Thirty years as a long-term survivor makes life’s ups and downs easier to live with than for my friends without HIV snaking through their veins and arteries.
Don’t misunderstand. My problems are minor compared to many, but over the last five years the challenges have been adding up. Living with HIV grants me no room to complain about getting older when that only other option – you know the one no one thinks will happen to them, the worm food, ashes to ashes dust to dust, your time has expired one – is so much worse.
HIV has also given me another gift. The ability to clearly accept my foibles with more grace than the self-loathing part of my brain would otherwise allow. The list is long. I didn’t save money when I was making it. I should have realized going freelance was a risk, wish I never bought that home, should have never let him go – those pitfalls and more evaporate far more easily given the simple yet remarkable fact that even if I don’t wake up every day celebrating life, I am alive, alive and very, very well.
My diagnosis preceded protease and my life expectancy, at least according to the conventional wisdom of the late 1980’s, was ten years, maybe fifteen if I got lucky. I did get lucky and what might be a little bit pf smarts helped too.
I chose not to take any drugs for years. When I started treatment in the latter half of the 1990’s luck was on my side. AZT had faded to the b-list. While it turns out my early refusal to take any meds kept me healthy, it certainly could have had the opposite effect, led to my death if AZT wasn’t so toxic or I did more drugs, got fucked more often, didn’t hate poppers, found an acupuncturist, took vitamins or who knows what.
Yet somehow I never got sick, avoided any opportunistic infections and these days it seems that any risk for an early demise stems more from my iPhone rather than the thirty year long civil war raging in my blood. Of course it’s not likely that even my extremely non-linear brain – okay maybe I’m just dizzy – ends up getting me crushed by a bus while absent-mindedly texting crossing the street, but you get the point, right.
Call after yoga. Lets watch Game of Thrones. That midget is hot. Or is he a dwarf?
Nonetheless the thought of life’s chrome bumper crushing me into a schmaltzy blend of matzoh meal and stew meat is always somewhere on my mind. My infection is a daily reminder of life’s whimsical cruelty and joyous abandon (that is for those of us who are lucky to have life’s basics), it’s dizzying randomness that in retrospect often makes choices made and roads not taken seem as essential and important as that ant hill you accidentally stepped on last time you had a picnic.
Ten years ago I was bored, left a well-paying job with people I liked because I gave up thinking that I had to play small, limit my stress or AIDS would kill me. I went freelance, moved east, opened a creatively successful but financial dreadful art galley in the NYC weekender town of Milford, Pennsylvania and bought a shabby but beautifully untouched 1920 Sears bungalow in blue collar Matamoras, the little town next door.
It was 2006 and the house, 80 miles from Manhattan, was the last area close to NYC that wasn’t expensive. One block from the Delaware River and a ten-minute walk from the train station, it was a steal. I financed the $165,000 purchase with a 100% mortgage. But who cared! It was appraised at $50,000 more than the purchase price, plus I was told that once the high-speed train was built from NYC to Scranton, it was sure to appreciate. Too bad I didn’t appreciate the fact the high-speed train to Scranton was the mass transit equivalent of |the check is in the mail" or "I won’t come in your mouth". And then came the recession.
By 2007 a lot had changed. My long distance relationship with my partner of five years went Adios. I was fired from my freelance job after submitting what I was told was a horrible report on the powdered non-dairy creamer market (yes Cremora, et al). Could anyone really write a good report on that subject?
The gallery was shuttered, the recession shrank my 401k by 90% and my little house on the side of the river that never flooded was financially deeper under water than the lost city of Atlantis. Glug Glug. I’d also lost 30 pounds due to a stress induced bout of ulcerative colitis. My HMO was back in SF and I couldn’t afford to pay a specialist out of pocket.
Not long after I gave the house back to the bank, I moved up north to live with my Mom who was recently diagnosed with lung cancer At least the folks who bought it, for all of $45,000 were going to make it their home. I was thrilled it wasn’t bought by a shark investor.
After Mom died in 2010 I moved back to San Francisco. Taking care of her, with my siblings help, was the hardest and probably the greatest thing I will ever do. It taught me what it must be like to be a parent. What being selfless really means. And it also broke my heart. That surprised me. After all, she was in her 80’s. I’d lost friends from AIDS who hadn’t lived to 30. But I always was a momma’s boy.
I stayed with a friend after moving back West while looking for a place of my own. The foreclosure was an issue but then luck intervened. A couple I know manage a building. The landlords were old school, didn’t want to max out their income, just have good and reliable tenants. I’ve been here ever since in an apartment that’s both a respite and a place that in today’s crazy San Francisco could easily rent for three times what I pay.
Some freelance work returned for a while. When it disappeared I started catering, grateful for the work even though most companies paid the same hourly wage I earned fifteen years ago, the last time I passed hors d’oeurves and served cocktails to the elite. C’est la vie.
As regular readers know, these days I drive a pedicab. Hauling tourists and locals alike throughout San Francisco and am grateful to be strong enough to do it, to work with great people and earn a good wage, at least most of the time.
I’m my own boss, set my own schedule and while it sometimes leaves my body obliterated, other times the job provides its own special high, a combination of endorphins, adrenaline, a wad of dollar bills and a camaraderie that is hard to describe without offending veterans of war.
What’s more, this winter and spring I trained as a river guide with Healing Waters, an amazing group that takes people living with HIV on raft trips. I was frightened at first, not scared of anything in particular. I didn’t think I’d drown, or kill somebody else. I was petrified of being miserable, embarrassed, upset, ill-suited, before discovering, like others who have spent time on a river, that. My fears on the river not only echoed but mimicked my fears in life.
A month after finishing the training I ran into an acquaintance on the express bus heading to work. I hadn’t seen Craig for a few years. Catching up I told him about my ups and downs and my work as a pedicab driver. He knew my previous work and told me he could get me a job as an analyst. I told him I’d send him a resume and set up a time to talk.
Yet weeks went by and I never followed up. The pay would be better, the work less rigorous and with benefits to boot. My procrastination haunted me. Shouldn’t I be thrilled?
Then one day it all made sense. Sitting in an office, staring at spreadsheets would kill me just as fast as a bus in the crosswalk. My body would survive but my spirit would be crushed. That, like rafting on a river. I was up for a life with risks and the rewards that come with them. And yes if I’m living under a box under the Bay Bridge one day you can bring me some food and remind me what I wrote. Though I don’t think that’s likely to happen; even if it is I’m happy to be living for the moment, me, my 425 t-cells, a great apartment and a job that kicks my ass every day.
Let's have some fun
You only live but once
And when you're dead you're done
So let the good times roll,
I said let the good times roll,
I don't care if you're young or old,
You oughtta get together and let the good times roll