By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
In the past few months, almost in spite of himself, Johnson has begun to expand the parameters of these life and death decisions. Recent nights have been filled with intense dreams about escaping: fleeing from an island where he is being held prisoner in one, and busting out of a hospital where a doctor has him captive in another. "My subconscious, at least, has decided I'm going to live," he chuckles. But the rest of him has too. At his nadir two summers ago, Johnson gave himself six to nine months to live; before going on the indinavir in July, he had upped that estimate to approximately 18 months. But that too isn't hopeful enough for the way he is feeling about himself.
"In a way, there is a reacceptance of life process going on," he said one late September evening. "Like, this afternoon I went out looking for a dining room table. And I thought, 'Am I going to live long enough to justify buying a brand new table? I have one, but it's too large for my new apartment. On the other hand, if I'm only going to live for a year and a half, I'll put up with furniture that's too big.' These are the kinds of things you think about."
After reading the packaging information and other clinical data on indinavir, Johnson has added a couple of years to his long-term plans, edging further into dangerously vulnerable emotional territory, where there is genuine hope about his future. "Say I'm going to be alive for another four years, as opposed to just a year and a half: What is going to be available then? They say we may be on the verge of an era where HIV is a treatable disease, like diabetes is now, very serious and potentially fatal, yet manageable with the right care. And I'm thinking if I can just stay alive for another four years or so, I might be able to cross into that time."
Dr. Keith Henry is daring to consider the same dream. "We are still short of long-term data, and of knowing what the average human being is capable of; obviously one insulin shot in the morning or evening is very different from 20 pills a day. But I remember when I was a house officer at Bronx Hospital in St. Louis, how impressed I was seeing people that wore pins that said they were a 40-year survivor of diabetes, these were very early insulin recipients. And I've always wanted HIV to be treated in the same way, so that a person could wear a 20-year or 30-year badge and people could say, 'Man, what you must have been through.' Or maybe not say anything but, 'Wow.' I can imagine that happening."
Out at Hope House, the dramatic improvement of Bill Kinkler, and another patient on protease inhibitors right across the hall, has had an impact on the staff. "We had gotten used to most end-stage treatment needs," says executive director Julia Zenge. "I think Bill in particular has certainly changed some of the views of some of the old-timers here. It's been good to have someone in the house who has been aggressively treated, and who will be staying a long time."
In mid-September, Kinkler fell hard, suffering a possible rib fracture a rib while trying to walk on his own. Suddenly, the Macarena he bragged about performing with his physical therapist was circumscribed back into a stiff, tentative hula. But he remains otherwise undaunted. "Let's not kid ourselves. This is a place where most people come to die," he says.
Then he gravely shakes his head no. "For me, this is a transitional phase of my life." He looks me dead in the eye. "I want you to know," he says, "that someday I will walk out that door and leave this place."
Two, five, 10 years from now, protease inhibitors may be regarded as a crucial breakthrough in the battle to create chronic but functional AIDS patients, able to live much like the rest of us, with death an inevitability but tucked in the closet. Or the years may reveal that the drugs are yet another baby-step. For now, however, no matter which way it goes, there are thousands of sick people with moments to savor.
Back at his house, Greg Johnson has been scrambling all day long--securing the lease on his new apartment, buying a new dining room table, and packing up the last of his and Brent's possessions. It is nearly nine o'clock when the beer he has ordered at the Leaning Tower of Pizza is placed on the table in front of him. He stares at it and cackles like a small child. "I can't believe I'm out tonight, having a beer. You know? I spent, you know, I spent--I've been so busy today, and tomorrow I am starting to move, and I'm out tonight having a beer. I can't believe I'm doing this, but I am doing this. Six months ago, three months, no way. I couldn't have done this." He leans back in his chair and cackles again, then picks up the mug with his emaciated arm. A toast to his health.