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Smith and Naifeh, who won a Pulitzer Prize for their biography of Jackson Pollock and together produce annual reference books on the top doctors and lawyers in the country, are bona fide experts at researching and writing. Here, Naifeh takes a back seat to Smith, who narrates this account. In 1986, aged 34, he was given three months to live by doctors at the Mayo Clinic, who told him his brain tumor was inoperable. Realizing that the statistical odds for his death still left a chance he might live, and needing to take control of his situation, Smith began a search that eventually led him to the right doctor and the right treatment. While describing that search, the authors show how the battle for control of one's life is often a struggle against both one's own feelings of denial and the intimidating, we-know-best attitude of many doctors. To illustrate that the battle can be won, they interviewed dozens of survivors of devastating accidents and illnesses—a parachutist who survived an 11,000-foot fall, a young woman who had the first double-lung transplant—as well as physicians and support group leaders around the country. Their stories, feelings, and insights give dimension to Smith's own experience. To show how the battle can be won, they offer advice on researching one's own disease, asking the right questions, developing an effective doctor-patient relationship. While they stress how essential it is to have the right attitude and how important the support of family or friends can be to winning the battle, they acknowledge that sometimes tough decisions have to be made about continuing the fight, and they argue that deciding where to draw that line is the patient's, not the doctor's, right.
Persuasive evidence that "miracles" must be worked for—they don't just happen.
THEY SAID I had three months to live.
According to the doctors, a benign brain tumor, which I had been managing nicely (thank you) for more than a decade, had suddenly turned malignant. After just a few months of undetected, exponential growth, it was now, suddenly, officially "inoperable."
Thus, the inevitable question (asked like a bad actor in a B movie): "How long do I have?"
Thus, the inevitable answer (delivered with studied, stunning off-handedness): "Three months. Maybe six."
That was ten years ago: December, 1986 — just a week before Christmas. I had flown to the Mayo Clinic in snow-covered Rochester, Minnesota, instead of home for the holidays. "Frosty the Snowman" and "Jingle Bell Rock" floated through the hospital corridors. I remember it all too well. The seasonal gaiety made the bleak news seem even more surreal, harder to absorb. The fact that it came from such a reputable institution made it even harder to deny.
So what was the first thing I did?
I went back to the hotel and ate every cinnamon bun in the coffee shop. Then I took stock of my life. I was thirty-four and halfway through the first really important book of my career as a writer: a biography of the artist Jackson Pollock. Strangely, I was far more distressed at the prospect of not finishing the book than at the prospect of not finishing my life, which, I figured, was also about halfway through.
No doubt, children, if I had had them, would have changed that calculus. But, as it was, the Pollock book was my child, and I grieved for the uncertainty of its future far more than the uncertainty of my own.
Not until sometime later that day, after more cinnamon buns, some calls to family and friends, and not a few tears shed in the dreadful loneliness of a hotel room, did I realize what a fool I was being. How stupid. The news was simply wrong. Not the part about the tumor — I had seen the scans myself and the ghostly lily pad of tumor floating in the little gray pond of my brain. No, what was wrong was the death sentence that the doctors read in those ghostly images.
Three months. They said I had three months. But what did that mean exactly? Was it like the expiration date on a carton of milk? Maybe, if conditions were favorable, if I didn't get left out too long or used too often, I might last a little longer ("maybe six"), but the laws of spoilage, like the laws of aging, were irreversible and inescapable? Or was it like the expiration date on a driver's license? As long as I was safe and careful, or lucky, I might go on forever?
Then it hit me. As I was medicating my depression with the tranquilizer of television, a local weatherman came on to say, with an apologetic smile, "Better break out those umbrellas, friends. Tomorrow's gonna be a wet one." In my fatalistic mood, I thought, "Oh great. Just what I need. How appropriate." The dark clouds, the shrouds of freezing rain. God was giving stage directions for my last act ("thunder and lightning off stage left"). The smiling weatherman was followed by one of those playschool graphics with a frowning sun holding an umbrella and the words "Tomorrow: 90 percent chance of rain."
That was it. My doctors were weathermen! They were making predictions based on previous experience, not on immutable laws of nature. When the weatherman said "rain tomorrow," what he meant was "there's a good chance of rain tomorrow — a 90 percent chance — but still just a chance. Out of every ten days with the same or similar atmospheric conditions, it will rain on nine of them — but not on one. Rain is a good bet — a very good bet — but not a sure thing."
In other words, it was all about odds. My doctors were just better-educated, better-paid weathermen making predictions about the course of my illness based on previous experience. When they said "three months," they were reading a statistical table, not a crystal ball. What they really meant was not that I would die in three months, but that a substantial majority of patients with symptoms like mine died within three months.
A substantial majority — but not all.
All I had to do was somehow find my way into that minority who slipped by the three-month expiration date — and then, maybe, the six-month one as well. All I had to do was be that one sunny day out of ten. All I had to do was beat the odds.
Like every other patient, I heard the question "Why me?" in every tentative beat of my heart. But even before that, I wanted to know "How me?" How did this happen?
For a long time, the only answer I could get from doctors was "idiopathic," which is the Greek way doctors shrug their shoulders and say, "Beats the hell out of me." Later, after plotting the tumor's growth rate and reconstructing events prior to its debut, I was able to identify what I think — although not all my doctors agree — was the "big bang," the very instant at which my universe of medical problems began.
It was 1971 and I was doing the spring vacation thing with some college buddies. We were playing around the pool of a little motel in Fort Lauderdale pretending to shoot each other and doing stunt falls into the water. On one particularly spectacular "death" off the diving board, I went straight to the bottom and hit head-first. I knew instantly I was in trouble. As I floated upward, I struggled to keep from blacking out. I kept telling myself, "Don't let go. Stay conscious. Just get to the surface." When I finally breached, I was holding my head. "I hurt myself," I called out with what seems, in retrospect, extraordinary poise. But my friends thought I was still fooling around, just playing wounded, so they laughed. "No, I really am hurt," I insisted. And just then, as if on cue, a veil of watery blood streamed out from under my hand and covered my face. "That'll teach 'em to laugh at me," I thought as they rushed me to the hospital.
Fifteen years later, I was in New York, writing the Pollock biography. Along with Steve Naifeh, my law school classmate and coauthor, I was attending a Christmas party when I tried to take a sip from a glass of punch and the ruby-red liquid dribbled down my chin and onto my shirt. I started to explain, but my lips wouldn't form the b in trouble, or the p in panic. "Help" came out "Hell." And that's exactly what it was. The right side of my face was paralyzed. I couldn't even pucker to kiss the hostess a frantic goodnight as I fled the room in terror.
Just a few days later, I was in the hotel room with the cinnamon buns and the playschool graphics, thinking about expiration dates and sunny days, and hearing that doctor's voice in my head, again and again, impossibly calm: "Three months, three months, three months."
How did it feel?
That's the question I've been asked most often in the ten years since my Christmas at Mayo. How did it feel to be told I only had three months to live? How did it feel to find out suddenly that my life was going to be cut short, without warning or recourse? For years, I struggled to find a good answer to that question. I tried all the canned responses — "I was shocked/stunned/amazed/speechless," or, "It felt unreal/like a dream/like a movie/like it was happening to somebody else" — but they just never seemed adequate. Some caught the helplessness but missed the terror; others caught the dread but missed the panic.
It wasn't until recently, when Steve and I started work on this book, that I found the answer I'd been looking for: the answer to "How did it feel?" It came from a patient named Darren Weber.
In 1991, Weber was a twenty-six-year-old communications sergeant in the U.S. Army's elite Special Forces. He had been called up after four years of inactive status, during which he earned his college degree, because of the Gulf War. Before he could join Desert Storm, however, he needed a refresher course in parachute jumping. That was how he found himself in a helicopter eleven thousand feet above the Oklahoma prairie.
As a Green Beret, Weber was an old hand at military free-fall parachuting. Indeed, his first two jumps that day went without a hitch. By the third jump, his confidence was back. Finally, he could relax and enjoy the sheer exhilaration of free-falling more than six thousand feet at 120 miles per hour, through a cool, cloudless sky. He even did a few stunts in mid-air — rotation left, rotation right — before picking up the drop zone and "just flying my body toward it." Within only a few seconds, Weber had reached his "pull altitude," four thousand feet, when it was time to pull the ripcord that opened his parachute, and begin his slow descent to the ground.
Only, when he reached for his ripcord, it wasn't there.
With his body arched in free-fall position and the ground approaching at the speed of a bullet train, he felt everywhere for the ripcord. He thought maybe it had worked its way down. Nothing there. Maybe up. Nothing there. After searching for two or three seconds — the exact amount of time the army manual allowed — Weber decided to undertake what the manual called "emergency procedures." He pulled his reserve chute.
It didn't open. One of the steering lines had ripped away and wrapped around the slider, a square of nylon designed to keep the parachute from opening too quickly. The chute was deployed but catching about as much air as a garbage bag with the open end tied shut. It looked more like a streamer than an umbrella. When Weber looked up, he saw blue sky where his parachute should have been.
The manual called it a "non-inflated canopy." But Weber had his own words for it, and he shouted them into the microphone in his helmet to his horrified comrades on the ground: "All I've got is a bunch of crap:"
The ground was three thousand feet away now. Still approaching at 120 miles per hour. At that rate, Weber figured, he would reach it in about fifteen seconds.
No main parachute. No reserve parachute. The manual had a term for that, too: "total malfunction."
In his helmet, Weber could hear his comrades on the ground yelling at him, "Cut away, cut away," thinking that it was his main chute that had failed to deploy and urging him to go to his reserve chute, not realizing that the garbage bag above his head was his reserve chute. He tried screaming into his microphone to tell them, but couldn't make himself understood.
Meanwhile, every five seconds brought the ground another thousand feet closer.
In the few seconds he had left, Weber tried to force air into the canopy by pumping the rear risers — "like putting on the brakes" — but the effort only pushed him into a corkscrew downward spiral.
At five hundred feet, he was winded, he couldn't breathe, his parachute was still a streamer, and he was plummeting toward the earth in a dizzying, hundred-mile-an-hour corkscrew, in what the manual euphemistically called "an extreme descent."
With the ground less than two seconds away, Weber "assumed the position," the impact position that he had learned in airborne school years before: "Put your feet and knees together. And relax."
Darren Weber hit the ground at ninety miles an hour. Only he didn't hit the ground. He hit the asphalt runway.
That's how it feels.
That's the way I felt when the doctor told me I had three months to live. Not the hitting part (although there was a momentary breathlessness, as if I'd been sucker-punched in the stomach); but the falling part — the feeling not just of helplessness, but of frantic, silent helplessness; the sense of disconnection from the world, from everything familiar and secure, the vast aloneness; the sense of events rushing by in a blur of futility, of time accelerating just when you need it most to slow down; the terror of hurtling toward an end every bit as abrupt and unavoidable as the Oklahoma earth, pulled by a force as inexorable and implacable as gravity. That's how it feels to be told you have a life-threatening illness. And I know from talking to other patients that the feeling is the same whether the doctor says "brain tumor" or "breast cancer" or "prostate cancer" or "emphysema" or "AIDS" or any one of a thousand rarer catastrophes. Every one is a push out of the plane.
What else does the case of a writer with an inoperable brain tumor have in common with that of a Special Forces sergeant who fell from eleven thousand feet onto an airport runway?
For one thing, we both lived.
The same helicopter from which Weber jumped rushed him to a nearby hospital and within ten minutes he was in the emergency room. His right arm and both his legs were broken. One leg was "externally rotated" — the foot pointed out to the side. The other leg, the one he landed on, had been pushed into his pelvis, making it an inch and a half shorter than the other. His back was broken in four places, his pelvis in three, his ribs in two. Internally, he had bruised his lungs and torn his liver. At one point, his lungs filled up with fluid and he stopped breathingaltogether.
Five years and six surgeries later, Darren Weber is still walking.
And ten years after that bleak Christmas, I'm still writing.
In fact, my story and Darren Weber's have a lot in common. And our stories, in turn, have a lot in common with the stories of the other patients I spoke to for this book: patients who survived catastrophic medical ordeals when nobody thought they would; patients whose backgrounds and diseases differ as much as mine and Darren Weber's — from a ninety-year-old oil worker with kidney failure to an eight-year-old schoolgirl with bone cancer, from an international banker with malignant melanoma to a grocery clerk with cystic fibrosis, from a ballet dancer with a spinal tumor to a weightlifter with a cerebral hemorrhage, from a former nun with breast cancer to a former Miss America with a massive stroke.
Like all these patients, Darren Weber found his way to the best medical care available. The Army fixed some things, but "washed their hands" of his shortened leg and the limp it caused. Fortunately, Weber ended up in the extraordinary hands of Dr. Michael Chapman of the University of California, Davis, Medical Center, one of the leading orthopedic surgeons in the world. It's because of Chapman that Darren Weber can walk, jog, even play basketball again, with only the trace of a limp.
Like all these patients, Weber brought to his long ordeal a determination to survive. "I had an attitude that I would never give up no matter what," he says. "If one avenue of approach seemed to close for me, I would look for a different angle. I was always asking myself, `What else can I do?'"
Like all these patients, Weber did not have to face his ordeal alone. His entire family flew from New Jersey to Oklahoma within two days of the accident. "That meant a lot to me," he recalls.
There is one thing, however, that all these patients had that Darren Weber did not have; something that trauma patients like Weber rarely have; something, indeed, that most patients don't know they have or think they've lost when, in fact, they haven't. And it's something that can make the difference between life and death.