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submitted byJD Isaacs, Atlanta, GA
My sister once told me that when I was a child in our very noisy family of six, I would remain quiet most of the time. When I had a point to make, however, I would build up my courage, pick my moment, and suddenly shout out some ear-splitting comment, then sit back and wait through stunned silence for some sort of reaction.
What can I say? That was just me. So, here I am, picking my moment to shout something out again. "Hey! I'm a long-term survivor of HIV, and I have something to say!"
I've walked next to you on the sidewalk. I've laughed with your wife at the company party. I've 'high-fived' your husband at the Braves game. I've smiled at your beautiful children. I've eaten dinner at the next table in your favorite restaurant. I've sweated beside your brother in the sauna at the gym. I've framed your mother's portrait in my frame shop. I've hugged your sister when she told me she was pregnant. I've even handed my pocket change to you when you ran short at the check-out counter.
The point is I have lived right alongside you without endangering anyone, all while I have been quietly shunning a death sentence handed to me many, many years ago. Just like you, I'm still here; healthy, productive and happy to be a part of life.
When I was told in 1987 that I had been HIV Positive since 1984, I had already beaten the life expectancy predictions of the time (12 to 18 months) by nearly double. Now, it's almost 23 years later and I am still standing proud.
I'm often asked how I've done it; what's the secret to my survival? I don't think there is only one answer to that. Being genetically fortunate might be one factor. Staying physically fit and not indulging (too much) in alcohol and drugs is a good thing. But, being determined to do the best I could with the time I had left has to be a large part of it as well. I am just not the type of guy to sit and wait for the seemingly inevitable. I'm a guy who shrugs his shoulders and says to himself, "Okay, I guess it's time to get busy." Always been that way. Again, just me I guess. Challenges have always brightened me up and have given me direction … this one, though, was a real doozy.
The first decision I made was to throw out the dire prognoses and to concentrate on educating myself about the truth of HIV survival. Unfortunately, at that time, there were no long-term survivors, no role models for me to take comfort in. Even the case studies were no more than two or three years long. So, I had to challenge myself to become my own role model; my strength had to come from within me. Boy, that was not easy since my friends and other people that I passed by every day were dying all around me with terrifying complications and unheard-of illnesses related to their HIV. Each time someone died, I had to convince myself in the mirror, "That was him, that was not me."
The best thing I ever did for myself though, was simply making sure that in my time remaining – whether that was a month, a year, or ten years – I would strive to leave something beautiful and lasting and meaningful behind me. I stopped worrying about making a lot of money and allowed myself to make myself proud and happy with my stint on this earth instead.
It was as if HIV had given me a new attitude toward limiting myself. Suddenly there was no reason for limitations. To borrow from Tim McGraw's country hit, I began to "live like I was dying." I jumped into everything I wanted to accomplish with both feet, only suspecting that I just might be good at anything I put an effort into.
Some things worked out, some didn't, but onward I went. I taught myself to become a respected portrait and mural artist, leaving my work in states from coast to coast. Without an ounce of self-doubt I then took a left turn into writing musical children's stories with environmentally conscious themes for radio. Then, drawing on my former acting career, I became a voice-over artist so that I could narrate my own stories for National Public Radio, and illustrated my own children's book based on one of the stories. Just recently I completed writing a mystery novel (as of this moment unpublished). Who knew I had a book in me?
I served my AIDS community by speaking on behalf of the Health Department to people at risk, delivered meals, and served as a founding board member of an AIDS Hospice in Bellingham, Washington, that we built from the ground up.
Before I knew it, I had lived 5 years, then 10, 15, 20 and now 23 years. Believe me, it has not been rosy all the way. I've had my times of depression and terrible side effects from medications, periods of weight loss have come and gone, and the psychological pummeling through ignorant judgments and the social stigma of HIV is worth a mention too. Despite all that, I'm alive and well, and have no complaints. I've discovered that it's impossible for me to whine with a grin on my face.
So, why am I outing myself as a person with HIV so publicly now? Because people are still being diagnosed every single day with HIV and some sit and wait for someone to tell them what to do. It's true that I had no role models to follow, but now there are many of us long-term survivors of HIV and I would be pleased to serve as a guide for those who may need me. If my voice can serve to educate, or comfort or even heal someone who is scared and lonely and directionless, then I would love nothing better.
There have been a lot of people, (and two wonderful dogs) along the way who have played an important part in my survival: friends, family, doctors, and psychologists. That being acknowledged, if I were to leave one true belief behind me here within this forum, it would be this:
The only one who is really in charge of your life is you.
That is the very light bulb that clicked on almost as soon as I was diagnosed. I feel very lucky for that. I'm not saying that you can "positive think" your way to a cure; I'm not that much of a Pollyanna.
The truth is that ultimately HIV is a virus and cannot be controlled completely (yet). But, I could and did decide to not just fight it or cope with it, but to thrive in spite of it; one step at a time, one challenge at a time, a good cry now and then, and a whole lot of laughing and living.
With that approach, at the end of every day of my survival, I have been able to look myself unflinchingly in the eye and know that I have done my absolute best. And without ego or regret I can say honestly and proudly … My hero is myself.
JD Isaacs, Atlanta, Georgia, USA
JD is putting together a collective of long-term survivor stories. Please email him your story at jdis@mindspring.com To see some of his work, visit http://www.rainrider.com/
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