There's a sore on the back of my tongue. I look in the mirror and stick my tongue out as far as I can and I still can't see it. I can feel it, though. Every time I swallow it feels like someone is squeezing my tongue with a pair of pliers, and there's a sensation of trying to swallow hair -- like the hair-covered mole on your grandfather's neck, the one he never shaves. There is a constant burning, itchy pain, which starts at the back of my tongue and radiates down the left side of my neck and into my shoulder.

I smoke too many Marlboros, so it could be cancer. I engage in unprotected oral sex on occasion, so it could be gonorrhea. I am HIV-positive and take Viramune, so it could be a side effect of my newest medication.

I have a doctor's appointment on Wednesday and we'll once again start the process of determining what's going on with my body. It's not like I haven't been through this before with different pains in different spots, improper body temperature, kidney stones, extreme unexplainable fatigue, mood swings and constant diarrhea for more than two years.

This is just the little shit that we who live with HIV are faced with on a regular basis. I feel pretty healthy on most days; and I stay too busy to get all tangled up in my mind as I am now. Then the next little sore pops up or my stomach turns upside-down for no apparent reason and the mind-fuck starts all over again. One more time I am face to face with the Reaper wondering how long I will manage to keep ducking his scythe.

Knowing that one day I will not duck fast enough -- that I am going to die -- is a sobering thought. AIDS may not be the blade that penetrates my armor, but some blade will get through. I am 36 years old. I am not supposed to think this kind of shit. I am supposed to be worried that my hair will fall out in the next five years. I should be going into debt to buy a Porsche in the hope of impressing a good-looking man 15 years younger than me. I should be wondering when I would have to check into the adverse effects of Viagra and balancing the pros and cons of maintaining the hard-on from hell. This is the stuff of mid-life crisis -- not wondering how long these wonderful antiretroviral cocktails are going to keep working, or if they will keep working long enough for some lucky bastard to find a cure so I can stay alive and he can build a 50-room mansion on Martha's fucking Vineyard.

Don't get me wrong: not every thought is filled with this much bitterness. Right now, I'm more concerned than bitter. I am concerned for my seven-year-old nephew, Jesse. My mother has adoptive custody of Jesse because my sister found drugs more comforting than the company of her son. My mother has her little problems, too: emphysema, bronchitis, asthma, a heart condition which necessitated a triple bypass a few years back, and a calcium deficiency which causes ribs to break when she coughs too strongly. She carries around a little oxygen tank, which she turns off whenever she lights one up from her pack of More Menthol throughout the day. I'd like to be able to raise Jesse whenever our cowled friend decides to take my mother, but I have to consider the what-if.

What if this smart little virus decides to resist any and all medication I take and I get sick? And I die. People who do not have an incurable disease don't have the responsibility to consider death when making decisions that may affect the lives of others. Those of us living with HIV do have that responsibility -- if we choose to accept it. Do I have the right to take a child who was abused and forgotten by his mother, who will be traumatized by the death of his grandmother (which will almost certainly happen before he reaches adulthood), and subject him to the possibility of abandonment through premature death by yet another guardian who is supposed to love him? I don't know. If I were raising him, I'm not sure how much more intense the mind-fuck might be when the next little sore pops up.

A Few Months Later

I'm not writing. I'm not reading. I'm not returning my friends' phone calls.

I can't seem to remember why I was so happy to be alive a few months ago. I wake up with this feeling of inescapable despair. It's a feeling that makes your soul seem smaller than it really is. I just go back to sleep most of the time.

The only thing that seems to keep me out of bed for any length of time is going to work. Even that doesn't seem to fill the void any longer. I used to revel in the thought that I was saving the world -- one client at a time. Now I can't wait to get home and turn on the babble box then get to bed early.

I started taking a new HIV med a couple of months ago. The first article I remember reading about it pretty much said take this one and HIV might not kill you but you might. That hadn't occurred to me until I realized not too long ago that I hadn't been out of the house on a weekend in over two months. I've been working with clinically depressed clients for almost four years now. It's just not something that is easy to recognize in yourself. Depression just kind of crawls up on you and before you know it the world has lost all its color, all its flavor, its presentation. A filet mignon with a bottle of Chardonnay shared with Leonardo DiCaprio sounds just as appetizing as a Big Mac with a Coke shared with Ronald McDonald and those little french fry Muppet wannabes, and you don't really care if you have either one of them. The world would be OK if you just didn't wake up tomorrow.

I talked to my doctor about it after I realized what was going on. He asked me if I had considered counseling. I asked him what good counseling was going to do if my HIV meds kept interfering with the serotonin levels in my brain. The only thing in my life that had changed prior to the onset of this depression was the new medication. I loved my job. I had been happily single for quite some time. My finances were better than they had ever been; I was about to buy a house. Nobody had died and it didn't look like anybody was going to anytime soon. So, pray tell, what good was counseling going to do?

Doc capitulated and decided we would try 10 milligrams of Prozac. It's working quite well. I'm back into my keyboard, my library, my passion to save the world and my life. It's just a bit irritating sometimes to realize that I have to take one more pill everyday just to counteract the side-effect of a medication that is, hopefully, saving my life -- but might otherwise have me wanting to get it over with a little bit earlier.

Positive Days

A Recent Sunday

I wake up next to him. We're in the same, spooned position that we collapsed into late last night. My left hand is under his arm; my fingers unconsciously rake his chest hair. He nestles his chin more firmly in the crook of my arm as my index finger traces the outline of his pecs. My ear is pressed against his back and I hear the beat of his heart. Thump thump, thump thump. I feel the rise and fall of his chest with his slow, easy breath. I feel protected -- full. I close my eyes and snuggle a bit tighter as I run the last 24 hours through my mind.

We connected in a local chat room on We had a private virtual conversation. I was impressed by the fact that he typed complete sentences instead of that cyber speak crap that irritates the shit out of me. We were at the Park Pantry eating breakfast in less than an hour. We both had bacon and eggs, crispy hash browns, well done sourdough toast, a side of gravy and coffee with two sugars, no cream.

We walked along the shoreline after breakfast, the backs of our hands occasionally brushing, sending little whispers of hope up my arm into the pleasure centers of my brain. We watched the pigeons basking in the morning sun, picking on each other, stealing edible bits that washed up on the shore. We commented that life should be so simple. And we talked. God, did we talk. We spoke of how we would fix the world, how we were helping to fix our little parts of it. We spoke of the intense, inside work we had done in order to attain some semblance of self-acceptance. We spoke of the omnipotence of love in all its forms.

We went window shopping on Fourth Street. Neither of us wished to afford anything in the ridiculous little shops along this futile attempt at a Melrose recreation. We just seemed to have an unspoken need for this time not to end. We made small talk, we cruised the guys, we dished fashion trends and hairstyles. After a dinner of pasta Provencal and chocolate mousse at the Pizza Place Garden Café on Broadway (we shared the mousse) we strolled on over to his condo on Second Street. And now I'm lying here next to the oh-such-a-cliché man of my dreams thinking about tomorrow.

Thinking about tomorrow -- the only way it could be any better is if the sex were a little more wild, if the fires could rage to a blinding crescendo. But he's HIV-negative. I feel some inherent obligation to maintain control, to keep everything within the acceptable confines of safe sex dogma. My mind screams "But sex isn't safe!" Sex is giving in, letting go, taking and using, stripping passion down to the bare root of recognition, sex is about screaming his name when you're right there at the top of the mountain and him hearing you when bestial urges have deafened him and you haven't said a word anyway. But I can't seem to get to the top when my partner is HIV-negative. I always stop at a safe plateau, the top of the mountain just in sight, knowing I dare not let out enough rope to get there. How long can I stand here looking up through that empty space?

A Five-Minute Chat

I was in a chat room and a profile popped up that read "HIV-bottom looking for HIV-positive top to fuck me bareback."

My stomach did a flip-flop kind of like Ritonavir used to do me about 10 times a day. I knotted up like a bad perm. I had discounted the rumors of people who were intentionally trying to get infected; I couldn't conceive the possibility, the reasoning. Now I had actually seen it on my computer screen and I was floored. I typed, "Do you think living with HIV is so fucking simple?" He didn't answer. One by one, most of the 50 or so people in the chat room logged off. In less than a minute myself and three other people were still in that sector of cyberspace. I typed in "Gee that went well." One more logged off, the last two never responded. This two-minute lack of interaction weakened my libido. I pulled weeds for the rest of the day. And I hurt.

John Kirby  John Kirby is a health promotion specialist in AIDS Project Los Angeles' POWER program. He can be reached by calling (213) 201-1558 or by e-mail at
Back to the August/September 2001 issue of Positive Living.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).