The Last Hospice
By Lisa Katayama
I'm a volunteer at Maitri, the only remaining AIDS hospice in San Francisco. Once a week, I hang out with its 15 residents, run errands for them, and — sometimes — sit at their bedsides as they go through the process of dying. I do it because I like to face my fears, and death is the one thing that I fear the most.
My relationship with Vinny began at a time when I was subconsciously distancing myself from Maitri. After the tragic deaths of a few long-term residents I had gotten very close to (two died of natural causes; one was brutally murdered while out with her abusive boyfriend; another bled too much from his dialysis tube), I was feeling depleted and scared to create new connections. I still came in for my weekly sessions, but I spent more time chatting with other volunteers and less time connecting with the residents themselves. It felt safer that way.
During a routine volunteer support group meeting, a woman named April mentioned that she wanted to make a book for Vinny. He had been showing her his poetry, and she thought it would be a good idea to get it published.
But April is a self-proclaimed luddite and barely knows how to turn on a computer. So I offered to help.
On a foggy Wednesday afternoon several months ago, April introduced me to Vinny, a 54-year old man from Oakland. He's a dapper fellow in a wheelchair who wears black leather, lace, dangling cross necklaces, and thick metal bracelets. His room is colorful and full of life — a bright blue bedspread with tigers on it adorns his single bed, and an oversized dolphin tapestry hangs above the headboard. A thick black cross nests between two rainbow-colored butterfly-shaped cushions on his pillows. His closet is overflowing with one-of-a-kind outfits — a sleek leather Looney Tunes jacket, a blue silk robe, a purple Spiderman suit — that he picks up at the thrift store downstairs.
I sat in Vinny's room for hours as he showed us his writing and graciously answered our questions. In addition to publishing his poetry, we wanted to chronicle his life for posterity. Maybe posterity isn't the right word, because all five of his children are dead. (He won't tell me why.) Vinny's explanation is more blunt: he just doesn't want anyone else to make the same mistakes he did. I transcribed his every word on my MacBook as he spilled stories about his horrible childhood, his careers as a drug dealer and an airport hydraulics specialist, and the diagnosis that changed his life.
I remember a long time ago when I was a small child; in these days children were poor and abused by their elders. It was an every day thing. Every morning when my eyes opened they both had tears in them because I knew that day would bring pain, lots of pain. Black and blue marks across my face, and my hands crushed in car doors on purpose. I was forced to take pills that at the time had affects on me. I thought being raped was just part of my life. There were boys and little girls who knew this whole picture was wrong. But who would you tell at that time? Who would listen to what a kid had to say?
No one at all.
"Have you ever been hit on the head with a high heel shoe until you bled?" Vinny asked me. I stupidly shook my head no. "I was hit because she was so drunk and she would come in and beat me. She would call me names and take off her shoe and put holes in me. I was a tiny little kid and didn't know what to do. I needed an escape from my pain, to get out of that morbid, morbid world I was in." Other things "she" did included tying a rope around his neck and making him eat sauerkraut — his least favorite food in the world — on his hands and knees. He ran away from home when he was 6. He lost his virginity to his twenty-something year old baby sitter when he was 9. Her name is tattooed on his right arm.
Vinny spent his whole life trying to right the wrongs done to him as a child. He never beat his children. He got married and bought a house in San Bruno and held a proper job working on the hangars at San Francisco International Airport for over a decade. There was just one
problem: the demons from his childhood. They followed him wherever he went. Sometimes they showed up by his bedside in the shape of a mythical alp. Other times, as vampires in his dreams.
It only takes one person to take you down that path of no return. I had a great job working at the San Francisco International Airport for over 17 years. But one day after work, my friend and I bought some speed. We only had one outfit, so we shared. He went first. I've known him and his wife for 15 years, so I knew he was clean — or so I thought.
One day, he got sick, so we took him to the hospital. He came back HIV positive. His wife and I cried and took the test too because we had shared his needle. Needless to say, mine came back positive as well.
The suicidal thoughts alone took me to places nightmares are made of.
He died three months later. I quit my job at the airport, paid off my house and gave it to my wife, whom I divorced because I was afraid she or someone in my world would contract my sickness.
I gave up my life and moved to San Francisco to die with the others who had AIDS. I've been around for a long time. I thought I was all this and that, Mr. Big Shit, but what I really was was stuck on stupid, just like everyone else who thought the easy way out was easy.
Vinny packed a few things in his truck, said good bye, and drove south. For the next two decades he lived peripatetically, camping with his dog and making the occasional trip up to San Francisco to sell drugs and buy anti-retrovirals. In other words, he became one of those people that society has written off. A failure. During his last few years on the streets, he became a licensed minister and offered services to friends who were dying. He came to Maitri as an end-of- life patient in April.
We all struggle to fit in, some of us more than others. Most of us figure it out somewhere down the road and find societies we feel like we belong to, or can at least pretend to belong to. And then there are the Vinnys of the world — they're born unlucky and stay that way. No matter how hard they try, they are unable to integrate. Many of the residents here suffered from extreme poverty, misfortune, and addictions in life. This beautiful zen-inspired space where they have come to die is more peaceful than other settings they've lived in — drug-infested SROs, crowded hospitals, the city streets. Even then, facing death is no easy feat.
Vinny's cancer is eating holes into his eye socket and his left cheek.
The entire right side of his face has melted away; you can see that there's nothing underneath his tattooed skin. It hurts. He can barely sleep.
My friend who is a nurse once told me about her experiences of observing how families react to the death of a loved one at her hospital. Some try to fight it by telling the dying person not to go; some try to negotiate with it with medication, life support, oxygen; others put it on trial, finding someone to blame for what's happening to them. One of my favorite books in the world, The Tibetan Book of Living and Dying, offers advice on how to not fear death and let loved ones die peacefully according to Tibetan Buddhist principles. I'm not a Tibetan Buddhist, but I'm going to take their advice on this one. Here's what author Sogyal Rinpoche suggests you say to someone who is dying:
I am here with you and I love you. You are dying, and that is completely natural; it happens to everyone. I wish you could stay here with me, but I don't want you to suffer anymore. The time we have had together has been enough, and I shall always cherish it. Please now don't hold onto life any longer. Let go. I give you my full and heartfelt permission to die. You are not alone, now or ever. You have all my love.
Vinny is getting weaker every day. When I saw him yesterday, he was so much worse off than he was a week ago. He can barely sit up but he refuses to lie down in his bed, maybe because he knows that's where he is expected to die. All I can do is sit by him and reassure him that he is not alone and that it's okay to be afraid.
Update (Sept. 2, 2010): Vinny died at this morning at 8:35am.