This book began to feel real after my very first phone call to my agent, Jim Levine of Levine Greenberg, gathered steam thanks to my dear friend, anthropologist/author Sally Merry, who guided me to Oxford University Press, and came to miraculous fruition thanks to my terrific Oxford editor, Abby Gross, and her energetic team.
Neuroscientist Cathy Bushnell, formerly at McGill University, now at the National Institutes of Health, and Kathy Kreiter get the credit for involving the International Association for the Study of Pain (IASP) as a co-publisher. The first Cathy was also “kind” enough to let her graduate student, at my request, subject me to pain tests in her lab to see how long I could keep my hand in ice water without screaming. IASP editor-in-chief Maria Adele Giamberardino coordinated the expert— and remarkably speedy—scientific vetting of all my chapters.
My semi-voluntary team of readers heroically read and commented chapter by chapter on early versions of the book. They include Alice Dungan Bouvrie, my swimming buddy who also distracted me regularly with good food and wine; Nils Bruzelius, my wonderful former science editor at the Boston Globe; Elaine Kaplan Dolph, my sister-in-law, who actually read the exercise chapter twice; University of Wisconsin pain policy analyst Aaron Gilson; Carey Goldberg, Globe friend, now WBUR/Commonhealth blog cohost and science writer par excellence; Diane Kaplan, my perceptive step-daughter; Christina Spellman, head of the Mayday Fund; and Cindy Steinberg, a most inspiring patient advocate. In a class by herself is Pat McCaffrey, an MIT-trained biologist who co-runs Harvard’s Pain Research Forum and who may have both a broader and a deeper understanding of pain than anyone in the world. She fact-checked every word, in record time.
Two other people in particular kept me sane and on track. One is my ever-patient research assistant, Amanda Paolitto, who must have said, “Just hit ‘edit undo’ ” a hundred times. It is to her credit that my thousands of endnotes are formatted right and correlate to the proper places in the text. The other is Victor Salvucci, my unflappable computer guru who responded to my distress calls days, nights, and weekends. My webmeister Steve Bennett was also invaluable and creative, as was my nephew-in-law, Andy Dolph, who helped me make the audio/video talk that goes with this book.
A special thanks, too, to Stew Leavitt, the tireless PhD science writer who puts out the beautifully written, meticulously fair, weekly newsletter Pain Treatment Topics.
During the five years that I worked on this book, I interviewed more than 200 scientists, physicians, lawyers, and policy analysts either in person or by phone—many of them, poor souls, over and over again. I also badgered them frequently with endless “Did-I-get-this-right?” emails.
I thank them all, of course, but a few in particular became heroes to me. One is June Dahl, another is Kathy Foley, and another, Myra Christopher. June Dahl, a neuroscientist-pharmacologist at the University of Wisconsin, is a charming, white-haired lady—and “lady” is the perfect word—who works 24/7 and answered my endless emails with even more endless essays. She has slogged away for three decades trying to fix the state and federal laws and regulations that govern opioids and probably knows more than anyone about how these drugs both help and hurt. If I were president of the United States, I’d put her in charge of this whole mess—and, even at 82, she’d probably take the job.
Kathy Foley, an attending neurologist at Memorial-Sloan Cancer Center in New York, has long been the leading voice in palliative care in this country and abroad. She has enormous political courage. In a calm, soft-spoken voice, dressed in her pearls and dignified suits, her blond hair perfectly coiffed, she stands up time and again in front of skeptical audiences and says what most pain doctors won’t admit: that failure to treat pain better, when the wherewithal to do so exists, is nothing less than torture.
Myra Christopher, a friendly, Midwestern people magnet who could network in her sleep, is a bioethicist at the Center for Practical Bioethics in Kansas City and was a member of the Institute of Medicine committee that wrote the blockbuster report on chronic pain in 2011. Since then, she has assigned herself the unenviable task of professional nudge, forming a small army of activists called PAAINS trying, despite formidable odds, to turn the IOM recommendations into reality.
As a longtime health columnist for the Boston Globe, I have turned to Dan Carr, a Tufts University anesthesiologist and another hero, as my go-to source for decades for clear, quick (“Help! I’m on deadline!”) information on pain. Dan is a deeply caring man who’s always too busy to explain things but does so anyway. Perry Fine, a University of Utah anesthesiologist, is also one of the most caring physicians I have ever met and has saved the lives of countless, suicidal pain patients with judicious use of opioids. His Utah colleagues Dick Chapman, David Bradshaw, and Lynn Webster were also very helpful.
Jeff Mogil, a McGill pain geneticist, is not only brilliant but incredibly organized, feeding me links to important papers mere minutes after I asked and tirelessly fact-checking my successive attempts to portray pain genetics accurately. He is a science writer’s dream.
Joe Martin, the former dean of Harvard Medical School, was encouraging from the outset. John Loeser, a University of Washington neurosurgeon, guided me patiently by phone as I tried to visualize the intricacies of neurosurgery. Scott Fishman, a University of California, Davis neuroscientist sent me such a nice email after reviewing one of my chapters that I taped it to my bookcase. Cliff Woolf, a pain geneticist at Children’s Hospital in Boston, was also repeatedly helpful and encouraging.
Vania Apkarian, Dan Barth, Mark Blumenthal, David Boorsook, Tim Brennan, Gary Brenner, Roger Chou, James Cleary, Mark Cooper, Ron Dubner, Kenneth Craig, John Kusiak, Lisa Loram, Michael Moskowitz, Anne Z. Murphy, Mary O’Connor, Phillip Pizzo, Donald Price, Kenneth Prkachin and Petra Schweinhardt, and Irene Tracey also spent more time with me than they really had. So did Inna Belfer, Fernando Cervero, Luda Diatchenko, Deb Gordon, Jerome Groopman, Ru-Rong Ji, William Maixner, Anne Louise Oaklander, Yoram Shir, Kathleen Sluka, Roland Staud, Larry Tabak, Steve Waxman, Julie Wieseler, and Hubert Yin.
If I remained befuddled by the devilishly complicated overlap of gender, hormones, and pain, it was not because Karen Berkley, Roger Fillingim, Michael S. Gold, Joel Greenspan, Frank Keefe, Linda LeResche, Jon Levine, and Richard Traub didn’t do their best to teach me.
Charles Berde, Celeste Johnston, Neil Schechter, and Lonnie Zeltzer pored over piles of heartbreaking research on undertreatment of children’s pain with me. I can never give enough thanks to Jill Lawson, the mother of little Jeffrey Lawson, the baby who died after heart surgery without anesthesia, for the hours she spent with me reliving those awful days.
I loved the interviews I had with researchers for the chapter on the mind–body in pain. Sean Mackey was just plain cool, sharing his excitement about neurofeedback. Sara Lazar inspired me with her work on meditation for pain. Ajay Wasan was a goldmine of information on pain and depression, as was Kurt Kroenke. Ted Kaptchuk was, as always, the undisputed master of placebo effects in pain. Penney Cowan, Rob Edwards, Tim Gard, Randy Gollub, Bob Jamison, Mark Jensen, Marco Loggia, Stephen Morley, David Patterson, and Russ Portenoy were also extremely generous with their time.
Navigating my way through the opioid mess was the toughest part of this book. I am grateful to Andrew Kolody for taking the time to talk to me repeatedly, even though we disagreed. I’m also grateful for my conversations with Mark Collen, Carol Garner, Howard Heit, Diane Hoffman, Janice Kauffman, David Ropeik, Robert Twillman, and Michael Von Korff.
Neuroscientist Linda Watkins was the first researcher to let me spend days in her lab with her postdocs and their little white rats—an invaluable introduction into how immune (glial) immune cells ramp up pain. Doug Fields was also hugely helpful on this, as were Joyce De Leo and Michael Costigan.
The mysteries of marijuana chemistry and policy came into focus for me thanks to Don Abrams, J. Hampton Atkinson, Mark Blumenthal, Lyle Craker, Michael Cutler, Rick Doblin, Steven Gust, Raphael Mechoulam, Edgar Alfonso Romero-Sandoval, Ethan Russo, Mark Ware, and numerous patients, including Marcy Duda and Beth McCauley.
Spine surgeon Stephen Parazin was a wonderful explainer and fact-checker, despite a daunting travel schedule. Alvaro Pascual-Leone, to whom I’ve turned for years to explain transcranial magnetic stimulation, came through once again. Gary Bennett awed me with his knowledge of chemotherapy-induced pain. Conversations with Allan Basbaum, Steven P. Cohen, Charles Serhan, Min Zhou, and Mark Zylka were also exciting and helpful.
I’m also grateful to Joanne Gaffney, Scott Haldeman, Mike Holick, Vitaly Napadow, John Pereira, Pamela Pettinati, Bruce Pomeranz, and Peter Wayne for their insights into alternative pain treatments. And to Diederik Lohman and Lisa Robin for explaining aspects of international law and regulatory policies.
Jim Rainville not only let me, as a patient with a very bad neck, into his famous “boot camp,” but cheerfully pointed me to a treasure trove of scientific papers on exercise for pain control. Carolyn Bernstein and Don Goldenberg, also strong believers in exercise, not only pointed me to research, but have taken good care of the people I referred to them.
Even more important, of course, are the pain patients, whose stories still haunt and inspire me. Hyrum Neizer, the truck driver with excruciating headaches who nearly committed suicide. Pam Costa, the awesome psychologist in constant pain because of a genetic mutation. The Blocker family, whose daughter, Ashlyn, is endangered because her genetic mutation means she never feels pain. Paul Konowitz, the ear, nose, and throat surgeon, who struggled with opioid dependence during his battle with chronic pain. And I’ll never forget Tom Fersch, the director of sales for the New York Mets who was dying of cancer in considerable pain, nor the inspirational Susan Helmrich, who has swum her way to a wonderful life despite three types of cancer and chronic pain.
My own healers, physical therapists Susan Lattanzi and Lisa Childs, neurologist Deepak Tandon and his team at New England Baptist Hospital, and acupuncturist Jen Evans, were phenomenal.
Most of all, I can never properly thank my son, Mike Fowler, my daughter-in-law, Robin Just, and my grandsons, Owen and Hugo, for all their support and love.
But the absolute best is my husband, my biggest supporter and my best friend, Ken Kaplan. A psychiatrist who had been teaching mindfulness mediation for pain relief long before I even met him, Ken is the most compassionate person I have ever known. I am incredibly lucky to have him in my life.