Before now I was too embarrassed to talk about it in an internet forum. As if the intelligent, poignant posters, my incredible buddies in cyberspace from around the world, would ridicule me. I was already doing that to myself. In 1984 I had heard of the new virus sweeping through my happy-go-lucky community. Falling down while trying to stand up. But I did something stupid. He was so handsome, and how could this New York/San Francisco virus reach my corner by the beach with no bathhouses?The handsome guy could have been two different men. I was intentionally ignorant of the sexual meeting houses just north in L.A. A sexual free-for-all? That wasn’t me. I didn’t care about the condom, forever regretting that simple, deadly decision. I blame no one but myself.
I ignored it, couldn’t cry like my new partner. We had previously compared our old dance cards, his was longer, and mine only had a few on it, two since I first heard about GRID/AIDS, and I told him that there was no way to know who infected whom. Shock that would last for eight long years, but succeeding at work in amazing ways, touching my customers with compassion. Then a seizure in which I crushed T-3, 4, and 5. 100 T-Cells, normal being 500-1,500. Infections mounting. Christmas 1993. Holiday spirit replaced by sheer terror. My fascinating career was over. Turns out the government wouldn’t let me be homeless, instead giving me Social Security Disability for my final months, a generous gift to the hapless who wandered somewhat blindly into disease.
T-Cells dropping further still to 17. A different virus, CMV, that you’re probably positive for if you ever played in the dirt as a child. Penny made the best mud pies, a little gritty though. The Cytomegalovirus taking over in the absence of a healthy immune system. The “big cell” virus that attacked the larger cells of organs, like the eyes, gut, and brain. Going a bit blind in one eye, digestion wracked to hell. Food passing through so fast it could barely be absorbed. AIDS wasting. Darkness all around, readying my “final plans and wishes” in ‘95.
Then the new meds. came after Act Up successfully lobbied and protested about the FDA’s long approval process. Finding legs once again. Smart drugs that attacked HIV’s ingenious way of inserting its DNA into my T-Cells, (which later went up to 300!) hijacking their replicating abilities into a way to churn out more copies of itself. A life and death struggle at the molecular level. In my body. Differently shaped, pretty colored medicines going down to start their life-saving work.
I had won, or so I thought. One of the new drugs (Videx) had such bad side effects that I have a permanent case of peripheral neuropothy, and it now has a “black box” warning about portal vein hypertension and life-ending bleeding from esophageal varices, a drinkers disease for a man who did not drink, but immediate empathy for a sweet, loving alcoholic family member with the same problem, sharing war stories about the semi-annual “banding” needed to keep us from bleeding to death, almost happening to me twice, once for her. Just the tiniest amount of blood in the stomach bringing everything up, further rupturing the veins. How much more could I bleed?
I met an HIV-negative man in 2010. The sweetest guy, a rare non-drinker like myself. I didn’t think I had a chance with my gaunt countenance, my wheelchair an obvious sign of disability, his handsome, fit exterior. But we shared our deepest, secret thoughts and memories and our worry about our families, friends, and lovers past who succumbed to the heroic feeling, pain ending seduction of alcohol where we met in Alanon. “We are powerless” was all I needed to hear. Others knew the power of powerlessness, the humility and empathy it imbued. We grew together, nourished by our understanding and compassion for each other. He called me handsome. Wow. I took it in like it was true for the first time. My embarrassment for looking like an AIDS-case finally over.
Despite his negative status, he died in August 2016 in my arms of a freakishly sudden heart attack after we said I love yous as he realized something was terribly wrong, as if the heightened connection between us would fix it all, maybe it did. His fitness and healthy diet notwithstanding he passed on, the trailhead of true peace for his troubled brain. He was on a powerful drug for six years that calmed his ever more scrambling mind from a traumatic brain injury when he was a teenager, an unintended drop down two stories onto a hard floor. That drug with its “sudden death” cardiovascular side effect. Surely we could minimize the risk with lots of veggies and heart-healthy omegas, but in vain. The side-effect won. Maybe the good food I cooked for him helped him last longer. We had a deal, I’d cook and he’d do the dishes. He scarfed it down like the orange-dijon sauce I concocted for the salmon was the best thing he ever ate. “Was dinner OK?” was always met with a display of his empty plate. The sweetness.
I’ve just recently peered out of my year long+ mourning and tears, writing like a madman, getting it all out, feeling the inspiration of my dearly deceased partner who wrote for a living, feeling happy again. His thousands of pages of journals he welcomed me to read. A path not unlike my own, full of trials to overcome. The incredible education of life.
The nurse becoming the nun in the video with Harry Dean Stanton and Bernie Taupin, whispering an unknown message into the ear of a dead woman, mysteriously transforming into Mr. Taupin who knew the road ahead. I got the message mom (below - I can’t stop sharing her talent), her up there with my sweetie, George Michael, Freddie Mercury, and Mozart all enthusiastically sharing the gifts of expression, the hearts they touched, animated by love.
Despite the successes, I can see the writing on the wall. T-Cells falling again. Infections popping up like they no longer have anything to fear. Losing weight when I already felt almost weightless. Diarrhea for over a decade. Sight failing at fifty-five. HIV positivity for thirty-three years. A “long term survivor” on his way out. I may still have years. I am optimistic from the spirit I see in those who are surviving worse challenges, totally blind from the disease, but not stumbling.
Edit 3(?) I tried recently to add sweetened food into my diet to counteract the latest gradual AIDS wasting. I never had a sweet tooth; sweets were rare in my youth, which didn't seem too uncommon. It was the sixties and seventies. I couldn't get enough when I got it home, it seemed to be on many isles at the store. I remembered what I knew about addiction. I could also tell it changed my thinking, and not too badly. On it I gained three pounds in three months. The negatives outweighed the benefits. Math is truth.
Gifts with the fear. Meeting angels I wouldn’t have met any other way, Louise Hay and her “hayrides” for the affected at the park in West Hollywood, my counselor who has worked with and volunteered for us sometimes brave, sometimes fearful souls, encouraging me to Alanon where I met the accepting love of my life, learning that it all is a gift if you look past the darkness. Love for all, even myself. Strength that I never knew I had.
Words about us:
https://docs.google.com/document/d/1rBvCdcTDj5B-mVnMNsW6-1ErT-Y9QCXJPwYhA829Xn8/edit?usp=sharing
Patricia's (my mom's) video about life, death, the game, and the messages (she's the nurse and the nun):
The most fitting song I can imagine:
I ignored it, couldn’t cry like my new partner. We had previously compared our old dance cards, his was longer, and mine only had a few on it, two since I first heard about GRID/AIDS, and I told him that there was no way to know who infected whom. Shock that would last for eight long years, but succeeding at work in amazing ways, touching my customers with compassion. Then a seizure in which I crushed T-3, 4, and 5. 100 T-Cells, normal being 500-1,500. Infections mounting. Christmas 1993. Holiday spirit replaced by sheer terror. My fascinating career was over. Turns out the government wouldn’t let me be homeless, instead giving me Social Security Disability for my final months, a generous gift to the hapless who wandered somewhat blindly into disease.
T-Cells dropping further still to 17. A different virus, CMV, that you’re probably positive for if you ever played in the dirt as a child. Penny made the best mud pies, a little gritty though. The Cytomegalovirus taking over in the absence of a healthy immune system. The “big cell” virus that attacked the larger cells of organs, like the eyes, gut, and brain. Going a bit blind in one eye, digestion wracked to hell. Food passing through so fast it could barely be absorbed. AIDS wasting. Darkness all around, readying my “final plans and wishes” in ‘95.
Then the new meds. came after Act Up successfully lobbied and protested about the FDA’s long approval process. Finding legs once again. Smart drugs that attacked HIV’s ingenious way of inserting its DNA into my T-Cells, (which later went up to 300!) hijacking their replicating abilities into a way to churn out more copies of itself. A life and death struggle at the molecular level. In my body. Differently shaped, pretty colored medicines going down to start their life-saving work.
I had won, or so I thought. One of the new drugs (Videx) had such bad side effects that I have a permanent case of peripheral neuropothy, and it now has a “black box” warning about portal vein hypertension and life-ending bleeding from esophageal varices, a drinkers disease for a man who did not drink, but immediate empathy for a sweet, loving alcoholic family member with the same problem, sharing war stories about the semi-annual “banding” needed to keep us from bleeding to death, almost happening to me twice, once for her. Just the tiniest amount of blood in the stomach bringing everything up, further rupturing the veins. How much more could I bleed?
I met an HIV-negative man in 2010. The sweetest guy, a rare non-drinker like myself. I didn’t think I had a chance with my gaunt countenance, my wheelchair an obvious sign of disability, his handsome, fit exterior. But we shared our deepest, secret thoughts and memories and our worry about our families, friends, and lovers past who succumbed to the heroic feeling, pain ending seduction of alcohol where we met in Alanon. “We are powerless” was all I needed to hear. Others knew the power of powerlessness, the humility and empathy it imbued. We grew together, nourished by our understanding and compassion for each other. He called me handsome. Wow. I took it in like it was true for the first time. My embarrassment for looking like an AIDS-case finally over.
Despite his negative status, he died in August 2016 in my arms of a freakishly sudden heart attack after we said I love yous as he realized something was terribly wrong, as if the heightened connection between us would fix it all, maybe it did. His fitness and healthy diet notwithstanding he passed on, the trailhead of true peace for his troubled brain. He was on a powerful drug for six years that calmed his ever more scrambling mind from a traumatic brain injury when he was a teenager, an unintended drop down two stories onto a hard floor. That drug with its “sudden death” cardiovascular side effect. Surely we could minimize the risk with lots of veggies and heart-healthy omegas, but in vain. The side-effect won. Maybe the good food I cooked for him helped him last longer. We had a deal, I’d cook and he’d do the dishes. He scarfed it down like the orange-dijon sauce I concocted for the salmon was the best thing he ever ate. “Was dinner OK?” was always met with a display of his empty plate. The sweetness.
I’ve just recently peered out of my year long+ mourning and tears, writing like a madman, getting it all out, feeling the inspiration of my dearly deceased partner who wrote for a living, feeling happy again. His thousands of pages of journals he welcomed me to read. A path not unlike my own, full of trials to overcome. The incredible education of life.
The nurse becoming the nun in the video with Harry Dean Stanton and Bernie Taupin, whispering an unknown message into the ear of a dead woman, mysteriously transforming into Mr. Taupin who knew the road ahead. I got the message mom (below - I can’t stop sharing her talent), her up there with my sweetie, George Michael, Freddie Mercury, and Mozart all enthusiastically sharing the gifts of expression, the hearts they touched, animated by love.
Despite the successes, I can see the writing on the wall. T-Cells falling again. Infections popping up like they no longer have anything to fear. Losing weight when I already felt almost weightless. Diarrhea for over a decade. Sight failing at fifty-five. HIV positivity for thirty-three years. A “long term survivor” on his way out. I may still have years. I am optimistic from the spirit I see in those who are surviving worse challenges, totally blind from the disease, but not stumbling.
Edit 3(?) I tried recently to add sweetened food into my diet to counteract the latest gradual AIDS wasting. I never had a sweet tooth; sweets were rare in my youth, which didn't seem too uncommon. It was the sixties and seventies. I couldn't get enough when I got it home, it seemed to be on many isles at the store. I remembered what I knew about addiction. I could also tell it changed my thinking, and not too badly. On it I gained three pounds in three months. The negatives outweighed the benefits. Math is truth.
Gifts with the fear. Meeting angels I wouldn’t have met any other way, Louise Hay and her “hayrides” for the affected at the park in West Hollywood, my counselor who has worked with and volunteered for us sometimes brave, sometimes fearful souls, encouraging me to Alanon where I met the accepting love of my life, learning that it all is a gift if you look past the darkness. Love for all, even myself. Strength that I never knew I had.
Words about us:
https://docs.google.com/document/d/1rBvCdcTDj5B-mVnMNsW6-1ErT-Y9QCXJPwYhA829Xn8/edit?usp=sharing
Patricia's (my mom's) video about life, death, the game, and the messages (she's the nurse and the nun):
The most fitting song I can imagine:
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