Friday, January 27, 2012

Issan and the founding of Maitri

What follows is an interview that I recently did with Marlin Marynick for his book about AIDS, Undisclosed: Secrets of the AIDS Epidemic.

I'm a gay man in San Francisco. I've been living here since 1974. I'm a former Jesuit--I’d been in Berkeley studying theology--and when I came out, I stayed. I did all the crazy kind of things that people do when they first come out--particularly the men of my generation who were just beginning to do the things we were really capable of in spite of all the discrimination against us. I drove a cab for a number of years, and I started a wood shop, perfect for a guy with a degree in theology, but I didn't really feel much like practicing any religion. When I met Harvey Milk, I joined the fight for gay rights. I had a partner, and we tried to build a life here in gay Mecca.

Then, all of a sudden in the mid-80’s, our friends began dying, huge numbers...first it was called gay cancer, then it was called grid...nobody really knew what it was. It was terrifying. Towards 1987-88 I felt that I had to do something, although this was also a process of me overcoming my own fears, of dealing with them. I had many friends that were diagnosed, and everybody was dealing with fear and loss and the not knowing what we were really dealing with. (For the record, I also have HIV).

In 1988 I met a gay Buddhist priest, Issan. Friends had told me that he was remarkable guy, but my first impressions were that he was actually rather ordinary, far more effeminate than any of my gay friends, and not in any way “spiritual” as I understood the word. Issan, “Tommy” Dorsey, did have an unusual path to a Zen. He had been a professional drag queen, and a heavy drug abuser, which was not terribly out of the ordinary for gay San Franciscans 40 years ago. He was also a very bright, funny, human being, and he had just started an aids hospice. (He himself died there of the disease on September 6, 1991--he’d contracted HIV from his partner, James). I was blessed to be able to be with him during the last few years of his life, and helped him create Maitri Home and Hospice for People with HIV.
I moved into the Zen center on Hartford Street to practice meditation, to get away from a relationship that was ending, and to put some perspective around all that. Very quickly after I packed my bags, my partner and I closed our furniture business, we made and sold furniture, and ended our relationship. So there I was living in this Zen center-hospice, and I started doing some general carpentry work, fixing bathrooms, getting rooms ready for the men who would live with us. It just was the next thing to do, right in front of me. This quickly lead to finding money to pay for the building materials; then more organizational stuff; and by 1990, I followed Steve Allen as executive director of the hospice. Looking back, it was something that my Jesuit training, and everything, prepared me for though I didn't have much experience with non-profits and no experience in health care.

Back then people with HIV-AIDS died quickly after being diagnosed... 3 weeks, 6 weeks, a few months, perhaps a little bit longer in rare cases. It felt like we were picking up bodies off the street. Some months 100 men died in San Francisco, in our neighborhood, the Castro. You'd walk down the street, pass someone you knew who looked pretty healthy. Then you'd see him 2 weeks later and he’d aged 40 years. Within a year or two I said to myself "Oh my god, where did my friends go." No one knew what to do, or how to behave around those infected--these were friends. Of course a lot of us were afraid of catching the disease, because no one knew how it was transmitted, although we had our suspicions, no one really knew.  No one knew if it was poppers, or kissing, or if it really was sex and drugs and rock and roll. That didn't appear on the horizon for a while because no one wanted to give those things up.  Sexual freedom was part of our emancipation, or that’s what we though. Denial was a big part of the epidemic’s horrifying spread through the community.

Issan said that the only real thing that we could do was to take care of what was in front of us, take care of life as it presented itself. He said HIV was like a guest who’d come and knocked at the door, and couldn’t be turned away. When one member of the small meditation community, JD, became so sick that his partner Pierre could no longer care for him, despite the misgivings of some in the community--Issan could be very firm, even stubborn, when he was sure of the next thing he had to do--he moved JD into the bedroom next to his. And he began looking after his immediate needs, which included martinis after evening meditation, spicy hot dogs, and cable TV. It was a very simple concept--just take care of people in the most basic way and sustain a normal life for as long as possible. And be as happy as you could--no matter what.

And then something unexpected happened, JD did not die quickly. The symptoms of the disease worsened, he could no longer walk, was bed-ridden, but when a supporter gave Maitri a motorized wheel chair, JD became a teenager with a hot rod, missing meals, staying out past curfew. He found a new boyfriend who was also disabled, and they began to spend the night together. We moved him from the second floor to the street level front room of the second building where he held court. Four or five other men would be in his room watching campy movies on VCR at all hours. He stocked his small refrigerator intended for medications with soda and beer, and in the front window a hydroponic wheatgrass farm, for health, of course. All this really tested some zennish sensibilities, and the CNA staff. But despite complaints, Issan remained firm in his support for JD. When JD returned one day from Oakland--he’d taken BART across the Bay--with an iguana, no one believed that he would actually take care of it himself. He did. In fact he smuggled his pet onto a plane when he went back to Florida to spend his last days with his mother. The story of the lizard squirming around under his shirt while JD locked himself in toilet at 30,000 feet became the stuff of legend. I think that JD’s story is also a real example of what kind of life is possible when your guests are not bound by some rigid rules for how you expect guests to behave.

Even if people couldn’t see the compassion what Issan was doing, most everyone trusted him enough to give money. Another friend of his bought the building next to our small Victorian house, and we bought back the lease. That gave us rooms for another 5 people. Within a year we had 8 beds for people with HIV-AIDS plus 6 people to take care of them, Issan, Phil Whalen a zen priest, as was Steve Allen, and his wife, Angelique, Michael Jamvold, myself, and David Bullock. We shared a life together--we meditated, had fun. We worked hard and cried.

Maitri was a ragtag operation, and we learned we would create a Buddhist hospice piece by piece. I began to spend time helping people get their paperwork arranged for the end of their life, getting everything straightened out with their partners, and their families, taking care of the kinds of things that come up towards the end of life. I asked social workers and lawyers to help and everyone I asked stepped forward.

What also started to become clear, we were charting new territory. We were the only Zen center in the United States to put meat, chicken and sausages on our vegetarian, Zen, table. People with HIV needed protein.  There were a lot of other things that broke rules, both in Zen terms, and hospice-wise. When we had to take care of getting the drugs adjusted so that people could have a fairly comfortable life, we got help from Visiting Nurses and Hospice (Steve Allen worked out a contract with them to provide a full-time nurse and certified nursing attendants using moneys already allocated for care from the city). As I started to investigate how we could get money for hospice, I discovered that for most insurance, and federal funding, people had to have a 6 month diagnosis to receive assistance and they couldn't take any drugs which would prolong life. Issan said that’s crazy because he wanted people to live and enjoy life as much as they could for as long as they could. There was a new, experimental drug called Foscarnet which prevented, or at least retarded, blindness caused by CMV retinitis. It had to be given intravenously. The nurses from hospice were not allowed to do that with hospice patients so I recruited a small group of volunteers who learned to how to do administer it.  Then several patients wanted to sign up for drug trails of the new HIV drugs that began to appear. It would probably have been prohibited in more formal hospice settings, but somehow, I convinced VNA to not report any person at Maitri who got into a drug trail.

The partner of my friend Michael who was dying called Maitiri,“the house of death” when I suggested that he move Michael in. I was pretty offended. I saw what we were doing as creating a house of life. While I was trying to figure out how to keep the cable TV from being shut off, and lamb stew on the table, there were times I thought I was running “animal house.” There was lots of humorous, funny things going on all the time. Yes, people were dying, in the 2 + years I was there 82 people died in those 8 beds, and I was with almost every one of them. I won’t deny that it tested my defences, that it was trying, and stressful work. There was always a poignancy about life at Maitri. But when death is simply part of life, it becomes more easy to sustain what we think of as normal life.

Bit by bit, we did put something together, and what we created is now the longest surviving aids hospice, “home and hospice for people with AIDS,” in the city. The morbidity rate from HIV/AIDS has gone down enormously, thank god. Only a few people actually die in the hospice now, so the current staff deals with things like drug addiction, and adherence to medical protocol for the antiviral drugs, respite care, things that Issan would have encouraged us to to do to make life as normal and happy for as long as it lasts.  What we did in the early days of the epidemic and what continues to be done now is really extraordinary.

By the time he died, I realized that Issan was a truly extraordinary man. He was far more than an extremely funny sense of humor. He’d worn a skirt, or as he used to say, "I still wear a skirt but I renounced the heels." His speech was always in entirely plain language. But he really was a Zen master. When this drag queen, substance abuser par excellence started to sit meditation with Susuki roshi, he sat down and looked at the bottoms of his feet, and said to himself, oh my god, they are dirty...and he started to clean up from drugs, and meditate.  He also discovered what was important for his own life. In official Zen, he went as high as any man can go. For me he was an absolutely extraordinary, terrific human being.\

To read more reflections about the life of Issan, see some photographs, read his dharma talks, go to my Record of Issan page..
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