Today, December 1st, is World AIDS Day. I first joined Daily Kos in 2006. At first I posted only comments but on December 1 of that year I posted my first diary using World AIDS Day as a topic. Since then I have tried, sometimes successfully and sometimes not, to continue the practice of posting a WAD diary; I believe I missed only one year.
Like most of my previous efforts this one will mainly be a personal one rather than a global, political or statistical survey though trust me there will be some of that as well. I started this diary without having any clear idea of how I would conclude but as I put the finishing touches on it (it's just before 9 a.m. Pacific Time on Monday morning now), I will note that I have already answered one question: why do I continue to write these diaries. As of a couple of moments ago I didn't see any others on the topic; so it's down to me for one simple reason: Silence equals death.
First it was "gay cancer;" then it was "GRID" ("Gay-Related Immune Deficiency") and finally, in 1982, it became AIDS. HIV came along after the virus was discovered. Even though it took only three years (from 1980 to 1983) to make that discovery, that seemed like an eternity at the time.
I am 63 years old. I began the process of coming out as a gay man in the early 1970's while I was still in college but that fact was known only to myself until the middle of the decade. I had a girlfriend in college; she was the first person I confided in when I determined it was foolish to pretend I was heterosexual. We are still friends; in fact our relationship continued to be a sexual one for the next couple of years until it was clear that that part of the situation was over and done with.
I cannot say for sure precisely when I heard the first whispers within the gay community about some sort of illness affecting my peers. My best guess would be that I started hearing these things in the fall of 1980, prior to the first news reports, which didn't appear until the following summer. As it turned out, by the time the fact that something had been going on was being reported in the media I had already been infected with HIV though I had no way of knowing it at the time. In contrast to my vagueness as to when I first started hearing that my friends, or friends of friends, were getting sick in ways not previously conceived of, I was eventually able to pinpoint the very date on which I contracted HIV--December 5th, 1980. I know the name of the person who infected me; we remained friendly acquaintances though by no means close for a number of years until I changed coasts and our paths ceased to cross. I assume he passed away long ago though of course I can't be certain.
In 1985 I tested positive for HIV; in 1987 I was able to ascertain (thanks to have participated in the clinical trials for the Hepatitis B vaccine from 1978 to 1984) that my infection dated to not later than late in spring of 1981. Recollecting a particular encounter and a subsequent serious illness which I'd thought at the time was "the flu" I was eventually able to determine the date of my infection with some degree of certainty.
Being of a certain age--namely of the generation of gay men most devastated by the initial phase of the AIDS pandemic--I began losing friends and acquaintances early on. The first person I knew of contract an AIDS-related opportunistic infection was diagnosed a few weeks before I myself became infected (meaning that he had probably contracted HIV several years earlier than I had). And thus it went. My friends died; I lost my partner Mario (who I'd met shortly after moving to San Francisco in the fall of 1986) on December 4, 1992. My previous partner Bob who I'd left behind in DC passed away the following April. And things continued in this vein until the mid-1990's when protease inhibitors came along, bringing many back from to lives of apparently good health. People certainly continued to die from AIDS and do so to this day. We are now several generations of treatments beyond protease inhibitors; each advance brings new hope as well as new challenges and of course no drug is perfect. There are always side-effects. A couple of years ago I had to switch medications quite suddenly when I began showing evidence of kidney damage.
In a certain very real sense the AIDS pandemic has bifurcated. In First World nations, HIV affects mainly gay men and IV drug users. Things are quite different in the rest of the world. Contrary to the ravings of the Religious Right, worldwide the overwhelming majority of HIV infections and AIDS deaths have occurred among heterosexuals.
In the early days of the AIDS epidemic in the US, because the disease fell primarily on despised minorities, dealing with the disease did not, to all appearances, register as a high priority with the federal government. It is well known that President Ronald Reagan did not utter the word "AIDS" publicly until 1987. His indifference and the indifference of his administration was inexcusable; it arguably made the effects of the epidemic far more widespread and devastating than they needed to be. The stories of gay men being abandoned by their families and even their other gay friends when it was discovered that they were infected are too numerous to cite.
I don't think, nor do I feel any need to apologize for, the rise of groups like ACT-UP which insisted on fighting for visibility and for treatment. If nothing else their work gave rise to new means of political action as well as to new means of conducting medical research. They made the world look at "diseased pariahs" when it was quite disinclined to do so and got at least some people to understand that LGBT people are deserving of respect and deserving of equality under the law. As painful as it was to go through and despite the fact that, ironically, HIV is in most of the world a disease that mainly afflicts heterosexuals, dealing with the crisis has made the LGBT community stronger. And I'll note here as I've observed before when the topic came up that it was only testing positive for HIV that impelled me to tell my parents I was gay. I was already 34 years old and they'd long since figured it out anyway, but acknowledging that simple and perhaps in the end not all that important fact was freeing. As with the admission of my status to them a couple of years later, not having to hide greatly improved my relationship with them. And thank goodness they were supportive.
So where do I stand today? I am now at the outer end of being middle-aged. I'll be retiring at the end of the year. Although I am a gay man I am also white and middle-class. I one of the fortunate people who has stayed alive and well, who has not experienced financial insecurity or healthcare insecurity or housing insecurity; I suspect that I am in the minority in all of those respects. I certainly have much to be grateful for. Some of my good fortune has been based on circumstance; some has come from the realization that I needed to take good care of myself and some I would guess is just a matter of genetics.
A person who lives with HIV is a person whose immune system is always active--my body is continually operating with some level of inflammation even though it generally isn't obvious to me. It is thought that people like me who have lived with HIV for decades are likely to age prematurely. About eight years ago I broke my right clavicle. I was told it would take six weeks to heal; it took twelve. If I overexert myself I pull muscles or strain tendons--injuries that I might have dealt with in a matter of days when I was younger. It now sometimes takes weeks to heal from these relatively minor things. Certainly there HIV-negative people my age who experience these sorts of things as well; I suspect however that I will need to exert particular care going forward. The same medications that have kept me alive have also had effects on me at a cellular level. Although I gave up smoking and alcohol and drugs decades ago I am still likely at an elevated risk for heart disease and stroke. I take testosterone; I take medication for high blood pressure and high cholesterol. There is some history of dementia in my family. I have no way of knowing whether it will ultimately affect me, when that might happen, and whether or not having HIV for a very long time might not accelerate the process. About all I can do is to monitor my health very carefully. At some point I'm hoping a study will come along that I can enroll in.
As an individual I certainly cannot personally save the world and everyone in it (I have felt at times as though I was supposed to be doing precisely that; it's not a healthy attitude to hang on to). That doesn't mean I can't do anything at all. I'm not foolish enough to believe that HIV is the only important issue in the world; indeed if we continue to destroy our planet, living with HIV will shortly become a sort of luxury problem. The economic inequality that exists in the world cannot be allowed to continue without being addressed. There certainly are other health-related issues that must be addressed. And as for continuing race-hatred and injustice well, I think we all know that problem hasn't been solved either.
Still one can only do so much. And I try to do what I can. I can continue to mark World AIDS Day. I can continue to offer my own personal experiences. I can raise money for AIDS-related charities. I've done reasonably well in that respect and I plan to continue doing so. I do this of course for a number of reasons. Some of those reasons are at least somewhat self-serving; if nothing else the sort of charitable work I do serves as a means of dealing with the great loss I experienced when I was younger. Additionally, since I am, relatively speaking, a person with some privilege, the least I can do is to get others who are likewise privileged to contribute money towards the care of those who are not. I will also admit that as much as I detest asking for money, I believe in the cause, and the event for which I raise money is one I've been devoting myself to for the past fifteen years. After raising a minimum of $3,000 to support the work of the San Francisco AIDS Foundation, I get to ride a bicycle from San Francisco to Los Angeles. This may sound quite weird but I really enjoy doing it. I raised over $8,000 for this year's ride; for next year my current goal is the goal I'd set for myself for the past several years: to raise at least $7,500. If you'd like to help me get there, you can follow this link. Another version of the link appears in my signature line in the tip jar.
To circle back to where I started, I keep on writing these diaries because I have to, because nobody else seems to have bothered thus far today, because AIDS is far from over. It will not go away simply because we stop talking about it. There is still plenty of stigma attached to living with HIV or AIDS and the best way to combat that stigma is to speak up and to be visible. The slogan coined by ACT-UP in the 1980's remains true today: Silence equals death.