BACK TO LIFE
As William Kinkler reaches out to shake your hand, his right arm pulses and twitches perceptibly. Almost all afternoon, he has been smoking cigarettes and watching the weather come and go while sitting in a wheelchair on the porch of Hope House, an old farmhouse in Stillwater that is politely referred to as an adult extended care facility and more often functions as a hospice. After a day of drizzle, the front yard sparkles in the early evening sun. It's a beautiful sight, Kinkler says, speaking with a pronounced drawl that sounds like a recording of John Wayne set just a hair below normal speed. There is a genuine smile set within the immaculately manicured gray hairs of his Fu Manchu, and a vibrancy in his eyes that does indeed make them gleam. Bill Kinkler was supposed to be dead and cremated about five or six months ago, and he is feeling much better than that.
In January, Kinkler's right leg became increasingly numb, and he'd sometimes stammer and forget what he was going to say. Near the end of the month, at Ramsey County Hospital, Dr. Keith Henry supplied him with a devastating diagnosis. A viral infection had settled on his brain, an opportunistic condition resulting from his immune deficiency. Without even knowing he was HIV-positive, Kinkler suddenly discovered he had full-blown AIDS. "Dr. Henry said he would try AZT or whatever, but realistically. there was nothing we could do. I came here on the 4th of March, basically to die," Kinkler says.
By late March, Kinkler had lost all feeling and muscle control on his right side. "Bill was dying, mentally and emotionally, as well as physically," says Laine McGee, a close female friend who has known him for 38 years, since junior high. "The deepest part of his depression began after his friend Larry went back to California after visiting. It was early April because we decorated Bill's room for Easter." Staff workers at Hope House say that during this period, Kinkler lay in bed choking back tears most of the time, and that he was constantly angry and excessively demanding. It so happens that Kinkler had grown up just a block and a half away; his bedroom window at Hope House overlooked the other side of the ravine in the same woods where he played as a boy. Yet Kinkler says he didn't allow himself to indulge childhood memories. The television stayed on from seven in the morning until two or three hours after midnight. At night, half-paralyzed and plagued by night sweats, he would flail around in bed, trying to get comfortable.
More than anything else, Kinkler dreaded the thought of slowly wasting away. He had seen it happen to his friends in California, knew it was happening to one or two people just down the hall. Henry reassured him that the brain virus would take him rapidly, and that pain medications could minimize the suffering. Says Kinkler, "I was preparing myself to go to sleep one night and not wake up. But I figured if this was going to be it, I didn't want a lot of people around to see it. I withdrew into myself. I kicked my father out of my room so many times. 'The hell with you! Leave me alone,' I'd yell at him." An only child, he named McGee as his power of attorney, and wrote a will that divvied up his few possessions. "He told me to take care of his parents," McGee says. "He didn't plan a funeral service. I don't think he thought anyone would come."
Three days after Easter, on April 10, Kinkler began taking ritonavir, one of a new class of antiviral drugs known as protease inhibitors. He had asked about the drugs the previous month after reading a newspaper article about their approval by the FDA; Henry replied that it probably couldn't help him, but it also wouldn't hurt to add it to his existing regimen of AZT and 3TC. Almost immediately, Kinkler's health started to improve. Tests in May showed decreasing amounts of the AIDS virus in his blood, and an increase in his t-cell count, an indicator of stronger resistance to the virus. But as Kinkler puts it, "I was still thinking more about death, not convinced anything else was going to happen."
A cathartic, all-night visit from McGee snapped his attitude. "I climbed into bed with him and held him in my arms and it was the first time I had seen him totally break down," she says. Adds Kinkler, "It was the first time I admitted out loud that I was dying. And it was the first time," he says, his voice cracking at the memory of it, "that I said I really wanted to live. The next morning I woke up and decided I wanted to fight. Not to be a hero or anything, but because I thought I could have a better life than anyone was expecting."
In June, Kinkler's tests again gave reason for encouragement. But the real breakthrough occurred later that month, when, after six months of numbness, he started regaining feeling in his arm. Then the bottom of his right leg became ticklish. Exhilarated, Kinkler intensified his efforts with his physical therapist, constantly setting goals for himself as he strained to loosen joints and limbs that had locked up and become atrophied from lack of use. By late September, with his weight up to 166 from a low of 138, he was able to shake hands, rotate his shoulder so his hand went behind his head, and even walk with the use of a one-sided walker. The infection on his brain was diminishing. "The last time we talked to Dr. Henry, he looked at Bill and me and said, 'He should have been dead in April.' There was no sugarcoating," says McGee. "He also said that if he was seeing Bill for the first time and did a blood test, he wouldn't even be diagnosed HIV."
"Obviously, this is wonderful," Kinkler drawls, and tears of joy again appear in his eyes. "I don't think I have ever felt this good and this positive about myself for as long as I have lived."
According to Henry, what happened to Bill Kinkler is not a random miracle. A highly respected member of the local AIDS Research Consortium, with a reputation among his patients for aggressive treatments and compassionate care, Henry was initially skeptical of protease inhibitors, explaining that "when you do this a long time you get disappointed a lot." He'd heard rumors of nasty side effects and resistant viruses connected with the drugs and thought to himself, here we go again. But in January, Henry attended a meeting in Washington, D.C., where the results were announced of a clinical study involving the use of ritonavir on more than a thousand patients from around the world with full-blown AIDS. In terms of clinical improvement and sheer survival, the drug had performed better than anything any of the researchers had seen previously. "As we heard the report, you could tell that a switch was being clicked," Henry says. "Everybody there was imagining what it would be like back home in the clinics. There was a feeling around the room, that things would never be the same."
Ritonavir was approved by the FDA in February, quickly followed by indinavir, which in March received the speediest FDA approval in the agency's history. Unlike saquinavir, the first protease inhibitor approved by the FDA last November, these two drugs are easily absorbed in pill form through a patient's gastrointestinal tract, although a sizable minority of people are not able to tolerate the side effects. In addition, there are indications that resistant viruses to the drugs can develop, particularly in late-stage AIDS patients. Yet, especially when taken in conjunction with older antiviral drugs like AZT and 3TC, protease inhibitors have had a profoundly positive impact in the fight against AIDS.
"It has been an amazing twelve months in the HIV world. I think the protease inhibitors have opened the door to a golden age in anti-viral therapy," Henry says. He estimates that he has prescribed ritonavir or indinavir to approximately 75 or 80 people, and that more than half have had the amount of HIV in the blood, known as a viral load, diminish to the point where it cannot be detected. "The rate at which people are being hospitalized seems to be dropping dramatically; I talk to people from all over the world with access to these drugs and they all tell me the same thing. Of course, the way healthcare works in this country, I'm not making as much money," Henry says with a chuckle, "but that's more than compensated by having people who were morose, depressed, and waiting for the other shoe to drop suddenly start singing in the shower and sending me postcards from where they are taking vacations. A postcard from an AIDS patient who has never travelled, telling me what a good time he is having--that's priceless.
"And Bill, who was ready to die, and then comes into the clinic in a wheelchair one day and says, 'Dr. Henry, I want to show you something,' then shakes my hand with a hand that was paralyzed and stands up, where he couldn't walk before. The issue is no longer can he survive with any quality of life; it is how much can we rehabilitate him. It was unbelievable; I felt like I had died and gone to heaven. For the next five minutes I ran around grabbing other docs who don't even deal with HIV, and said, 'you've got to come see this.'"
However, some AIDS activists say that focusing on dramatic cases like Kinkler's with such unbridled enthusiasm obscures the negative and uncertain aspects of protease inhibitors and fosters destructive false hopes and assumptions among members of the general public. Already there are reports of increasingly risky sexual behavior because people now believe there is a "cure" for AIDS. At the same time, people with AIDS are discovering that friends and relatives automatically assume they are going to get better, a frequently unrealistic optimism that intensifies an already stressful situation. Clinical studies indicate that the immediate side effects of the protease inhibitors, which range from extreme nausea, numbness, and tingling in the body, generally diminish during the first few weeks, but some people simply can't tolerate the drugs, which further saps their spirit and self-esteem. There is also the prohibitive cost of the drugs (which run into the tens of thousands of dollars per year) for people without medical insurance. A daily dosage of up to 20 pills is not uncommon, and studies have shown that it is vital for patients to take them at their appointed times, on an empty stomach if the pills include indinavir, and shortly after a meal if they include ritonavir. Such discipline and dedication is problematic for many AIDS patients.
"The doctors are excited, the media is excited, and family members think they have the answer, but there are still a lot of people out there who are just getting sicker," says Linda Brandt, of the Rural AIDS Action Network, a volunteer organization that supports AIDS patients and their families. "I lost two long-term people with AIDS last week and both had been on protease inhibitors. In a way it is even more devastating if the families are expecting not to lose their loved ones. Before we jump to conclusions, we need to at least wait a year or two and see what happens with these drugs. Because nobody knows right now."
In fact, given the unprecedented quickness with which they passed through a newly streamlined FDA approval process, protease inhibitors probably pose more unanswered questions than any other class of drugs currently on the market. Brandt and other activists recall that the approval of AZT created a similar outpouring of hope in the AIDS world, which was soon tempered by the rapid appearance of resistant viruses. Protease inhibitors have already proven to be stronger and more impervious to resistant viruses than AZT, but nobody expects them to permanently banish such a resourceful disease as AIDS. For even the most successful patients using protease inhibitors then, the question becomes how long and how well they can continue to live.
"We're still on a steep learning curve," Henry says, noting that while great scientific advances have been made in the ability to measure the amount of t-cells and levels of virus that exist in the blood and tissue, much less is known about the capacity of the immune system to regenerate itself. Protease inhibitors clearly help to boost t-cells and diminish viral loads, but that may not be enough to stem the onset of resistant viruses if a person's immune system has been so battered by previous infections that it can't effectively regenerate its defenses.
For Bill Kinkler, whose medical history was untroubled enough that he didn't even know he had HIV until January, and whose astounding comeback affords him great psychological momentum, optimism about the future is relatively easy to come by. For others, however, who have ridden the horrific physical and psychological roller coaster of AIDS for many years, attitudes toward life, death, and the promise of protease inhibitors are much more nuanced and fraught with ambiguity.
The somber strains of Henryk Gorecki's Symphony No. 4 will be playing as mourners file in to pay their last respects to the body of Greg Johnson. Then, after the prayers and the eulogies, there'll be a rendition of an old tune from the Mississippi delta, "TB Blues," an eerily familiar recounting of another plague from another era. After that, "I don't know," says Johnson. "I want the next song to be more uplifting. My partner, for his first song, he chose 'Swing Low Sweet Chariot,' which is pretty traditional. But for his second song, he chose 'Rainbow Connection,' you know, from the Muppet movie? Which I thought was pretty cool, a very unconventional thing to sing at a funeral."
As a teenager growing up in Plymouth, Johnson would make occasional forays over to Lakewood Cemetery and indulge his fascination with death. "I would go take walks and think, 'Oh, look at these cool headstones,' and I'd start to wonder about what kind of marker I'd like to have. It was like these romantic fantasies about death. And then, you know, you read about the plague in Europe and look at all the artwork it inspired and it is very gothic. I found that very appealing." He emits a low, bone-dry chuckle. "But then, as you get closer to death, you start going, 'Oh, this really isn't so cool, is it?' The idea of dying at a young age just makes you think about all the things you won't get to do."
Sometimes Johnson has to improvise, like with the red Geo Sprint parked out back. All his life he had dreamed of owning a red sports car, and while the Geo is more of an ersatz roadster than the real deal, it was the best his budget would allow when he was in the market for a new vehicle nearly two years ago. "I bought it knowing it would be the last car I'd ever own," he says.
Six years ago, when Johnson was 27, Brent, his partner of two years, tested HIV-positive. Although the two had never practiced unsafe sex, Johnson quickly got tested and discovered that he too was HIV-positive. Since then he has suffered through three bouts of pneumocystis, a painfully debilitating lung infection that literally takes your breath away. The worst of it was in August 1995: Upon his release from the hospital, a nurse would come to Johnson's house every morning and give him medication through an intravenous line in his arm. His weight dropped to 117 pounds and he barely had enough energy to stand in the shower or to shave his face. "There were four stairs that led to the back door. I would try to plan everything so I only had to go up and down those stairs once a day, and after that I'd have to rest. I looked and felt like shit. I was doing IV infusions every day and taking, god, so many pills. And I thought, this is what it's like when you are almost dead. That's when I updated my will and started thinking about what my service should be like."
For a while, Johnson beat back the infection, but it reemerged with a vengeance in February, lasting until the middle of April. By then, his liver was so worn out from all the drugs he had been taking that he developed jaundice. At the same time, Brent's ongoing case of Kaposi's Sarcoma was diagnosed as terminal. Johnson himself required 14-16 hours of sleep, so a lot of Brent's care fell to his father, friends, and some medical personnel, who helped with the diaper changes, medications, and the rest. Brent died on Memorial Day, a few months shy of his eighth anniversary as Greg's partner.
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.
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.
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.
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