An AIDS Patient Finds the Best Medicine in His Struggle to Survive—friends, Family and Faith
updated 01/30/1984 AT 01:00 AM EST
•originally published 01/30/1984 AT 01:00 AM EST
AIDS has been reported in 31 countries around the world, but none has been as hard-hit as the U.S. As of Jan. 10 the CDC had recorded 3,157 people with AIDS, and of these, nearly half had died. High-risk groups include intravenous drug users, hemophiliacs, babies of infected mothers and Haitians. But the overwhelming majority of cases (71 percent) are homosexual men. The disease has devastated the gay community, where, as one man put it, the choice is now "between life and lifestyle." It's a choice that Steven Klein can no longer make. One of four children (his father is a painting contractor, his mother a Southern Pacific railroad clerk), Klein was first hospitalized for AIDS a year ago. Then 33 and a graduate of St. John's Seminary College just outside Los Angeles, he was on leave from his job as a railroad draftsman when his symptoms developed. Although his life has been irrevocably altered, he remains undaunted, refusing, for example, to refer to himself or others as AIDS victims but rather as patients. At his apartment in Santa Monica, Klein spoke with reporter Hilary Evans about his battle to survive.
I first thought something was wrong 18 months ago. I'd been laid off by the railroad and was getting some financial help by watering people's plants. I'd carry a bucket of water and start getting short of breath. Each week I had to stop at a lower step. My mom was sure it was an allergy to plants because we had gone to a flower market and I'd started coughing. I remember being at my folks' that Thanksgiving and coughing so violently that I had to leave the house.
A few weeks later I went to our family doctor, who ran some tests for autoimmunity. Basically, that's when your body's own defenses turn on you and start attacking the cells within you. Nothing showed up. He had no idea what I had, and I hadn't heard about AIDS. For example, I didn't know that I had several symptoms suggesting the disease: fatigue, night sweats, fever, diarrhea, loss of weight, loss of appetite and a coated tongue.
Just after New Year's 1983 friends came to visit, and they said I looked really bad. I got up and saw myself in the mirror and thought, "This is not me." You could see ribs all the way down. It alarmed me that I'd gone that far without realizing it.
The next day I went to another doctor. He took two X rays and said I had to go to the hospital right away. I was admitted to Harbor-UCLA Medical Center in Torrance, and within three days I was diagnosed as having AIDS. Within five days I was in intensive care with Pneumocystis carina, an unusual and deadly form of pneumonia that's common among AIDS patients.
It happened very fast. My family was notified that I was dying, and a priest came to anoint me. I was unconscious much of the time and couldn't open my eyes, but as the priest anointed me I had a real strong feeling of a presence being there. I felt I was in a canoe on a big calm waterway with willows hanging down. I could smell, hear and see, and I thought, "Gee, this is what happens when you die." I wasn't worried, just curious. Then someone got into the canoe behind me, and at that point I came to in the hospital and felt everything was going to be okay. The doctors were surprised because my pulse, which had been almost nonexistent, had suddenly gotten stronger.
Just before this, the doctors had given me a 10 percent chance of survival. I had ink-colored lips and was gray. I was on a respirator and had so many wires in me I looked like a turkey with too many timers in it. Even after this sudden turnaround I remained in intensive care for 18 days and in the hospital for six weeks.
My first feeling when the doctors told me I had AIDS was that I was going to die. AIDS is a degenerative disease, and you never recover. Your immunity is shot down, and only luck can protect you from a host of ailments. I'm getting stronger, though, and I attribute that to several things. I'm being treated with Bactrim, an antibiotic. Before it was used, the death rate from Pneumocystis carinii pneumonia was very high. Bactrim is the best treatment they have right now, but it has a severe side effect. It hinders the body's ability to make white blood cells. I still take it because I could catch PCP again, but I also take Leucovorin Calcium, a drug which counteracts the inhibiting effect of the Bactrim on cell division.
Like all AIDS patients I am susceptible to about 20 serious infections or diseases, including the usually fatal cancer of the skin, Kaposi's sarcoma. I have a constant sore throat. My body aches real bad. I get nausea, stomach cramps, headaches, earaches and recurring fungus infections. Rashes take a long time to go away. Also, I have a kind of anemia that iron supplements won't cure. I'm always getting rid of something, and then something else breaks out. I get real depressed and concerned, and I have to resign myself to getting over the latest problem.
I'm trying to stick to a macrobiotic diet because I think it gives me more energy. I eat a lot of fruit and try not to eat protein and carbohydrates at the same time. I also eat whenever I can. I know my appetite can change because of the side effects of the drugs, so when I'm feeling good I take advantage of it. I'm 5'11", and in the hospital I was down to 110 pounds. Since then I've gained about 30 pounds.
Twice a week I go to a healer, David Finch. He contacted me through the AIDS Project/L.A., an organization that gives assistance and guidance to AIDS patients. He calls the healing process "regenesis." You lie down and visualize your body, bringing awareness up from your toes to your head. He says I'm like a battery and he's recharging me. I really feel a flow of energy from it.
I also attend a support group every Sunday, sponsored by the AIDS Project. It's supervised by a clinical psychologist and a psychiatrist, and it's strictly for AIDS patients. We talk about what a normal person going through this should be feeling, pitfalls to avoid, like depression, and anything else we want to discuss. At first I had felt so isolated because I knew so little about AIDS, and I'd never met anybody else with it. My friends and family have been very supportive, however, and in that way my experience has been very different from a lot of AIDS patients. Some of them have been evicted from their apartments or lost their jobs.
There is a real sense of paranoia on the part of the public, but doctors are sure there's no way I can give AIDS to anybody except through my blood or perhaps through other body fluids. The important thing they relayed to me is that I can catch things. That's the worst danger for AIDS patients, and it worries me. I go to church, and if somebody behind me sneezes, that's the end of my worship. It's ironic. The public is afraid they're going to get AIDS, and we're running around afraid we're going to come down with something. People don't have to worry. We're not out there mixing. We don't have the energy, and we don't want to come into contact with germs. We go out maybe one tenth of the time we did before.
I really became aware of people not wanting to be around me this past Thanksgiving. Friends had planned a great feast for about 15 people, but then one father called to say that if I was there he was going to take his son and leave. It was like being hit by a bolt of lightning. That same week I was driving and picked up a hitchhiker. He asked me what I did for a living, and I told him that I was disabled and that I had AIDS. He got mad and said, "Do you know I have a knife here? I could be getting AIDS right now!" I almost crashed. We had about five miles to go, so I explained it all to him. By the time he got out he thanked me because his fear had been dealt with.
Now I live like I imagined I'd live when I got to be 92, where you just putter around. I get up, wash and shave, talk to my cats and try to have a hot breakfast. Sometimes I take a nap in the afternoon. A couple of friends have me over for meals so I don't have to go shopping. Driving tires me out. So does conversation.
Before I got sick I had never discussed my homosexuality with my family. It was my decision, and it just didn't seem to be interfering with our relationship. They found out I was homosexual when I was diagnosed. I feel much less stress now that they know, and I think they understood me a lot more than I gave them credit for. I'm as close to them now as I've always been, and it's the same with my friends. We have much more understanding now about what we mean to each other on a deeper level. I'm cautious about hugging and kissing people, in case I get a cold, for example, but my family and friends want to hug me more than ever.
I'm still not sure how I contracted AIDS. I've had a few casual sexual relationships during the last four or five years, but none of my friends has it. Three years ago I got shingles, which usually affects older people. When a young person gets it, it can mean his immunity is low, and doctors now list it as one of the pre-AIDS symptoms if it strikes someone in a high-risk group. The doctors aren't sure, but they think I may have had AIDS for 29 months now.
I know I'm handling my condition better than most. Because I didn't have medical insurance, I went to a county hospital and my bills, which I estimate to be from $75,000 to $100,000, are being paid by the state. I'm getting by on $347 a month in Social Security disability payments plus help from my family and friends. The worst part is a feeling of dread. I'll wake up at night and think of things I haven't done, with friends, appointments, a bill that's not even due, and they all weigh on me. But my faith has helped me, and generally I'm much more content and joyful now and thankful to be alive. If I survive five years, I might be able to get a job, but I'm taking it pretty much one day at a time. I know in five years something definitely will have changed, with medicine, with me and maybe the world.