Throughout the thirty-one years that I have dealt with HIV/AIDS I have faced many serious challenges, but none so daunting as the one I am confronted with today. I awaken anxious and scared and when I am finally able to sleep that anxiety and fear are palpable.
I have lived in San Francisco for well over four decades, settling in what was an undesirable neighborhood, due to the cold and fog, the Outer Sunset District. I paid $750/month for a small stucco two-bedroom house a few blocks from the beach, renting from a Jewish man who had survived the horrors of the Second World War.
It wasn’t more than a few months after moving in when my world would be rocked, within a ninety-day period I would test positive for HIV and be told I would have no more than five years to live. My wife would leave me, I would become a single father, and I lost my engineering job.
I was fortunate—I still had my home thanks to a very understanding landlord.
I spent thirty years in that home. In February 2013 my landlord died, and I was subsequently notified by the landlord’s daughter that the house would be sold, and she couldn’t sell the house with me and my three dogs living there so I needed to leave.
Much had changed in those thirty years—the undesirable neighborhood wasn’t any longer and the house that I lived in, that originally cost $7,000, $200 down, $22.50/month was now, even in its decrepit condition, worth well over a half a million dollars. I was priced out of my neighborhood—hell, I was priced out of the entire city.
My health at that point was precarious at best, having spent the previous two years recovering from an illness that would cause me to lose almost fifty pounds in two months. I had been living with zero T cells and a triple-digit viral load, taking a total of forty-six pills a day and giving myself two shots of Fuzeon.
Two of the drugs in the forty-six pill combo were Paxil and morphine (200 mg of morphine four times a day.) By January of 2013 I decided it was time to switch doctors, as I wanted desperately to get off the morphine. I asked my new doctor to help in my detox from the morphine. He asked me if I was still depressed. No was my answer. Then why are you taking Paxil? he asked. Good question, I responded. I spent a month detoxing from the morphine, difficult, but I did it; the Paxil on the other hand was a detox like I never experienced and hope I never have to experience again, it was that bad.
As you can imagine I was not in the physical or mental shape required to tackle such a life-altering event as losing my rental.
My attempts at finding suitable, affordable, and safe housing were fruitless, I wrote the then-director of SFAF and heard nothing and received the same response from letters to the mayor and my district supervisor. There simply was no help and was told more than a few times that I wasn’t supposed to live this long. My bad. No one wanted me, my dogs, or my rental subsidy.
By the time June rolled around I had yet to find a place to live. I got rid of thirtyyears worth of stuff, stored the remainder at various locations throughout the Bay Area, and found a good home for one of my beloved dogs. The two remaining dogs and I moved into a car, which I parked just a few blocks from my old home.
I have never in my life been homeless—the experience was fucking humiliating to say the least. After a month and a half, a friend offered me a room in his house, which was a godsend. Unfortunately, the stress of homelessness and living on the street caused me to contract a Strep infection of my spine; my hands and feet swelled, fevers of 103, the pain—excruciating. I was hospitalized in November of 2013 and that’s where I would spend Thanksgiving, Christmas, and New Year’s, finally being discharged mid-January of 2014. The conclusion, being homeless with AIDS is a death sentence. It took me two years to recover.
Two months ago I was informed the house I’m renting a room in has been sold and the owners are moving in. I am old, battered, bruised, scared, and tired, and, although there have been changes in the ASO world, the fact remains that there just isn’t any affordable housing available and those places that are available have a waiting list a mile long. There’s a fifty and over group, and a long-term survivors’ writer’s group that help with expressing at least some of what I’m experiencing, for which I am grateful. Yet the fact remains I have to advocate for myself, which is problematic because I am desperate and scared and lack the patience and stamina needed to navigate the various services.
I’ll give you an example: my medical benefits got really screwed up earlier this year, clerical error, Medi-Cal deductible was $1,000/month and my prescription costs were astronomical. My attempts to fix the error were as fruitless as finding housing and I was told I had to either give up food stamps and get medical coverage, or eat and get no coverage. I either die from lack of medical coverage or starve to death—quite the choice. Vince Crisostomo heard of my plight and contacted a lawyer from Positive Resource Center; it took this woman one week—she did in one week what I couldn’t do in two months of repeated attempts to straighten the problem out. Without an advocate I’m lost in the labyrinth of bureaucracy. I was shunned so many times by Westside Community Services that I found the director’s name on Facebook and wrote her of my plight and frustration. I didn’t get a response from her, although I did get a call from a representative who took my info and put me on yet another waiting list.
Am I to believe having survived a disease that has killed many millions of people that my demise will be due to lack of affordable housing? Frankly, it’s unfathomable. The fear at times is paralyzing.
Michael Arnegger is an HIV long-term survivor living in San Francisco.