“Who sings the song of the way things are?” Lucretius wrote in 55 B.C.E. “Who has the wings to soar on these discoveries?” I thought a thousand years must have passed since I had felt like singing.
Once I had longed for wings. Now I needed a new place to stand. Sometimes all I could do was stand at that window.
Forty-One
The Carriage House
That’s it?”
My wife Deborah had heard me describe the carriage house and she had expected something grand. Now she was surprised at how small and shabby the place looked. It was the summer of 2002. The carriage house was half dismantled and even the Victorian looked bare. The paint was peeling and it sat awkwardly on its plot of land, now that the carriage house behind it was almost gone. Most of the facade of the carriage house was stripped away and there were brown, bare plywood sheets nailed up on it.
We had driven up to Providence and then to Newtonville with my family in our green Volvo—our whole family, including Tinka, the dog.
We got out of the car. It was a day with a New England fall in it, a broken, bright, and mackerel sky, heavy white clouds with the sun breaking through again and again. Peggy Heywood sat by the carriage house, watching the two babies, Stephen’s and Jamie’s. Alex and Zoe were two and almost three. The babies sat on a pile of beams, eating purple Popsicles. Alex had fallen and cut his lip. It was bleeding. The Pops were to console him and chill his lip. A little red blood stained his Popsicle.
Our dog went bounding all over to greet everybody. The kids were excited. Slowly the dog settled down.
“The front of the carriage house needs to be rebuilt,” Peggy said. “Because they found rotten beams. It had no known means of support. But all the walls are sound above a certain point. So it looks terrible, but whole areas won’t need much work.
“The plan is, the ground floor will be Jamie’s tools. The second floor will be Melinda’s dance studio. She has a troupe, she could do choreographies. And the top could be an artists’ and writers’ studio.
“Someday,” Melinda said, joining us from inside the house. “Stephen was optimistic about the time. I don’t anticipate working in there soon. Maybe a year.”
“There’s a spider living in my wood,” Zoe said.
Melinda said, “She’s always going, ‘my wood.’ She thinks this is her wood.”
Alex waved his Popsicle. “I throwed the spiders away.”
“They are like twins,” said Peggy. “They have a wonderful time together. And because Zoe is five months older, and girls are usually advanced compared to boys, he speaks incredibly well for two.” He was always asking Peggy for his tools. “Here’s your screwdriver,” she told him the other day.
“That’s not a screwdriver. That’s a chisel,” he said.
“Yes, the tools are plastic, but that’s not his preference,” Peggy said. “In his favorite picture of himself, he’s holding a drill and a mallet. The mallet [with a big rubber head] is the safest hammer we can give him. His favorite tool is a drill. He knows how to use it, so we keep the drill bit out.”
Stephen’s two young apprentice carpenters had disappeared inside the carriage house, and we could just hear a voice from inside, speaking in a kind of robotic monotone. There was something odd about the sound. It was almost a chant, “Om Ah Hum.”
“A voice enhancer,” Melinda explained to us. “He has had it about a month.”
When Stephen rolled up to us along the uneven ground in his wheelchair, his head lolled loosely and terribly from side to side. He and I went for a walk, Stephen rolling along through the streets at a gentle pace so that I could keep up. There was no traffic. I said I was still learning to talk with him. He stopped the chair in the middle of the street and looked up at me. Even with the voice enhancer, talking was hard: His face strained with effort and he looked me right in the eye. It was painful to watch him strain. I wanted to turn politely away, but if I did then I could not understand what he said. I had to keep my eyes locked on his and watch him carefully. This forced me to face what he was facing and hear what he was saying, and he was putting all he had into saying it.
“Try yes or no,” he said, with grimaces of effort, staring into my eyes, straining with what looked like a great physical ordeal to make those muscles move and talk. He was pale, with his black hair short-cropped.
I asked him if he was still comfortable with my writing about him. He stopped the wheelchair again in the middle of Hyde Road and looked up at me. With our eyes locked like that, his face seemed to me to grow huge, gigantic, immense. But it was the effort that was immense—the intensity of the work. He seemed to swell until he was as large as all human effort.
“I’m fine,” he said.
We rolled on. It took me a while to realize that when he spoke to me he was not stopping the chair in the street just for emphasis. Talking was such hard work for him now that he had to stop the chair to concentrate. When I asked him what it was like, he said, with the hint of a smile, “It’s tiring.”
A little later he stopped the wheelchair again, turned it to face me, and looked up.
“How’s your mom?”
Stephen was as sensitive and observant as ever, concerned about everyone around him. He often thought his disease was harder on others than it was on himself. But he had learned not to say that aloud—for some reason, it made his mother fall to pieces.
Stephen was still Stephen. He was not about to get religious now, just because he was dying. The more he lost, the stronger he seemed to those who knew him well. He subscribed to what has been called the theory of normal accidents. On every construction job, there is a chance that one ridiculously small mistake—one number dropped from the blueprints, one bolt dropped from a beam—will start a crazy chain of events and bring down the whole house. That is what had happened somewhere inside his body. The same thing happened to about 5,000 Americans a year. His illness was a normal accident, and he refused to mythologize it.
Stephen did not mythologize Jamie’s race, either. He did not lie awake at night counting over all the miracles that had helped his brother do what he was doing. Jamie’s job at the Neurosciences Institute; his insane techie pride; their family pride, their being Heywoods together: Jamie had built amazing things from those beginnings, and Stephen was still convinced that his brother would find a treatment or a cure, maybe after Stephen himself was gone. But there was nothing supernatural about any of it. That is how big things always start. They have to grow from a couple of lucky little things. They are normal miracles.
Of course, Stephen was much too considerate to dwell on his atheism with Wendy, or his parents, or Jamie. His feelings were summed up in a little poem by Czeslaw Milosz, “If there is no God.”
If there is no God,
Not everything is permitted to man.
He is still his brother’s keeper
And is not permitted to sadden his brother
By telling him there is no God.
Back at the carriage house, Stephen asked Peggy for lunch, and she took two cans from a pouch in the back of his wheelchair—Ensure, a liquid diet.
“Easy cooking,” said Peggy.
She poured a can into his stomach tube, a pale chocolate-colored liquid going down the funnel and into the tube and right into his stomach. It was a strange sight, repellent and commonsensical. “Straight in,” said Peggy.
“Mom, what do you want to do?”
“What do I want to do? I’m at your disposal.”
“Where’s the boy?”
“Where’s the boy? Inside, with Melinda and Zoe.”
Stephen said something I did not understand.
“You want to take a nap?” asked Peggy.
Stephen wheeled his chair into the carriage house and stopped on the center of a plywood square on the ground—the only flooring there was. The whole ramshackle place was over his head. He pressed buttons on the arm of his wheelchair, and the legs came up while the back went down, with quiet, competent whirs.
He grinned toward me as he did it. He was showing off his gear.
Lying there in the middle of the carriage house, which gave more shade than shelter, reclining in his chair, Stephen looked so helpless that I hesitated to leave him. After a moment he opened his eyes and saw the expression on my face. Making the same giant effort as before, he said what he had always been saying. “I’m fine,” Stephen said.
Forty-Two
Throw Alex Higher
Melinda took two beds. All the pictures, and all the bookcases, I notice,” Jamie said. It sounded as if he had not been looking around much. It was September 2003. He would come home late from the foundation, flop down, and then run out the door in the morning. The Victorian was a mess. An old pal from Advent who had lost his job was living downstairs and buying the orange juice.
“There’s a Circus Flora poster,” I said.
“One left,” Jamie said thinly. “There were two.”
I noticed a big antique wardrobe of Melinda’s, her costume bureau. Its two big doors were tied together with a sort of leopard sash or scarf. But the doors were ajar, and inside I saw empty hangers, with no show business left. On the walls there were still a few posters of Melinda or her mother belly dancing, posters with the type faces in Greek, Arabic, Cyrillic.
There were bare nails going all the way up the stairs. And at the head of the stairs, in a chaos of toys, a naked Zoe, who was at Jamie’s place that night: “Daddy! Daddy! Where are you?”
“Yes, Zoe. Yes, Zoe.”
“I need someone to come up with me,” she cried fiercely.
Melinda had left for a small apartment in Waltham, where she hoped to restore herself and write. When he could, between crises at the foundation, Jamie was reading a book titled Divorce Remedies, which he liked for its problem-solving approach.
Jamie was having a hard time. The collapse of the technology bubble was long since complete. Thousands of computer engineers and genetic engineers were out of work, hundreds of foundations were going under. It seemed like the end of the end when Dolly died. She had a case of arthritis and a tumor in her lung. Her Scottish vets put her down on February 14, 2003.
That year, Jamie was on the road every week to fund-raise. He had now lost his money, his wife, and most of his old friends. Many of the young activists and idealists who had joined ALS-TDF in the start-up days were gone, too. Some of them Jamie had fired as he changed direction—he managed the foundation as aggressively as he drove a car. Others had quit because they thought he changed direction too often.
I could not quite forgive Jamie myself for the flat way he told me, one afternoon, about the fate of the project that had drawn me to his cause five years before. “The EAAT2 gene therapy is dead clinically,” he said. His tone was all business. I think Jamie had put off letting me know for as long as he possibly could. He listed the reasons for his decision. The results from the lab tests of EAAT2 had not been strong enough to justify the risks of the operation. Washington was still hostile. For the time being, the whole field of gene therapy was a world of hope and disaster. Jamie claimed that in the end he had made a simple managerial call. “I’m very good at pulling the trigger.”
Jamie had lost some hard battles, but he had also won a few. As the volunteers and activists left his foundation, he had hired people with experience in Big Pharma and biotech. He now ran the biggest animal drug-screening program for ALS in the world. That year, ALS-TDF was testing two drugs intensively. One was Ritonavir, a drug the FDA had approved to treat HIV, the virus that causes AIDS. The other was hydroxyurea, a drug approved by the FDA to treat sickle-cell anemia. Both drugs slowed ALS—slightly—in mice.
Jamie had expanded the course he called ALS 101. He taught it in Boston and across the country, many weekends a year, to hundreds of patients and their families and friends. Many of the people who came to hear him started foundations of their own to raise money for Jamie. That year two professional golfers, Tom Watson and Jeff Julian, launched “Driving 4 Life” in honor of Watson’s caddy, Bruce Edwards, who had ALS. The “4” stood for Lou Gehrig’s uniform number. Proceeds would go to Jamie’s foundation.
Jamie had now raised 12 million dollars. He was a leader in a growing movement of patient activists who were energizing the study of nerve death and regeneration. That year, the research seemed to be accelerating everywhere. Jeff Rothstein published the results of an important gene therapy experiment for ALS, and Matt During published another for Parkinson’s. Rothstein was still working on EAAT2. So was Dave Poulsen, out in Montana. None of them thought they would cure the incurable overnight, but all of them were working hard.
Jamie put in twelve hours or more a day, seven days a week, and he had taken himself off salary again. In spite of all his longings for the house on the hill and the Aston Martin, he did the right thing. He agonized and agonized, and he did the right thing about the money.
When I asked Jamie if looking back he would do anything differently, he said, “If you ask me would I prioritize Melinda above those life-and-death decisions—no.”
In the kitchen, a map was tacked on the wall, “Biotech Cluster in Greater Kendall Square,” with the latest location of the foundation, below a faded color photocopy of the New Yorker photo of Jamie and Stephen. Melinda had tacked it up for Jamie before she left.
Jamie told me I was missing the point about the money. “If I could have figured out how to get rich, I would have,” he said. “I mean the real question is, what’s the best way to solve the problem? I think I did the right thing, but it’s the right thing in terms of—what’s the best way to go fast.
“I never had any qualms about getting rich.”
When we said good-bye, Jamie gave me a stare and spoke of his hopes for the next drugs they would test at the foundation. That year he always closed our conversations with a positive note, and that long, dark, piercing stare: “Maybe we’ll beat this thing yet.” And this is how it works, this is how we do beat these things at last—with some people working in the box, and others way out of the box. But Jamie’s foundation was broke. He was frantic to keep it alive. That year there was something terrible in his stare, as if he was disappearing into it, or felt himself disappearing. He saw none of his friends. Some weeks he did not even have time to see Stephen. He could hardly bear to look at Stephen now, and many people feared for him as if Jamie had become the dying man.
When I walked over to Stephen’s cottage on Beverly Road, I found him reclining in the living room in his motorized chair with a Stephen Hawking keypad beneath his hand, and his hand lashed to it by an elastic. Alex sat on the couch with Wendy, watching cartoons. Wendy had a bad cold. The last time a cold went through the house, Stephen had come down with pneumonia and Jamie had taken him to the hospital in the middle of the night. Now he looked very cheerful. They all did. Wendy told me that just before I walked in he had said to her, by typing on his keypad:
I FEEL LIKE A KING.
“HEY,” Stephen said to me. The robot voice of his computer was carefully chosen to deliver his sardonic zingers—his mordant one-liners—in the appropriate flourlishless flourish. It was late on a warm October afternoon, with warm sun, and the living room felt cozy, domestic, comfortable. He was enjoying his family, as comfortable at home as any young dad in a La-Z-Boy. In the living room that Stephen had designed with its cleverly angled skylights, the three of them were the soul of a young family at home.
“A blink means yes,” Wendy said. “A slight shake of the head, no. He has a whole list of Alexander commands on the screen. And he can put them on continuous loop, too.” He could repeat and repeat a command as needed.
Stephen called them up on his screen for me to read:
ALEXANDER NO VIDEO TILL YOU CLEAN UP.
ALEXANDER GET BACK IN BED.
ALEXANDER LIE DOWN UNDER THE COVERS.
ALEXANDER TURN ON THE LIGHT, AND GO PEE.
ALEXANDER NO MORE THROWING.
ALEXANDER NO MORE YELLING.
ALEXANDER BE CAR
EFUL.
“He can even read to Alex,” Wendy said. “He’s downloaded some books. Alex can sit in his lap, and Stephen can turn the pages of Where the Wild Things Are and read them aloud.” The computer displayed each page and read each word aloud.
Alex asked Wendy if he could watch a video. Wendy said, “Well, let’s ask your father, because he’s trying to talk to his friend. Stephen, can Alex watch a video now?”
Stephen blinked yes, and Alex went to put in the tape. Wendy said to me, softly, speaking over Alex’s head as he sat on the couch and watched, “He has no idea he’s powerless.”
“What do you mean?”
“If Stephen said no, Alex wouldn’t argue. He would just throw himself back on the couch and go Awww and that would be that.”
I told Stephen how much I liked the carriage house. It was almost finished now and it was quite beautiful. I waited awhile for him to type out his answer on the keypad.
IRONIC. BUILT THAT, WHILE MARRIAGE
COLLAPSED.
The flat voice suited his old, uninflected style of delivery. As I think of it now, it reminds me of that voice from the backseat as we were careering toward Matt During’s lab. “It’s us I’m looking out for.”
“Feels like we’re ‘instant messaging,’ ” I said, and waited for his reply.
FEELS NATURAL.
I took a chance and told Stephen about a dream. In the dream, I had received a letter from someone who knew him well. I had opened the envelope and read the letter. It said there was something Stephen had not told me and wanted to tell me. Even as I launched into this speech, I could tell from certain sardonic hints in his face that I was getting too schmaltzy for Stephen. His fingers worked at the touch-pad. His stomach shook and a sort of grin tried to happen on his face, and his eyes literally shone. I guess I should have known better than to get so earnest, or ask for famous last words. His body did not fully cooperate, but his stomach was shaking, his mouth and face were working, his paralysis squelching a full-bodied laugh. Did my dream mean anything? I asked. Was there something he wanted to say? The robot voice spoke:
His Brother's Keeper Page 34
