I and my friend John, also living with AIDS, had always bitched about the docs and pharma execs who insist that AIDS is now a “manageable” disease. Not that I’m ungrateful or anything—but manageable? Let us count the ways! “Yeah,” we’d snort, “you can manage AIDS by wearing Depends to catch the diarrhea your antibiotics send your way.” Or: “You can manage AIDS by puking your guts out twice a day after meds.” (If you can even access meds in the first place.)
But darned if those meds didn’t have me feeling good enough this summer (all “manageable” things considered) to bust my butt at the gym. And when I say “bust,” I’m not kidding. I was managing so well, I overdid it—and pulled a ligament in my right heel. After 23 years with HIV and 10 of those with full-blown AIDS, I can’t imagine any pain that’s not virus-related. So I mistook the misery for my usual foot neuropathy. But when I hobbled to my HIV pain management clinic, it sent me to my podiatrist. He told me I had “plantar fasciitis.” It’s a common—get this—sports injury! You may also know it as a heel spur. Never much of an athlete, I felt empowered by such a studly setback.
I soon plunged into the parallel universe of neggie rehab. Unlike my HIV doctors, who confronted ailments that were new and strange when they appeared, the fasciitis folks instantly diagnosed the problem. There’s no barrage of tests. My friend Tony, meanwhile, told me to check out the hot guys in the physical therapy waiting room—also gym victims. For the most part, the patients, straight and gay, men and women, are chipper and buff. They’re not the emaciated and pale brethren common to HIVer waiting rooms—especially in the earlier days of the epidemic, when it was less manageable.
The therapists promised me that if I do what they say I’ll soon recover. With their stretching exercises, they said, the hurt will ease. That was so much nicer to hear than “Take these pills, and we’ll monitor you, and hopefully you’ll feel OK for a while if you can just hang in there until something better comes along.” Even though I must wear a boot brace and the heel pain is worse than the neuropathy—indeed, it may be the most debilitating pain I’ve ever experienced—it seems more manageable than my routine HIV aches. The worst-case foot scenario is that I’d need surgery to remove the offending tissue. You know, I’ve often secretly envied people who have trouble in one part of their body and, after an operation, can return to their normal life. I would just love to have an operation to fix AIDS. I want to cut HIV right out of my body.
I’ve never harbored hope that I’d see the end of AIDS in my lifetime. And I am truly blessed to still be alive and active, no longer deathly ill all the time. AIDS may not end soon, but however slowly and surely, living with it is getting better. I just worry about a treatment culture that puts its right foot in its mouth with phrases like “manageable disease.” Phrases that could spur complacency and condescension.
Today in the elevator at my podiatrist’s, a man saw my brace and told me he’d had a heel spur, too. He said: “People are always surprised at how bad it hurts. But you will get over it!” Which is cool. Because according to the AIDS docs and pharma execs, I have all the time in the world.