“He’s the one they call Dr. Feelgood, he’s the one that makes ya feel alright.” - Motley Crue
I can’t remember a time in my life when hospitals or doctors weren’t part of my equation. Mid-way through my fourth decade of living, I now see my life as a series of ten-year-long chapters, with medical events drawing a clear line between each. In Chapter One, hemophilia had more than a recurring role, especially since I had a pretty active childhood.
Dr. Ron Fischer, or “Doctor Ron” as I called him, was also a mainstay. The kryptonite to my main adversary, the dreaded nosebleed that wouldn’t stop. His office was in the middle of a neighborhood, not in some stuffy hospital. The waiting room had magazines for parents and a bin of plastic toys for kids, but the wait was never long. At most, there was one person ahead of you. Once I got back to the room, Ron would quickly settle into his chair on wheels, rolling around the room for whatever he needed as he hummed to the music. He’d ask what I’d been up to recently before going to work stopping the bleed with a Smurf blue numbing liquid that would make the silver nitrate sticks tolerable.
On the way out, I’d snag a sucker, make a round of hugs and say my goodbyes until the next time. What I didn’t know at the time was that he was trying to stop the bleeds without having to rely on the concentrated blood plasma treatments that people with bleeding disorders rely on. Why? Because he was afraid they were contaminated with HIV... I’d already contracted hepatitis B via those treatments, and he wanted to spare me of any more viral consequences.
At the beginning of Chapter Two of my life, age 11, I tested positive for HIV. I wasn’t seeing Dr. Ron too much, because my physically active childhood was replaced by a love for music, drawing and making up my own dice games. In addition, Dr. Ron had performed an experimental surgery on my problematic nostril, which made nosebleeds (and the potential for risky treatments) far less common. He was devastated at the unfortunate news that I’d tested positive despite his best efforts to keep me safe.
Enter Dr. Lyman Fisher. Lyman was a hematologist, working at MCV which was a good hour and a half from where I lived. Mom entrusted him with my health after I tested positive- it was 1987 so there weren’t the treatment options that would be available a decade later. Unlike Dr. Ron, I wasn’t too happy to see Lyman, because he represented the labwork- those little pop quizzes on my t-cells which would determine how much time I had left.
Over time, though, he won me over. After the appointments, he’d take me and Mom to “Skull & Bones”, a little diner-esque eatery right beside the hospital. They’d get me a wrestling magazine, which I buried my face in as they discussed all the most recent discoveries where HIV/AIDS was concerned.
It was in high school where Lyman went above and beyond. I’d exposed my girlfriend to HIV, recklessly having what can best be described as tantric oral sex... things went swimmingly for awhile, I was able to not have an orgasm until the one time I wasn’t. It all came out, my HIV status, a secret I didn’t think I’d share with anyone. She went to Lyman to get tested for HIV and the test came back negative. I felt horrible that she had to go through that, all because I was too immature to handle my diagnosis in a better way. I was in denial, but that relationship showed me that my medical resume wasn’t all just about me.
I’d made so many peoples’ live far less easy.
Dr. Lyman did his best to do what I couldn’t: talk to my girlfriend about HIV and set her at ease as best he could. And, thankfully, I learned from that experience, and made a vow to never get physically involved until after I’d disclosed my HIV status.
Chapter Three would bring the advent of effective HIV treatments, and Lyman did his best after every appointment to try to get me to consider them. My t-cells hovered around 200 but I’d figured that after a decade of being positive that maybe, just maybe, I was one of those long term nonprogressors. At age 20 I opened up about HIV, going public with a web site and eventual POZ Magazine cover story and column, but as far as my health was concerned I was still in denial, and at age 23 I was in trouble, nursing a paltry 38 t-cells...
Dr. Lyman was retiring, and made one last attempt to get my to start HIV meds. I said I’d think about it, as I always said but never truly did. Since I’d lost a startling amount of weight, I agreed to accept Lyman’s parting gift to me: a prescription for marinol, synthetic THC. Now, I’d never smoked pot before, and even though I was still exhausted, at least I was eating a full meal again. Also, I’d just started dating Gwenn, and boy was I a lot to handle in those early days of our relationship. I knew she was the real deal when she didn’t run for the hills, and was patient with my inexplicable resistance to take HIV meds.
Having just moved to Charlottesville, I decided to find a new doctor a little closer to home than Lyman was. Enter Dr. Greg (pictured above with me and Gwenn in 2013). During my first appointment with him, Greg looked at my skinny frame and my wimpy lab results. He didn’t mince words when he said I would be starting treatment. And I knew it was time. Gwenn had moved in with me, which meant I couldn’t hide the state of my health from her, or myself, anymore. I truly think the marinol helped to chill me out and help me accept that it was time to move on from my fabricated self-image as a long term nonprogressor.
I promised Dr. Greg I’d start in a couple of weeks, after a birthday trip to the beach I had planned with Gwenn and two other friends. He agreed and, after I held up my end of the deal, we’d established an important part of the doctor/patient relationship: trust. Along the way, side effects would necessitate switches in regimens for me. The medications always worked, my weight and t-cells came back as my viral load was reduced to undetectable. A lot of doctors would have denied the request to switch, and probably claim that the side effects were worth the rewards...
But my quality of life was important to Dr. Greg. Reluctantly, he also let me try week on/week off with my regimen, which helped with side effects. After multiple tests at the end of a week off showed no negative impact on my t-cells or viral load, we stuck with the week on/week off plan for close to a decade. (I’ve been on uninterrupted treatment for the last several years.)
A few years ago, I remember being nervous about telling Dr. Greg that Gwenn and I had ditched the condoms as believers in U=U and science. Intellectually, I knew he’d be fine with it. I’m just bad at serious discussions, and most of my visits with him are filled with laughs, jokes and life updates. “If I were in your position, I’d do the same,” he said. I was relieved, but not surprised, and the rest of the appointment was like any other.
So, on this National Doctor’s Day, I want to send out a heartfelt thank you to my team. From the earliest days to now, and with whatever awaits in the future, I have always been looked after, respected and, yes, challenged when need be. But most of all?
I’ve felt loved.
Positively Yours,
Shawn
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