Living with HIV: A Personal Testimonial

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Living with HIV: A Personal Testimonial
en español

By Bo Young
based on a recent message he posted in our Community Forums

I'm not going to pull a Pollyanna and say how great it is to be poz (HIV-positive), but in point of fact, in some ways becoming poz is one of the best things that ever happened to me. I'm not so sure I would have said that when I first had to face living on disability. But in the interim I have traveled and done things that would never have been possible otherwise.

I was probably one of the best (i.e. most psychologically) prepared and best received individuals when I got my diagnosis. I was in the company of virtually every one of my dearest friends, as well as two of my deepest teachers, and was staying at one of the radical faerie sanctuaries in Oregon when I got the news. They immediately formed a healing circle around me and did a laying on of hands. My Native American teacher actually did a "fleshing" with me, which was an incredible thing given that I was trying to come to terms with the idea that my sperm and my blood were now toxic. He actually cut pieces of my flesh (small ones, very small ones…didn't hurt a bit) as we sat and smoked a sacred pipe and all prayed together.

Nevertheless, I would have to say I was probably clinically depressed for the first two years of my diagnosis and was busier preparing to die than I was preparing to live. Among the things that woke me up was my dear friend David, who was also diagnosed about the same time as me and with whom I was traveling a good deal. We were taking the same meds, but he was having a hard time with his (I have never had a hard time with my meds.) Four years into his diagnosis David was walking with his sister and nephew in San Francisco and, as they were crossing the street, a car ran a red light and David, pushing his sister and nephew out of the way was struck by the car and killed. There are no guarantees. We can't even guarantee that you're going to die from HIV. I used to go to a discussion group with a lot of HIV+ men and I would listen to them talk about how they discovered that they were now poz and now they're going to die….like they weren't going to before? No one gets out of here alive. And there are other diseases that are a great deal more debilitating than HIV is anymore. If you're afraid of dying, figure out why and do something about it. If you're afraid of living, that's going to have some ramifications, too. Do something about it.

Here's what I know in no particular order:

We're all lab rats in this experiment with HIV. No doctor has the magic pill and no one knows what's going to happen next. We've barely been taking these meds long enough to know the long-term effects or benefits. Get used to that. That said, we're all a helluva lot luckier than our dear friends who were diagnosed in the first years of this epidemic. It still gives me pause to think of how many of my friends might still be alive if they'd just lived another month or two for the first protease inhibitors to come out. Be thankful, grateful for the meds we have. It's a whole lot better energy to be grateful for meds (and even their side effects) than the waste of energy to complain about all the side effects and worry about dying. Don't worry about dying—we're all going to do it no matter what.
 
Because an HIV diagnosis is NOT a death sentence….Life is. Stop looking for Life to be "fair"…it isn't. You CAN, however, figure out how to write the story you want. If you need it to be a big drama, it will be. Life and HIV are more than capable of providing you with LOTS of drama. But if you need your life to be wonderful and filled with meaning and experience and joy and happiness….go for it! Life with HIV can do that, too. Here's the question I keep asking myself: Who would you be without the struggle? Me? I'm tired of the drama. I have better things to do with my energy.
 
It isn't a choice between EITHER western medicine OR complementary or "alternative" medicine….it's an increasingly vast buffet table and you should pick and choose from all of it and take care of yourself and do what makes you feel comfortable and good. Listen to your doctor as your advisor, but YOU are the final arbiter about what is good for you and what isn't. There is no all-powerful, all-knowing person out there who knows what's best for you. You do. I do HAART, exercise, yoga, meditation and have traveled to the Amazon, for example. It's all good.
 
Get healthy. Work out. Stop putting off going to the gym and start eating right. There's a direct positive correlation between lean body mass and survival rates. This isn't a bargaining chip, either. It's just about choosing to live—and living means taking care of yourself. Smoking is suicide. That's OK if that's what you want to do…crystal, drinking all night, irresponsible sex? Same thing…just don't lie to yourself or me about it. Make your choices and the consequences will follow like night and the day.
 
I may not have achieved "enlightenment" but here's a flash light: a word about "Either/Or" versus "Both/And" decision making. "Either/Or" choices come from a view of the world that sees scarcity….not enough time, not enough of everything to go around. "Both/And" choices come from a view of the world that sees abundance…there's enough for everyone. When presented with a problem or a situation I can choose the Either/Or way of looking at it or I can pick the Both/And way of looking at it. It's about learning to live with life's contradictions. I've found that when I frame a problem in an Either/Or way it usually leaves me in a trapped place and if I can find the Both/And re-framing of the problem it tends to create options, open doors. I prefer that, i.e. "I can either have HIV or I can be healthy" vs. "I can both have HIV and be healthy." I'd venture to say that almost every challenge can be changed in this way.
 
There are people out there who can love you even if you are poz. They can be poz themselves or not. Being poz in not a barrier to intimacy unless you want it to be.
 
Ignore alarmists and those who would tell you that, for example, HIV doesn't cause AIDS. In a word: horse pucky. Or that the government is part of some vast conspiracy to infect us all…the government is barely capable of pounding sand into rat holes much less undertaking a conspiracy that would have been this vast. If this disease had anything to do with humans it was more than likely out of error than intent.
 
Don't postpone joy. This is critical.
 
You can't take care of (love) anyone until you learn to take care of (love) yourself. Learn how to ask for what you need and what you want. Learn now to say "No." Learn how to say "YES!"
 
Learn about gratitude. In the final analysis this, for me, was the greatest lesson, the greatest spiritual awakening that was brought to me by HIV. It's easy to be grateful when things are easy. Like human relationships, it's easy when it's easy—it's when things get hard that you get the measure of the man. Learning to be grateful for all the lessons, especially the hard ones, will teach you more about Life and living than any other single thing, in my humble opinion. Life has a funny way of returning to the point, returning to the lesson until you learn it. Once you've heard it, embraced it and learned it, you and Life will move on to the next thing. Because Life is not a destination, it's a journey. Let Life surprise you and it will. I can make it a hard journey and suffer (god knows there are a lot of pay-offs in this society for being a victim and you can waste a whole lot of energy on righteous anger or righteous self-pity, but after a while it gets tired and so do you) or I can dive in and suck the marrow out of it all and live until I die.

I just re-read this and I realize there are some bumper sticker thoughts in here. Sometimes the truth can sound kind of tired and trite. But then again, so does all the fear and loathing I hear everywhere I turn. Given the choice I'll choose the positive thought. And that is a given. That, in the end, was how I came to be positive about being positive. Remember when "positive" was a good thing? It still is. It's all about the choices you decide to make. It always has been and it always will be. You can't control Life, but you can control your choices in it and your responses to it.


Credits

Bo Young is the Publisher and Editorial Director of White Crane, a quarterly journal on spirituality for gay men (www.whitecranejournal.com). He has written for POZ magazine, RFD, Fine Cooking and other publications. He lives in Brooklyn where is working on a biography of a contemporary Shoshone medicine elder and Two Spirit.


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Last Revised: August 25, 2002

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