After my first meeting with Matt During, I had stood in the living room in Providence, looking at my mother. She was sitting in the old wing chair holding the Providence Journal rigidly in front of her, which she did now for hours, staring at the same spot without moving either the paper or her eyes. I knew that if I let myself feel it, the excitement and the responsibility of the healer would be almost intolerable. And in the same instant, feeling that abortive rush, I knew from the very pressure of my excitement that it was wrong, that it was juvenile.
The real question was, what did my mother want to do? But that month she was suddenly too out of it to make the smallest decisions for herself. On that visit I tried to force the conversation by going over my parents’ living wills with them. She had signed one a few years before—no extraordinary measures to keep her alive if her brain was so irreparably damaged that she could never again be herself. She seemed to be following the language as I read it aloud, but when I came to the line about brain autopsies she looked away. At the kitchen table, our eyes met, my father’s and mine. This is too much for her.
Could I do it to her, when she had always been so wary and disliked science as far as I could tell, considered it something she could never understand, something for her husband and her sons to chatter about or her husband and his engineering friends with their perpetual talk of puzzles, problems and problem-solving, reasoning things to bits. Could I sacrifice her against her will? Just getting her out the door to the senior center a few blocks away from the house was a production now. During and his team would need to do at least one brain biopsy and possibly several before they prepared the neurovaccine. A brain biopsy is not a trivial procedure. And then the vaccine would almost certainly do her no good and might do her harm. Dad and I would be making her our little science experiment. It was repulsive to think about.
She was declining fast that month and my father and I were both upset. When I called home, oh, that repressive formality.
“How is she?”
“Well, she is not so well today, Jonathan.”
Right. Well, I’m glad I called, Jerome.
And god knows how my own voice sounded to him. We were not doing so well as a family. When I brought up the idea of a neurovaccine with my brother Eric in New York, I got a frown that I had come to call the Fortified Forehead. He and I could talk about almost anything but Providence.
I had felt that one moment of electric excitement, standing in the old living room by the wall of bookshelves that she had had built, and the old staircase, a little shabbier now, the whole room shabbier with the rugs taken up because she tripped on them, and the new railing running up the stairs. My mother sat bent over in the old wing chair, her wheelchair waiting next to it.
The rat with its whiskers twitching and its belly shaved and the golden spot, where the shot went in.
For what? Not for her. For the science she had never liked. It was too late to explain it to her. If she ever could have gone there, she could not now. She had been sick for a long time, and very angry and frightened. That night, in Jamie’s old room, I remembered a scene that was, and I hope will remain, the worst moment in my life. Once, years after her fall in Vermont, but before I knew how bad she was—although my father knew—I was alone with her in the kitchen. She was chopping up a chicken at the cutting board on the counter with a sharp knife. I could see from her back that she was upset about something, and I went up quietly beside her and put my hand on her shoulder. She was hacking and stabbing at the chicken. I stood there at the kitchen counter with my arm frozen around her shoulder and watched her stab that raw meat with the knife. She turned to look at me. And I saw—taking it in slowly—that her face was livid, pale and flushed at the same time. I realized, incredibly slowly, that after all those years of too much painful sensitivity and insecurity and that weird secret hidden anger, she had now gone mad.
My poor mother was not Ponnie and she was not my mother. The magician of the kitchen had vanished, and the protective or overprotective mother and grandmother who held my boys’ hands in New York City with what we used to call the Grandma Ponnie Grip.
“You fucker,” she said. The voice was not hers. She growled a rage I had never heard before and words I never thought she knew. She cursed me and everyone in the house in a storm that was much larger than she was, some of it incoherent and some pretty clear. She was utterly lost from this world. If she had been in the room with me, she would have been more horrified than I was. But I kept my arm around her shoulder and she put down the knife.
Then all of us were standing together in the kitchen, my father, my wife, my sons, my mother, while she wailed a wail that meant the abandonment of the universe, the universe we build for ourselves and one another with such hard work for all our lives together, constructing and reconstructing the world of things as they are. It was a howl from a place where nothing is true, where nothing is the way things are. I see now what it was, what I felt then, though then I could only feel it: the horror of a world without supports—for me, for her, or for any of us. The horror of the unbuilding of everything.
Lying in bed, wide awake at two or three in the morning, I read The Happy Isles of Oceania by Paul Theroux, whose journeys in the folding kayak had not gone very happily.
Jamie Heywood’s adventure was an outsider’s race, I thought, but it was in the style of the whole of biomedicine in the last year of the millennium. It was part of that sense that life could now be engineered and health be engineered; that the study of life and the treatment of disease were passing into problems of engineering. “Given such a view,” Oliver Sacks writes in his book Awakenings, “one can conceive the possibility of affecting a single point or particle, without the least effect on those surrounding it: One would, for example, be able to knock out one point with absolute accuracy and specificity.”
Illness makes us all yearn for that kind of magic cure; even those of us who are well feel the pull of it, because all of us share the feeling that we have fallen somehow from a state of perfect health and wholeness, a state of grace we once possessed. Sacks writes, “We had something of infinite beauty and preciousness—and we lost it; we spend our lives searching for what we have lost; and one day, perhaps, we will suddenly find it. And this will be the miracle; the millennium!”
Jamie had chosen an injection of DNA as the Elixir of Life that could save his brother and his family. It was at once a promising idea and part of the general genomania. The worldview of the genetic engineer lends itself to a kind of mysticism about the world, a vision of reality as a network of bits and pieces. “The therapeutic correlate of such a mysticism,” Sacks says, “is the notion of a perfect Specific, which has exactly the effect one wants, and no possibility of any other effects.” Sacks gives as one example the drug that Paul Ehrlich tried in 1909 for the treatment of syphilis, a drug that its promoters and enthusiasts called “The Magic Bullet.” A Magic Bullet is the ultimate techie dream and Jamie was building it. Magic Bullets are sacramental medicines, Sacks writes, in which we can see “the amalgamation of genuine needs with mystical means, the mistaking of an infinite, metaphorical symbol for a finite, ingestible drug.”
What if I fired that bullet at my mother? My God! Science with a vengeance!
Sacks writes, “We may expect to find such ideas most intense in those who are enduring extremities of suffering, sickness, and anguish, in those who are consumed by the sense of what they have lost, or wasted, and by the urgency of recouping before it is too late.” A man in such a state becomes desperate for regeneration. “And it is at this point, when he is searching, here and there, with so painful an urgency, that he may be led into a sudden, grotesque mistake….” Then he and his doctor may plunge into unreality together.
Yes. It was the sensation, the conviction, of a grotesque mistake that kept me awake that year in the late middle of the night—as if hope itself had become a nightmare from which I was trying to escape.
We were all in that state and so was Ja
mie, who was besides a wild-eyed entrepreneur in a wild-eyed year. Were we plunging into unreality? There was no way to find out except to try the experiment. Turning the light on and off in Jamie’s old room, trying to close my eyes and keep them closed, I worried about Stephen, and my mother, and I wanted Jamie to fire his Magic Bullet—as if one superhero with one bolt from the future could save us all.
Twenty-Six
Denial Is in Egypt
By the time I made my way downstairs in the morning, John had already left for MIT on his bicycle. Peggy served me a wonderful breakfast in the sun porch, just off the kitchen, the room they called the solarium, and she and I fell into a long, comforting talk. By my second or third mug of coffee I felt much better. I told her how impressed I was that Jamie, an outsider to biology, could make a plan to save Stephen and figure out how to make it work.
“That’s what engineers do,” she said warmly. “You don’t need A’s in physics to be an engineer. You need to know just enough about how it all works to use it to solve your problem.”
While we talked, Stephen and Wendy stole up from the basement and tiptoed through the kitchen, trying not to interrupt. Stephen had the slacker attitude in his very posture, a slight sort of adolescent slouch that went with his T-shirt and stubble, and had nothing to do with ALS. He was still a well-built man, though both his arms looked as if they were losing strength. Wendy was barely half his height. She was blond, round-faced, and pretty. She was on her way to her job in Cambridge at a Harvard biological laboratory.
An hour later, Stephen and I made plans for the conversation I wanted to have. For the New Yorker article, I wanted a big deposition: his telling of the story. We were talking down in the Cave. A big canvas of Stephen’s leaned against a wall: a Swiss Army knife, in oils. Stephen had painted it at home one summer when he came back from Colgate. “I don’t care for emotional or expressive painting,” he said. He showed me a small watercolor he had made in college, a close-up of a pulley.
Neither of us was feeling comfortable about our day together and where our meeting was going. Neither the carpenter nor the science writer was prepared to work on a story this emotional. Looking at that pulley, I could see that between the two of us, we were going to have to figure out a way to get at things from a distance, from a tangent. I could not just ask Stephen, “How does it feel to know you are dying?”
But I liked Stephen very much. He was not feeling sorry for himself. He was not even particularly preoccupied with himself, even then. Stephen had his interests and they were not Stephen. He asked me about my home in Bucks County. He knew the place because he had worked on the Victorian in Yardley for Jamie and Melinda, remodeling their bedroom. I told Stephen that too much of the county’s farmland was turning into acres of schlock McMansions. Stephen said, “To me, that’s the great American tragedy, the loss of open space.” And he added, “I’m sure other people would find other things to feel sad about.”
That day Stephen had to go to the hardware store and a lumberyard in Wellesley. He was making a bookshelf for his parents. He had to buy a saw, and some veneer, and one or two other things. We decided that he would tell me his story while he ran his errands, and we got into the truck.
“OK, so start from the beginning?” he asked. “Just battle on?” And he chose to begin with the story of his first house, the project in Palo Alto. He was just digging the foundation when we stopped in the parking lot of a GNC. Stephen was taking Metamucil, Creatine, and riluzole, still the only drug the FDA had approved for ALS. Riluzole is a glutamate blocker. If Jamie’s gene therapy project worked, it would install billions of EAAT2 pumps in Stephen’s synapses, and they would pump away that excess glutamate. Stephen also picked up some Coenzyme Q-10 dietary supplements. Above the shelves, there were big blowup black-and-white photos of smiling, healthy, happy people.
“Incredibly expensive,” Stephen said as he limped to the counter. “Insurance doesn’t pay for a cent of it. But everyone with ALS takes them. You know, what the hell.”
At the counter, Stephen dropped his credit card, keys, and wallet on the floor. He had always been klutzy, he said, but he was getting worse. “What I really should do is mail-order my stuff. I just haven’t gotten that organized. I keep saying that I need to get myself a daily regimen that involves the vitamins I take every day and all the medicines, as well as a little bit of time for meditation or exercise. But I have not managed to do that yet.”
“Well, everything’s in flux right now.”
“Yeah. But I’m not so foolish as to assume that therefore it will not remain so!” he said, with a dark laugh. “I keep telling Wendy that things will become quieter eventually, but then I realize that may not actually be the case. So perhaps we should just learn to steel ourselves to the inevitability of chaos.”
Back in the truck, Stephen returned with obvious relief to the challenges he had faced in the foundations of his first house. “Very, very complicated,” he summed up cheerfully. “So that was a lot of fun figuring that out.”
He drove around Newton, Newtonville, Newton Center, Newton Corner, and West Newton, stopping here and there to show me his favorite Victorians. By the time we reached the hardware store, Stephen was explaining the landscaping of his house. From the way he relived it day by day, I could see that it really had been a work of art more than a house for him. He was not an ordinary carpenter. More than a little of the academic had rubbed off on him even as he rebelled against it. Newton’s apple had not rolled that far from the tree.
Before we got out of his pickup truck, he confided to me that he still felt very insecure when he went into a hardware store or a lumberyard. “They’re old and gruff and they know,” he said. Maybe it was an age thing, or maybe it was a blue-collar thing. This surprised me, because he talked blue-collar himself. But in the store I could see that he really was from a different culture—my culture. He was comically polite and professorial in asking his questions, even apologetic. “Sorry. Excuse me. One more thing—oak laminate?” he asked a spindly teenage clerk. Then he apologized to the kid again and asked if he needed something special to trim the laminate. “Nah,” the clerk said brusquely. “Just use a razor knife.” Stephen bought an edge trimmer and a roll of cherry veneer for the bookcase.
Now that his errands were done, we drove around some more in the truck. I thought it was getting time to talk about his illness, but he turned instead to the brass hardware that he had bought for the windows of his house in Palo Alto.
Finally I said, “Maybe that’s enough about the house.”
“OK,” Stephen said. He gave me a sheepish and awful grin. At last he began to tell me about the weakness of his hand as he tried to turn the key in the front door, and the doctors’ tests, and all the rest of the saga. Of all the topics in the world, this was the one he liked least.
“It’s weird, I don’t know,” he said. “You always hear horrible stories about the doctors saying, ‘You’ve got two years to live.’ But I never felt like I was thunderstruck or anything like that, and it’s not like I expected anything like this to happen to me. I guess I was like ‘Oh, OK. Things are gonna change a little bit,’ but it wasn’t like ‘Holy shit, my life is over.’ I never had that feeling that a lot of people report, that bang, you know? I don’t know why that is. I guess with this disease, it’s a little bit like carte blanche—you can do anything you want. I mean, it sounds terrible, but you’re like, ‘Oh, my whole life has changed. What do I do now?’ I was feeling healthy as a horse and I was like, ‘Well, shit, I get to screw around for like five years.’ You know?
“My real first impulse is, ‘Oh, I’m gonna screw around for the rest of my life.’ So I’m not really involved in what the foundation is doing. The fact that Jamie’s doing this—it’s like he’s taken my responsibility. I mean, I really do feel like that. And he’s not only doing it well, just doing an incredible job. So I feel liberated. If when all this is said and done, you know, this is how people remember me, they can say, ‘W
ay to go, Steve, look what happened.’ Whereas I won’t have had that much to do with what happened.”
“You won’t have had much to do with it?”
“I mean, when I’m dead and gone, and people are looking at what I’ve done with my life, I can add this on, even though I didn’t do it, exactly. The amount of energy that Jamie is putting into this constantly—and Melinda, too—is in itself phenomenal,” he said. “Because they don’t have to. I mean,” he said, with a painful humility, “I know that’s why you’re writing the story.”
He parked the truck outside another house he admired in West Newton. The street reminded me of College Hill in Providence, with Victorian masterpieces on every block. Sitting in the truck, staring straight ahead through the windshield, Stephen said, “Jamie’s not always that focused. I mean, this level of focus is incredible. So I can think a little bit that he’s doing it because it’s exciting and he loves it. But that’s not all, that’s not it.
“So you think to yourself, what is his driving force? You can tell by his time line. He’s not interested in doing stuff that takes a long time, and there’s a reason for that. I mean, he’s trying to do it bang! And obviously he’s not making any money or whatever. Although it’s not gonna put him into the poorhouse. But, every day! If I had to get up and do something every day, I’d have to have a pretty good force driving me.”
Stephen glanced at me. I saw that he was trying to make a speech for the record, to do what he had to do for his brother, to say, a little stiltedly, the one thing he least wanted to say out loud.
His Brother's Keeper Page 22
