August #50 : The Bully - by Shawn Decker

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August 1999

The Bully

by Shawn Decker

Our hemo hero gears up to battle fatigue and stop wasting time

I’ve hit a wall. And this time, instead of telling you how I’ve blindly but victoriously plowed right through, I’ve got to say that I’ve been stopped dead in my tracks. I’m now wondering, “What can I do to get over this?”

It’s not like the wall hasn’t been there all along. And it’s not some sudden surprise attack that we positoids are so adept at handling. This has been a constant yet often underestimated struggle. My wall is fatigue.

And for five years I’ve let it slide—along with my numbers. Part of that slack surely is an unconscious “Just glad to be here, folks” approach, coupled with my aversion to medications. (They put me, a person with hemophilia, in this boat to begin with).

Don’t get me wrong. Denial has always been a strong ally of mine. It got me through junior high, where thankfully I was shallow enough to agonize more over my complexion than over my serostatus. From the beginning, HIV, as a medical condition, was a vague concept to me. Unlike hemophilia, which manifested itself physically  (nose gushers, bruises the size of the Great Lakes, etc.), HIV only made its presence known indirectly (I got kicked out of school, people kept warning girlfriends, etc.). I viewed it almost as a social disease.

But now I’m ’fessing up: I have a deadly virus in my body.

Or on my back. I never minded being the victim of HIV’s cruel stunts and demeaning treatment, so long as the bully took my lunch money only in the privacy of the boys’ room. But now word has gotten around: I am HIV’s beeyatch.

You see, I’m currently in (yet another) serodiverse relationship, and we spend a great deal of time with each other. Want to find out how sickly you really are? Spend a week with someone healthy.

A stroll through the mall shouldn’t make me feel like I’ve just completed a triathlon. I know that’s not normal for a 50-year-old, much less a whippersnapper in his 20s like me. Being around my lovely love has made me want to feel better—more, dare I say, negatoid-like.

Now I want it all. In taking charge of my health, I’m doing it for myself, but we positoids always wonder how our little viral adventures affect our neggie-mates. There’s no training ground for falling in love with those of us who have illness and death hanging over our heads. It’s a trial by fire—either they can handle it or they can’t.

In the past I’ve never even brought up to a mate the possibility that I could get really sick: You know, that “a bus could hit either of us tomorrow” bit we use to change the subject. But now I’m more willing to discuss the rational side of infected life and all the fears that go with it.

And on top of all that, summer is here. I refuse to sit on my ass. I want to explore the vast green of our Virginia with my love. I want to rediscover cheesy theme parks with roller-coaster rides and shag under the stars after a long, hot day. So what must I do?

Energy lapses are the cinder blocks of my wall, and appetite woes are the cement. Nothing is more disheartening than not being able to polish off a heaping plate of my favorite restaurant’s fettuccine Alfredo. I sit there thinking I’m scarfing it down, but the food just seems to regenerate—it doesn’t disappear like in the good old days.

So, as a start I’m going to experiment with Marinol, the wacky-weed pill that gives you the munchies. A lot of my poz pals have been pushing it on me lately, and I’m looking forward to finishing a meal for the first time in months. For an energy boost, I might go with testosterone shots. The side effect there is that I’ll be more horny. Oh darn, I better think long and hard about that one.

That’s as far as I’m willing to go right now. No protease teasers, no combination cocktailing. With my thin blood and lame-ass liver—my early ’80s–model blood-clotting factor didn’t just have HIV swimming in it, but hepatitis and other fiends—trying those things is almost more of a risk.

The irony is that for the last few years I’ve used hepatitis as my shield, my big reason for not taking meds. And now I realize just how dire a predicament I am in. I can’t afford to panic, but I can’t walk blindly into the future, either. Stay tuned.

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