43 YEARS OF “SURVIVING AND THRIVING” WITH HIV/AIDS

In honor of World AIDS Day, Les K Wright shares his first hand experience as a long-term survivor.

Today I observe my 43 years of living with HIV/AIDS.  I was 28 when I was infected. I am now 71. To say I have been “surviving and thriving” is a facile sound byte that doesn’t hint at what that actually means.

I am a member of the ‘forgotten generation” of long-term AIDS survivors, living with HIV/AIDS for 43 years. I was infected in San Francisco in 1981. At the time a mysterious “gay disease” was discovered spreading among urban gay men in New York and San Francisco. 

Down the street from my house in the Castro a hand-written noticed was taped to the window of Star Pharmacy, on the corner of Castro and 18th Streets, announcing and sending an alarm that there was a mysterious “gay disease.” This is how I learned about it.

Within two years the educated understanding was that every gay man in San Francisco was infected and every gay man would die from AIDS. We feared this would lead to the end of the gay community. We were shunned by doctors and nurses, firefighters and police, funeral directors, and others. This traumatizing stigmatizing was exacerbated by authorities labeling it “GRID” (Gay-Related immune Deficiency).

Left on our own to cope with the epidemic (medical, psychological, homelessness, and other issues), the San Francisco gay and lesbian community banded together to take care of each other. What grew out of that became known as the revolutionary San Francisco Model of AIDS Care.

I tested positive for exposure to HTLV-III virus in 1986. (Th political battle over who had first discovered the virus was making headlines at the time —the French medical researchers called it HIV and the Americans called it HTLV.)

In 1992 I was officially diagnosed with “Disabling ARC” (AIDS-Related Condition) and went on SSI permanent disability. This initial category was later reclassified as “full-blown AIDS.”

In response to us long-term survivors being forgotten, I am working on an anthology called Children of Lazarus: Voices of the “Forgotten Generation” of Long-Term AIDS Survivors. (If you would like to submit your story click here for details.)

---