One Step Forward, Two Steps Back
Learning How to Address Our Health Challenges & Improve Our Quality of Life
by John Francis Leonard

Let’s face it, I know those of us who are engaged in care are all likely to see our dotage, and I’m grateful for that every day. What isn’t talked about as much are the challenging symptoms and increased likelihood of serious disease—whether it be a side effect of antivirals or HIV itself. For many of us, there are secondary conditions that can seriously erode our quality of life, most of them associated with the elderly. We simply age more quickly.

Recently, I realized that I should have been feeling better than I have in years. At fifty-one, I’ve lost eighty ponds and work out regularly. I haven’t been this fit in over a decade. It pains me to admit how many pounds; with being built like a linebacker, I can carry a lot of extra weight. It’s been a real journey—I had the help of a gastric sleeve procedure—but I really had to meet that surgery halfway, not only eating less, but changing exactly what I am putting in my body. I really hadn’t given getting in shape a lot of thought initially, but, encouraged by my gastric surgeon, I started out slowly with daily walks and soon was working out with a trainer.

Soon though, I knew something was wrong. I looked great, but I felt awful much of the time. I knew what it was, but had been ignoring the signs and barreling through. But friends at work as well as family members and neighbors had something to say, and it was, “You just haven’t been yourself lately, is everything okay?” It was time, time to face some home truths, as my nan used to say. The funny thing is, I was well aware of the symptoms I’ve been experiencing, but the human mind is very clever: it can ignore the blatantly obvious when it’s difficult to bear.

For years, I had a slight tremble in my hands. It was noticeable, but easy to ignore unless I was suddenly upset ,in which case it grew more pronounced. In the last few months, it has done just that, at times, making it difficult, or even impossible to do something like send a text, or type a column. My legs are prone to jerky motions as well; it’s very obvious holding a stretch before I do my cardio. I once thought that the consistent pain in my left leg was simply a product of my lower back issues. I lost the weight, my back was fine, but the pain in my leg continued. I drop things constantly, at home and at work. I’ve made certain that I’ve stuck to my workouts, but it’s taken caution and some modification. Worse at some times, especially mornings, it seemed to be progressing. I’d often read that neuralgia could be a long time side-effect of HIV and it’s life-saving medications, but at eighteen years poz, these were the first side effects I had experienced since my initial adjustment to the medications.

But not so fast, turns out that several other meds I have to take—those to treat my bipolar disorder—have these side effects when taken long term. These medications are just as vital to my health and wellness as the antivirals. They keep me calm and happy, able to deal with life’s challenges successfully. In this case however, not so successfully. I wasn’t myself at all. I was in pain consistently and simple tasks were proving more difficult. I was also missing a lot of days at work, but I was honest with them and they’ve been supportive and understanding to a fault, my editor at this magazine as well. I was cranky, and not a little bitter. I needed a mental adjustment and to talk to my physician sooner rather than later. He knew the what and why, but referred me to a neurologist for confirmation and treatment.

Initially, it was beyond frustrating. Everyone they called was booked until the fall. I needed help now, not this fall. But I soon got a call, someone would see me the following week. My PMD had warned me that some of the side effects of the drugs could be permanent, but I was very eager for more answers and had to make the decision to deal with whatever was to come, good or bad.

I saw him for my initial assessment last week. The news was better than I could have hoped. One great relief was the fact that it wasn’t Parkinson’s disease or something equally debilitating. That had been in the back of my mind for some time, and it was quite a relief. On the other hand, it is my medications and there’s no question of not taking those; they keep me alive and sane enough to enjoy that life. Now my doctor was wrong about one thing, thank God; there was medication that could help my symptoms. My neurologist prescribed a medication to help with my tremors. It’s worked wonders! It’s better than it has been in ages. I don’t have to beg my friends to speak on the phone; I can easily text. My writing takes much less time and I once again can type what I’m thinking at the pace I am thinking it. The jury on my issues with my left leg is still out, but I’m going through extensive testing and should have more answers soon.

Like everything that happens in our lives, there’s been a lesson in all of this. I’m getting older, I’m getting older as an HIV-positive man. There might be more health challenges ahead. I can’t say that I’ll meet them all with a smile, but what I can do, is deal with them immediately with the help of those who know what they’re doing. Suffering in silence never works; the people close to you, as well as others, will hear your cries.


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.