I spent yesterday morning walking the AIDS Walk in Chicago. It was a wonderful morning to walk the lakefront with thousands of other like-minded souls out there giving their time and money to a cause about which they feel strongly. I bear in mind that there are no such things as coincidences when I can see so clearly, yesterday and every other day, how stepping off the trajectory of being a mental health therapist to step into the trajectory of working in HIV prevention brought me to this amazing place where I work with LGBT kids.
In the early 90s, I served as the program manager for housing programs in upstate NY for people living with HIV and AIDS. While hardly new, the disease was still impacting significantly on the gay men’s community and beginning its double duty of impacting heavily on communities of color. The cocktail drugs were just getting positioned to hit the market. The guys in the house got sick. Very sick. Very quickly.
There was nothing in my training to become a therapist that prepared me for what we did in that program. I was accustomed to people confronting inner demons around abuse, sexual assault, divorcing parents, and other issues of loss. I was accustomed to sitting quietly while people blotted tears and tried to put puzzle pieces together. But nothing got me ready for running a residential program with men who were so sick, some who were actively dying. This was not about confronting inner demons and healing. This was about kangaroo feeding pumps for guys who could no longer swallow. It was about bringing food to people who couldn’t get out of bed because of the neuropathy in their feet. It was about following naked men around the house with a towel, asking them not to urinate down the heat registers, offering to cover them, to afford them some dignity and some privacy, when AIDS dementia was eating holes in their brains and it no longer occurred to them that they weren’t wearing clothes. It was about physically picking up a body experiencing wasting syndrome out of a wheelchair so someone could sit on couch cushions and be in somewhat less agony. It was about cleaning bathrooms and wiping bloody, fecal covered handprints off the walls when bodies eroded from the inside out. It was about bleach and AZT and tears in the office when no one was looking.
I learned a lot in that job. I learned how to respectfully navigate a conversation with someone who was actively considering physician assisted suicide. I learned about race relations when one of the guys who greeted me at the door with coffee every morning and would sit with me in the office to tell me about his evening eventually told me that he thought of me as an honorary black woman. And when he grew sicker, I learned about joy when I would watch the Oh Happy Day scene from Sister Act 2 with him over and over again when he could no longer walk and his days were spent on the couch in the living room. It was the only thing that made him smile. He was beautiful when he smiled. I learned how to sit death watch with men who had no families, who were utterly alone in the world. And I learned that our grief, as a staff team, was as real as any family’s when we went to memorial service after memorial service and were forced to lay some of those men to rest in Potter’s Field because no one could afford to bury them.
It was a difficult job to leave, even when it was clear to me that I needed to go. I wrestled with the option to move to the Midwest to take a job running an agency for LGBT kids. Could I really let go and move away?
“What a wonderful way to come full circle,” one of my friends said over dinner. “Instead of helping people die with dignity, you will be able to help people live celebrating who they are.”
I like to think that I did that a little bit too, for the NY guys. For some of them, moments of acceptance and respect had come few and far between. Living that with them for several years…seeing it so clearly when they were laid to rest alone with only my staff team and their medical providers there to say goodbye was the perfect springboard to create a whole new agency where that was always the underlying principle.
I believe this—there are no coincidences.
HIV