I’M PREGNANT.
Later on I told that story when I stopped in Providence on my way home. My mother was the first to laugh. So apparently my father was right—she really was still there. And when I told the two of them about Stephen’s continuous loop: “ALEXANDER…” she laughed again. Over the years she had come to care about Stephen and Jamie, too. It was slightly awful to realize that she was still aware, inside her frozen face, but it was good to share another laugh.
In Newtonville, while Stephen and I talked, Alex leaned against my legs and watched the video. When his cartoon was over, I picked him up and flew him around the room, turned him upside down. “I’m keeping Alex.” I really did want to take him home. There was another robot command:
THROW ALEX HIGHER!
At the door, I said good-bye to Wendy, and to Alex. Then I looked over and Stephen raised his eyebrows slightly by way of good-bye. Somehow it felt perfectly satisfactory, that good-bye, because I felt it was perfectly satisfactory to him.
Stephen reclined there in his automated chair with the late afternoon light streaming in his skylights, and I felt, he got where he wanted to get, he has what he wants, and he is there. That day it was Jamie I feared for. Stephen, impossible as it seemed, was happy and comfortable right where he was.
Acknowledgments
I owe many people thanks, and the Heywood family most of all. They welcomed me into their lives during the kind of crisis that no family should have to face, but very many do. Special thanks to Melinda Marsh Heywood and Wendy Stacy Heywood for letting me read and quote from their journals. The book is done now, but I continue to learn from the Heywoods.
Ralph Greenspan, of the Neurosciences Institute, introduced me to Jamie Heywood and helped me follow the story as it grew. Arnie Levine, when he was president of Rockefeller University, invited me to explore the edge of medicine as writer in residence. The Alfred P. Sloan Foundation helped to fund my research for this book; many thanks once again to Doron Weber.
My agent, Kathy Robbins, saw the power of the Heywoods’ story from the beginning. Kathy is superb with books and the whole world around them. At The New Yorker, Charles Michener edited my profile of the Heywood brothers, “Curing the Incurable.” Thanks also to David Remnick, who faxed me encouraging words at the eleventh hour. At Ecco Press, Dan Halpern helped from start to finish with warm and wise advice. This book would not be what it is without his help.
My father encouraged me in the writing of this book in spite of his deep sense of privacy. He would much rather have kept our own story in the family, and I hope he will feel that the cause was good.
A few friends read the manuscript and made innumerable helpful comments: Andrea Barrett, Bobbie Bliss, John Bonner, Ralph Greenspan, Shirley Tilghman. My sons, Aaron and Benjamin, put up with my long hours, as always, and they made valuable suggestions, too. So did my extended family, and my friends in Bucks County.
At the Heywoods’ family foundation, ALS-TDF, special thanks to Robert Bonazoli. At Princeton: Harold Shapiro, Peter Singer, Lee Silver, and the students of my seminars in science and literature. At Rockefeller: Betsy Hanson, Alice Lustig, and all my students there. At Arizona State University, where I spent a happy semester as a visiting professor, warm thanks to my friends Rick Creath and Jane Maienschein, and to our students. At Jefferson: Matt During and Paola Leone. At Johns Hopkins: Jeff Rothstein.
Special thanks also to Jacques Cohen and to Günter Blobel, who gave freely of their time and help.
Thanks to Gail Schmitt, who provided cheerful and competent help with research. Thanks also to the late Lynn Forbes, who transcribed many hours of taped interviews for this book from her home on Cape Cod. She is missed. And thanks to my cousin Jay Weiner and his wife Er-Dien. Their home in Santa Fe was a warm and beautiful place to finish this book.
I benefited from the reporting of many other writers. Special thanks to the science writers of the Philadelphia Inquirer for their powerful series of articles about Jesse Gelsinger’s death.
In quoting from Lucretius, I used and freely adapted the work of many different translators, including Thomas Creech, Anthony M. Esolen, Rolfe Humphries, and W.H.D. Rouse.
For many kinds of help, I thank Steven Ascher and Jeanne Jordan, Roland Beckmann, David Colter, William Haseltine, Slawa Lamont, Sven Lindblad, Astrid Lueders, Alan and Monika Magee, David Magnus, Peter Mombaerts, Sanjay Nigam, Rabbi Sandy Parian, Tony Perry, Oliver Sacks, Thomas Schwartz, Kambiz Shekdar, Agata Smogorzewska, John Steele, LeRoy Walters, Michael West, and Steen Willadsen. I interviewed more than 100 scientists whose names do not appear in this book, and I thank them all. The book is richer for those conversations. Many thanks to the photographer Martin Schoeller for his remarkable pictures of Jamie and Stephen Heywood, and his generosity to the family. Christopher Potter of Fourth Estate read two drafts of the manuscript and made excellent suggestions.
I am grateful to everyone on the talented staffs of The New Yorker, Ecco Press, and the Robbins Office. At The New Yorker, special thanks to the fact checker Nandi Rodrigo, and to Charles Michener’s assistant, Erica Youngren. At the Robbins Office, to Sarah D’Imperio, David Halpern, Sandy Bontemps Hodgman, Rick Pappas, and Teri Tobias. At Ecco, to Jill Bernstein and Robert Grover. The book was lucky to have Claire Vaccaro as its designer, Lyman Lyons as its copy editor, and Mareike Paessler as its senior production editor. David High and Ralph del Pozzo of High Design designed the perfect cover.
And I thank my wife, Deborah Heiligman, the closest reader of each draft, and each book, first and last.
About the Author
Jonathan Weiner’s books have won the Pulitzer Prize, the National Book Critics Circle Award, the Los Angeles Times Book Prize, and many other honors. While working on His Brother’s Keeper, he was writer-in-residence at Rockefeller University. He lives in Bucks County, Pennsylvania, with his wife and their two sons.
Also by Jonathan Weiner
Time, Love, Memory
The Beak of the Finch
The Next One Hundred Years
Planet Earth
Credits
Jacket design by High Design, NYC
Copyright
Portions of this book, in different form, first appeared in The New Yorker.
Extract from They Long to Be Close to You, by Burt Bacharach and Hal David © 1963 (Renewed) New Hidden Valley Music (ASCAP) and Casa David Music (ASCAP) All Rights o/b/o New Hidden Valley Music administered by WB Music Corp. All Rights Reserved. Used by Permission. WARNER BROS. PUBLICATIONS U.S. INC., Miami, FL 33014.
Czeslaw Milosz’s poem “If there is no God” reprinted by kind permission of the author.
HIS BROTHER’S KEEPER. Copyright © 2004 by Jonathan Weiner. All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins e-books.
EPub © Edition JULY 2004 ISBN: 9780061760358
FIRST EDITION
10 9 8 7 6 5 4 3 2 1
About the Publisher
Australia
HarperCollins Publishers (Australia) Pty. Ltd.
25 Ryde Road (PO Box 321)
Pymble, NSW 2073, Australia
http://www.harpercollinsebooks.com.au
Canada
HarperCollins Publishers Ltd.
2 Bloor Street East - 20th Floor
Toronto, ON, M4W 1A8, Canada
http://www.harpercollinsebooks.ca
New Zealand
HarperCollins Publishers (New Zealand) Limited
P.O. Box 1
Auckland, New Zealand
http://www.harpercollinsebooks.c
o.nz
United Kingdom
HarperCollins Publishers Ltd.
77-85 Fulham Palace Road
London, W6 8JB, UK
http://www.harpercollinsebooks.co.uk
United States
HarperCollins Publishers Inc.
10 East 53rd Street
New York, NY 10022
http://www.harpercollinsebooks.com
His Brother's Keeper Page 35