World AIDS Day, December 1, 2012. I remember...

Excerpt from article by Charles Karel Bouley wrote:

Read the whole article here

...I remember the first time an ambulance wouldn't take a friend to the ER because of his symptoms. I remember the anger, the outrage, the sense of abandonment.

I remember the protests: ACT UP, the Sisters of Perpetual Indulgence and Luke Sissyfag showing up everywhere Reagan went to make him acknowledge the epidemic.

I remember the fear of sex.

I remember the fights over closing bathhouses.

I remember the first AIDS drug AZT and the crippling side effects that it had on so many.

I remember being closed out of hospital rooms by "real family." You want to know the source of the marriage equality movement? It is AIDS. So many lovers had homes taken, lives destroyed. So many had to wait outside in the hospital lobby as their lovers, their partners lay dying, because family swept in and called the shots, family that didn't approve.

I remember how on weekends San Francisco's Castro would become a garage-sale city, with people selling the belongings of dead loved ones.

I remember Lorenzo, my dear, sweet best friend Lorenzo Braxton, and the night I watched him take the oxygen mask off his face, knowing that he would slip into unconsciousness and die.

I remember the parties where friends would say goodbye and then go upstairs to die at the hands of a group of true friends, none knowing who it was who did what, really, each being careful not to break any law.

I remember trying desperately to find funeral homes that would take my friends' bodies, with so many turning away the dead. That's right: Funeral homes refused bodies because of how they'd died. I remember the pain and the hatred. I remember all of it.

I remember my friend John returning to his home after the devastating loss of his partner to Pneumocystis pneumonia (which is preventable now), only to find the locks changed. The police laughed at him, told him to get a lawyer and drove away....

I remember the AIDS crisis, too.

I remember the hate, the bigotry, the rampant homophobia and hate crimes.

I remember sitting with my friend Beaux, waiting for the positive AIDS test results.

I remember my parents reacting with fear when I came home and told them that I had gone with Beaux, and had hugged him and cried with him when he got the results. People were afraid of hugging, for heaven's sake. That's how scary AIDS was.

I remember watching Beaux slowly waste away, becoming a skeleton wrapped in skin. He always took such pride in his appearance, and by the end, he wouldn't look in the mirror.

I remember being unable to visit Beaux in his last few days, because I was out of town. He died alone, so many friends too afraid of AIDS to go near him. I will always regret going on that trip.

As the author of the article says, AIDS is still here, and we owe it to our kids to make them aware of how very horrible this disease can be, and how to protect themselves against it. We don't have to make them afraid, like we were. We know what AIDS is now, and how to prevent it. If we educate our kids, they don't have to be afraid - just smart.

December 1st is World AIDS Day. I desperately hope that, during my lifetime, AIDS will become obsolete.

Oy, 2012 already?

I have an HIV+ parent.

I remember getting "the talk" when I was in... second grade, I think it was. Dx was a few years earlier.

I remember the whole Ryan White thing, and wondering why it was such a big deal to everyone. Toilet seats? Really? Were otherwise sensible adults really that dumb?

I remember AZT.

I remember hospital-grade bloodborne pathogen handling being business as usual in our house.

I remember our family doctor as a kid, throughout the 90s, just "happened" to be board-certified in immunology.

I remember family vacations were limited to things with refrigeration options, back when all retroviral meds needed cold storage.

I remember chairing the HIV/AIDS peer educator group in high school because the advisor thought it would be really impactful to have someone with "personal experience".

I remember standing in the kitchen with the folks, making up cute nicknames for drugs. Lamb Voodoo, (lamivudine), Zombie Voodoo (zidovudine), abracadabra (abacavir).

I remember being enraged upon learning about mandated "abstinence-only" education in other states.

I remember rampant misinformation even in college, and gently setting people straight whenever I heard some awful, fearful piece of hearsay.

I remember being thankful for cushy federal health insurance bearing the brunt of the medication expense. $15,000-20,000 a year without it makes long-term prospects a factor of your economic class. If you go off a drug for any reason, even financial, and restart it later, there's no guarantee it will work for you the second time around. Don't f*ck it up.

I remember going out to dinner with my parents to celebrate the five-year anniversary of zero measurable viral load.

I remember the doctor's congratulations on being something of a medical miracle, upon passing the 20-year mark of HIV diagnosis without developing full-blown AIDS, which was a <1% probability at the time (2007).

I remember doing a surreptitious weight-status scan whenever we hadn't seen each other in a while.

I remember more than one stressed-out phone call when they were worried about the possibility their medical file would reach their employer, or their union, even though that's quite against the law.

I remember hitting the vaccine studies at Fred Hutch, because I could, and too many HIV-negative people don't because they think you can get AIDS from them (you can't, it's not that kind of vaccine).

I remember considering writing about all this more extensively, more personally, and choosing not to because so much stigma and discrimination still exists, and not wanting to leave a time bomb lying about somewhere. The internet is forever, after all, and until my parents are past retirement anything I write that could lead back to them is still a possible threat to their employment.

I remember gritting my teeth and choosing to take the high road when my in-laws dug all this up and used it to declare me and my entire family horrible people.

I remember one of my major factors in leaving Miami and moving back to Seattle was that luck so far has been so good, and you never know when it might go bad, and 3500 miles is a very long way when things become hard.

I remember mild, good-natured disbelief at a sixtieth birthday.

I remember shaking my head at people who consider AIDS "pretty much over" because "it doesn't just kill you anymore".

I remember rolling my eyes at red iPods, red wristbands, red Prada, but still being ok with it because at least it means people are having a sliver of the conversation.

I remember resenting having to vague all this up, before I was able to just let that part go. I'm comfortable with the consequences of print, and someday they will be mine alone instead of unfairly spread through my family.

I remember 25th-anniversary season, which is pretty amazing.


Another year, another December 1st. Eventually HIV/AIDS will become obsolete, but not during my lifetime... at least not personally. Hopefully for other people it will be.

While I do not have much personal experience, I can at least share this:

I remember when my best friend in high school told me that God sent AIDS to kill the homosexuals. How I tried to set him straight.

That kind of bigotry hurts even now when I think about it.

I remember what others have said. And I remember the first friend I lost to AIDS. Not much was known at that time and I remember being determined to go and see him. He finally let me in but would not let me close to him. He was worried I would catch TB. And I remember saying "Goodbye" for the first time.
I remember being a healthcare professional and how the people I worked with wouldn't go near the HIV+ or AIDS patients if they could avoid it. I remember how grateful these same patients were that I was willing to sit next to them, help them and treat them like human beings.

I remember being driven to the doctor for my first HIV test because I'd just come out and my mom equated being gay with having HIV.

I remember being ignorant enough to avoid any contact with the few men brave enough to state they were HIV+ in dating profiles 12 years ago.

I remember being terrified the first time I had sex with someone that I knew was HIV+ even though there was no risk of transmission from what we did.

I remember testing HIV+ myself years later. My first thought went back to that moment I came out and how I was now a living example of the basis of my parent's initial prejudice.

I remember countless rejections from guys based solely on my HIV status. I still prefer to meet new people online first where initial disclosure is normally handled by a check box.

I remember going home 10 years after coming out (5 years after testing HIV+) and telling my parents. Mom and I stayed up until early morning talking - talking about my coming out, talking about HIV, talking about life.

I remember getting a phone call from Mom 2 months later to ask me if I was taking vitamins. She asked because she read on it was recommended. When I said that I hadn't been, she took the liberty of ordering me my first 3 months supply. I cried.

I remember the first time a stranger contacted me because he was waiting on results and was scared they would come back HIV+. He was too afraid to discuss his fears with friends because of how they might react.

I can't end this post without sharing my own recent scare and thanking the members of this community that were there to offer support and help. I just changed jobs in early October. I had enough medication to last me until November when the new company's coverage would kick in. I made a mistake in my benefit elections with the new job that meant my responsibility for each month of meds would be ~$970. I immediately corrected that mistake for next year's elections, but had no idea how I was going to get medication for November and December until those changes take effect. I logged into IRC feeling pretty helpless. The GWJ IRC crew was quick to hit the Googles and start looking for solutions. Several of them offered financial help. Edwin offered to road trip to Canada to pick up a prescription filled there since Canada has access to the generic form of my medication. I never expected anything more than a place to vent for a bit and you surprised me. Switchbreak, Edwin, clover, Yellek, Zane... I can't thank any of you enough for how you all responded. I neglected to grab my chat log from that night before it was gone so I know there's a name or two missing. If I missed you, thank you too.

I remember being in 4th or 5th grade when GRIDS (Gay-Related Immune Deficiency Syndrome... wonderful f'ing name, that) came on the scene.

I remember my parents being deathly concerned that my dad would end up like Ryan White due to his hemophilia.

I remember the bullies in 7th grade deciding to pass the rumor around that I had AIDS, and how that led my teachers to ignore me when I was being beaten up.

I remember Freddy Mercury dying a day after letting the world know he had AIDS, and knowing that something major had happened as a result.

I remember part of my coming out was realizing that I'd either have to give up donating my O- blood, or I'd have to never have sex, and how much that absolutely blew. (See hemophiliac father above)

I remember my first date with an HIV+ gentleman, and how absolutely stupid I was in how I acted around him. I wish I could go back and slap the idiocy out of me.

I remember singing with my first gay men's chorus in Dallas, and seeing just how many members over the years we'd lost by the sea of poinsettias we'd set out for the winter show.

I remember losing my friend Paul to HIV, and how much I hated him for making some absolutely idiotic choices that led to his passing, because all I wanted was to be able to talk with him one more time.

Ugh... I've had it pretty mild compared to some on here, though. Much love to you who are dealing with this on a much more personal basis.

Lost my closest uncle 13 years ago to AIDS. RIP, Charlie, you are not forgotten.

It's after midnight now, but still bumping this for great justice.