The Road From Perfection
If I had been asked in the months following my diagnosis whether what I ate and whether I exercised could somehow control the HIV in my body I would have said, "No." Looking back, though, my behavior suggested a different answer.
Almost overnight I stopped caffeine and sugar, started taking vitamins and supplements with religious devotion, switched to unprocessed organic foods, added more long-distance runs and resistance work to my schedule and took up yoga. At the time, I was doing what I believed necessary to manage my health. Looking back, it seems pretty clear I was trying to outrun a train.
I started to realize things were out of hand when I visited an acupuncturist during this time and she asked me to write down all the supplements and vitamins I was taking. When she pointed to a few specific items on the lengthy list and asked what they were for, I heard myself say, "I don't remember." It wasn't that I had been taking things without meticulously researching them; I just couldn't keep them all straight.
Maybe in my head I knew "do everything perfectly" didn't equal "control HIV," but my behavior came straight out of "I need to do something or I'm gonna die." In the crisis of my diagnosis, I suppose I needed something to control, as if my brain took on a hobby while the rest of me was freaking out.
The irony of all this self-care was that it threatened whatever pleasure was in my life at the time. My runs were no longer the relaxing detours of my week but what I was supposed to do to purge toxins and keep my cardiovascular system toned. Yoga class felt less like a chance to practice meditation with my body and more like an obligation. The chores just kept piling up. Even the occasional six ounces of coffee acquired the taste of guilt.
Meanwhile, my viral load went up and my CD4s went down. When I ultimately went on antiretroviral therapy -- the thing I was desperate to avoid -- I found unexpected relief in what felt like surrender. As my viral load went to undetectable and my CD4s climbed above 1,000, I relaxed into the knowledge that I wasn't going to die next week. I started to believe I was in it for the long haul and I began to behave that way.
To be honest, I somewhat resented drug therapy. I hadn't taken an antibiotic in over ten years, let alone the three medications my regimen required every day. While HIV had never shown me a symptom, the diarrhea caused by Viracept was very real.
Strangely, though, I think this helped me start to see how diet and exercise fit into the picture. Some research and experimentation led me, for example, to the discovery that glutamine and calcium supplements could completely resolve my intestinal upset. I began to focus on supporting my body to tolerate the medications and reduce their potentially toxic effects.
Six years later, I have what I would call a recovered attitude about the role of diet and exercise in managing my HIV disease. I have a better understanding of all the tools of wellness and I've had some time to get adjusted to what it means to live with HIV.
The pleasure is back in my running. That cup of coffee tastes good again.
I don't look at my diet and exercise habits as ways to knock down the virus; I eat well and I exercise because it's really good for my body, and it feels that way. I try to keep it simple. The two things that I've always felt were most important for long-term strength and survival -- gut health and muscle mass -- are the two things I try to support with what I eat and what I do.
By anyone's standards, I eat well -- organic vegetables and fruits, whole grains, plenty of protein and water. I'm a vegetarian, which probably helps me avoid some of the more unhealthy foods, but forces me to pay more attention to what I eat to be sure I get all the nutrients I need.
These days I exercise with realistic goals, a commitment to do the work, and forgiveness. Last year I trained successfully for a half-marathon but had to pull out a few days before the race when I got a hypersensitivity reaction during a drug switch. I was disappointed, but I took great satisfaction in knowing I could go the distance and committed myself to finding another race. For someone perpetually at risk of death-by-perfectionism, learning how to say "Oh, well..." -- and meaning it -- is as important to a successful exercise regimen as being disciplined about putting in the time every week.
These days my life feels too short to fill with "shoulds" and too long to opt out of investing in it. I've discovered a vast, sort of unruly world that exists beyond the pre-diagnosis denial that I would ever die and those first post-diagnosis months of being consumed by the idea of my death.
I engage in a fairly constant process of negotiating what I am willing and able to contribute on any given day to feeling healthy and strong. No one makes me find creative ways to eat broccoli (not my favorite) or get myself out the door for a run on a dreary day. Sometimes, though, these simple choices about what to put into my body and how to keep it strong remind me that I'm also choosing to participate fully in my life... and that feels good.
Heidi M. Nass is a community advocate based in Madison, Wisconsin.