Coming Home to Die

Red Ribbon

June 2011 marks the 30th anniversary of HIV/AIDS. This is the second reflection from my experience working with HIV/AIDS, 1984-1993.

I don’t recall now how Dale and I became acquainted. Dale and his partner were active members of the gay and lesbian community in San Luis Obispo. San Francisco, Los Angeles, and New York had burgeoning gay communities, but San Luis Obsipo, on the other hand, had a closeted community.

And for good reason: the county was quite rural and red-neck. As an ordained woman, I wasn’t well-received in most church circles. I filled in for vacationing clergy, but only for the more open-minded denominations. Even then, I was the first woman any of those church-goers had ever witnessed! When I was introduced to Dale, a whole new community opened up to me! Thank God.

I called on Dale and asked if he would be willing visit with our vacationing AIDS hospital patient. I was getting concerned that he would need a place to stay for a night or two once discharged from the hospital and my studio apartment was already cramped with my two sons and me. Our patient’s partner was ready to come out from New York if necessary, but Dr. Gordon and I were hoping he’d be well enough to travel once discharged. Dale and his partner stepped in, mobilizing their friends to visit, help make travel arrangements, and give him a heartfelt send off to New York and a very bleak future.

By 1985, young men who had grown up in the county and long since gone off to San Francisco and Los Angeles were coming home. These men were professionals, in the 20s and 30s, who found freedom to be themselves in the larger cities. Now they were very sick and no longer able to work. They were coming home to die.

Families were not prepared. They weren’t prepared to care for their terminal “children”. They weren’t prepared to learn their son was gay. They also weren’t prepared for the other issues that were surfacing in their sons lives: sexual abuse by Catholic priests, alcohol and drug abuse, and scores of friends or partners who had already died. Once home, these young men were very isolated. They had no local support or friends and they were dying.

Dr. Gordon and I were suddenly thrown into managing dysfunctional family dynamics and destructive behavior patterns, while trying to manage infections and diseases not commonly seen and for which there were very limited medications. Plus, we were trying to enroll other health care providers and a mortuary to handle cremation services! Oh, and prepare a person who hadn’t even begun to think about death!

Coming home to die finally opened up conversations that had been waiting a lifetime to occur. More often than not, families were reconciled one to another and the person dying (we wouldn’t be talking about living with AIDS for a number of years yet) was being reconciled to himself. It was a very bittersweet time and we all cried and cried.

I’d like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. There aren’t a lot of details up on the website yet, but if you email me, I’ll keep you posted!

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