Time for the quarterly tune-up. It’s really tedious after 11 years, as you might imagine.
Category: ultrapositive
Zinged again
This book! It’s good, but more unnerving is how often its arrow hits the mark:
It wouldn’t be strange to get it and then to decide as Perkins did that this one particular person gave it to you, one out of ten or fifty or a hundred, maybe because that person made you feel something special, had done wonderful things in bed or gotten you to trust him physically and mentally as no one else ever had.
— Horse Crazy, Gary Indiana
First Mention Of AIDS In Print: 30 Years Ago Today
Thirty years ago, on June 5, 1981, AIDS was first acknowledged in print.
The article from the Centers for Disease Control wasn’t widely read, and it didn’t give a name to the disease. (It would be another year before scientists found one that fit, after giving several a try, including the terrible GRID, for “gay-related immune deficiency”.)
The paper certainly didn’t talk about HIV, since the virus wasn’t discovered until later. In fact, the article was mostly about the unusual appearance of Pneumocystis pneumonia in five young, gay men in Los Angeles. For all scientists knew, they were dealing with a superstrain of Pneumocystis that could eventually threaten the entire planet.
Well, they were half right.
At first, HIV and AIDS were a major setback for the burgeoning gay rights movement. Things had been moving swiftly for the community until then: the American Psychiatric Association removed homosexuality from its list of diseases in 1974 — just five years after Stonewall — and we were being treated more fairly in the media. We were even featured on popular TV shows like Dynasty and Soap, and although those representations weren’t perfect, they were far better than the psychopathic killers and suicidal maniacs we’d played before.
AIDS took the lives of many who campaigned for those achievements, and even people who weren’t ill were dumbstruck for a time. But grief is an unparalleled motivator, and soon, the LGBT community and its allies had formed sophisticated, efficient activist groups, pushing for treatment and prevention programs, destigmatization, and equal rights. We did as the ACT UP slogan said and turned our sadness into rage.
Over the course of the epidemic, roughly 30,000,000 people around the world have died from AIDS, and another 32,000,000 live with HIV/AIDS today. Treatment has gotten much easier and more bearable for those living with HIV, and there have especially promising developments in recent years, particularly in the area of stem cells and genetic therapy. But there is still no cure.
Take a moment today to think of your friends, family members, and neighbors who have died from AIDS or who are living with HIV/AIDS. Renew your commitment to wiping out this disease. Contribute to a local hospice, sign up for a charity walk, send a letter to your elected officials — whatever fits your style.
Everyone thought that AIDS would be cured by now. Let’s make certain that happens within the next 30 years — or hopefully, far sooner.
[Reposted from the lovely Sturtle. For those who have time, here is the original article from June 5, 1981 (or on the CDC website).]
Continue reading “First Mention Of AIDS In Print: 30 Years Ago Today”
The slippery soapbox
I foolishly got involved in a heated online discussion about HIV and dating and disclosure this weekend. Foolish, that is, because in the midst of a lot of passionate — and often mean-spirited — opinions firing back and forth, I chimed in without really anticipating that in the true spirit of the internet someone would anonymously choose to be a real asshole, and it would really rattle me. Aside from that unpleasantness, though, I made a few points that are probably worth sharing.
Candy store
Most of my medical stuff happens at the sexual health clinic rather than a GP’s office, so the vibe in the waiting room is always a little weird. In the town where I used to live, this meant there were lots of nervous college kids, sketchy guys, and kinda trashy girls. There are lots averted eyes and people actively trying to state at the telly instead of anything else.
In the middle of London, however, this means that everyone is almost eerily hot, and mostly gay — including the staff. It’s hard to ignore the distinctly cruisy vibe in the room. Even if folks aren’t actively cruising, they’re definitely inspecting everyone else. It’s a totally different kind of awkward, much more like my doctor’s office back in Chelsea in New York.
Is there a socially acceptable way to ask someone out at the clap clinic?
Twice a Day
Every day I have at least two moments when I long to be carefree and untethered by responsibilities. Most days, of course, have a thousand little obligations, responsibilities, deadlines, or other duties scattered around, but there’s a depressing inevitability about at least two of them that always grinds me down just a little bit, no matter how content I’m feeling otherwise.
Every morning, I worry about breakfast. I don’t particularly like breakfast, and would prefer to just eat whenever I first get hungry on any given day, but I have to eat at least a bowl of cereal or a couple of pieces of toast by 11:00 at the very, very latest so that I have a full stomach before I take my morning medicine. I have to take two pills every morning, and I usually throw in a multivitamin just to be on the safe side. One of those pills is really easy on my system, but one will give me a crampy, acid stomach for the rest of the day if I haven’t eaten anything first. For a while I took that one pill at night instead, but bed-time was usually too long after dinner, and I eventually develop a minor ulcer and an ongoing case of indigestion that just wouldn’t quit. Switching to a morning schedule pretty much cleared up those troubles, so I stick with it.
Every night, I take a second dose of the other pill, the easier one. That one doesn’t really affect my stomach very much, but I need to try and take it about twelve hours after the morning one, just to spread out the dosage as evenly as possible. I’m lucky that today’s drugs give you some wiggle room with the timing, but I still need to do my duty within a certain window of opportunity.
If I can’t get any breakfast, or I forget to take my medicines at the right time, or if I’m away from home and I’ve forgotten to bring my pills with me, it’s better if I skip a dose altogether than start taking my medicine erratically. I’ve never asked how often I could miss a dose before I have reason to worry, because I’m better off worrying every day, just to be safe.
So every day, at least twice a day, I worry how long I can keep this up. All things considered, I’m pretty lucky that such a relatively easy regimen has kept me in such good shape these past six (well, it’s almost six — WOW, it’s almost six) years, and I have no idea when or if I’ll need to switch to something else. Every three months or so I have at least six vials of blood drawn for some tests, and a week or so after that I go for a check-up so my doctor and I can make sure everything is still ship-shape.
If my test results start showing a pattern of changes for the worse, I’ll need to switch medicines until some other combination gets things back on track. My doctor in the UK isn’t used to seeing patients take the combination I’ve been on for the last five years or so, so he’s been pressuring me a bit to switch to something he’s more familiar with. I trust my doctor in New York, though, who has gotten me this far with a minimum of fuss, and he and I both think that if the current treatment has been so successful for me for so long, it doesn’t make much sense to monkey with it. Once you’ve used any one antiviral medicine for a while, you can’t ever go back to it (so I’m told), so I feel a certain pressure to keep as many options open for as long as possible.
So I get up and forage for food every day, whether I want to or not, so I can take my morning pills without any discomfort. Every night I take my evening pill as promptly as I can, to, so I can maintain a regular barrage of medication into my system that will keep my unwelcome tenants from getting used to the regimen and finding new ways to cause trouble.
Every time I take my medicine, I give a passing thought to how lucky I am, all things considered. I responded to treatment quickly, and have actually been healthier than ever before in my life once things settled down. I live in a prosperous western society with easy access to the medicines that keep me going. In the UK I’m even luckier, because I don’t pay a thing for my medicines, while in the US I was paying over 850 bucks a month in insurance premiums and copayments to support my habit. Even those prices were a bargain: the retail value of the pills I take is somewhere in the vicinity of 2,000 dollars a month.
So at least twice a day I think about how my situation is a drain on someone else’s resources, since I’m getting such a good deal (financially speaking). At least twice a day I think about how the clock keeps ticking inside me, wondering when I’ll have to give up the security of a comfortable, predictable treatment plan. At least twice a day I try to think if there’s any likelihood of me needing to have my medicine with me in the next twelve hours, instead of leaving it on the shelf in my room where I always know where to find it. At least twice a day I wish I could just forget about it, and then I remember that there was at least one time when I forgot about vigilance and then ended up in this whole mess in the first place. So at least twice a day I feel a little sorry for myself, and then think it’s my own fault anyway so I should stop whining about it and just count my blessings. Then I sip some water, swallow, and get on with my day.
And that’s at least twice, but usually other things will come up in the course of a day that makes me think about the same things. Granted, I spend a lot more time thinking about comic books and typography and people I love and other things that make me happy, but at least twice a day I wish things were a little easier.
Achoo!
Without fail, the change of seasons brings on a nasty cold for me. Sometimes better, sometimes worse, but always following a change in the weather. This time around it came a little later than usual, but I think I was able to hold it off through sheer force of will. Too much to worry about already, too much to do, too many hassles to make time for a cold. I made the tactical mistake, though, of pausing for a moment last week to catch my breath, which pretty much meant I was bound to succumb.
And, also in boringly predictable fashion, my cold started with a series of a half-dozen or so sneezes that come out of nowhere. By the time I’ve blown my nose after the last sneeze, the works have all gummed up, my head feels foggy, and all my energy is gone. From there, it’s just an endless cycle of naps and decongestants until I get back on my feet.
Mmmmmmm, nap, that’d be just the thing right now…
I count my blessings, certainly. I’ll certainly take occasional colds over the dizzying array of mystery ailments that might threaten me if my immune system weren’t in such good shape after years of careful monitoring and medication. It’s always been a dark irony that I was much more of a delicate flower my whole life before I became positive. Strep throat, the ailment that used to hit me about as often as colds do now, hasn’t troubled me in ages, for instance. Maybe the big difference is that I pay more attention now that the potential troubles are so much more serious. I’m far less likely to ignore the little things than when I would blithely assume whatever bug I had would soon pass. Sure it sucks to live with the threat of my system adapting to my drugs and starting to go haywire, and it certainly sucks to be dependent on regular medication to keep me on an even keel, but I guess that’s just my cross to bear.
Yes, I think a nap would be a very fine thing right about now. Pardon me, won’t you?
Statuette of Liberty
I just stumbled across this study I did for a poster illustration. I couldn’t find a stock image of the statue that worked for what I had in mind, so I bought this statuette at a gift shop across the street from the Empire State Building and photographed it from the angle I needed. I’d forgotten about this study image, which is interesting in its own way.
Ignoble Infirmity
I’ve been mostly bed-ridden for the last couple of days, wheezing my way through a nasty chest cold that’s thrown me for a loop. Miraculously, though, my giant-sized tonsils haven’t gotten in on the act they’re usually the first line of defense to crumble in the face of random germs. As a matter of fact, my tonsils enormous, oversensitive, and a lifelong problem aren’t the only part of my immune system that have been reinforced by modern medicine during the last few years.
Ironically, the last few years of having an incurable disease have been the healthiest of my life. I’ve always been on the sickly side, plagued by minor ailments and inconveniences as long as I can remember. The frequency and severity of those various bugs really skyrocketed during the years between my infection and my diagnosis. A few years of treatment, though, and I seem to be as hardy as anyone else. (Furiously knocking wood as I type that.) I’m also much less stoic about getting sick.
When you sniffle and shrug off sore throats and stuffy sinuses all the time, you get in the habit of ignoring it all. No big deal, just more of the same ol’-same ol’. When you feel alright most of the time, though, even a little wheezing and wooziness seem like a huge deal. I just hope that if the situation ever demands that old habit of stoicism that I still have it in me. There doesn’t seem to be any reason for me to worry about taking a turn for the worse, but who knows? (The not knowing is the best part, after all.)
I’ll just keep counting my blessings, and maybe I’ll lie down for a nap. I’m feeling a bit dizzy, I’m afraid. But that’s all.
Done
Yesterday was a stunningly awful day that came hot on the heels of a week that wasn’t awful but has been remarkably stressful. Yesterday was a combination of nagging stomach issues, stupid AT&T problems (FIVE hours on hold!), the ceiling at work springing a leak over my computer, (ruining a really cute outfit), and on and on and on. Mentally, I’m finished for the week and just waiting to crawl back out of the snowstorm we’re expecting. It’s a real pain in the ass to deal with work when in my head I’ve already retreated into a ball huddled beneath a blanket.
Which, by the way, was how I spent most of the Thanksgiving weekend, thanks to the aforementioned nagging stomach issues. I was starting to suspect that the new medicine might be a big part of the problem, so I was really primed to be inundated by all the somber World AIDS Day programming that Tivo kept serving up. If I haven’t been cramping, writing essays, or working this week, there’s a good chance I was weepy and feeling sorry for myself.
And I can’t even eat ice cream to soothe the angst. Bleah.