Issan Dorsey and Some Undisclosed Secrets of the AIDS Epidemic

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

1/27/2012

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, but 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 the fear, the loss and the not-knowing what we were really dealing with.

In 1988 I met a gay Buddhist priest, Issan Dorsey. 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 at the Hospice of the disease on September 6, 1990—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 had first 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 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 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 wheelchair, 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 in 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. We learned, and 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 how to 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 enrolled in a drug trial.

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 were 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 defenses, 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 easier 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 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 had 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. And he really was a Zen master. When this drag queen, substance abuser par excellence, started to sit in meditation with Susuki Roshi, he sat down and looked at the bottom 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.

Maitri Hospice, Ken Ireland, an Interview with Morgan Zo Callahan

8/12/2014

This is a draft of a chapter from a forthcoming book: A Thousand Arms: A Guidebook for Buddhist Leaders, edited by Danny Fisher and Nathan Michon.

I met Ken Ireland in 2002 after sitting in a Zen meditation group he led at the YMCA in San Francisco’s Tenderloin. He invited me to visit Maitri (Sanskrit for “compassionate friendship”), a hospice for people with AIDS in San Francisco. (www.maitrisf.org). In 1987 Maitri was founded in San Francisco’s Castro district by Issan Dorsey, a Zen priest, and several friends, among them Steve Allen and David Sunseri. “The Castro was a place for the gay revolution with its arts, its parties, its style and its joie de vivre, and Issan was part of these happenings. Then, in the early 1980s, AIDS started to appear and, at first, no one knew what to make of it.” (John Tarrant, Bring Me the Rhinoceros, p.77)  Issan Dorsey had been ordained a Zen priest in 1975. By 1980, he was part of an informal group of gay Buddhists, and was invited to become the head teacher at the Hartford Street Zen Center in the Castro. Issan was appointed abbot in 1989, and his teacher, Richard Baker Roshi named him a lineage holder: he became Issan Roshi. In 1987 Issan invited a homeless student dying of AIDS into the Zen center, and Maitri was born. Issan himself died from AIDS in 1990. (Cf. Street Zen: The Life and Work of Issan Dorsey by David Schneider)

I was impressed that Maitri was a warm, “at home” environment where both caregiver and patient deeply listened to each other. The ample kitchen had a signed, framed photo of Elizabeth Taylor who had visited, and encouraged the residents. Golden light danced on the fresh green plants in the hallways and communal areas. I was reminded of Camus: “The great courage is still to gaze squarely at the light as it is at death.” Maitri is the first Buddhist residential hospice in the U.S. Over more than 20 years Maitri has been the final home for more than 900 people with AIDS. This is from Maitri’s mission statement: “We strive to provide the type of care that each of us would like to receive at the end of our lives—care that is dignified, non-judgmental, and unconditional. We hold dear the principle that each resident has the right to determine the degree of choice and awareness with which to experience life and death.”

Issan and his friends, Ken among them, didn’t set out to found a Buddhist Hospice. Rather he was creating a way to respond to the deadly epidemic that was ravaging his community. He was also creating a place to practice with his own death fast approaching. The result was Maitri.

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Ken Ireland has practiced Buddhism for more than four decades, first with Master C.M. Chen, then Issan Dorsey Roshi and Philip Zenshin Whalen at HSZC. In 1994 he began koan practice with Robert Aitken, and continued with John Tarrant and David Weinstein. Ken was Maitri’s executive director from 1989 through 1993. He and his partner currently spend half the year in northern India with the community gathered around H.H. the Dalai Lama.

I first interviewed Ken more than 20 years ago. I have allowed him to let his words reflect how that experience has remained with him and changed him over the years.

Morgan Zo Callahan: Wonderful talking with you. Ken, how do you relate with someone who's dying?

Ken Ireland: The short answer is “as normally as possible.” But right away as soon as I began to live with people who had a grave diagnosis and who were very close to death, I noticed that their world, and by extension mine, was quite different. It is both slower and much more immediate. I saw theorizing fall away--intellectual considerations like “What's going to happen after death? Am I going to be around?” Conversations got real and something else came forward. I heard requests such as “I want to have my relationship with my family straightened out before I die. I want to make peace with my ex before I die. I want to die on my own terms.” Somehow, even when they seemed impossible, all of us who were part of Maitri tried to fulfill those requests. What we crafted was far from perfect, but life and living life to the end changed on its own accord.

MZC: Apart from the interpersonal relationships, how do you respond to the inevitable natural laws of the process of dying? How do you stay focused and mindful without expectations about how it is all supposed to be?

KI: As hard as we, in cahoots with our medical professionals, try to fight nature and stave off death, nature always wins. All I can do is try to stay present with that process. The body begins to shut down in its own way; physiological, mental, and psychological changes move into place and take over. We're also at the mercy of those processes. We may try to defend ourselves. We experience a variety of natural human reactions in the face of uncertainty, fear, grief, anxiety, but we have no real control. We will eventually have to give up that kind of control whether we want to or not. 

What I’ve seen over and over is that our normal reaction to postpone the inevitable proves useless. There’s no way out. There’s no tomorrow. I can only take care of my own mental state--an iffy job at best--but I just say to myself, okay, I'm with this particular person at this very moment. I've decided to be here. I've committed myself to be of service, to alleviate the pain, to ease the transition.

MZC: In what ways is your work a natural expression of your Buddhist practice?

KI:  I can’t lie and pretend that it was all hunky dory. Living through the AIDS epidemic, being with so many people, mostly gay men who were my age or younger, was extremely painful. From the point of view of my own cherished ideas about how things should be, it was an impossible task. But on the other hand, in terms of training, in terms of deepening my own meditation, and in terms of personal rewards, it was, and is, great practice.  

MZC: How were your teachers helpful in preparing you to engage hospice work?

KI: When I met Yogi Chen in Berkeley in the early 70’s, he introduced me to the meditation on impermanence and the suffering arising from clinging. In Tibet he’d lived for three years in the charnel grounds where dead bodies were brought to have vultures strip the flesh from their bones before they were gathered up. Very specially, highly trained practitioners undertook this practice. When I first became involved at Maitri, partially I’m sure to assure myself that I was not entirely crazy, I tried to tell myself that we were trying to adapt this practice for our times. (There’s always a need for practice manuals, I suppose, both as a record of the experience of our ancestors and a kind of reassurance that we’re on the right track.) But in time I gave that up, and realized that we were just responding to the circumstances of our lives in way that made sense and arose from our own practice.  I learned from Issan and the many people we took care of. They taught me to relate to humans in any circumstance with respect and love, getting out of the way as much as possible. Over the years I’ve noticed that the experience changed something in me in terms of my relationship to people, my own life, my growing older, the physical breakdowns of my body. It's not just acceptance, and certainly not resignation. It’s more like a transformation, a noticeable change in the air we breathe.

MZC: So meditations on impermanence and encounters in hospice have changed the way you live your life?

KI: I hope so. I am definitely not the same man who moved into Maitri and cared for more than 80 people who died.  I have the same questions that I had when I was a Jesuit: What are our lives about? What do we want to make our lives about? What do we want to do with our lives in the time that we have? How can I do something that's of value? But for me this is where my Buddhist practice comes in: I'm going to do something that aims to benefit all beings because I'm not alone in the universe. If I consider how I can really take care of a person in the way in which he or she would like while at the same time taking care of myself, the world becomes different. At least that was my experience. When the point is to be of service to somebody when they're at the end of their lives, then the question becomes something like, instead of avoiding the end of life, how does life become full and complete from beginning to end? The whole process is alive and well; it breathes and pulsates, as we breathe from beginning to end. 

MZC: One night I received a call at one o’clock in the morning; it was from a member of our school board who very desperately related to me that a Japanese gentleman, a devoted Buddhist, was dying; the family wanted to take the man off life support. I was asked to call the Rosemead Buddhist Monastery and come with a monk to the hospital.  I said, my gosh, it's one o’clock in the morning. But I said I'd do it. So I called the monastery; the monks were very upset at first. But it ended up that three monks happily went to the bedside, and chanted. “We transfer the effects of the good that we’ve done in our lives for whatever journey this dying person is going on.”

KI: That's what we do. The monks got out of bed to be of service to the family and dying person.  They sat with them, and chanted, performing the rituals of the end of life. They were present with him when all this was going on. It's a wonderful practice. 

Remembering my Dad, Kenneth Ireland, Sr.

Kenneth Lawrence Ireland, Sr.

Aug. 8, 1913 - May 20, 2014

My Father was a remarkable man, and he lived a long and truly blessed life. When he died on May 20th, he was almost a hundred and one years old, and I might have entirely missed knowing and appreciating him.

I have no idea where to begin, so many stories about my Dad’s intelligence, his impeccable memory, his endless curiosity and quick wit. His golfing buddies will testify how much he loved the sport and bridge partners will swear that he remembered every card played even when he was more than 100 years old. People will tell stories about his work ethic, his writing and stamp collecting. He was devoted to his family, our mother Lee, her sister Judy, his Dad, his brothers, our Uncle Donny and Rich, Uncle Chunk, his wife Freddy, and Bill, Don’s partner, his seven grandchildren and six great grandchildren as well as his many, deep friendships.

I want to share one memory that changed our relationship. It’s also about memories. On one of my first visits to Huntington Commons, in part to hide my trepidation about not having visited for a long time (I almost called it off and probably would not have made the trip without Ashish’s encouragement and support) plus my personal fears about not measuring up, I tried to start a fun conversation--reminiscing about growing up. 

We went back to the time when he was a young dad soon to have 4 kids, a new business, and the responsibility for an extended family that included our maternal grandmother, Nana, and mother’s sister, Judy, who was suffering from TB at a time when cure was far from certain. But our family life, thanks to both Mother and Dad, extended beyond those concerns.

Our parents had a close circle of friends, other young couples in Nichols. Bif and I went up and down Huntington Turnpike, and talked about the people we grew up with and their kids. Their shared experiences included learning life’s lessons during the Great Depression and fighting a great war, raising families and building schools, bike trips on Nantucket and family summers on Cape Cod. Bob and Louise Dunning, Dick and Barbara Sargent, Les and Shirley Nothanagle, Mae West, Dave Peck, the Flemmings with their eight kids, Bif remembered everyone.

Then there was the Milford Yacht Club, our memories of the countless summer weekends when we campaigned our Lightning up and down Long Island Sound and our sailing friends, the life guards and sailing instructors who Dad had a hand in hiring. He spearheaded the first World Championship for the Lightning class in Milford, and that opened up the opportunity for him and mother to travel to Italy and Peru. When we talked about Ned and Emily Daly, their sons Ned and Jerry, he had me pick up the phone and call Ned Junior.

From the days of Ireland Heat Treating on the Post Road, we talked of his many loyal workers, his long-term secretary, Hilda Graff, who was almost part of our family, and the men who’d encouraged Dad to go out on his own. 

We drifted in and out of this conversation over the three days we spent together. For more than 60 years I believed a story I made up: that my Dad was distant, that just because we’d had a difficult time communicating (and of course that was entirely his fault, not mine), that Dad was somehow self-absorbed and not really in touch. 

Nothing could have been farther from the truth. 

He remembered details that I’d entirely forgotten or never heard before. But what really astonished me was the level of feeling, the kindness and compassion in his recollections. He talked of the happy events and the sad moments, the setbacks as well as the accomplishments in a way that made them present. It was so clear that he cherished these men and women. As we talked I could see his face change. I felt his admiration for their successes, sadness for their losses, and gratitude for their friendship. I can also tell you that if there was any funny story about any of the people we talked about, he told it with his gentle laugh and bright smile. That weekend he gave me a real gift—himself.

When I talk to my friends about my father, they are amazed that he lived such a long life, and that it was such a happy and rich life right to the end. They ask, “What was his secret?” Those of us who were close to him know that he was not perfect by any means, that he had his share of disappointments and sorrows, but when I look at his life for an antidote to life’s sufferings I marvel at the wonderful way he connected with so many people, accepting and treating everyone with an even hand, balanced with good humor and love. 

I can’t close without thanking all the people here in Kennebunk who became part of Dad’s family during his last years, the friends and admirers who welcomed me when I came to visit. I will mention Ruth, Annette and Nancy, the Chandlers, by name, and I have to include Dick and Peg, who are no longer with us. 

Julie, thank you for everything you did to make Dad’s last years so rich and fulfilling. You are a totally extraordinary woman.

It’s best to end with a funny story, and one that inspires me, as I grow older. 

When we were celebrating Dad’s 90th birthday at Elen and Charlie’s ranch up in the high Arizona desert, I told Dad that my friends who were golfers (I am not one) were really impressed that he’d cut 7 strokes off his handicap since he was 85. He looked at me with a deadly serious face and said, “Well, Ken, I’m sorry that it isn’t true. … It’s 11. “

*The photo was taken at Bif's 100th birthday party which we celebrated on Goose Rocks Beach, at the Tides Inn where he worked in the kitchen during the depression. Ruth, Dad, Annette, Julie and me.