THE BLOG
11/21/2013 03:08 pm ET | Updated Feb 02, 2016

The Perils of Being a Long-Term HIV/AIDS Survivor

Cultura/Seb Oliver via Getty Images

In my circle, suicides among long-term HIV survivors seem higher than average these days. Depression and long-term HIV go hand in bloody hand. And if you say to your doctor, "I am contemplating suicide," you get a short trip to a jail cell, or in my case the psych ward. But if you say, "I am going off my antiretrovirals," you get the patient's bill of rights, a DNR, a blank sheet for you to list all the assets you no longer own, and hopefully some state-sponsored hospice care for the end game.

It's not getting any easier for long-term survivors of HIV. Drug addiction, especially to meth and alcohol, are entrenched. So too are routine central nervous system events like anxiety and panic attacks, depression and suicidal ideation, even suicide itself. I base this not on any statistics or national averages, just what my ear tells me when it rests on the unfinished tracks of a rail line aiming for a station marking the end of AIDS. This is quite a long train ride. It took 30-plus years to lay tracks, but it stops short of that final destination. Where the tracks come up short, we've made a resort out of a deserted landscape. We've found ourselves the only oasis without water. And we've celebrated the end of something that has not ended in an environment not meant for unprotected access. We are so relieved that HIV is over that we have failed to realize that HIV is not over.

Complicating the problems are a whole host of social and medical misconceptions about the virus. If you look at any ad for antiretroviral medication, the one-a-day solution to your HIV problem, you would think that you can survive this just like the handsome fellow in that advertisement. But the reality is much different. A friend, now dead, once told me, "When they invent a pill, the one that'll strip away the stigma, the one everyone else has to take, then I'll take my Atripla." Atripla is a commonly prescribed triple-combination antiretroviral medication. What my friend was saying was that the stigma of AIDS is so strong that he was giving up, because no amount of Atripla will repair a self-image that experiences life as a death sentence.

You want to get a kid to use a condom? Put me in the room like a dead air freshener and I'll scare that shit right on him. Maybe instead of pushing prophylactics, we should try talking about the realness of living your life on disability, with no career options and no life savings. Maybe I can walk young, clean, temporarily drug- and disease-free men and women to my stack of unopened social services letters, and they can help me read through them. We can try to find the ones I am most terrified of, like the one that says that my prescription plan has just expired. Or the one that says that I don't even qualify. Maybe instead of a billboard with sexy people using dental dams, we can have me, 18 years positive, telling my dogs how I haven't had sex in years because I am neither drug- nor disease-free and my testosterone levels are undetectable thanks to narcotics and antiretrovirals.

As unsexily as possible, I want to tell kids that their lives will be tied to a pharmacy and an infectious disease clinic. Their career they can toss in the shitter, because no matter what you think, by year 18 you are going to be fatigued. Your fatigue is going to be fatigued. You'll be socially ostracized whether you know it or not. And every time you get a bruise, a skin rash, a bad headache or a stomach problem, you're going think, "Is this it? Is this what's coming for me now?" There is no reprieve from my anxiety or my depression, not ever. And there is no drug effective enough to stop the shakes. The shakes not caused by alcohol withdrawal.

No. Most kids are not thinking about 50 or even 30. They're thinking about now. I was a kid once. Sex is a powerful elixir, but it dilutes common sense. So it is inevitable that all, young and old, will encounter the virus that causes AIDS. Until there is a cure, there will always be HIV, like a wet stain on the duvet. You'll just be scooting around it, trying to get off at the same time.

Have you ever tried to commit suicide and failed? I have. The last time it was so laughable that I told it in joke form. But truthfully, it's a deep-inside, broken-bone-crushing hurt. That slick Seattle bridge. The sumac and the blackberry bushes. A can of gasoline and a lit cigarette. All the dope in my system. The fact that if I hadn't already been half-crocked, I would never have bounced and tumbled and lived. And several attempts at suicide by overdose too, all misfires, that will never go away no matter how many times I land that punchline. The pills will be no lesser, nor will the bridge grow any shorter, nor will the cars I smashed and the emergency-room red bracelets and NA newcomer chips I strung together to make a wreath and decorate my pitiful tree one holiday in rehab get any less Charlie Brown shiny. Two of the five friends I have known who went off their antiretrovirals and passed away from AIDS in the last decade tried suicide first. And they failed. And when they failed, when they awoke with a vomit-filled plastic bag taped around their head, or a heavy-duty hangover from the wrong bottle of painkillers, the decision to have a death from AIDS was a whole lot easier to make.

Lifting my head off the tracks, I see the train coming to get at that mirage. The functional cure, a chronic manageable illness, a design for living with HIV/AIDS. Right now big Pharma has no incentive. AIDS Inc. has no incentive. The only incentive lies in the expanding population of long-term survivors and the ones who will face the same road as many of my dearly departed friends. The only motivator to ever build what feels like a space station is the people who want to get there. I suspect I am not the only man with his bags packed. They've been on the platform for 18 years.

Need help? In the U.S., call 1-800-273-8255 for the National Suicide Prevention Lifeline.