By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
On a weekday afternoon in early September, Johnson greets me at the door in his bathrobe. Almost all of his loose possessions have been packed into cardboard moving boxes that are piled nearly to the ceiling in most of the downstairs rooms. Although he continues to work 15 hours a week caring for an 8-year-old child with special needs, Johnson realizes he can't afford to keep the house; a Sold sign already adorns the real estate shingle in his front yard. Sitting in a living room chair, his bare calves are dramatically thin and bony, and there is a slightly sallow tint and shiny texture to his skin. Yet he is courageously good-humored, detailing the myriad changes in his life with remarkable honesty and a determination not to invoke pity in others.
With his liver functioning better, he was placed on the protease inhibitor indinavir and two other antiviral drugs at the beginning of July. At the time, his t-cell count had been zero for at least three months and his viral load registered more than a million copies of the disease in each cubic centimeter of his blood. Asked how he is feeling now, he replies, "It's hard to say. My partner died, which is pretty stressful, and I'm moving out of my house to a much smaller apartment, which is pretty stressful. But you know, it's been pretty draining lately and I notice I've been keeping up. My appetite is much better. Even when I didn't have pneumocystis, I felt like I had the flu every day. And I don't need to sleep 15 hours, so it feels like I have so much more time."
Only later does he reveal that his viral load has dropped from a million to 7,000 to 2,400 copies of the disease over a three-month period, while his t-cell count has risen from zero to 45. "When I first heard that my viral load was 7,000, I was so happy; it was that week that I started to think it might to time to look at planning my life a little differently. I used to think of my long-term plans as being in the range of about a year and a half; that it was silly to think ahead longer than that, because realistically--" He pauses to let the thought finish. "But now I'm thinking in slightly longer terms. I'm going to try and go back to school winter quarter, just take one course and see how it goes.
"With some of the money I'm getting from selling the house, I'm going to go to Egypt in March. It's a physically difficult trip in a way; lots of walking around the dunes, and the Cairo museum is gigantic, and [there are] different kinds of food and bacteria I'll be exposed to. Brent and I were going to take a trip this fall. He said he wanted to go to France. We got the travel brochure and there was also a tour that went to Egypt. And I said, "Oh Brent, let's go to Egypt! France would be nice but let's go to Egypt.' And he said, 'There's no way we're going to some Third World country; we'll both get sick and die,'" Johnson says theatrically, giggling at the memory. "And now he's gone and I guess this trip to Egypt is a statement that I'm going to live for a while." But as soon as he says it, his face deflates and his eyes sweep the floor of his chaotic living room. "On the other hand, a t-cell count in the forties is still pretty abysmal."
Most people suppose that nothing is more cut-and-dried than life and death. People with AIDS know better. Being diagnosed with a terminal illness makes for an involuntary ride on an emotional merry-go-round, where a full life inevitably includes preparing to die. "When I was diagnosed in 1991, I was the kind of person who was really convinced I could beat anything. I got out the juicer and started doing all the right, healthy things," says Paul Higgins, a 45-year-old bartender who prefers not to use his real name. "But the chronic sickness picks away at you. It's not even the pain. If you have energy, you can deal with the pain. But life without energy is very, very hard. After the operations and the steroids and the chronic fatigue and the skin problems and all the drugs you're taking and the reactions they cause, your attitude changes in the direction of simple maintenance; that's not pessimistic, that's realistic. I'm used to being an active person. To have to have a friend come over just to do the dishes or wipe the floors or something, that sense of worthlessness. I mean, I lived on my bathroom floor last winter; it was like having the Asian flu over and over and over, every day. After a while, you want to die."
Even then, Higgins believes, "Preparing yourself to die is quite an effort if you are going to do it right." For his part, that means staying sober through Alcoholics Anonymous. It meant inviting family and friends from across the country to attend church with him, followed by a trip to the suburbs for a barbecue, a family reunion attended by more than 30 people. Currently, it means finalizing his will and planning the details of his funeral service.