Around 1989, my partner Raymond, with whom I ended up living for eleven years, began to show some symptoms of HIV-related illness. Considering we were a Japanese and American couple, everyone thinks that I was the one who brought him to Buddhist practice, but actually it was the opposite. He had gotten hold of a couple of books—Zen Mind, Beginner’s Mind and Katagiri Roshi’s Returning to Silence. He was already sick, and not able to work anymore, but he wanted to go visit Green Gulch Farm. I took him to San Francisco. I didn’t want to go to the Zen Center, so I sent him off by himself and I stayed in the city for seven days doing what every young gay man should do in San Francisco. But I got a little antsy and I decided to visit him, just for a day, and I ended up staying. When I arrived at the center it was toward the end of their work-practice period. Raymond came out completely soiled. He looked brilliant, with this glow in his eyes. He said, “Guess what? I was digging a ditch!” So I thought, Well!
After that, our practice really began.
With this disease, there is no pattern. Some people get very sick at the point when the virus enters their body. For others it takes more time. With Raymond it was kind of obscure. He had a fungus infection that didn’t go away. Little hints like that. He finally decided to have a blood test and he found out that he was positive. It was very difficult. It was actually more difficult for me to think about Raymond being ill than it was when I found out that I was infected too. Also, there was the timing. It was 1989 and there was nothing going on in the way of treatment, nothing. It took me about a month to be able to put on a face and go to work and pretend that nothing was wrong.
His symptom was Kaposi’s sarcoma, which paralyzed him. By the time he died his KS was from toe to waist, his legs looked like thin pieces of charcoal, and his skin became quite hard. Also, the fungus infection had crept up into his brain, and he had difficulty with movement and with speech. By the end of ’93 the doctors were telling us that there were no more options. They said we could expect a rapid deterioration.
He was bedridden for basically a year. I ended up quitting my job because I stayed home too often, and my employer wasn’t very happy about that. At that point I had enough money anyway, so I thought it would be okay.
In the last several months of Raymond’s life, our Zen teacher coordinated about ten people, and they came to my apartment and took turns doing errands for me. It was very important for me to spend as much time with Raymond as possible. My biggest problem was laundry. He was discharging so much bodily fluids from open sores everywhere. He was hooked to a condom catheter for urination and body fluid was everywhere and I was supposed to do all the laundry with hot water. It was huge loads every day. And no one wanted to touch it, including his own family. So I was doing it, but it takes hours and hours to do. Some of the volunteers were willing to do that—I was so surprised. I thanked everybody, and they said, “No—thank you.” That was really interesting. They wanted to see what was happening, what death looked like, and I appreciated that. Raymond and I had our own curiosity about what was happening, so I can understand. Of course it was very painful, but at the same time we understood that this was a practice occasion. “You know those Zen people are so strange,” I said to Raymond. “I make them do your laundry and they say thank you. Should I tell you thank you?” And Raymond said, “Yeah.” So I thanked him, and he said, “You’re welcome.”
Raymond was composed strongly. A big-boned, masculine, athletic guy. And when everything else deteriorated, I think his heart kept on pumping. I’d help him put his legs up, and I would touch his belly. I’d help him breathe, help him watch his breath. I would hold his belly and breathe with him. Being aware of breathing had an immediate effect for him, a calming effect. But I would hear my own internal voice say, Am I going to be like this some day? Who is going to take care of me when I get sick? I felt my own fear and terror. But it helped me to see this, to see my own panic rather than be captured by it. I had never watched my breath or his own so intensely before—I don’t think I can reproduce that. That was the deepest meditation I’ve ever experienced.
With us, there is no solution, no treatment. We don’t get better. The pills are buying me ten years, maybe. Other religions suggest there may be a miracle, or you may go to heaven. But it is strangely comforting to hear from Buddha’s teaching that there is no such thing. This is what it is. This is reality. The Buddha’s teaching says that hope is just the flip side of fear, and fear the flip side of hope. The best thing is just to stay awake and watch it, watch yourself, and feel everything as it is right now.