What They Didn’t (or Couldn’t) Tell Me

Living with HIV for the Long Run by John Francis Leonard

First of all, I don’t want it to seem that I’m not grateful to be alive. When I think of the generation of gay men who were gone well before their time, I remember just how lucky I am. So many gone–gay, straight, bi, trans, men and women–those who preceded me give me strength. That said, I distinctly remember my doctor’s words, “You’ll live a long and healthy life.” He was an old friend of my partner’s and certainly, in part, as all men tended to do at that time in my life, wanted to spare me any worry.
Another point that must be made in his defense, the drugs were still fairly new. They had few examples of otherwise healthy men who had taken the drugs long-term. Do I wish someone had given a clearer picture of how it has progressed? Certainly, but I know they had to look at the positive and were relieved to finally be able to give someone good news when they had tested positive. It was rather a matter of the blind leading the blind, and I have complete confidence in the care I  received.
I was very lucky for a good many years. I initially had trouble with the side effects of one of my medications, but they eventually landed on a combination that worked for me. I grew to take very poor care of my health for a good many years, and it ironically seemed to kickstart some major issues once I lost ninety-five pounds and started taking more care of my health. Now I’m fifty-two and not one of the “hot” young gay guys any longer. In some ways, that’s only a relief, but I do take great care of myself physically. I spend much time on how I dress and present myself to the world. People often tell me that I look great, but I only humbly thank them for their kindness. It’s something I don’t dwell on. I’m too old for excessive vanity. I just want to look my best. It’s the armor underneath which I face the world.
I only bring this up, not wanting to lend it any more importance than it deserves, but to emphasize the fact that while I look good, I often feel less than my best. At times I’m in pain and discomfort. An extensive series of small strokes has made my sense of balance less than ideal. Neuropathy causes significant pain in my left leg, and a tremor I’ve had in my limbs and hands has made certain tasks much more difficult. Typing this now is slow going. At times, I can’t hold my phone to read it. Old age comes to us all, and those memory issues we all struggle with are even worse in my case. There are times when I think of a task I’d like to perform, and as I go to carry it out, it vanishes into the ether. Suffice it to say, I write a lot of lists. I failed an extensive memory test at my neurologist’s, and he told me that my issues are typical of someone who’s been positive for two decades. He didn’t offer a prognosis. Perhaps he didn’t know it. But I’d like some idea of what to expect in the future.
Is this actual dementia? On my long diurnal walks, my legs sometimes feel like they’ll suddenly buckle. Will I need a cane soon? Will the tremor grow even worse? My neurosurgeon wants to refer me to another neurologist. Perhaps that’s best. At my last visit to that neurologist, the one treating the neuropathy, I informed him that his communication skills left something to be desired. Needless to say, my input was not well received. He took four months to test me with no feedback whatsoever. It took my PMD and Infectious Disease Specialist calling me to find out about the strokes and be given any information. Time to move on.
Trust me when I say, I still count myself lucky. When I think of friends wasting away from a disease for which there was no treatment for too many years and very little concern or care from our government and countrymen, I am all the more certain. But it’s time. Time for some honest conversations with our physicians and healthcare workers about what aging with HIV can mean for some of us. I have dear friends who have had a rough go of it, and perhaps I should have heeded their experiences more carefully. But I’m a fighter. This is not defeat, and I will not cede. I will live my life as fully and with as much thought as I can. I will continue to learn and grow every day. And guess what? I’ll look terrific doing so. These are hardly my salad days, but I will make the most of each one of them.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for fifteen years. His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2.