, had productive work that more than sustained her, and had a whole slew of creative projects lined up.  I guess it really doesn’t work that way.  Her senseless death taught me that there's no sense to any of it. 

I now know that I’m alive not because I have work to do, not because I have a fervent passion in my life, but simply because I drew the luck of the draw:  I am among the mere three in a hundred who have the genes to hold off the virus (not forever, but three times as long as everyone else).  And what my genes were able to do for twenty-nine years, the HIV drugs have continued to do over the subsequent nine. 

So I want to publicly and uproariously scream out my thanks for beating the odds and being allowed to continue on in my life, while mourning all those wonderful souls who weren’t so lucky.  And I pray with all my being that I continue to live a life worthy of such a blessing. 
Title: Re: What I’m Thankful For Every Single Thanksgiving
Post by: em on November 27, 2018, 11:11:21 am
thank you for sharing your story a great inspiration