I was diagnosed some time between Valentine's and Easter of 1986. The exact date is lost, but I do remember I got a Dear John letter from my boyfriend around Valentine's and I was starting to have symptoms of shingles then (which is what led me to get tested) and when I came home from the doctor's my room-mate was making an Easter bonnet. The lab forgot to do my first test, so I went to a different hospital, and I think it was near Easter I finally got the results ... more than a month from the time I'd gone in.
It's an awfully long time to be poisonous, and hard to have survived all of my friends, but I have been relatively free from physical suffering. The stress of hearing I might have a year to live to "as much as three" to "possibly up to ten" to "some people make it to fifteen" etc is a mindfuck. From today's perspective, I can look at all the things I "should" have done and see how silly/wrong/stupid/damaging it was to worry, but I'm surprised I haven't learned more from the experience. It's as if my capacity for emotional development was arrested at that moment when I was 23 and I've been walking around half dead ever since.
To bitch about it to anyone who didn't live through that era sounds a lot like someone who'd complain if they were hung with a new rope, but it's not the "being alive" part I'm struggling with. I haven't dated in 15 years - some because I fear transmitting the virus, some because I'm pretty shut down socially, and some because I'm physically out of shape and I feel too gross to be intimate with anyone. I haven't found an anti-depressant that works, and I've been on over 30 different psych meds, and though I've been for two consultations for ECT, I chicken out before I go through with it. I didn't prepare, financially, socially, professionally, physically, or mentally for old age. I was doing the things senior citizens do when I was in my twenties, like going to my friends' funerals, talking about medications and bowel movements, and not pursuing anything I didn't think I could reasonably commit to staying with like a college education or a relationship.
I have a lot of rage to work through. It ticks me off to be "congratulated" on surviving, or to be told I must have "had the right attitude" because I'm still grieving for my friends and I feel guilty for not knowing that I had so much time. It feels like I betrayed them by not living the lives I know they could have lead. Inevitably, someone will say something like "Nobody knows when they're going to die!" or "Live each day like it's your last!" but I know, living it like it's the last means staying very still and not getting your hopes up.
I'm writing this here for me, so I can vent, and I figured there might be some long-term survivors who can relate. But I'm also writing it to say that, especially with all the treatment available now, it's not necessarily a good thing to be ready to die. Write your will, tell your Mom you love her, and maybe give a little extra consideration to "lifetime memberships" to anything, but otherwise prepare for the best.
Tuesday, March 1, 2011
Wednesday, September 22, 2010
Vilifying People with HIV/AIDS
I've taken part in a couple of debates in the past week that bring it home to me how far we have regressed in AIDS rights advocacy in the United States. We're almost back at the point we were before people literally gave their lives working to provide housing and protection from discrimination for people with AIDS. Actually, we're further back because now we know about how the virus is transmitted, and we know how to protect ourselves, so we are purely on a level of blaming the victims of HIV. Time was, that was a product of fear. Now it's just a product of elitism. That's much uglier.
In these debates, there were two major issues (lots of fringe stuff around them): Criminalizing transmission of the virus and affordable housing. The responses on both of these issues from the vast number of people on the blog where I was contributing was in favor of locking up people with HIV who had not divulged their status, and forcing people with HIV to move to areas of the country that were cheap to live in - regardless of where the individual's doctor and family and support system were located. "If they can't afford to live here on their own money, they should just move. We don't give a free ride to people with other diseases."
Ignorant bastards.
To take such a simplistic view of HIV transmission, to deny all culpability - all responsibility - of the "victim" who has unsafe sex and then wants to blame someone else for the virus; to be so flippin' naive as to think that the only thing that stands between people having unsafe sex is the threat of incarceration; to not anticipate the millions of people who will step forward to point a finger at whoever they happen to be mad at that day and blame them for their HIV infection (behaving as if they were asleep through the entire exchange themselves); to overlook the millions of people who won't get tested because, so long as they don't know they are positive they cannot be prosecuted; to not anticipate that the first step is criminalizing this kind of transmission and next is any HIV transmission and next is any sexual encounter between people with HIV followed by any sex between high risk groups followed by quarantines . . .I've there. . . I BEENknow how hysterical the public can get, particularly a public that sees themselves as somehow immune or above the dirty infected lowlife ... those kind of people that get AIDS . . . is to just spit on all the suffering and dying and trying and working and educating and demonstrating and lobbying and volunteering that my generation gave to make this world a better place. Furthermore, to be so contemptuous of people with the virus that one expects them to just move out of the way ... out of the city ... to make room for people who "deserve" to live. Holy shit! The arrogance!
This world is not better. This world is smug, self-satisfied, privileged, elitist, selfish, uncaring, vindictive and bigoted.
So this isn't a pretty blog entry. No fine work of literature here .... I am pissed. How in Hell did I go through almost 25 years of this crap just to have some snot-nose come along and start pointing fingers at these HIV people who are "to blame." Those little shits would have lasted about 10 seconds in the battle that my people went through. There were no drugs, there was no treatment, there wasn't even any kind of protection to make sure you didn't get fired or evicted or locked up. Now these punks wanna take away all of that that we worked for -- that some of my friends died working for. And these are people from within that gay community! People that most certainly should know better.
In these debates, there were two major issues (lots of fringe stuff around them): Criminalizing transmission of the virus and affordable housing. The responses on both of these issues from the vast number of people on the blog where I was contributing was in favor of locking up people with HIV who had not divulged their status, and forcing people with HIV to move to areas of the country that were cheap to live in - regardless of where the individual's doctor and family and support system were located. "If they can't afford to live here on their own money, they should just move. We don't give a free ride to people with other diseases."
Ignorant bastards.
To take such a simplistic view of HIV transmission, to deny all culpability - all responsibility - of the "victim" who has unsafe sex and then wants to blame someone else for the virus; to be so flippin' naive as to think that the only thing that stands between people having unsafe sex is the threat of incarceration; to not anticipate the millions of people who will step forward to point a finger at whoever they happen to be mad at that day and blame them for their HIV infection (behaving as if they were asleep through the entire exchange themselves); to overlook the millions of people who won't get tested because, so long as they don't know they are positive they cannot be prosecuted; to not anticipate that the first step is criminalizing this kind of transmission and next is any HIV transmission and next is any sexual encounter between people with HIV followed by any sex between high risk groups followed by quarantines . . .I've there. . . I BEENknow how hysterical the public can get, particularly a public that sees themselves as somehow immune or above the dirty infected lowlife ... those kind of people that get AIDS . . . is to just spit on all the suffering and dying and trying and working and educating and demonstrating and lobbying and volunteering that my generation gave to make this world a better place. Furthermore, to be so contemptuous of people with the virus that one expects them to just move out of the way ... out of the city ... to make room for people who "deserve" to live. Holy shit! The arrogance!
This world is not better. This world is smug, self-satisfied, privileged, elitist, selfish, uncaring, vindictive and bigoted.
So this isn't a pretty blog entry. No fine work of literature here .... I am pissed. How in Hell did I go through almost 25 years of this crap just to have some snot-nose come along and start pointing fingers at these HIV people who are "to blame." Those little shits would have lasted about 10 seconds in the battle that my people went through. There were no drugs, there was no treatment, there wasn't even any kind of protection to make sure you didn't get fired or evicted or locked up. Now these punks wanna take away all of that that we worked for -- that some of my friends died working for. And these are people from within that gay community! People that most certainly should know better.
Saturday, August 21, 2010
Ed
HIV took away my youth and my hope. I was 23 when I was diagnosed and at that time it was considered almost certain that AIDS would be the cause of my death, and that I would die young. In a way, I did die, because the people who shared my stories died and they were nearly all of how I identified myself. If a tree falls in the forest, and nobody hears, it doesn't make a sound. The people I meet think I've always been down, but there was a time when I thought I'd have a career and find true love, buy a house and maybe even raise a family. Even I have a hard time remembering those dreams, but part of that is because there's nobody around left to remind me of how ambitious and romantic and idealistic I was.
The last man I dated before I found out I was infected with the virus was Ed. We met in September of 1985 in a gay country bar where I used to go dancing almost every night of the week. I was self-conscious about wearing glasses, so I would leave them in my car and that night I'd been standing by the far corner of the dance floor, looking in the general direction of the front of the bar when Ed walked up and introduced himself.
"I noticed you watching me from across the dance floor. Did you want to dance?"
I told him I wasn't watching anyone 'cos I couldn't see a damned thing from that far away, but I'd dance with him. We went out two or three times before we decided to date exclusively. Really, it was Ed who decided, since I felt like I should like anyone who said they liked me and I didn't have much experience with dating. Looking back, he really irritated me, but he was also kinda obsessed with me and that was flattering. It was while I was dating Ed that I had the tremendous fever and sore throat that I learned later is a tell-tale sign of HIV infection. It lasted a couple or three days, and I even went to the emergency room, but the doctors said it was just a severe cold. I don't think there was even a test for HIV then, or if there was it was probably not very commonly used unless someone had pneumonia or lesions from kaposi's sarcoma. It's hard to remember the details because at the time it wasn't any more significant than any bad cold and doctors didn't start identifying those symptoms as early indicators of HIV infection until many years later.
Ed and I had been dating for a couple of months when he was in a serious car accident. I got a call at work since he was estranged from his blood family and he'd listed me as an emergency contact, telling me that he was in ICU and he might have a broken neck. My boss wouldn't let me go to the hospital. I had to wait until my shift was over, or lose my job, and since I knew I couldn't do anything for him anyway, I stayed at work. When I got to the hospital, Ed was being released. He had to wear a neck brace, but there was no break. He wasn't allowed to work, though, and he needed bed rest, so I stayed with him and cooked, cleaned and did laundry and shopping for both of us. When he recuperated he used his insurance money to buy my favorite car, an Oldsmobile Toronado. It was white with dark read crushed velvet upholstery, and I'm sure I loved that car more than I loved Ed. Seems like he did go back to work for a while, but for whatever reason, he decided to quit. Maybe he got fired or was laid off (it's been so long, I don't really remember) but he told me one night that he wanted to move to Austin. I had always said I'd like to live in Austin, and had even made plans to go there when I was 19, but my uncle had discouraged it. Now, I finally had my chance to go. The only problem was I was gonna have to go with Ed, and I really didn't think we were suited to live together. He wasn't giving me much time to decide, either. He said he wanted to leave in three days. I didn't have much money, and neither did he, but he thought we could make it together. The night after he told me, I was talking to him from my job at the answering service and he asked me if I was only going because I wanted to be in Texas. I told him the truth and said it was no good faking a relationship. One of the women in the office overheard me and yelled out something about "He always fakes it," Ed called her a dirty name (on the phone, to me - she didn't hear) and I disconnected the line. The morning Ed left for Texas, we had breakfast at a cafe on Broadway. I think I was relieved more than anything to not be going with him, but we weren't officially broken up. He was gonna write when he got settled and we tentatively planned that I would join him later on. When he pulled out of the driveway, I watched him from the rear view mirror of my car and Roy Clark's "Thank God and Greyhound You're Gone" came on the radio.
I got a few letters from Ed before the last one - 14 pages - that told me he'd found someone else in Austin and was breaking up with me. Since I hadn't even written to him once, the extended length of this Dear John amused me more than anything. I got the letter right after Valentine's Day and it was just a week or two after that that I was being told I needed the test for the virus. I never did talk to Ed about it. At the time, I assumed that he was the one who infected me, and I assumed he knew by then he was infected himself. Since I hadn't slept around and Ed had so many ex-boyfriends (the one before me hadn't even finished picking up all of his stuff the first time I went to Ed's apartment) I thought he had to be the carrier. Of course, if I had to do it over, I would have told him - just in case he didn't know - and at least keep him from spreading it to anyone else. Times were so different then, especially about how the virus was transmitted. There wasn't any talk of how to have safe sex - just that sex might be unsafe. If I had any thoughts of AIDS it was that I would be able to tell if anyone was that sick. Because of how few people I had been with, it never occurred to me that I would be susceptible. I blamed the people like Ed who had had sex with so many different men, but I didn't understand that by sleeping with someone like that, I was essentially sharing the risk. It didn't cross my mind until I had the virus myself that it only takes one time to be infected and that virtually anyone could be a carrier.
Ed came back about six months after he moved to Texas on a vacation, and he ate at the restaurant where I worked every night until I finally wound up having to wait on him. He was with his new boyfriend and all cuddly, but when they broke up a couple of months later, Ed moved back to Denver. This time, he started dating my roommate. He was really just stalking me, but I wasn't interested. I was mad at him for infecting me (at least that's how I saw it then) and we rarely spoke. I danced with him once (I remember it was "Leavin' On Your Mind") but I always did like to dance - with anyone. I still never discussed HIV with him. It's quite possible he wasn't even infected himself and I had been carrying the virus for some time before I met him and I was the carrier, or that he did infect me, but had no knowledge of his own status. At any rate, I heard that he died of AIDS complications a few years later in Las Vegas. He had finally found a partner and they'd been together for a few years. One of his other exes in Denver that I met in an HIV support group told me about it. One of Ed's exes that dated Ed after Ed dated me.
Ed is the last person I had consensual unsafe sex with and I tell myself that I've never passed on the infection to anyone else, but by not telling Ed to get tested himself, that isn't really true. I don't think he was the kind of person to deliberately infect anyone (and maybe he didn't) and he never told me about his HIV status either, but I don't have any way of knowing when he found out he had it. I have one friend that I keep in touch with across the miles once every couple of years who might remember when I dated Ed, but all the rest are gone. I don't even have any pictures left of him, cos I threw them out when I was in that stage of blaming him for giving me the virus. I don't blame him now. There wasn't enough information out yet about it and we were all so young, none of us thought we would be the one to get sick. I didn't know anyone who had the virus before I found out I had it myself. It was one of those things that was happening in San Francisco and New York, but it didn't seem serious enough to ever affect my life. Now, I've lived with it for more than half of my life and I'm trying to recapture some of those feelings I had before it was ever a part of me. I want there to be something more than just waiting to die.
The last man I dated before I found out I was infected with the virus was Ed. We met in September of 1985 in a gay country bar where I used to go dancing almost every night of the week. I was self-conscious about wearing glasses, so I would leave them in my car and that night I'd been standing by the far corner of the dance floor, looking in the general direction of the front of the bar when Ed walked up and introduced himself.
"I noticed you watching me from across the dance floor. Did you want to dance?"
I told him I wasn't watching anyone 'cos I couldn't see a damned thing from that far away, but I'd dance with him. We went out two or three times before we decided to date exclusively. Really, it was Ed who decided, since I felt like I should like anyone who said they liked me and I didn't have much experience with dating. Looking back, he really irritated me, but he was also kinda obsessed with me and that was flattering. It was while I was dating Ed that I had the tremendous fever and sore throat that I learned later is a tell-tale sign of HIV infection. It lasted a couple or three days, and I even went to the emergency room, but the doctors said it was just a severe cold. I don't think there was even a test for HIV then, or if there was it was probably not very commonly used unless someone had pneumonia or lesions from kaposi's sarcoma. It's hard to remember the details because at the time it wasn't any more significant than any bad cold and doctors didn't start identifying those symptoms as early indicators of HIV infection until many years later.
Ed and I had been dating for a couple of months when he was in a serious car accident. I got a call at work since he was estranged from his blood family and he'd listed me as an emergency contact, telling me that he was in ICU and he might have a broken neck. My boss wouldn't let me go to the hospital. I had to wait until my shift was over, or lose my job, and since I knew I couldn't do anything for him anyway, I stayed at work. When I got to the hospital, Ed was being released. He had to wear a neck brace, but there was no break. He wasn't allowed to work, though, and he needed bed rest, so I stayed with him and cooked, cleaned and did laundry and shopping for both of us. When he recuperated he used his insurance money to buy my favorite car, an Oldsmobile Toronado. It was white with dark read crushed velvet upholstery, and I'm sure I loved that car more than I loved Ed. Seems like he did go back to work for a while, but for whatever reason, he decided to quit. Maybe he got fired or was laid off (it's been so long, I don't really remember) but he told me one night that he wanted to move to Austin. I had always said I'd like to live in Austin, and had even made plans to go there when I was 19, but my uncle had discouraged it. Now, I finally had my chance to go. The only problem was I was gonna have to go with Ed, and I really didn't think we were suited to live together. He wasn't giving me much time to decide, either. He said he wanted to leave in three days. I didn't have much money, and neither did he, but he thought we could make it together. The night after he told me, I was talking to him from my job at the answering service and he asked me if I was only going because I wanted to be in Texas. I told him the truth and said it was no good faking a relationship. One of the women in the office overheard me and yelled out something about "He always fakes it," Ed called her a dirty name (on the phone, to me - she didn't hear) and I disconnected the line. The morning Ed left for Texas, we had breakfast at a cafe on Broadway. I think I was relieved more than anything to not be going with him, but we weren't officially broken up. He was gonna write when he got settled and we tentatively planned that I would join him later on. When he pulled out of the driveway, I watched him from the rear view mirror of my car and Roy Clark's "Thank God and Greyhound You're Gone" came on the radio.
I got a few letters from Ed before the last one - 14 pages - that told me he'd found someone else in Austin and was breaking up with me. Since I hadn't even written to him once, the extended length of this Dear John amused me more than anything. I got the letter right after Valentine's Day and it was just a week or two after that that I was being told I needed the test for the virus. I never did talk to Ed about it. At the time, I assumed that he was the one who infected me, and I assumed he knew by then he was infected himself. Since I hadn't slept around and Ed had so many ex-boyfriends (the one before me hadn't even finished picking up all of his stuff the first time I went to Ed's apartment) I thought he had to be the carrier. Of course, if I had to do it over, I would have told him - just in case he didn't know - and at least keep him from spreading it to anyone else. Times were so different then, especially about how the virus was transmitted. There wasn't any talk of how to have safe sex - just that sex might be unsafe. If I had any thoughts of AIDS it was that I would be able to tell if anyone was that sick. Because of how few people I had been with, it never occurred to me that I would be susceptible. I blamed the people like Ed who had had sex with so many different men, but I didn't understand that by sleeping with someone like that, I was essentially sharing the risk. It didn't cross my mind until I had the virus myself that it only takes one time to be infected and that virtually anyone could be a carrier.
Ed came back about six months after he moved to Texas on a vacation, and he ate at the restaurant where I worked every night until I finally wound up having to wait on him. He was with his new boyfriend and all cuddly, but when they broke up a couple of months later, Ed moved back to Denver. This time, he started dating my roommate. He was really just stalking me, but I wasn't interested. I was mad at him for infecting me (at least that's how I saw it then) and we rarely spoke. I danced with him once (I remember it was "Leavin' On Your Mind") but I always did like to dance - with anyone. I still never discussed HIV with him. It's quite possible he wasn't even infected himself and I had been carrying the virus for some time before I met him and I was the carrier, or that he did infect me, but had no knowledge of his own status. At any rate, I heard that he died of AIDS complications a few years later in Las Vegas. He had finally found a partner and they'd been together for a few years. One of his other exes in Denver that I met in an HIV support group told me about it. One of Ed's exes that dated Ed after Ed dated me.
Ed is the last person I had consensual unsafe sex with and I tell myself that I've never passed on the infection to anyone else, but by not telling Ed to get tested himself, that isn't really true. I don't think he was the kind of person to deliberately infect anyone (and maybe he didn't) and he never told me about his HIV status either, but I don't have any way of knowing when he found out he had it. I have one friend that I keep in touch with across the miles once every couple of years who might remember when I dated Ed, but all the rest are gone. I don't even have any pictures left of him, cos I threw them out when I was in that stage of blaming him for giving me the virus. I don't blame him now. There wasn't enough information out yet about it and we were all so young, none of us thought we would be the one to get sick. I didn't know anyone who had the virus before I found out I had it myself. It was one of those things that was happening in San Francisco and New York, but it didn't seem serious enough to ever affect my life. Now, I've lived with it for more than half of my life and I'm trying to recapture some of those feelings I had before it was ever a part of me. I want there to be something more than just waiting to die.
Monday, August 16, 2010
Heart On My Sleeve
I'm still not sure which direction this blog is gonna take. I don't feel like just making chapters about each person I know that has died. For one thing, these people don't really feel dead to me so much as just gone. It's like I've lost their phone number and address, or they ditched me. I don't know if that's a denial problem I have, or if everyone is like that. When I remember my friends, I know that they're not alive any more, but they are alive in the memories and those memories are tied in with memories of lots of other friends. They didn't always exist separately as distinct chapters of a story for me so much as they were like ingredients that all went together to make a recipe. When I think of them, I think of them in the context of their life more than their ending, and it's the living things about them that I miss. I think then, the entries in the blog are more likely to wind up being reflections on experiences we shared with the occasional chapter devoted to one person.
I grieve - at least at this stage in my life - collectively more than I do for each individual. That's one of the things about writing this blog that I hope will change. I want to be able to go back and give proper closer to the deaths of my friends instead of dealing with one big hurt that is too big to handle. I still have some pictures, books, music and stuff that will make me think of this or that friend, and likely a part of the memory will go to the fact that they're not around for me to call on the phone or run into at a bar. I even have some clothes that I "inherited." Someone mentioned all the different clothes I had once and I said, "I've been blessed to have a number of friends die in my size." It does make it hurt a little when something gets torn or stained, or just worn out. The clothes and the memories and the people are sorta woven together.
I grieve - at least at this stage in my life - collectively more than I do for each individual. That's one of the things about writing this blog that I hope will change. I want to be able to go back and give proper closer to the deaths of my friends instead of dealing with one big hurt that is too big to handle. I still have some pictures, books, music and stuff that will make me think of this or that friend, and likely a part of the memory will go to the fact that they're not around for me to call on the phone or run into at a bar. I even have some clothes that I "inherited." Someone mentioned all the different clothes I had once and I said, "I've been blessed to have a number of friends die in my size." It does make it hurt a little when something gets torn or stained, or just worn out. The clothes and the memories and the people are sorta woven together.
Saturday, August 7, 2010
Larry's Killers
I saw a film this afternoon, "The Mormon Proposition" about the millions of dollars the Latter Day Saints raised to deny homosexuals the right to marriage in California. It's hard knowing that kind of hatred and destructiveness is still around. I've lived through so much of it, and even though I can see some improvements have been made and friends are quick to assure me that I live in the "Most Liberal City In Texas" it doesn't undo the years of being crapped on. Because of the kind of bigotry practiced by people like those who fought to pass Proposition 8, some of my friends killed themselves when they became HIV positive. They couldn't rely on their families, they didn't feel safe at work or safe from eviction because of their health, and they thought they were gonna die anyway. Why wait to have your family to disown or curse you for your sexuality on top of all the rest?
One of my friends, Larry, was a fabulous dancer. He looked like a movie star cowboy from the 1940s; muscular, with a bright smile and dimples, and the best western clothes with crisp starched shirts and shiny boots. (I'd seen Larry in drag before, too, and that was quite the transformation.) He was such a gentleman - maybe five or six years older than me so that'd put him at about 29 when he shot himself in the head. He just couldn't cope with being HIV and disappointing his small town family if they found out. I hold these religious tyrants - these propagandists and buyers of legislation with their tax loopholes and hateful agenda - responsible for Larry's death. They can create an environment without hope for someone who is at their most vulnerable.
One of my friends, Larry, was a fabulous dancer. He looked like a movie star cowboy from the 1940s; muscular, with a bright smile and dimples, and the best western clothes with crisp starched shirts and shiny boots. (I'd seen Larry in drag before, too, and that was quite the transformation.) He was such a gentleman - maybe five or six years older than me so that'd put him at about 29 when he shot himself in the head. He just couldn't cope with being HIV and disappointing his small town family if they found out. I hold these religious tyrants - these propagandists and buyers of legislation with their tax loopholes and hateful agenda - responsible for Larry's death. They can create an environment without hope for someone who is at their most vulnerable.
Thursday, August 5, 2010
Keeping Secrets
I doubt if I'm gonna write this entire blog chronologically, but some of the details of the beginning of my life with HIV are probably best laid down that way as a sort of foundation. I'm still getting used to writing about this, too. I even wonder if there is quite a bit I don't remember any more, but maybe it will come back to me as I get used to looking back on it.
It took a while for me to get over the shingles. I managed to hold on to one of my jobs, but the other two I had to let go of. My doctor had told me that fatigue and stress would make the shingles worse anyway, so I decided to take it easy. I'd only told 4 people about my HTLV-III test: My roommate, my best friend and his boyfriend, and the lady at work who let me use her insurance. I heard about a couple of people I'd known at the bars who had died and there were plenty of rumors about who had "it." I remember a couple of guys getting out of a car next to mine, headed in to a bar called, "Broadway Country" and one of them was terribly thin and in a wheelchair. My best friend was with me and mentioned the sick man's name, which I recognized, but he didn't look like anyone I knew. I just avoided them.
I was trying really hard to put on weight. After a chubby adolescence, I'd trimmed down to about 125 pound (115 at my lightest) and I had been proud of being slender. Now I was terrified that people would think I had AIDS because everyone that was sick was going through wasting syndrome. There weren't any drugs available yet. AZT was about to come on the market, but when it was introduced, it may have killed more people than it saved, and the general word was it was to be avoided. Not that we talked to each other directly about it. Everyone was talking about AIDS, but not in personal terms. I was doing my damndest to look healthy: tanning, eating 4 Big Macs a day and going to the gym.
I found a doctor I could afford to go to without insurance who was also gay, and trusted within the gay community. This was about the time when the Center for Disease Control (CDC) had mandated that all medical records for individuals who had tested positive for the virus be submitted to their agency. My doctor was (illegally) coding the files of his patients in a way that we couldn't be identified if the files were subpoenaed and he was not reporting unless we authorized him to do so. During this time, the former mayor of Denver was trying to get support for establishing quarantines for gays who had tested positive and he had proposed issuing ID cards for those who had not. He wanted to lock up everyone who had the virus. There wasn't anything to protect people from being fired or evicted for being infected with the virus that causes AIDS, so it was common to see people's belongings all heaped in a pile in front of the brownstone apartment buildings in Capitol Hill and Broadway Terrace - the two predominately gay neighborhoods in Denver. There was a kind of unspoken rule that people didn't mess with someone's things, and that was a good thing, but it was also kinda surreal. Here was all the stuff somebody used to keep locked up just laid out for anyone who might come by and steal it, but you'd see the same stuff there for a couple of days running. We knew what was going on, and we knew we could be next. Still, nobody talked about it. It seemed like so much of our communication during that time was without words. Likewise so many of us died in almost complete isolation. There was the fear of being associated with someone with AIDS because of the uncertainty about all of the ways the virus might be transmitted, but also because of any speculation about just how close your friendship had been. And it wasn't just a fear of being ostracized - though there was certainly that - it was a fear of losing your job and your apartment and possibly even your freedom.
I'd like to say that the initial reaction was to band together as a community, but it wasn't. There was a sense of going through something horrible at the same time as other people around you, but there was so much fear. (There weren't any government programs either. Reagan wouldn't even acknowledge that there was an AIDS crisis.) Some people were still in denial about the prevalence of infection, some interpreted any efforts to contain the spread of HIV as an assault on gay rights, and the acceptance of gays within and outside the community was not strong. Internalized homophobia has always caused strife. Then as now, people may admit to certain degrees of gayness and revile all those who have more "gay" in them than they think is acceptable. Compounding the problem of separation in the community, it appeared that a greater number of the "bottoms" than "tops" were dying. Sometimes people would say, "It's only the nice guys that are getting sick." There was talk of the "AIDS personality."By this time, we knew that anal sex was one of the ways that you could contract the virus, but some people still thought you could only get it if you bottomed (and it's true, the susceptibility is greater) and this created a kind of fear or aggressiveness toward men who seemed like they were passive sex partners. They might have been nice guys, but they were treated like poison in public.
Within a couple of years, a private non-profit agency emerged that addressed some of the needs of those infected with what had been renamed the HIV virus (it's now called the Colorado AIDS Project, and it may have been then, too) and I read about it in the back pages of the local gay tabloid. They were available for counseling and support groups, but you had to call the number listed in the paper, give them your address and first name only, and they would mail you their address and the time of your appointment. There was no sign on the building, and no last names were ever used. I attended two or three different meetings with the same support group, but it was pretty awful. Everyone was scared, some were very sick, and I was afraid to get too close to them. It wasn't just the revulsion toward illness; I was started to close myself off from my feelings. These were all people who were going to die, so why would I want to open myself up to that kind of loss? Still, one man in the group did offer me some advice that was very helpful. I hadn't told my parents about my HIV status, and he was encouraging me to be open with them. He had grown children, and he had discussed his health with his kids. I thought my situation was different until he asked me, "If your Mom had cancer, would you want to know about it right away, or would you want her to wait to tell you until she was almost gone?" I never did talk with him about it again. I didn't go back to the group, but a couple of years later I ran into one of the guys I'd met there. He said everyone else was dead - including the facilitator. It was weird talking to him about it, 'cos I could feel him checking me out - just like I was checking him out - and wondering which one of us would be next.
It took a while for me to get over the shingles. I managed to hold on to one of my jobs, but the other two I had to let go of. My doctor had told me that fatigue and stress would make the shingles worse anyway, so I decided to take it easy. I'd only told 4 people about my HTLV-III test: My roommate, my best friend and his boyfriend, and the lady at work who let me use her insurance. I heard about a couple of people I'd known at the bars who had died and there were plenty of rumors about who had "it." I remember a couple of guys getting out of a car next to mine, headed in to a bar called, "Broadway Country" and one of them was terribly thin and in a wheelchair. My best friend was with me and mentioned the sick man's name, which I recognized, but he didn't look like anyone I knew. I just avoided them.
I was trying really hard to put on weight. After a chubby adolescence, I'd trimmed down to about 125 pound (115 at my lightest) and I had been proud of being slender. Now I was terrified that people would think I had AIDS because everyone that was sick was going through wasting syndrome. There weren't any drugs available yet. AZT was about to come on the market, but when it was introduced, it may have killed more people than it saved, and the general word was it was to be avoided. Not that we talked to each other directly about it. Everyone was talking about AIDS, but not in personal terms. I was doing my damndest to look healthy: tanning, eating 4 Big Macs a day and going to the gym.
I found a doctor I could afford to go to without insurance who was also gay, and trusted within the gay community. This was about the time when the Center for Disease Control (CDC) had mandated that all medical records for individuals who had tested positive for the virus be submitted to their agency. My doctor was (illegally) coding the files of his patients in a way that we couldn't be identified if the files were subpoenaed and he was not reporting unless we authorized him to do so. During this time, the former mayor of Denver was trying to get support for establishing quarantines for gays who had tested positive and he had proposed issuing ID cards for those who had not. He wanted to lock up everyone who had the virus. There wasn't anything to protect people from being fired or evicted for being infected with the virus that causes AIDS, so it was common to see people's belongings all heaped in a pile in front of the brownstone apartment buildings in Capitol Hill and Broadway Terrace - the two predominately gay neighborhoods in Denver. There was a kind of unspoken rule that people didn't mess with someone's things, and that was a good thing, but it was also kinda surreal. Here was all the stuff somebody used to keep locked up just laid out for anyone who might come by and steal it, but you'd see the same stuff there for a couple of days running. We knew what was going on, and we knew we could be next. Still, nobody talked about it. It seemed like so much of our communication during that time was without words. Likewise so many of us died in almost complete isolation. There was the fear of being associated with someone with AIDS because of the uncertainty about all of the ways the virus might be transmitted, but also because of any speculation about just how close your friendship had been. And it wasn't just a fear of being ostracized - though there was certainly that - it was a fear of losing your job and your apartment and possibly even your freedom.
I'd like to say that the initial reaction was to band together as a community, but it wasn't. There was a sense of going through something horrible at the same time as other people around you, but there was so much fear. (There weren't any government programs either. Reagan wouldn't even acknowledge that there was an AIDS crisis.) Some people were still in denial about the prevalence of infection, some interpreted any efforts to contain the spread of HIV as an assault on gay rights, and the acceptance of gays within and outside the community was not strong. Internalized homophobia has always caused strife. Then as now, people may admit to certain degrees of gayness and revile all those who have more "gay" in them than they think is acceptable. Compounding the problem of separation in the community, it appeared that a greater number of the "bottoms" than "tops" were dying. Sometimes people would say, "It's only the nice guys that are getting sick." There was talk of the "AIDS personality."By this time, we knew that anal sex was one of the ways that you could contract the virus, but some people still thought you could only get it if you bottomed (and it's true, the susceptibility is greater) and this created a kind of fear or aggressiveness toward men who seemed like they were passive sex partners. They might have been nice guys, but they were treated like poison in public.
Within a couple of years, a private non-profit agency emerged that addressed some of the needs of those infected with what had been renamed the HIV virus (it's now called the Colorado AIDS Project, and it may have been then, too) and I read about it in the back pages of the local gay tabloid. They were available for counseling and support groups, but you had to call the number listed in the paper, give them your address and first name only, and they would mail you their address and the time of your appointment. There was no sign on the building, and no last names were ever used. I attended two or three different meetings with the same support group, but it was pretty awful. Everyone was scared, some were very sick, and I was afraid to get too close to them. It wasn't just the revulsion toward illness; I was started to close myself off from my feelings. These were all people who were going to die, so why would I want to open myself up to that kind of loss? Still, one man in the group did offer me some advice that was very helpful. I hadn't told my parents about my HIV status, and he was encouraging me to be open with them. He had grown children, and he had discussed his health with his kids. I thought my situation was different until he asked me, "If your Mom had cancer, would you want to know about it right away, or would you want her to wait to tell you until she was almost gone?" I never did talk with him about it again. I didn't go back to the group, but a couple of years later I ran into one of the guys I'd met there. He said everyone else was dead - including the facilitator. It was weird talking to him about it, 'cos I could feel him checking me out - just like I was checking him out - and wondering which one of us would be next.
Wednesday, August 4, 2010
Whimper
When I was 22 years old, I was working three jobs, saving up money for ... something. I dunno. I must have had big dreams then. I was barely getting any sleep, but I felt strong and there just didn't seem any reason why I couldn't go on pushing myself forever. Then, one night while I was working the graveyard shift at an answering service, I started to have some odd tingling and a little pain, and then some itching in my right hand and arm. Within a few hours, a rash had started to appear and the pain was considerably worse. Though I was scheduled to be at my day job waiting tables, I decided to call in sick and go to the emergency room.
The doctor who examined me told me I had shingles and he asked me if I was a homosexual. It seemed pretty weird he wanted to know, but I said I was. Then he looked over the rest of my body and found a spot on the bottom of my foot and one behind my knee. He recommended I have a test for syphilis and also for HTLV-III (that's what HIV was called back then). I was really scared. I'd only heard of one person with AIDS and he wasn't even anyone I knew. I just couldn't believe that the doctor thought I needed to be tested for it, but he said since the shingles weren't confined to one place, it meant that I had a problem with my immune system. Here, all this time, friends had teased me about being so old-fashioned and not going home with guys who liked me. Most of the time I could barely even look at someone in a bar without blushing, but I was about to find out it doesn't matter how many times you have sex: It only takes one time to become infected.
I went across the hallway to have my blood drawn and while I was waiting, I remember thinking of those line from T.S. Eliot:
This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.
I asked the nurse how long it would be till I knew the results. She said she thought I'd get them in the next day or two. Then I paid my 25 dollars and went home. Within two hours I was in excruciating pain and I called the doctor to prescribe pain medicine. He called in a script for Tylenol-III (which frustratingly came in a child proof bottle I needed help opening) and I waited for the results of my test. I let all of my jobs know I couldn't work - I was contagious - and every couple of days I'd call the hospital and ask about my blood test. Finally someone said, "Oh, I think THOSE kind of tests take a couple of weeks" so I made an appointment for two weeks from the date of the test to see the doctor. When I showed up, he'd been called out for an OBGYN case so another doctor was assigned to me. I was so relieved when he said my test results were negative. I asked, "And the syphilis was negative, too, right?" He said, "That's what I was talking about. Your syphilis test is negative. Did you have another test run?"
I was so frustrated. Fortunately, a friend of mine from one of my jobs worked in the HR department of her second job and arranged (somehow - who knows how) to have me covered on her insurance with another hospital and get another blood test. When the test came back positive, the doctor called me on the phone with the news. He said I might very likely have as long as three years to live. It was quite possible, though, that I would die within a year. And that's about when everyone else started dying around me.
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