January 31, 2014
New York, New York
December 24, 2008 was my World AIDS Day. What I mean is it was the day AIDS came into my life with all its attendant destruction and heartache. AIDS swept in like a tornado that day and nearly destroyed every aspect of my life.
For the first time, a disease that was as abstract to me as war—something that I knew about and heard about and read about and watched from the safety of my living room—became as real and literal as life itself. It seemed to appear without warning and with such ferocity. Its seeming intent was to not only destroy its target but everything in its periphery as well.
To say I knew nothing of this disease would be a gross understatement. I came out in the supposed post-plague years and I knew exactly one person who had died of AIDS. I was of the generation that enjoyed all the benefits that countless masses a few years prior had fought for—and, in many cases, died for—but I knew nothing of their struggles. That was a bygone time. AIDS was for the unfortunate few who came before me, whose only mistake was their date of birth.
I couldn't be bothered with that aspect of my people's history. I was too busy enjoying the spoils of a war I did not fight nor cared enough to remember. The heartache was for other people to endure.
Then it all changed.
"It's either AIDS or it's cancer. I need you to look at me and understand what I am telling you. It's either AIDS or it's cancer. He's refusing to consent to a HIV test so I am forced to draw only one conclusion. I'll let you draw your own"
The doctor was trying to tell me, without violating HIPAA privacy rules, that the unknown foe was in fact very well known. And he wanted to me to know what he knew. And what Ric knew too.
AIDS was determined to take Ric as swiftly as possible. It took his motor skills and his cognitive abilities and his reason and his voice. As the days went on, the doctors pronounced his death sentence as "six to twelve months, but prepare for closer to six."
When I took Ric home from the hospital, he quickly lost his ability to walk, his ability to control his bowels, his ability to feed himself. And so I became his feet, changed his diapers and fed him.
Every aspect of our life was shattered. I was unable to pay our rent; we couldn't afford food or even the gas to get him to doctor appointments. There were many nights as I was going to sleep that I shamefully prayed that God would just take us both so we wouldn't wake to face another unbearable day.
AIDS had returned in the supposed non-plague years to exact its toll just as it had done to hundreds of thousands just a few years before. And I—who knew nothing of the disease—was watching it take the man I loved more than anything else in this world. And there was not one damn thing I could do about it.
Except that there was.
As I began to learn everything I never wanted to know about this rapacious peddler of death, I came to learn about the foot soldiers who came before me— the ones who would not die quietly. The ones that chained themselves to the gates of the White House, who took over mass at Saint Patrick's, who demanded that an apathetic world take notice. I began to learn of the thousands who died with the dignity of living in their truth. The thousands more who cared for the sick and suffering and the ones who said that death wasn't their only option.
I became determined that if AIDS was going to claim Ric's life, it wouldn't do so without a fight. And since Ric could not fight for himself, I would fight for him. I would be his strong arms and his sturdy feet. And I would stand on the shoulders of the angels who came before him—the ones that fought with their very last breath to ensure Ric had access to medicines and care. And even the access to die with dignity.
He might die, I thought. But his death would come having fought every day and every hour and every second so that he might live.
Every day since that Christmas Eve nearly five years ago has been World AIDS Day for me. And every day from this day to the end of my time here on earth, it will be so.
And for the record, Ric woke up this morning. For the record, Ric fed himself. For the record, Ric put on his clothes, tied his shoes and took our dog out for a walk. For the record, the "six to twelve months" passed 48 months ago.
For the record, AIDS didn't win.
What three adjectives best describe you?
Fearful, courageous, uncertain
What is your greatest achievement?
Running the NYC marathon
What is your greatest regret?
Never finishing college
What keeps you up at night?
What is the best advice you ever received?
Don't quit before the miracle
What person in the HIV/AIDS community do you most admire?
What drives you to do what you do?
Knowing that things have a way of working themselves out
What is your motto?
Pain is inevitable, suffering is optional
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
If you could be any animal, what would you be? And why?
A bird so I could take flight
Search: Jon-Marc McDonald, New York, New York
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