With his left hand, Stephen wrote a cheerful postcard to one of his neurologists in California. “P.S.,” he scrawled. “How do you like my left-hand writing?” As a gag, he spelled every word wrong. He hoped the doctor could tell he was kidding.
Along the way, he and Ben met up with the rest of their family for a holiday. House building had shown the Heywoods that they enjoyed each other’s company as much now as they had when the brothers were boys. John and Peggy had rented an old Tuscan farmhouse just south of Siena, near the village of Montestigliano. There John worked hard on his book The Two-Stroke Cycle Engine. He also consulted for Ferrari for a few days, so there was an Alfa-Romeo to drive on the roads of white gravel that wind through the hills and the olive groves between Montestigliano and Siena.
At the old farmhouse, the brothers and Jamie’s wife Melinda lounged by the pool. Jamie arm wrestled with Stephen and beat him again with his right hand. They ate wild boar stew. On a day trip in the old region of Cinque Terre, the brothers posed with their parents for a family snapshot, the five Heywoods standing tall and grinning in dark sunglasses in front of five stone towers. They went rambling in the woods around the farmhouse and saw places where boars had rooted for truffles. In Siena a boar’s head hung outside a butcher shop. It did not look fierce in the sunlight. Someone had placed a pair of wire-rimmed spectacles on its snout.
After dinners at the farmhouse, Stephen and Jamie went out in the woods to hunt for a wild boar, a cinghiale. Melinda wrote up their adventure in her journal. Jamie took a walking stick, Stephen took a flashlight, and they marched into the dark hoping to get the wits scared out of them. If they did meet a boar, Stephen planned to climb a tree. Jamie counted on beating it off with his stick.
They were both a little nuts, Melinda wrote. She made longhand notes for an essay that she would later publish on the Web, “In Search of Cinghiale,” by Melinda Marsh Heywood. Besides her careers as a belly dancer, a circus performer, and a scholar of medieval French literature, she planned to be a writer. She wrote: “They are the kind of men who remain firmly in place with mad gleamy smiles when they hear that the eye of a hurricane might soon be passing directly over their vacation home and the rest of the island is evacuating.” They had done that at Duck a few years before.
Whatever is dark, whatever is unseen, whatever is unknown, the boys went there through action. They were not writers like Melinda, not introspectors. They went to the edge through games and action.
Jamie and Stephen did not meet a wild boar that night, and the next night they tried again. Out in the woods, Jamie made Stephen turn the flashlight off to help their eyes adjust to the dark and to keep the quest as scary as possible. Stephen told Melinda about that to make her laugh. She jotted down a quote from William James: “In civilized life…it has at last become possible for large numbers of people to pass from the cradle to the grave without ever having had a pang of genuine fear.”
On their last night out alone in the woods, just as they were about to quit and turn around, the brothers heard a snuffling sound in the dark. They stood still and held their breaths—but nothing happened. They trudged back toward the yellow lights of the Tuscan farmhouse without having met the cinghiale.
Melinda wrote it all up in mock-epic style. Someday, the brothers would have to come back. Someday they would meet that monster in the dark. “For now, however, the boar dons spectacles, cracks open the Inferno with a cloven hoof, and waits for the dauntless duo to return.”
Eight
Back to the Cave
In September of 1998, Stephen Heywood moved back into his old basement room in his parents’ house in Newtonville, which he called the Cave. The Cave had been his first construction experience. With his mother’s help, he had put in a carpet and a waterbed and slathered plaster on the ceiling.
Working mostly with his left hand, he began taking up the floor in his parents’ bathroom and reinforcing the joists. To thank them for their help with his house in Palo Alto, he was building them a new master bath and bedroom. (“That was his idea, not ours,” says Peggy.) Stephen still felt healthy. He was thinking of training for the Boston Marathon. He could hurry up the basement stairs on Mill Street pulling a shirt over his head without giving it a thought. He could broad-jump down the front stairs and land as lightly on his feet as he had when he was trying to amaze Jamie as a teenager.
Now that he had discovered what he wanted to do with his life, Stephen had also fallen in love. He and Wendy Stacy had known each other a long time—she had once gone out with one of his oldest friends, Robert Bonazoli. Stephen and Wendy had gotten together that summer, and the same night he pulled up with a U-Haul outside his parents’ home on Mill Street, they had dinner in Cambridge. It was September 7, 1998, their first real date.
Wendy worked as an administrator in a few biological laboratories at Harvard. She was bright, cheerful, energetic, and optimistic, all good traits for getting along with Heywoods. There was also the attraction of opposites, because Wendy was as short and fair as Stephen was tall and dark. Her word for him was “hunky.” They spent a lot of time together at her place, and Stephen felt very happy with her down in his Cave. He had hung up a big framed nautical map, “Duck and Beyond,” on the wall, and some of his old oil paintings from college. “At Colgate,” Stephen told me once, “everyone else was painting what they were painting. I was painting tools.” Now they decorated the Cave: big hyper-realistic canvases of pliers, a plane, and a Swiss army knife.
Stephen found the house on Mill Street a nice place to come home to, with his mother’s flowers on the counters, his father’s watercolors on the walls, and wavy old glass in the windows. He liked giving tours of the house with his mother. Every new guest of the Heywoods begins with a tour, and Stephen gave the carpenter’s version. “The house was built in 1917. Typical colonial from the outside. These moldings are gumwood, which you can’t get anymore….”
Upstairs, he explained how he had taken the floor up in the master bathroom and reinforced the joists. “Too much support in retrospect,” he would say.
“You can’t have too much support,” said Peggy.
Stephen’s father was working sixty-hour weeks at the Sloan Automotive Laboratory, as always. But on weekend afternoons John worked side by side on the carpentry with Stephen.
Taking his time, Stephen hunted for a house in Back Bay, South End, Charlestown, South Boston. His mother still wanted to work on the next one as his partner. He figured that they could afford something at six hundred thousand, which was a stretch. He did not think Peggy was quite ready for that number, but he planned to prepare her gradually.
The master bathroom was taking much more time than Stephen had expected—in the end it took nine months to finish. When he told me that part of his story, later on, he seemed embarrassed. “At first I was trying to work by myself, which I should know better than to try and do, because I can’t do it. I can’t motivate myself to work without someone else there. Very hard to get started. Whenever I work by myself it’s a dismal failure.” Stephen would futz upstairs for a few hours and then drift down to the den to watch daytime TV, or down to the Cave to play Quake. He could still hammer with his right hand, or use a screw gun, even a nail gun, though it seemed to kick worse all the time. But his right arm was getting weaker and he began to see muscle weakness and thinness in his arm, all the way up to his elbow. Even his bicep and tricep looked thinner.
To follow up on his condition, Stephen made an appointment with Robert Brown, a neurologist at Harvard Medical School and Massachusetts General Hospital. Brown is one of the best neurologists in the country. He also happens to be the world’s leading specialist in ALS, although that is not why Stephen chose him. His practice is busy, and Stephen had to wait a few months for the appointment. He still was not worried—he and Wendy were too busy falling in love. They had many dinners at Jae’s, the little sushi place where they had their first date. They spent every weekend at her place, and many nights down in the
Cave, and a few at little New England bed-and-breakfast places. On November 28, 1998, Wendy wrote in her journal:
The year is so close to over. This year went faster than the last, but what a wonderful year it has been….
I have relaxed so much around Stephen. We are exclusive now and it is shaky and wonderful as we inch out each feeling and look for the other, touching cautiously, but happily. It feels right and it never has before with anyone. How happy I am with this man.
On December 16, 1998, Stephen reported to the clinical neurology lab at Massachusetts General Hospital for what he expected to be a forty-five-minute checkup—a few routine tests before his appointment with Doctor Brown in January. Almost one year had passed since he stood outside his first house with the key in the door.
At the lab, a young neurologist inserted a needle in Stephen’s bicep and asked him to flex it while he watched the electrical output on an oscilloscope screen. The neurologist kept the screen tilted at an angle so that he could see it but Stephen could not. He tested both of Stephen’s arms thoroughly with two-inch needles, then his legs, his groin, and even the back of his tongue. He also stuck a needle into the muscle between his right thumb and forefinger, where the palm had atrophied. He tried that spot again and again but he could not get any reading there at all. With an electrified skullcap, he jolted Stephen’s body in a crescendoing series of shocks. All of these tests were extremely painful, and they took five hours. The neurologist kept calling in colleagues to look at the results.
Stephen tried to keep his voice casual.
Did you find any damage?
Yeah, I see some weird stuff here, the neurologist said. From the man’s expression, Stephen could tell that he did not want to say another word. He told Stephen that Doctor Brown would deliver the diagnosis at his next appointment.
Stephen got himself out of the hospital and headed west toward Newton. On Storrow Drive, he picked up a cell phone that he had borrowed from his parents and called Jamie.
Jamie was working when the phone rang. His office mate Joe Gally had already gone for the day. He was alone.
Things had not gone as well at the Neurosciences Institute as Jamie had hoped. He had decided that the place was too far ahead of its time for Wall Street. He still thought the best moneymakers he had going were the projects he kept in his desk drawers, the Internet start-ups. He could leap to glory someplace else. Melinda had not found a teaching job with her new PhD and she had never felt at home in La Jolla. The night before Stephen’s call, she had been feeling as aimless feeling as aimless and restless as Jamie. She had been waiting for a call for a job interview at the next annual meeting of the Modern Language Association, and she had gotten no calls. Her last entry in her journal the night before had dwindled down to a to-do list. “I should take Jamie to work tomorrow & get his presents.” (Jamie was about to turn thirty-two.) “Return library books to UCSD…Buy wrapping paper. Keep pretending to try to write academic article so that I get other stuff done. I ’spose.”
That afternoon, a venture capitalist in New York had phoned Jamie about a job. It was a much richer offer than the institute could ever hope to match. The call had made Jamie feel lonely and jangled. Usually he spent a good part of the day hanging around the espresso machine. Now he could not talk about what was on his mind with anyone out there.
Stephen was another reason that Jamie wanted a change of scene. At least carpentry gave his brother some distraction. For Jamie, working at the Neurosciences Institute meant thinking nine to five about all the things that can go wrong with nerves and brains.
He felt particularly fretful that afternoon, wondering about Stephen’s checkup. While he waited for his brother’s call, he worked on his résumé. Under “Experience,” he typed on the first line, “The Neurosciences Institute,” and added, grandly, in italics, “Unraveling the Mysteries of the Brain.” Under “Interests,” he typed “travel,” “sailing,” “construction,” “renovation,” and “family.” Under “Objective,” he put a question mark.
When the call came, Jamie grabbed the phone.
So what did they find?
Well, it doesn’t look good. There’s damage in all four limbs.
Jamie and Stephen tried to sound unflappable. They were The Boys: They kept their voices clipped and terse to spare each other’s feelings. But they both knew what the news meant. The moment Stephen hung up, Jamie turned back to his desk. He closed his résumé. He started a search on his computer.
Then he typed the keywords “prognosis” and “ALS.”
Of all the pathologies in medical textbooks, amyotrophic lateral sclerosis is one of the most painful diagnoses for a doctor to deliver and a patient to receive. It has been a death sentence ever since its discovery a century and a half ago by Jean Martin Charcot. In France it is still called Charcot’s disease. In America it goes by the name of its most famous victim, Lou Gehrig.
In ALS, nerves in the spine begin to die one by one. These are what are known as the motor nerves, because they carry signals from the brain to the muscles of the body. Without signals from those motor nerves, the muscles wither and atrophy. As more nerves die in the spine, the body becomes progressively paralyzed. The damage travels up and down through the spinal cord until it reaches the brain stem, which controls the muscles that allow a human body to breathe and swallow. Even then, patients remain wide-awake and fully conscious. They can still see and hear, feel and reason. They watch their muscles wither away until they can no longer breathe, and they suffocate to death. “There does not exist, as far as I am aware, a single example of a case where, the group of symptoms just described having existed, recovery followed,” Charcot wrote.
The search engine PubMed took only a second to scan its tens of thousands of biomedical references. Jamie’s computer screen filled with the titles of scientific papers, and Jamie clicked on the first one. Now the screen displayed the abstract of a study from the University of Amsterdam in the Netherlands. He skimmed it. The study reported that most ALS patients die within two years of their date of diagnosis. Those patients whose first sign of weakness is a difficulty in breathing or speaking have the poorest prognosis, because in those cases the nerve damage has begun in the brain stem. Messages are no longer reaching the muscles in their chests and throats. They often die within months. Those patients with the best prognoses are young men with initial weakness in one limb and a long delay between the first sign of trouble and the diagnosis. Those patients often live five or six years.
With a shock, Jamie realized that he himself had detected the onset of the disease when he arm wrestled with Stephen at Duck. That was in July of 1997. He knew that no one else on earth could have been that accurate in measuring the strength of his brother’s right arm. No one else on earth would ever have detected a problem then. The earliest that any doctor would probably have noticed anything would have been later, maybe that fall.
Seventeen months had passed since he had beaten Stephen with his right hand at Duck. So in the categories of the Amsterdam study, Stephen was a young man with initial weakness in one limb and a long delay between the first sign of trouble and the official diagnosis. That meant he might still have four years to live. But how long before he was paralyzed?
Sitting alone in his office, Jamie scrolled through abstract after abstract on the Web, trying to guess how long his brother still had to walk and talk, and searching for hopeful notes. He read about riluzole, the only federally approved ALS drug. Riluzole was reported to postpone death an average of three months.
It was a bad moment to be searching the Web about ALS. The Web was full of news about it in late 1998. Just that fall, Jack Kevorkian, “Doctor Death,” had killed a man in Michigan on 60 Minutes. Tom Youk, who restored and raced vintage cars, could hardly talk or write but he had convinced his family and Doctor Death and the television audience that he no longer wanted to live. Kevorkian had chosen to televise that killing because he was convinced that this was one case in which the world
would have to agree with him about the merits of euthanasia. Youk was paralyzed and terrified as he watched the advance of his ALS. Kevorkian was now in jail for murder.
That year, about twenty-five thousand people had ALS in the United States. Five thousand new cases were diagnosed, and five thousand died. The number of people with the disease would be much larger if it gave its victims longer to live. On his computer screen, Jamie found ALS patients’ Web pages recommending the removal of fillings from teeth. They posted a whole carnival of notes on the Web about healing circles, acupuncture, snake venom, and bee pollen. Some of these patients were already gone but their Web pages were still there.
One of the biggest bestsellers of 1998 was Tuesdays with Morrie by the sports writer Mitch Albom, the story of the last days of a Brandeis professor who died of ALS. The book had come out the year before—the same year that Stephen noticed his first symptoms. It was an inspirational book but it was also full of horrible news about what was in store for Stephen. “ALS is like a lit candle: It melts your nerves and leaves your body a pile of wax….”
Morrie had lived and died in West Newton, Massachusetts.
As Jamie searched the Web, small thoughts kept threatening to swamp him. He had never really cared about arm wrestling. He did not give a damn about arm wrestling. But for years he had been trying to get better than Stephen at basketball. Now he would never have a chance to win one-on-one in a fair fight.
Not everyone could have done a systematic Web search like that just after hanging up the phone. Most people would have lost it. Jamie called Ben in L.A., and Ben curled up on the floor and cried. Jamie called Melinda, and she drifted out of their apartment and into a New Age bookstore, the Psychic Eye. Later on she wrote an essay about that moment. “It was the closest thing to a church on Pearl Street,” she says. She wandered past sticks of musky incense and mystic candles, shelves of paperbacks on feng shui and homeopathy. She remembers skimming a book called Prayers for Every Occasion, but she could not find a prayer for this one.
His Brother's Keeper Page 7
