By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
But in April, Higgins began taking a combination of drugs that included ritonavir, and his improvement has been even more dramatic than Johnson's, with a decrease in his viral load from a million to 500 in four months' time, coupled with a rise in his t-cell count from zero to 280. Ironically, Higgins says that in June, as the protease inhibitors were improving his health, he felt pretty well resigned to the prospect of death.
"Now I might have a little hope, and some new horizons, and I'm a little bit lost by it," he concedes. Is it worth it to cultivate another profession besides serving alcohol? Right now, his energy level is better than that of people on disability but not enough to work an eight-hour shift, which his doctor has ruled out anyway. He is being considered for Medicare, and knows if he turns it down he'll likely forfeit his eligibility forever; yet taking it compromises his job prospects. Without health insurance, the drugs would almost immediately liquidate his $8,000 life savings. Taking the pills three times a day on an empty stomach is almost like a full-time job anyway, Higgins says, but he knows of a friend who is less religious about his daily regimen and the friend's viral load has started going back up.
"I feel better, but I have no idea what that means," he says. "I guess I'm going to wait a couple more months before I even try to figure it out. I'm a realist and I live like I have about a year left. But if the drugs do help, I just wish I knew if I had two years or eight years; it's a control issue and I'm a controlling person. It is hard to know when my ego should get involved and when I should leave it up to a higher power. I've kind of succumbed to, well, death I guess. You hang on to what is familiar to you. I'm in subsidized housing, and I have the feeling I shouldn't try to live anywhere else: This is where I'm going to die," Higgins concludes matter-of-factly. "It can be a dilemma. Say I want a new career and maybe go for retraining. What sense is there in going to school if I die right after I graduate?"
For many late-stage AIDS patients, the uncertainty created by an extended lease on life can become an embittering experience. Higgins says he knows people who left high-paying professional careers, got rid of their pets, or burnt through their savings as part of preparing for death. When they discover that the finish line now may be moved back, they feel angry--cheated out of a certain security.
David Swarthout is a licensed independent clinical social worker who used to work for Hennepin County at the Red Door Clinic and has counselled thousands of people with HIV. "Sometimes when a disease like this interrupts a person's career and the entire course of their life," he says. "They redefine themselves totally in terms of their illness. Their fight for their life becomes the purpose and meaning of their life, and it is a huge adjustment when someone comes along and says maybe they don't have to fight so hard after all. For some people that can be as devastating as the original diagnosis. Maybe they've gone to Paris or cashed in their life insurance--now what are they going to do with their lives? And if the protease inhibitors are not a life-long benefit, they are in danger of going back and starting the process [of accepting their mortality] all over again, like double indemnity. So there really is some comfort in having some predictability about life."
Greg Johnson is loathe to romanticize the terms of his existence. Ask him about the people who cashed out their life insurance too early and he'll tell you they're the lucky ones. "People have to start their lives over all the time; when do the Bosnian refugees get to cash in?" he snorts. Talk to him about dying of AIDS and he replies, "The obituaries make it sound heroic: 'He struggled courageously against his disease.' There's nothing heroic about it: It is really horrible and painful and debilitating and it takes away your pride and then it kills you." Asked if there was ever a time he wanted to die, he says simply, "Nope. Never. I always wanted to get better.
"You want to be hopeful," he says softly, "but not too much. What would it be like to convince yourself you are going to live, after you have gone through the process of accepting that you are going to die? To face that process again--I couldn't do it."
The process began five years ago, a year after Johnson was diagnosed HIV-positive. "You start whittling down your priorities, deciding what is worth giving away so you can keep something else," Johnson explains. Antiques were the first casualty; Johnson stopped going to shows and eventually sold his collection, including his prized treasure trove of ruby glass. Then it was camping, one of Johnson's favorite activities. "As you start getting sicker and sicker you think, is this camping trip worth a day or two in the hospital? You really have to think of it in those terms." People are judged by the same blunt criteria: Johnson doesn't suffer fools or annoying acquaintances so much anymore--he literally doesn't have time for them. Babies, on the other hand, have become more and more attractive, for obvious reasons. "All that vitality and new energy, I've really found them fascinating to watch. Besides, a baby is the opposite of a person who is dying, right?" he says.