‘Why Can’t I Die Now?’ : Education: Bill White is losing his fight against AIDS. He tells his story to an unusual class at UC Santa Barbara.
In the first image, Bill White appears robust. His thick brown hair curls over his ears. His smile is wry and appealing. This image is two-dimensional, all lights and faded colors projected onto a large screen.
In the second image, White is three-dimensional, but he is pale and gaunt. It is difficult to believe only one year has passed since the first image was recorded. White is sitting on a folding chair in front of the screen.
White, retired church organist, musicologist and AIDS patient, is today’s lesson here at UC Santa Barbara. The course: Interdisciplinary Studies 150, “Voices of the Stranger.” The professor: Walter Capps. The point: Real life. Capps was inspired by the writings of Thomas Merton, a Trappist monk who died in 1968. “He says the truth comes to us in three ways--sacred texts, in our own hearts and most profoundly in the voice of the stranger, the person from whom you wouldn’t expect to receive the truth.”
Capps’ specialty is ivory-tower-felling, reality-pounding courses. He made a name for himself as the architect of a course on the Vietnam War; it drew on the personal testimony of veterans and has been copied by 300 schools across the country. For his latest course, luring nearly 900 students in its third year to the largest auditorium on campus, Capps has enlisted a blind geography professor, a former hostage in Beirut and Soviet soldiers tromping down lecture hall aisles in full regalia.
White, whom Capps knew from Grace Lutheran Church in Santa Barbara, was already a member of the professor’s unlikely crew of lecturers. He talked to the students last year, when he was in the early stages of his illness and still fairly upbeat. When Capps saw White at church on Easter Sunday, White’s health was visibly--dramatically--worse. The professor invited him to speak again.
“He said, ‘I was afraid you wouldn’t ask,’ ” says Capps, a distinguished, graying professor. “Monday morning his mother called. She said, ‘If you want him to speak, do it this week. I’ve never seen him this bad.’ We hit on this compromise: I would play the tape (of White’s talk last year). If he could come, fine. If he couldn’t, we had the tape.”
During his illness, White, 35, has found his mission in speaking engagements aimed at all those people who believed they could never get AIDS. And White says he believes Capps’ invitation will be his last forum. So he “trained” for his final public appearance by resting, hoarding his rapidly diminishing strength. The professor’s job was to stick close by White’s side on stage--doctor’s orders--so if White’s words slurred or his mind wandered, Capps could grab the microphone.
The lesson White offered a year ago was that favorite of humanists and novelists: “Life has meaning, and the forces of life are stronger than the forces of death,” in Capps’ words. But this time, as White edges closer to death, his message has changed: White’s pronouncements about willing himself well are giving way to dark and intermittent bouts of anxiety.
The professor hopes White’s appearance will lend a human face to a national blight that can be paralyzingly abstract, especially for the young, “so that when they think about AIDS, they won’t think ‘national problem,’ they’ll think ‘Bill White.’ ”
By the time White finishes, the students are on their feet, applauding in admiration and, in some cases, weeping for White’s pain.
“A friend said most classes are science and math,” says Anna Johnson, 21. “This was life.”
First Image:
Bill White in 1989
These are some the comments White made to the class a year ago. “I used to teach voice in the music department at UCSB for three years. Then I got my doctorate (at the University of Texas) and was underemployed for a year. The day after I sent in my first rough draft of my dissertation, I decided maybe I should go to the doctor and see about my T cells. Those are the cells in your body that can keep your immune system going. I found out that I had 19 of them, which isn’t very many. One person I know said he knows people with such few T cells they all had names.
“I had known for a year and a half . . . that I had tested positive in the AIDS antibody test, and I wasn’t taking very good care of that . . . I lost 40 or 50 pounds, and I developed an amazing cough for four or five months. And in collusion with my general practitioner, we’d pretend that I was well. He would say, ‘You needed to lose the weight,’ and I would say, ‘Yes, but I’ve lost all this weight,’ and he’d say, ‘You feel better, don’t you?’ and I’d say, ‘Yes, I do.’ He accepted my diagnosis and I accepted his, and we went on like that until it became obvious that we were both crazy.
“When I was diagnosed, I was told if all I had was pneumocystic pneumonia, it could be controlled, but AIDS is a chronic condition.
“Another term I’d like you to be aware of is the term AIDS victims. You don’t hear people talking about heart disease victims or diabetes victims unless they die, and I assume that if I die I will be an AIDS victim. But since I’m alive, I prefer not to be called a victim, because I’m not a victim.
“There are days when I feel like I’m dying. There are days when I wish I were dying. But most of the days I’m alive, and I’m as vitally alive as I possibly can be because I know I might not live until 80. I might live to be 40. That would be wonderful. I’m 34 now, and I think that would be a victory because I would have lived six or seven years knowing I was under the threat of dying at any time.
“The future does not exist. It’s not here until we move ahead, minute by minute, day by day. I can’t afford to live in the future any more. . . . If I want to do it, I do it now and enjoy myself. I have a great excuse to be self-indulgent, to do things I enjoy, to go to the beach, to try not to worry about my social and living situation, my financial situation.
“I’ll let you know some of the maladies that have come my way over the past year, so this robust body doesn’t fool you. I don’t want sympathy. I just want you to know one person’s experience with AIDS thus far.
“I have a bacteria that attacks my internal organs, my liver, my spleen, called MAI. It’s untreatable. It’s a condition that probably some of you have, but your system is able to fight it.
“Since January I’ve been dealing with a virus. It’s sort of like herpes, and it attacks the retina of the eye and causes it to scar over and not reflect any light, so I’m now blind in my left eye.
“I’m still fairly safe. You drive fast enough, and you don’t even notice when you hit them. “I’ve been hoarse for the last few weeks. They’re telling me it might be the same virus. I don’t know what that’s supposed to do to my vocal chords. But as a trained singer, that sounds to me like a lousy diagnosis.
“I have cancer in my right leg, which causes the lymph systems not to work very well, and so it swells up with all this fluid it can’t get rid of. Right now we’re using the very modern technique of wrapping my leg so tight, it can’t swell up. Very medieval. Leeches are probably going to be next, but if it works, I’m not going to complain.
“I take the famous drug AZT you’ve probably heard about, the antiviral drug trying to fight this virus. I can only take a third of the recommended dosage . . . I still become anemic with the third dosage, and I need blood transfusions every three weeks.”
One of the greatest changes in White’s life was “learning not to get excited and hysterical about what might happen. I might be a pauper next month, but I’m going to Europe this month. And I might be very sick next month and I might get sick when I’m in Europe, but I’m not going to get excited about it unless it happens to me.
“I’ve also found that the spiritual, metaphysical help I need to cope with my physical problems has come to me. When I was diagnosed, I was feeling very alone. . . . I found at the (county) clinic a whole network of people ready to help me physically and spiritually deal with a life-threatening illness. . . . I was thinking of suicide, which I think everyone who’s facing this does, if only for a brief moment. I think I would have botched it and had a dysfunctional brain, and that would even be worse.
“I went to a friend’s house the next day and for some reason I cried in the car. I’m a threat on the road. . . . I couldn’t stop crying. . . . It finally hit me what was going on, that this (coming to grips with AIDS) is a process that takes a while.
“I started talking to my friend, and a book had come into her hand that week, when I was dealing with the possibility of having AIDS. It’s a booklet by a woman named Louise Hay, who is a metaphysical teacher and counselor. . . . It talked all about the self and forgiveness and letting go of past fears and . . . creating our own healing, creating through loving thought our own happiness and not worrying about what our family may think.
“She talked about loving healing and whatever spiritual power it is, whatever you want to call it.
“Some people may say it’s a coincidence that those words came to me on that specific day, but it’s not a coincidence. Something is taking care of me. I have a priest friend who would tell me that’s the Virgin Mary. We used to chuckle at that and say, ‘Isn’t that old-fashioned?’ but the Virgin Mary is also a marvelous, loving, nurturing kind of image that I’ve learned to use when I need to be held by my mother, who’s 2,000 miles away.
“If I die from this condition, I trust that I will do it in a fashion where I can cope. I’m not going to go kicking and screaming, frightened, away. I don’t think that’s in store for me. I think I can learn enough beforehand to accept that time and that moment.
“The virus itself is a very weak virus. If it were sitting here it would last 20 seconds and it would die. That is nothing to be afraid of. . . . Your life is so much stronger than AIDS or any virus can imagine to be. We have to believe that, and it’s not being flippant. It’s not being pseudo-religious. It’s true. The power of good in this universe is more powerful than anything else. It’s when we give in to our fears that what we consider evil takes over.
“Every 30 minutes in the United States, someone dies of AIDS, and that someone may be dying alone without the support of their family because they’re ashamed of being gay, or they’re drug addicts and their families have left them alone, or they’re a straight college student who thought it would never happen to them and they’re ashamed. These people need our help. I need your help. And, God forbid, but perhaps you may need my help someday.
Second Image:
Bill White in 1990
And these are some of the things White said this year.
“I can only speak for a short moment, but what I would say now is not the same as what I said last year. I’m not nearly as cheery because I feel lousy. My parents and I are moving into a condominium so we can have time together.
“While I feel a lot of respect (for) Louise Hay and her philosophy. . . . (and) she’s kept a lot of people from beating on themselves, I know that sitting around and smiling and being positive is not going to save my life. I’ve had some major anxiety attacks trying to plan my life.
“I’ve lost a lot of mobility. I still have my Datsun, but it’s in my father’s name, and I wouldn’t drive that thing to save my life. I have no sight in my left eye, and my legs are still swelling. . . . It really upsets me to be constantly asking for favors, from my parents especially and anybody else who might be around.
“I spent most of my life planning for when I was going to be all right. That in itself kept me from doing things. I never could sing, because I was so afraid it wasn’t going to be right. I never allowed my heart to sing, and the few times I did allow that were the best times.
“Things happen correctly. They happen the way we want them to. They happen for the best. They happen the way God wants them to.
“A lot of the things I thought were very important--being able to travel, being independent, being able to do all those things on my own--are no longer important. I will sit in my recliner, and if somebody will bring me food, it will be wonderful.
“When I’m having an anxiety attack, I’m completely out of control. . . . I went to the hospital because my kidneys clogged up, and I needed surgery to unblock them, excruciating pain. And all I really wanted was to die and to get out of that pain. And I kept saying to everyone, ‘But why can’t I die now?’ And you can’t. You can’t just say, ‘OK, let’s die.’ If you have something that still goes on in your head that you want to do, whether it’s to see your mother one more time, or see your grandkids for a short period of time, you have to figure out a way to do that. God will help you do that.
