By now, Jamie could not talk or think about anything but the gene therapy. At home Melinda went on writing miserably in her journal. “Boundaries are the central issue,” she wrote on December 19. “It is difficult & I want to flee the scene. I could bear it all if…if…if only.” If she had privacy. Or if she could hope to have privacy someday. But the baby was coming and they were restoring the carriage house next door for Stephen and Wendy, and the race would go on. “And the if only is Stephen—if only we could be sure to cure him & his disease. Instead of feeling that I am growing a life within, I feel I am dying too. We are all dying as this happens. I can’t stand it. Hemmed in. No way out. Marriage must be preserved, but my vigilance is crucial.”
They dug two trenches, his and hers. Melinda’s line was, What about me? What about the baby? What about us? Jamie’s line was, You’re making it harder for me to save Stephen!
To Jamie, the gene therapy was the best and almost the only hope, though he and Matt were racing now with other treatments, too. They talked more and more about stem cell injections. Jamie was not sure he wanted Stephen to be the first ALS patient to try that procedure. And as it happened, another patient who was following Jamie’s race liked the promise of the idea and decided to try it with his doctor. It was Steve Fowler, the L.A. musician whom Jamie and Stephen had met at the very start of their adventure. By now, he and Jamie were friends. Steve Fowler’s doctor injected one hundred million cells into his spinal fluid over a period of two days. On the second day, Steve Fowler lost sensation in his lower limbs. But after two hours the feeling came back. He noticed no other symptoms, and they all waited to see what would happen.
Stephen was weaker now. He and Wendy loved Back Bay, and they were very happy together. Wendy got pregnant. But as they furnished their apartment, the stairs were a strain. The woman on the floor below them complained that she could hear Stephen as he thumped across the bare wooden floors. His footsteps sounded heavy and dragging. She demanded that Stephen and Wendy buy rugs. They went out and bought enough eight-by-ten-foot carpets to cover almost all of their floorboards. As Wendy lugged the first carpet roll up the stairs, Stephen limped behind her, empty-handed and embarrassed. Their neighbor on the first floor smirked at Wendy.
You seem to have the short end of the stick.
When I called one morning to check in—“What’s new?”—Stephen apologized for his mood. He was a little grumpy, he said. Their neighbor one floor down was still complaining. That morning he had tired himself out trying to cut mats for the rugs.
Suddenly his breathing sounded very labored.
“What are you doing now?” I asked anxiously. “Still working on the mats?”
“Ah, no, no, no,” Stephen said with a weak laugh. “No, I’m just rolling over.”
He told me that he felt more and more willing to do something experimental, and sooner rather than later. He had begun telling Jamie, We gotta get going! He was the one who was racing now, he said, and he laughed weakly again.
“So, that’s new.”
My calls to Providence were just as alarming. My mother found it harder to walk, talk, or handle the telephone. She often preferred Yiddish now, the language of her parents in Brooklyn when she was a girl. My father would hold the phone to her ear, I would ask her how she was, and then the three of us would wait. We were all happy if she managed to say, “A miesele, a meisele.” So-so.
Early in December, I heard back at last from her neurologist, Stephen Salloway. He wrote a brief e-mail to say that he would get in touch with Matt During.
An editor at Time asked me to write something for a special millennium issue, “After 2000.” He sent me a long list of essay questions, including “Will We Run Out of Gas?” and “How Hot Will It Get?” with one question circled for me: “Do I Have to Grow Old?”
I called my mother. I thought she might be amused. “What do you think of that? ‘Do I Have to Grow Old!’ ”
There was a long pause. Then, in a Yiddish-like singsong, my mother replied, “I wouldn’t recommend it.”
One of Robert Bonazoli’s sisters made an emblem for the foundation. Jamie and Melinda sent me one with a note of thanks for the work I was doing. It was a long, old-fashioned golden key with an angel’s wings, “The Key of Hope.” My mother would have called it a chochka. I kept it on my desk.
At the Heywoods’ second fund-raiser, a Christmas concert in Boston’s Jordan Hall, “A Concert in the Key of Hope,” Stephen told the crowd that since his diagnosis he had met many ALS patients in various stages of the disease. “No matter what stage you’re in,” he said, “you always think, ‘As long as it doesn’t get any worse I can handle this’…. I think the key is hope. I know my own progression has been slower because I have hopes for a cure in my lifetime.
“Remember that music is good medicine. So sit back, open wide, and enjoy the medicine.”
As the crisis advanced, Stephen got closer and more solicitous of Wendy, while Jamie and Melinda drew further apart. Melinda tried hard to be understanding, but one night in late October she dreamed that she had kissed Jerry Seinfeld. She confessed the dream to her journal: “He had refreshing peppermint breath & a warm moist mouth that was lovely to explore….”
A few nights later, after her big fight with Jamie, she had a dream involving Adam Sandler. He wore a thin, well-worn, sweaty cotton T-shirt. “We spent the night cuddling chastely on his bed. Adam stroked my hair and held me humidly, and I felt like I was back in high school again.”
Late in December, she had a third dream. She thought about it all morning at her desk at the foundation. This time she had sex with Jon Stewart, the host of Comedy Central’s The Daily Show. That morning at her desk, while she recorded donations, sorted mail, and wrote notes, she realized what the dreams meant. “My waking life has become so serious, so tragic, that I must resort to sleeping with comics in my dreams.”
At my own desk that December, I was farther away from the tension. But I was drafting the article for The New Yorker now, and I was calling Providence more often than Providence wanted me to call. I kept picking up that golden key with the angel’s wings and staring at it. I felt oppressed, depressed, overwhelmed. I wanted to escape. As the year ended, I went back to the Galápagos, this time with my wife and our boys. We saw in the new millennium there.
Part Five
The Sudden Fall
The whole house seemes in whirling motion, The fixed columns turning round, and all The turning roof threatens a sudden fall.
LUCRETIUS
Thirty-Four
Fires
In the first week of January 2000, I arrived at Rockefeller as writer in residence. That same week ninety-nine years before, the first grandchild of John D. Rockefeller had died of scarlet fever. Now, of course, the place was one of the capitals of an empire. Rockefeller had given scientists a place to stand, and they had moved the world.
My only official duty was to teach a seminar to the young biologists and medical students, “Parallel Lines: Science and Literature.” The students were working at their laboratory benches for twelve or fifteen hours a day. I was there to give them an excuse to read.
It felt strange to me at that moment of crisis, when things looked bad for the Heywoods and for my parents in Providence, to arrive at the point of origin of the Neurosciences Institute and so much of biomedicine. Rockefeller was in a celebratory mood that year because it was approaching its centennial, and hundreds of millions of dollars in donations were pouring in from the descendants of the Rockefellers and Astors who founded it.
It was very strange to arrive at the point of origin of so much hope in the middle of private despair, and like Jamie I searched for hopeful signs.
Standing at the window of my office on one of my first days there, I happened to look out exactly at noon. A tall man with a ruddy face and a head of thick white hair was strolling down the esplanade from the northern gate on 68th Street. A few elegant dogs with long pale fur pranced around him. Just belo
w my window, which overlooked the center of the esplanade, he paused for a moment, leaning forward. I saw him stare straight ahead as if he were taking in the long alley of the old sycamores and the laboratories. He looked as if he were receiving some private message about the way behind and the way ahead. He straightened his back, raised his head, expanded his chest, and his face flushed. He wore a dark, dashing coat—a garment with a foreign accent. Somehow even his pose had a foreign accent. He stood there as if the rows of sycamores that framed the esplanade had suddenly turned into triumphal arches, and the stone columns, the ivy, the laboratory windows and hospital windows around him had just delivered the old imperial salute: Live Forever!
I knew it had to be Günter Blobel. At that moment when I saw him below my window, he could have been elected mayor of Dresden. Everyone in Dresden knew him on sight: the tall man with the great mass of white hair like the head of a Corinthian capital. He was a hero who against incredible odds had tried to heal a hurt as nearly cosmic as we can imagine on this earth. He was sending a signal of a kind, and it had an effect in the tortured city he had seen in its last days of glory as a boy. He had begun shuttling back and forth, raising money and helping to plan the regeneration of Dresden. He was helping the city rebuild itself, and better, to rebuild its image of itself from a symbol of absolute evil and total loss to a symbol of hope, the recovery of hope in the face of despair.
During the Heywoods’ crisis and my family’s crisis I did a lot of standing at my office window. Every day at noon the man would stroll down the esplanade with his prancing dogs. Every day he would pause under my window and stare ahead with that same look of more than mortal pleasure. For me he seemed like a figure from the old romance of pure science—for me and for many people at other windows along the esplanade. He had to know that he was being watched, but he did not seem to mind, and neither did he seem vain in his parade. Well, maybe a little vain. But somehow he moved as if, as private as his moment was, we were all involved in the procession. He had kept the faith, and anyone looking out and seeing him there would keep the faith with him.
My desk was a section of a big L that had been sawn apart. It was hideous and filled most of the room. But in front of the window there was an old writing desk with gold leaves of ivy around the cracked leather top, and brass clawed feet on wheels. I placed a little edition of Lucretius ceremonially in the center of the desk. There was also a big leather sofa with brass nail heads. When the intellectual-property lawyer stopped by from down the hall, she said, “Oh, that’s my sofa.” She had donated it to Rockefeller. She also knew Jamie Heywood. She had talked with him about the patent on the EAAT2 gene. She asked me, “How are those boys doing?”
Downstairs in the president’s office, I felt subversive when I talked to Arnie Levine. I knew Arnie from Princeton—he had built and run their department of molecular biology. When Arnie left Princeton to run Rockefeller, he invited me to come. Arnie knew what I was writing about. He told me that he despised the hype and flimflam around gene therapy and regenerative medicine. I once asked him about William Haseltine of Human Genome Sciences (“Hype artist…”). Sometimes I thought that when Arnie read my story, I would be out the gate.
On January 13, 2000, the institutional review board at Jefferson voted to support Jamie’s gene therapy protocol. If the protocol was approved that spring by the RAC and the FDA, the first trial could begin in June. But on January 21, the FDA announced that it was shutting down all of the University of Pennsylvania’s gene therapy trials because of eighteen procedural irregularities in the trial that killed Jesse Gelsinger. The FDA stopped eight trials, experimental treatments for cystic fibrosis, muscular dystrophy, lung cancer, skin cancer, breast cancer, and brain cancer. The university began an internal inquiry.
Biotechs put their gene therapy trials on hold. Some universities canceled theirs. So did the Muscular Dystrophy Association and the Cystic Fibrosis Foundation. In early February, the Senate subcommittee on public health held a standing-room-only hearing on gene therapy. “The oversight system is failing us,” said LeRoy Walters, director of the Kennedy Institute of Ethics at Georgetown University, and former chairman of the RAC. The gene therapists were supposed to be reporting problems to Washington and they were not. There had been almost seven hundred incidents, known in the RAC’s jargon as “adverse events,” in gene therapy trials. Some of them were serious side effects and some of them were seizures and fevers that dying patients might have suffered anyway. But only thirty-nine of these incidents had been reported immediately to the NIH. Most had been reported only after the death of Jesse Gelsinger.
“I think the oversight system is failing to prevent serious violations of patient protection,” said Senator Bill Frist, who was convening a hearing into the death. “Let’s have full transparency in the system.”
Jesse Gelsinger’s father, Paul, flew to Washington again for that meeting. He was following the proceedings closely, and he was beginning to realize that he had been as green and innocent as his son. By now, he said, trying to keep control of his voice, he felt that he had been misled. “Looking back, I can see that I was fairly naive to have been as trusting as I was.” He was shocked and badly hurt. “The concern should not be on getting to the finish line first, but on making sure no unnecessary risks are taken, no lives filled with potential and promise are lost forever, no more fathers lose their sons.”
Paul Gelsinger sued, and the University of Pennsylvania settled with him for an amount that was not disclosed. Insiders guessed it was about ten million dollars.
Everyone’s gone crazy,” Matt During said at Jefferson. He was getting hundreds of calls and e-mails from colleagues, reporters, and patients. Some of his patients, especially the parents of Canavan babies, were terrified because they thought the FDA was stopping all gene therapy trials. It was not. Matt reminded me that the virus they were hoping to use for ALS was very different from the one Wilson and his team used in Gelsinger’s trial, and that it was widely considered to be safe, although any protocol that required repeated injections into the spinal cord carried enormous risks.
The death was tragic, Matt said. But why was the coverage on all the front pages? The edge of medicine is dangerous by definition. Matt was outraged that his whole field was being blamed and damned for one death. He often thought of the time he had been planning to treat a Canavan baby with his gene therapy, and the baby’s parents decided to try a bone-marrow transplant instead. The baby died. If a nine-month-old child had died in his gene therapy trial, it would have made a scandal. But a death in an experimental bone-marrow transplant made no headlines, because bone-marrow transplants were not bolts from the future. No one ever called for a ban on bone-marrow transplants. So why should one death kill gene therapy? It was very sad, but it was also the very first death in a gene therapy trial.
Jamie felt the same way. He told me that he was disgusted by the scandal. He saw it as a symptom of a sickly society, a world grown so conservative, so timid about the edge of medicine, that it could hardly take a step. “From the first day you could just see everything that was going to happen,” he said. “How people would take sides. Day one, you were going to hear the line ‘The responsible members of the field say we should slow down to ensure this does not damage the field of gene therapy.’ It was entirely predictable who would stand up and pontificate. And who would get killed.”
Stephen and Wendy waited in their fourth-floor walk-up. Their political problems were local. In her memoirs of life with Stephen, Wendy writes a little more about their downstairs neighbor. Not long after Stephen cut pads for the rugs, she says, he tripped on the edge of one of them and crashed into the bookcase. Within minutes, their neighbor downstairs was rapping at their door. Stephen had always been polite to her. But this time, he hurried to the door and flung it open.
“I am hearing an awful lot of noise from up here,” the woman said.
Wendy, from behind Stephen, watched their neighbor peer into their apartment to
see if they really had bought the rugs.
“I have a lot of work to do,” the woman said, “and I wonder if you could keep it down.”
“I’ll try to do my best,” said Stephen. And then, Wendy writes, she felt her calm young husband begin to break. She wanted to walk up and put her arms around him. She could see it all in his tall, broad back, as clearly as if she could see his face. All his agitation at his falls, and the crisis in his brother’s race, and the knowledge that they would soon have to give up their dream of living alone together in Back Bay, the knowledge that he was bringing a child into a world that he might soon be leaving—she felt Stephen feel it all, and she felt him begin to lose it.
His voice climbed an octave and strained and cracked the way it did when he got upset. He told their neighbor that he had Lou Gehrig’s disease, and that it was hard for him to walk because his legs were weak. The rugs made it even harder for him to maneuver, Stephen explained, because he could not always control his feet to lift them up. He kept tripping over the edges.
“I didn’t know that,” their neighbor said.
“No, of course not,” Stephen said. “How could you?”
“God knows you never took the time to ask,” Wendy hissed from behind Stephen.
“Well—” the woman said. Wendy thought she might have looked uncomfortable for just a moment. “Try to keep it down.”
One week later, Wendy writes, their good neighbor downstairs was having some work done on the roof of her bay window. “Sparks from the roofers’ blowtorches flew onto the roof and smoldered all day in the hot sun. By late afternoon they had turned into a blazing fire and ravaged her apartment. She had to move out for renovations.”
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