His Brother's Keeper

by Jonathan Weiner

“You are promising me.”

  “I wish that I could.”

  “At the moment, it doesn’t feel that I will get past it.”

  The next week I drove up to Providence, and from there, with dread, to Newton. Jamie was waiting for me in his office at the foundation with the sign on the glass: “Time Is Neurons!” He told me that they were investigating the claims of a doctor in Puerto Rico about gamma globulin. The doctor claimed to have tested it on six ALS patients. “If you believe the data, four out of the six have significant slowing of the disease. We’ve started a mouse study. The data from what’s been done so far with humans is unclear. It’s not even really a study—only four months or so.”

  He told me that he had gotten gamma globulin approved in eight hospitals in the United States for compassionate use. “If it works or not, I don’t know. But we’re managing clinical sites across the country, sharing our experience with everybody. This puts us in a weird quasi-regulatory role.” Jeff Rothstein, in Baltimore, did not approve. “Jeff is mad at me,” Jamie said. “He thinks I’m out of my mind, I’m going to hurt somebody. But what’s the ethical response? At the moment, we’re drawing the boundary where patients want us to draw it. Their decisions are their own. We’re giving them information.”

  “Will Stephen try gamma globulin?”

  “Maybe we should. The problem is, if Stephen does it, about two hundred others will.”

  “Why?”

  “Well, everyone wants to know what he does. They call and ask.”

  Jamie and Stephen had become leaders in this adventure, just as they used to be in the laser tag games in the nights out in the woods when they were kids in Newtonville.

  We drove over to Stephen’s Cape Cod cottage.

  “Stephen’s a mess,” Jamie said. “You’ll be fairly shocked.” They were still praying for some long shot to work. They needed a new road, he said. Going through the stem cell adventure had taken a lot out of all of them. “You can try three or four things, then you can’t do any more. You become wary of investing hope. So you get conservative. And ALS hasn’t gone slowly with Stephen. He’s progressed much faster than I expected.”

  I knew what he meant about investing hope. I had invested and lost, and I felt it would be painful to hope again—but it was also painful to be there without hope. As we walked up to Stephen’s door, I confessed to Jamie that I was nervous to see him again. “Do I try to hide my feelings?” I asked.

  “I always reach out to take a patient’s hand, even if he can’t lift a hand himself. I ask, ‘How are you?’ ”

  “Okay.”

  “You can be honest. It pretty much sucks.”

  Stephen’s small house had an addition in the works. There was a smell of plywood. I greeted Wendy and her new baby, Alex. It was a little while before I noticed a man in a wheelchair in the living room. He was wearing a baseball cap. The man was so thin and motionless and he was so low to the floor, sitting in the chair, that I had not spotted him. I did not want to stare, but even when I glanced once or twice at his face, and saw him staring at me, I was not sure it was Stephen.

  I said hello. Of course it was Stephen, and of course I did find it hard to talk. Stephen said very little, too. He looked skeletal, and I think he was accustomed to letting old friends get used to the sight of him.

  Jamie and Wendy showed me around the ground floor of their house in progress while Stephen wheeled after us. The wheelchair was motorized, with a control panel under Stephen’s right hand, and he followed us on the tour of his new house. Stephen said something so softly that I did not know he was talking to me. Jamie translated. “Stephen asked you if you’re getting the new titanium Powerbook.”

  Stephen looked at me and raised his eyebrows by way of a smile. Then he spoke, and Jamie spoke with him in simultaneous translation.

  “ ‘So, Jon, this is the former garage….’ ”

  The bedroom was dominated by the steel bed that Paola’s check had paid for. It was a fine bed. Stephen gave me another wry, charming look as Jamie showed me all the fancy equipment around it, one machine to help clear his phlegm, another machine to help him breathe. Stephen raised his eyebrows and widened his eyes a little, and grinned, though those muscles did not cooperate very well anymore. It was as if he were saying, Wow, huh, but with irony and good humor. He was still there.

  Jamie, Stephen, and I headed out to a restaurant, Stephen leading the way in his wheelchair. He had found a shortcut through the woods. He had a rakish, Huck Finn style even now, I saw, even in this motorized wheelchair, hustling along through the woods.

  “You need Weedwackers with that, Steve,” Jamie said.

  Steve said something and Jamie translated for me: “I don’t really know where this ends up.” The path had woods on the right side and a steep drop on the left.

  “Do you worry about rolling off the left side?” Jamie asked.

  Stephen ignored him, rolling at a good clip. We hurried behind him.

  “How would I actually stop you if you did?” Jamie asked.

  Stephen said something that sounded like, “If I could ride a Harley-Davidson, I can ride this.” I was beginning to be able to understand him.

  “So now I know if you disappear for a few hours where to find you,” Jamie said.

  We hustled along in silence through the woods.

  “So I saw a lot of wheelchairs on Sunday, Stephen,” Jamie said. He had given a lecture to a big audience of ALS patients.

  “How’d it go?”

  “Amazing in some ways. But I felt a little uncomfortable. As if I were a motivational speaker.”

  “Yeah.”

  “I don’t know. It’s almost like they cared more that I cared than that I was making progress,” Jamie said. “I felt uncomfortable about it. I’ve got a new line in my office: ‘Negative language, strong data.’ Be very neutral in our language. Steve,” he said, “you need to wash your chassis.”

  We came out of the woods and I saw that we were just around the corner from a restaurant, Naked Fish, a trendy upscale place in Newton. The place had a wheelchair ramp, and Stephen rolled up. Everyone in the place studiously and politely avoided looking at us as we progressed to our table.

  Jamie talked about the gamma globulin doctor as he fed Stephen shrimp.

  “What’s he like?” Stephen asked.

  “Good-looking. Smart. Very smart. He’s saying some patients got better. My intuition is screaming at me to watch out. He has patients writing articles to the world saying, ‘This works!’ Most doctors would call that unethical.”

  Stephen got a disgusted look on his face. There is a sick king in Shakespeare’s All’s Well That Ends Well who has persecuted time with hope, and has lost hope with time, and has abandoned his physicians. Stephen had not abandoned his physicians, but he looked very tired.

  Thirty-Nine

  The Scream

  In August of 2001 my father called to tell me that my mother was wailing one word over and over all day long: “yes.”

  I could hear her in the background as we talked, and I wondered how my father could stand it. But Dad was holding on. “Even now she really seems, much of the time, quite rational,” he told me, while from the next chair in the sitting room I could hear her crying “yes, yes, yes.”

  Poor Dad tried to keep the conversation normal. Sometimes my mother could still get out a few words besides “yes,” he said. And he told me the latest story about Grace. By this time, I had persuaded Dad to hire someone to help him with my mother. In Allentown, I had located a woman who had experience caring for the elderly and good references. Grace was willing to move to Providence if she could bring her sixteen-year-old daughter. So I had driven Grace and her daughter up to the house and helped them move in, and now my mother hated Grace.

  My father told me that earlier that week the four of them had sat down to dinner, Grace and her daughter, my father and my mother, my mother repeating “yes, yes, yes.”

  My father said, “Grace, this is good
chicken.” And Mom stopped wailing for a moment. “He’s just being polite,” she said.

  At the end of the meal, Grace smiled. “Well, Mrs. Ponnie, how did you like the chicken?”

  Again my mother stopped wailing for a moment. “C plus,” she said.

  By the time I could take a train to Providence, a week later, the wails had turned into screams. The screams were even harder on my father, with his sense of decorum and his Old World horror of dementia. He hated to think that the neighbors must be hearing her through their windows. The weather was stifling that August, but he kept all the windows closed.

  When I got to the house, Grace was feeding my mother Cheerios with a spoon at the kitchen table, and my mother was screaming. The whole house was filled with her rage and protest, a sort of animal protest that did not seem to comprehend much of the world—not this world.

  The house was baking in the heat with the windows closed. We ate our lunch together, my father, my mother, Grace, and me. My mother’s eyes were a dull gray, almost colorless. I wondered if even the color of her eyes could have changed. The whole house felt weird. As we began to eat, my mother wailed again. Then Grace happened to look down at the floor.

  “Oh, I’m sorry, Ponnie,” she said, with a laugh. “I didn’t know that was your foot. My foot touched hers,” she explained to my father and me. “I thought it was the table.” That was why my mother was wailing just then, to tell us about the latest torment from Grace. We all chuckled, and my mother joined in with a kind of complicit giggle. She thought it was funny, too.

  After lunch, Grace took my mother up to the sitting room on the second floor so that my father and I could talk downstairs in the living room. The wing chair in the living room belonged to my mother now. He sat down on the couch by the window. I took the love seat by the wall of books that I had helped to unpack from their boxes when we first moved into that grand old house: the shelves of Boswell and Johnson, the first-edition Ulysses, the poets, the rows of dictionaries and reference books that he had needed at one time or another: Russian, Italian, French, German, Latin, Yiddish, English.

  Even from there, with the sitting-room door closed up on the second floor, I could hear that expression of longing, the yowl that began as the most conversational, casual, calm “yes,” and then rose and rose, sometimes in anger, sometimes in rage, sometimes in grief or in a somewhat softer sadness. When a cat or a newborn baby wails like that, you wonder how they know how to hold your attention so well. They vary themselves just enough that they force you to follow every note and syllable. They change each tone and note and beat of their complaint and you cannot tune them out.

  We went up to the sitting room to see her. The wooden case of the old Encyclopedia Britannica, the volumes inscribed to my father by his father, was stacked high now with dozens of books of poetry, biography, history, some of them my father’s and some he had borrowed that month from his favorite library, the Providence Athenaeum. He did a lot of reading while he sat there with my mother. The pages of the new edition of his Statistical Mechanics of Elasticity lay scattered now in my brother’s old room, on his desk and on his bed—all over the room, where my father had encamped to help with Mom. My mother was there in the sitting room in her chair by the air conditioner, screaming, or as my father put it, vocalizing. He went straight to her and gave her a loud buss on the cheek. I could tell he thought he was being tender, but the kiss looked and sounded angry. And then another smack. “So, Ponnie, how are you?” he said, and I could see how angry he was. He had just gotten a little taste of his good life, talking about books in the living room. Now back to those four Victorian wallpapered walls with his vocalizing wife.

  For years, my father had tried to keep her illness as private as he could. Most of my mother’s friends did not know that she was sick, and he discouraged those of them who did know from coming to the house. He worried that even the visits of our family disturbed her. When the phone rang—his friend Jan Tauc was calling from Brown to plan a lunch—I watched my father on the white phone in his armchair in the sitting room, hunching over and wrapping his fingers around the mouthpiece, trying not to let Jan hear his wife scream in the other armchair five feet away. Each “yes” started quietly and morphed into a rising wail that kept going in a horrific way, that long loud involuntary yes, like an acceptance that does not want to accept.

  Yes! Yes! It was like the denial of every affirmation. It was almost worse than death itself.

  I unpacked my suitcase in the guest room. Even through the closed doors of the sitting room, the guest room, and the guest bathroom, I could still hear her. When I finally walked back toward the sitting room, there was Dad coming out and closing the sitting-room door behind him. We faced each other at the top of the front stairs.

  “I can’t take this anymore,” he said.

  “What do you want to do?”

  I looked at him. We were standing eye to eye on the landing. I had no idea what to expect. The only act that could help her now would be to do for her what I had once begged her not to do to herself. I was ready for anything.

  “Let’s go to the Athenaeum,” my father said.

  So we drove over to the Ath. It was closed. There was a hand-lettered white card on the door: “The library is closed due to excessive heat.” My father returned a thin book of poems through the drop-off slot, and we trudged very slowly up College Hill to Brown’s Rockefeller Library, the Rock. There, I looked up Lucretius in the computer catalogue, and we found him in the basement stacks on the B floor. We each chose a translation and sat in two carrels side by side underground, reading passages aloud to each other. The stacks were very cool, and deserted.

  My father had picked a translation by a scholar from Providence College, where Ponnie had once worked as a reference librarian. He opened to a page at random and read something about “the atoms slashing into her cheek.” What was the poet saying? We puzzled through it together. The atoms feel no pain, even if we do feel pain. He read the line again. Then he read on aloud, grinning with professional amusement to hear a voice from ancient Rome discussing atoms, laughing to hear a poem in which the idea of atoms sounds new and controversial—and, of course, laughing with cabin fever, with relief at getting out of the house. It amused him to hear Lucretius argue that atoms cannot feel anything, even though we human beings feel so much.

  “Well,” my father said, “I think we’d agree now.”

  Forty

  First and Last

  On the morning of September 11, 2001, the sky was very blue. I was sitting in my home in the Pennsylvania woods, reading a book called Immortality: How Science Is Extending Your Life Span—And Changing the World, by Ben Bova.

  “You might be one of the immortals,” the first page said. “Particularly if you are less than 50 years old, in reasonably good health, and live a moderate lifestyle, you may live for centuries or longer.” I was forty-eight, so I just qualified.

  While I was reading, I heard a knock at our front door. I heard my wife’s voice answer it, and I heard the voice of the chimney sweep—he had come to clean the chimney, which had caught fire a week before. The chimney sweep’s voice sounded agitated, but I kept reading. “Prophecy can be a tricky business, as many weather forecasters and stock market analysts can attest,” Bova said. “Moreover, human nature tends to accept gloomy prophecies as probably correct, or nearly so, while optimistic prophecies are usually harder to accept and are often greeted with: ‘That’s too good to be true!’ ”

  Bova had been an aeronautical engineer before he turned to writing science fiction and science fact, and he was positive that the challenge of immortality was nothing but a problem in engineering. “In an expression borrowed from the world of aviation, how far can we push the envelope?”

  My wife found me and told me to come to the living room. I was surprised to see the chimney sweep standing in the middle of the room, watching our TV. The screen showed the image of a plane hitting a tower.

  I put my book d
own. At the end of that day, I looked down and noticed the book still lying there on the coffee table.

  At Rockefeller, my students’ eyes had a naked look that fall. We all felt we were under siege, all under the sword together. And when the anthrax letters began arriving, it seemed likely to everyone in the country that the next great attack would be biological.

  To us, that shock was almost as horrible as the first, though we should have known it all along. Biology could be as dangerous as physics, and genetic engineers could make cells worse than bombs. They could kill New York and leave the towers standing. The science of life was as charged with good and evil as the science of the atom had been in the century before. The whole subject, all our new hope and dread, seemed to float above the city in a dome of unknown dust. Some invisible hand might already have chosen death for us all. In the esplanade the very radiance of the morning, the mist between the crowns of the sycamores, might be particles of death.

  In my office I could not sit on the sofa or read at my desk for more than a minute at a time. One line or two and I was back at the window. I was sick of the Path of the Explainers.

  “Pro Bono Humani Generis, For the Good of Humankind,” was the motto on the centennial banners that hung that year from the wrought-iron lampposts. The young scientists and doctors wore the same motto on the shoulder patches of their white lab coats as they hurried on the paths below my window, under the branches of the sycamores. The esplanade was also lined with sculptures that the Museum of Modern Art had lent Rockefeller in honor of its centennial and the new millennium. Not one of the sculptures had a human form. Most of them looked like models of atoms and molecules, discreetly chained to the ground.

  I had a private motto: “First and Last.” I wanted what I had seen and felt when I was small to have some connection with what I would see, learn, and know in the end. I thought the whole human race wanted something like that. The beginning, middle, and end should make one unbroken story. The stem should lead up to the rim of a cup from which we could drink and still be ourselves.