More than ten years ago I wrote about what I was thinking and feeling immediately after I got my diagnosis of “HIV-positive”.
What I wrote then shows how I was once a fervent believer in the mainstream AIDS cult. Since then I have come to a dissident perspective on my own, and was actually surprised to learn there is a community of people who, like me, were questioning everything we’ve been told.
This was but the first chapter in one volume of my life story. For first time visitors, please be sure to also read How I survived AIDS without drugs to understand just how much my beliefs have changed.
December 22, 1998
It finally happened.
After 15(?) years of wondering and thinking about it, I’ve finally turned HIV-positive. All those anxious times in waiting rooms waiting for testing results. Assuming I had to have it, only to find out I was still negative. I’ve imagined this a thousand times before. I feel like a well-rehearsed stand-in actor who after so many years of waiting to be—but never being—called on stage, learns suddenly and unexpectedly that he’s ‘on’. Now.
How many times have I wondered if I wasn’t some Typhoid Mary. The tests were limited and fallible. If anyone should be infected it’s me. But I’m not. Could I be carrying the virus and spreading it to tricks, lovers and friends? Or maybe I was immune. Maybe one in a hundred/thousand/million who could oppose the virus? Why weren’t “they” studying us?
How do I feel now? It’s been about 12 hours since Patti told me. One word keeps coming to mind.
Not the word I expected to use. The playwright didn’t include it in the script. At least not in this scene. That’s the word used when the test comes back negative. That’s how I felt when the tests came back negative, too. Well, sort of. I mean there’s the Typhoid Mary Syndrome. And Survivor’s Guilt. That moment of ACT UP backlash for being an AIDS activist without the AIDS. But yeah, I felt relieved each time I learned I was negative.
So why should I feel relieved now? I guess because I no longer have it hanging over my head. It’s not out of my reach now. It’s where I can fuck it over like it has fucked me over. I’ve always loved a good fight. And this one is the ultimate. I get to practice what I’ve felt like preaching for so long. And because I KNOW. There’s no wondering. No doubt.
I know it sounds crazy. But yeah, I feel relieved.
The timing all fits, too. I’ve got a job. I’ve got insurance. We are in better shape financially than any other time in our lives.
Oh yeah, Michael.
I guess I’m hard on him. Not just with this. I mean, really, what does he expect? Life to be a fairy tale? If not this, it’s something else.
He’s always hated accepting my sexual freedom, except for those times when it flowed over to include him. Well, that’s likely to change now, huh? Like beautiful, young (fill in the blank) is still going to be interested in Jon when he finds this out, right? I know my sex life isn’t over; but I also know I’ve benefited from the “fact” that I’m HIV-negative. was HIV-negative.
Of course he expects the worst. His initial assumptions and prejudices are still founded in the “death sentence” stage. I don’t see it that way. Maybe 3 or 4 years ago. Not now. Not if I make the right choices. Not if I’m lucky. And I happen to think I am.
I think I have some very good reasons to believe that I am one of the luckiest people alive.
Yeah! I love that word. For more than 10 years hearing the word positive outside of clinical HIV discussions has been like being an old Klanner having to hear that once-beautiful word ‘gay’ forever ruined by homosexuals. Hearing a co-worker say “this is a very positive development for our company,” and internally thinking: “Does that mean the company will die in less than a year?”
Now I get to use the word positive in a, ummm, positive way!
I’m just rambling. Bouncing around. That’s what my mind has been doing the last several hours and that’s what I’m trying to capture here. I started waking up at 4 am or so. Slept well, I think. But had to pee. Instead of going back to sleep my mind kept reminding me of all things that were on it. It is my first morning after, you know. Kinda’ like thinking about the first time I drove home after finding out. I remember my first drink, the first phone call (to Gordon). The first time I drove downtown to get Michael. This is my first writing.
I know a lot more than a lot of my friends knew when they found out. I had a test just a few months ago that was negative. But I’ve been having some symptoms for awhile (that’s why we ran the test—to rule out the possibility). I need to get copies of the last few blood works from Dr. Snavley. I remember her mentioning there were a few markers that were off “just a little”, but nothing significant. Well, they may be now.
Patti thinks I’ve probably become infected in the last nine months. That narrows it down quite a bit, but not enough to draw any conclusions, which would be pretty futile anyway, but I can’t help wondering. Of course, I’m even more concerned about anyone I’ve been with the past year. I will never put another person at risk. No one else is entitled to feel relieved like I do (laughing).
I have to visit with (name deleted). He’ll probably freak. He’s high-strung enough as it is. Of course, he needs a wake-up call. He’s entitled to being fucked up and confused about his sexuality, but a reality call this early in his coming-out can only help him stay uninfected in the long run. And the likelihood of me having infected him is a fraction of 1 percent. Though I must confess I was looking forward to plugging his near-virgin ass!
I doubt if I can get it hard enough for that (at least with him) for a while. It’s not that I plan to give up on sex. But for the time being my libido can stand to rest awhile. Too many other things to deal with at the start.
Like anti-virals. I gotta decide on treatment options. I’ll talk to a couple of docs before deciding, of course, but am leaning toward an aggressive cocktail treatment to try to break the virus’ replication before it’s damaged my immune system.
Of course, the drugs have their own lethal capabilities, so I’m exploring alternative boosters to help my systems cope with what I imagine to be akin to a US surgical attack on Sadam using toxic weapons. A mini-nuclear strike with a contingency plan to limit the fallout.
It’s all political, you know. And this is for the greater good. (smiling)
The virus is currently in its most aggressive reproduction stage as I write. I don’t know how long it’s actually had to get established, but I’m hoping not long. It’s still in the areas of my body where the drugs work best: bloodstream, possibly lymph nodes (they’re not swollen yet, though). Keeping it from getting established in the nervous system and hidey holes is the first goal.
December 24, 1998
8 am Christmas Eve
Home alone sanding living room and hallway floors. Took the day off from work even though I’ve charged them for a full week on the time card. I’m assuming I have an unspoken understanding with HN. My boss Laurie has been amazing. She’s more upset than I am over some of the speed bumps I’ve encountered.
I really wanted to start on some drugs by Christmas day. My current PCP, Dr. Snavley, is on vacation. Her covering provider was “real uncomfortable” about even seeing me, as HIV wasn’t his “specialty” (he’s a gastrointestinal doc). Snavley is an excellent doc; but if I don’t have access to someone in her absence, she’s not the right doc for me. She’s also Art’s doc, which is why I know her. Of all the people I could care less about knowing about this, art would be at the top of the list.
Yesterday I switched to new doctor, Jost (that’s pronounced with a “Y”, not a “J”). He’s in a practice that a majority of people I know involved with AIDS would consider one of, if not the best HIV treatment clinics in the area. I’ve either accepted or chosen (I’m really not sure which yet) to wait for the results of my viral load and CD-4 counts to decide on which cocktail I’m going to use, if any. He’s not my idea of a good time (his personality/belief system just didn’t spark with mine on first contact), but I’m reserving my judgement of how we’ll fare together. Jost wasn’t all that impressed with the combo I was ready to go with. On the other hand, he seemed to leave the final decision to me. I didn’t feel decisive enough to push the issue yesterday, and waiting a week doesn’t give me the anxiety that the two week wait for Snavley’s return caused. It’s also a relief to know that if Jost goes on vacation, there are three other HIV-specialists backing up his practice.
The choices! I assumed it wouldn’t be any harder than choosing a new car. But I’m not even at a point of knowing whether I need a VW Beetle or a mini-van! I am (naively?) optimistic. I think my odds of not only surviving, but thriving are very high. I probably need to spend more time considering the alternative, but if I don’t act assertively and positively now, the odds of having more time to consider are worse. Before I get back to my morning project, the other things I haven’t yet shared are:
- The hoops I had to jump through to see a doctor yesterday
- Thinking about the positive things I’ve gained by this including access/entree to some amazing circles. I imagine that some collections of the most interesting amazing men are going to be HIV-infected. Guess it’s pretty elitist; but the disease has some interesting side effects (how many books; plays; CDs; national tours of art (or lack of art) have resulted from the first generation of AIDS?). Like I said, I need an hour to try to translate that one simple idea that lasted less than a minute in my mind and prompted me to start writing this morning.