Something Happened

“People comment on the fact that I’m a much nicer person since I’ve been sick—and easier to get along with,” quips Joseph Heller, 59, the celebrated author of Catch-22, Something Happened and Good as Gold. Since early last December Heller has been in the grip of Guillain-Barré syndrome, a bizarre form of paralysis that strikes without warning. A disease of uncertain origin, it invades the nervous system when the body’s immune defenses backfire, apparently after exposure to any one of several viruses. The disease first came to widespread public attention in 1976, when 700 cases were reported in the U.S. among people who had been immunized with a vaccine containing weakened swine flu virus. Rarely fatal, Guillain-Barré syndrome has no known cure, but with the passage of time, anywhere from months to years, 80 percent of its victims recover fully. When Heller was struck down, he was separated from his wife, Shirley, and living alone in a tiny Manhattan apartment. He found himself helpless and dependent on friends for the first time in his life. While recuperating at his East Hampton, Long Island home, where he is making steady progress, Heller spoke with PEOPLE senior writer Cheryl McCall.

Not surprisingly, I’d never heard of this disease before. I first recognized something was unusual on a Saturday morning when I was having trouble swallowing and I couldn’t take my sweater off over my head. That same day I went to the gym. I was unable to bring my head to my knees in the warm-up exercises, and I couldn’t run my usual four miles. I jogged about a mile and a half. I went out that evening for dinner with a couple of friends and I had trouble swallowing the vegetables, but I didn’t think much of that either. When I woke up the next day, my arms felt weak and I felt tired. I called the doctor at home and gave him my symptoms, and he diagnosed it as Guillain-Barré syndrome right away—just because it came on that suddenly. That afternoon, my right knee buckled as I was entering Mt. Sinai Hospital. A few minutes later, I was in intensive care. It hits that quickly. The neurologist did a very valuable thing: He said, “You’re probably going to have a mild case”—which turned out not to be true—but he said, “You’ll recover fully. You’ll get it all back.” I didn’t ask him what I was going to lose.

I hid from myself the fact that I was seriously ill. I did it by denying the amount of anxiety I felt in intensive care. The first night I was there, the man next to me died, and every few days somebody would die. There were four beds, and most of my three weeks in there, I was the only one not in a coma. After three or four days, I was scared stiff without realizing it. I was afraid to go to sleep, but I was dying for sleep. My eyes kept falling shut, but I kept snapping my head up. I felt if I fell off to sleep, I would never wake up, I would never take another breath. By the fifth day, I thought I was going out of my mind. A neurologist suggested a psychiatrist, and one began seeing me every day until I left Mt. Sinai.

He told me that I was not psychotic, but that there is something called “intensive care psychosis.” My reactions were normal. If I had had any different reaction to being there, then there was reason to worry. I know it sounds like Catch-22. I’d listen to the respirators going for 24 hours every day, and without realizing it, I was aware of every breath I took. Consciously, I was not afraid of dying or permanent paralysis. Unconsciously, I suppose I was scared stiff. I don’t think I ever slept more than two hours at a time—even when I got a private room.

I was never totally paralyzed. The word they use is “quadraparetic.” The disease progressed quickly. I could not move at all after eight to 10 days. They told me I’d be weak, but I didn’t know what weak meant. The only thing left intact by this disease was my sense of humor—and my feet. For more than three months, I couldn’t raise my head. I couldn’t swallow, so I had a suction tube in my throat for the secretions. I was fed through a tube in my nose for more than four months. I couldn’t read after the third day because I couldn’t hold a book or turn the pages. For a period, I couldn’t even make phone calls because I didn’t have the strength to hold the receiver, much less dial a number. I lost between 20 and 30 pounds.

Slowly, as the movement in my arms and fingers began to return, the disease was advancing in other areas. The right side of my face and tongue were being affected. After a while, I didn’t have enough energy to keep my right eye closed. There was a kind of loss of pride about some things, but that didn’t last long—I’d ask the nurse to do things for me. I could not reach my groin with my hands to urinate, for instance. I stopped biting my nails—which I’ve done since first grade—because I couldn’t get my fingers to my mouth. And if I could have, I didn’t have the strength in my jaw to bite them. Having nails is a sort of serendipitous side benefit to Guillain-Barré.

I never thought, “Why me?” I’d never been sick a day in my life, and had a pretty good life until this happened. I was never able to see any connection between virtue and happiness or virtue and good health. In that sense, I’m either cynical or realistic. But my children, Erica, 30, and Teddy, 26, were absolutely shocked, and they still haven’t recovered. They thought I was immortal and invulnerable and ageless—and they were right. I talked to the psychiatrist about them and me. I thought I was going to live forever, never getting older. It’s true that I was in better physical condition when I got this at age 58 than when I was 18 or 28. When my children saw me getting more and more debilitated, they were convinced I was going to die.

If I ever get sick again, I’ll never go to a teaching hospital, because I know what the dangers are now. Most of the doctors coming around had no interest in me as anything other than a spectacle. They were not there to treat me. I had more doctors than I can count, and there was no reason for them to visit me after the first two weeks. There is nothing they could do for me with this disease. They came for all 42 days I was in Mt. Sinai, and they charged me for every visit.

My opinion of the medical profession is no lower than it was before I got sick. I learned to love the nurses and therapists, and I learned more from them than the doctors because they read up on the disease and explained it to me. Future Presidents would be wise to turn to the medical profession rather than Wall Street for their Secretaries of the Treasury. Doctors do have an eye on money. After my insurance had expired, I had to borrow $60,000 for medical expenses. Unless you have workman’s compensation or are indigent, this disease can wipe you out. It’s very expensive to get sick, and it’s a luxury to recuperate.

One thing the doctors did was to prevent each other from doing harm to me. And my friend Speed Vogel prevented a doctor from subjecting me to a repeat of a very painful procedure called an electromyogram [EMG] test that I had barely survived the first time. I was given an EMG test when I was transferred to the Rusk Rehabilitation Institute, where I stayed for four months. The test was the very worst moment of the whole disease for me. To measure transmitting impulses of the nerves, doctors stick needles in your nerves and give you electric shocks. I found myself counting the shocks; at one point they administered 38 on a very sensitive nerve. The EMG is torture, the most agonizing thing I’ve ever experienced in my life. When I got back to my room, there was a very cute valentine from the daughter of a friend. I began to read it and I began to cry. That was the first time I cracked over this. When a doctor announced that he wanted to run a second EMG on me, Speed asked, “Will this help you or Joe?” The doctor admitted he wanted to do the test to satisfy his own curiosity. Speed told him to forget it.

If this disease hit anybody a second time, the person would give up. I would. I wouldn’t want to go through it again. You don’t fight Guillain-Barré, you surrender to it. For the five months I couldn’t move, my friends took care of my personal affairs for me. Speed Vogel moved into my apartment and assumed my identity. He’s a very competent artist, and he learned to duplicate my signature, write checks for me and autograph books. He wore new clothes I had bought and broke them in for me. He also visited me every day. Another friend, Julius Green, who had different talents, figured out my insurance policies. And my children would do things for me or bring me things. My wife and I had already been separated for a year when I got sick so I discouraged her from visiting.

One of my friends who did come was Mel Brooks, to my amazement. He was drawn there just by the sheer horror of this disease. He said he knew all about Guillain-Barré because he had a book on it. I laughed scornfully. Lots of people have books but no one commits them to memory like Mel does. When Dustin Hoffman showed up, the nurses got a big kick out of it. He brought me a Sony Walkman and cassettes and brushed my teeth for me. He called his doctor and came back with a list of the symptoms for Guillain-Barré—he was worried he was going to get it too. Mario Puzo felt ill just walking into intensive care and wanted to leave immediately. His lady friend, Carol Gino, is a former nurse, though. In the hospital, she was like a hooker returning to the brothel—all she wanted to do was shmooz with the nurses about the latest news in intensive care. When I was at Rusk, people would visit because there was such interesting conversation and so much laughter. For a while, if Liz Smith wanted to know where the celebrities were, people could tell her to go to Joe Heller’s room because that’s where the action was.

If anything, this whole ordeal has deepened my friendship with a lot of people because of the solicitude that they’ve showed—and the love. Just as I avoided thinking I’d ever be seriously ill, I shied away from the word love, and the concept of love, as it existed between me and these people. I realize now that love does exist between me and a large number of people, and I’m very glad. It doesn’t embarrass me. It took something like this to bring us together. I’ll be grateful to Speed, Julius, my nurse, Valerie Humphries, and other friends for the rest of my life. There’s nothing that Speed or Valerie can ask me that I’d deny them, ever. I owe them both more than I can possibly repay—so I won’t even try. And that’s what I’ll tell them when they come to collect.

When I came out of Rusk on May 14, I knew I would have to go back to living alone because I was estranged from my wife, and my children have small apartments of their own. (They both are self-supporting, thank God, which is a condition uncommon among the children of my friends.) Speed and Valerie were indispensable because I still couldn’t stand up and had to use a wheelchair. There’s a line in Something Happened that I stole from Speed. “A friend in need is no friend of mine.” It’s lucky he’s forgotten that. While Speed took a much-needed vacation in Cannes and Valerie returned to day nursing, my brother, Lee, came up from Florida to stay with me for a month.

Then Speed, Valerie and I came out here to my house in East Hampton so I can recuperate. They drive, cook, shop and pick things up for me. I can dress and shower myself now and get in and out of bed. My therapist, Don Shaw, comes three times a week, and the progress is encouraging. The three of us get along beautifully, and there’s lots and lots of hearty laughter. Every now and then there’s a little spat between Valerie and Speed, but I come in and patch it up. Just the normal things that someone in an administrative position like myself has to cope with.

I’m feeling very productive because I’m working in two areas, recuperating and writing a book. I exercise every day in the pool. Getting better requires a lot of concentration on my part, and everything I do, from walking 50 yards to the mailbox to unloading the dishwasher, is therapy. I’ve been able to write because a friend arranged for me to use a word processor in place of a typewriter, which is hard for me to handle. Getting the paper in and rolling it up to make corrections requires more strength than I have in my arms and fingers. So I write longhand, rewrite on the word processor, and then give it to Valerie to type because she was a secretary before she was a nurse.

My novel is about one-fourth done, over 330 pages of a first draft now. I was not thinking of the book at all while I was in the hospital, but already I’m using the whole experience in my writing. Certain thoughts and sensations can be used almost humorously. I hope to have the first draft done by next summer. I thought I’d be able to continue writing much sooner and more rapidly—but I always felt that way even when I was healthy.

One thing this illness did was to answer a lot of questions for me. I had been very unsettled and confused since the dissolution of my marriage of 35 years. I had no idea where I wanted to go or what I wanted to do. I was a stranger to myself with lots of choices. Guillain-Barré pinned me down, removed the choices and gave a strong organization to my life. I also have real problems now. I owe $60,000, and I may have to borrow another $25,000 before I can start making money again. But look at all the money I saved on expensive lunches and dinners when I was hospitalized.

Sometimes I get pessimistic and feel that I might never be able to run again. I long to do that. I long to be able to walk out of the house alone or go down the stairs. I get real feelings of disappointment whenever I realize I might not be doing as well as I think. I’d like to get back to a normal life—which for me involved going a lot of places. I have an invitation to a writers’ convention in Vienna. If I was unscrupulous, I’d get the plane ticket and then wire them that I was unable to go. But I’m even too disabled to be unscrupulous.

I’ve been lucky most of my life. When I was a bombardier in World War II, I thought it was safe. I flew 60 missions, and I think we only lost two planes in my squad. It was luck because shortly before I went overseas, the casualties were very high. I was lucky there. I may be lucky with this illness.