Mental illness and addictions have an impact on all workers and every company’s bottom line; as purchasers of healthcare, employers can help set standards for workplace wellness, and dramatically affect the quality of care their employees receive for all brain health concerns
By sharing gold standards and best practices—and, if necessary, developing new ones—the Roundtable leaders will show how enlightened care of behavioral health can impact every company’s bottom line, decreasing absenteeism and presenteeism and improving overall productivity; businesses can and should be a driving force in evidence-based care and paying for what works
If you are a corporate leader interested in getting involved with this effort, email us at [email protected].
Alliance of organizations and individuals dedicated to a health-first approach to marijuana policy
Advocates for marijuana policies to be aligned with the scientific understanding of marijuana’s harms
Champions smart policies that decrease marijuana use—without harming marijuana users and low-level dealers with arrest records that stigmatize them for life and that make it even harder for them to break free from cycles of substance dependence
Works to facilitate research on marijuana’s medical potential that would establish compassionate research programs for the seriously ill, help waive Drug Enforcement Administration, Food and Drug Adminstration, and Department of Justice regulations that restrict legitimate research, and help to assure that medicines made from marijuana’s active ingredients can be dispensed by board-certified physicians to appropriate patients
For more information, visit www.learnaboutsam.org.
AFTERWORD AND ACKNOWLEDGMENTS
From Patrick Kennedy
The biggest challenge of working on this book has been keeping it scrupulously honest about my illnesses and how they affected my relationships, even if it reminded me again and again how much time and love and productivity I have lost to being sick. That has been especially true when going back over my relationship with my father. I did this to show the generational differences between approaches to mental illness and addiction—and to help personalize the challenges of mental health parity as they exist in all families. But in rereading parts of the book, I am constantly reminded of how much I miss my father and, perhaps more importantly, how I missed the chance for him to see me in recovery, with a wife and family, carrying on my work in a healthier way. I hope the book captures both the wonderful times we shared, as well as the missed opportunities. I hope it serves as a reminder to me and to others how these illnesses affect families and, if not treated properly and chronically, can rob us of our chance to connect, to love, and to process conflict in the relationships that matter most.
I wanted to make one point about all the political processes described in this book. While I have tried to describe some of my recollections of what I was doing, or trying to do, during various efforts as an elected official—and now as an advocate—nobody in Washington does anything by themselves. There are hardworking colleagues and cosponsors and staffers and lobbyists and advocates involved in every move we make—but listing and thanking everyone involved turns narrative into the Congressional Record. I am eternally grateful to my colleagues in politics, business, and advocacy, and want to thank everyone who supported me as a state rep in Rhode Island and during my years as a Congressman from Rhode Island’s First District. And I learned the true value of their friendship after I no longer sat on an appropriations committee that mattered to them, or could cast a vote—and they still were there for me, in so many ways, and support what we are trying to do now. The same is true for many of my father’s best and brightest, who have been there for me during this journey as a constant reaffirmation of how the work goes on and the cause endures.
I should also note that while we did our best to navigate the various rules for properly identifying the various brain disorders and those who have them, there is no perfect way to conform to everyone’s idea of what is correct—especially in a long narrative where there simply must be synonyms to avoid endless word repetitions. Beyond making sure that nobody in the book is described as “being” their illness unless they actually preferred it (some with alcoholism would rather be referred to as alcoholic), we did use disease, disorder, and illness interchangeably, as we did addiction, dependence, and substance use disorder; intellectual disability and developmental disability; and quite a few other terms. While we had many discussions about the best way to do the right thing in these usages, I’m sure there are instances where, no matter how good our intentions, some readers might be upset by some word choices.
If I started making a really inclusive list of those who deserve recognition, it might never end. But I especially want to thank my family and friends, as well as all of those who have been with me since I left Congress, including the staff at the Kennedy Forum and One Mind, and my personal team, Keith Lowey, Kara Kufka; Brendan Fairfield, and Nicole Steed; Bill Emmet, Jeff Valliere, Lauren Alfred, Dr. Henry Harbin, Garry Carneal, and Kate Borchers. I also wish to acknowledge all those within the anonymous twelve-step recovery community, who are always there wherever I go and whenever I need them.
I want to thank my co-author, Stephen Fried, who has been my navigator in this venture. We often described this book as some kind of Lewis and Clark journey across many Americas, without my realizing that by the end, after traversing so much challenging political and personal terrain, it would feel like he had become my Clark. The path to this book wasn’t always easy or direct, and there were times when I wondered if we were going to land in a new place or fall off the end of the earth. But with Stephen as navigator, we knew when to take chances and how to remain fixed on our ultimate destination.
Thanks to my publishers David Rosenthal and Aileen Boyle at Blue Rider Press, to our agent on the book, David Black, and to my attorney, Ike Williams.
Ultimately, the only reason I was able to write this book—in fact, the only reason I am still alive to tell this story—is because of my wife Amy and our kids, Harper, Owen, and Nora (and our new baby, who is due any day now). Amy saw something in me that I had not been able to find in myself, and instead of running away from me she ran toward us. Her belief in me and in our love has been so inspiring but also so steadying; I can only wish that everyone involved in the common struggle finds this kind of closeness and partnership with someone so grounded and so hopeful. She and our children inspire, amuse, and emotionally support me every day of my life. Thank god for them.
From Stephen Fried
In late March of 2011, Patrick Kennedy and I were introduced via e-mail by a mutual friend in Tucson, Dr. Raymond Woosley, who thought we might have a lot to talk about. A week later we were having lunch in New York, where neither of us lived: I was commuting there on Thursdays from Philadelphia to teach at Columbia Journalism School, and Patrick was commuting there (and to DC, Boston, Philadelphia, and other locations) from Absecon, New Jersey, where he and his then-girlfriend Amy, and her daughter Harper, were living with Amy’s parents.
It was an intriguing and energizing lunch, and it reminded me how much I missed writing about mental health, addiction, and brain science. These subjects had fascinated me during the first twenty years of my journalism career in magazines and nonfiction books, but it was getting harder to find editors interested in assigning ambitious stories in these areas, so I had been focusing more on writing narrative history books, teaching narrative journalism, and lecturing.
It turned out Patrick and I knew a lot of the same people in the world of brain science and politics, but from different perspectives. I had covered many veterans of the “Decade of the Brain” who had lived through that cycle of great bravery and hope and the failed 1996 mental health parity bill. Much of this journalism had been inspired by my wife, author Diane Ayres, and her medical issues after one pill of a new antibiotic triggered a seizure and a mood disorder—leavi
ng her, and us, in an area where neurology and psychiatry have always crossed over, even though neurologists and psychiatrists often want patients to pick sides. Because I wrote about her illness and pharmaceutical safety, my wife and I became friendly with some of my sources, especially Dr. Kay Redfield Jamison—who first “came out” with her manic-depressive illness in a piece I wrote for the Washington Post Magazine in 1995—and her late husband, schizophrenia researcher Dr. Richard Wyatt. I covered the rise of NAMI in Washington for The New Yorker (don’t look for the piece, they killed it—but left me with many exclusive interviews, including one with the late Paul Wellstone, that were helpful for this book), I spent a year covering the internal life of the nation’s first psychiatric hospital in Philadelphia, I covered the family who invented the “false memory” controversy, I covered the sexual side effects of some psychiatric drugs and the difficulties of titrating down off others.
When I heard Patrick describe what he wanted to accomplish in his post-congressional advocacy, it made me want to watch and perhaps participate. Especially since one of his major goals was to break down the barriers between the medical professions interested in the brain. As I explained at our lunch, after many years of having my wife’s case handled by a mental health professional—with all the discrimination, unfair deductibles, and managed care challenges—she had several more seizures and was now being treated primarily by a neurologist. And as soon as that switch took place, our healthcare provider started calling us all the time, asking how they could help her manage her epilepsy. Family members were suddenly more supportive of her care; nobody asked anymore if she “really” needed those medications, the way they did when her primary diagnosis was bipolar disorder (even though she was still taking the same anticonvulsant meds, which are used for both illnesses).
At our first meeting, Patrick didn’t tell me much about his own personal situation; we were there to talk about the upcoming One Mind debut. So I didn’t understand at the time just how recently his life had changed, and how new his new perspective really was: it was only years later, when we were deep into this book, that I realized that on the day we had met Patrick considered himself just a couple months sober.
We talked and e-mailed before, during, and after One Mind, but never actually decided to work together. Months later, Philadelphia magazine asked if I wanted to write about Patrick and his new life in South Jersey with Amy. I asked if they were up for this, because everything I had seen and heard during our conversations and at One Mind would be on the record. They bravely said okay, and we started, right away, doing some incredibly personal and moving interviews. After the piece came out, I was asked if I would consider doing a book project with him.
Patrick had been teaching a course on mental health policy at Brown after leaving Congress, with his friend Dr. Judith Bentkover, and thought the lectures might make an interesting book. I said I’d be happy to help him find someone else to write it, but would only be interested in collaborating if the book was something much bolder, something that could make a bigger impact. I thought it would be great if Patrick wanted to co-write a book that told the true, behind-the-scenes story of mental health and addiction politics and science, and included a lot of his own experiences with the challenges of these illnesses in his own family—as a mirror onto all the families similarly affected. Patrick liked the idea and his lawyer, Ike Williams, came up with the title, A Common Struggle.
For the next two years, we did periodic, long interviews—each one usually two and a half to three hours—that moved effortlessly from public policy, really private stuff about Patrick’s illnesses past and present, discrimination against brain diseases, the challenge of building two nonprofits from scratch, and his family. When we started, Patrick’s stepdaughter, Harper, was four and Amy was pregnant with Owen. I was often there when Harper got home from day care and later from school, and we always stopped the interviews so she could regale us with what happened that day. After Owen was born, we did many interviews when Patrick was in charge of watching him, and so it was not uncommon for our discussions to go to a whisper as he rocked Owen to sleep in his arms. Later, Owen would sometimes crawl up, and then march up to Patrick’s third-floor office during a session and demand that his dad read him a book. Patrick always stopped, read him one, and then convinced him to go back downstairs and take a nap. When we were finishing the book, Nora was just getting old enough to start coming up with her brother to double-team their dad.
Besides these sessions—we did over forty of them—Patrick gave me access to all of his medical records, including all the notes from his psychiatrists and psychologists, inpatient and outpatient (none of which he had ever read), and his handwritten worksheets from rehabs. He also gave me all his office political files on mental health parity and other healthcare bills, and I attended several years’ worth of conferences and symposia where Patrick spoke. I also interviewed Amy at length several times; Amy and I did an interview session with Patrick’s mother; and Patrick and I interviewed a small number of very important people in his life. The process was often surreal, since this was, in many cases, the first time Patrick and people close to him were admitting out loud just how ill he had been at various times, and how much about his health had gone unspoken. The process was like psychotherapy or twelve-step sharing, with an investigative reporter involved.
After I wrote a draft of the book, Amy very actively joined the process of editing. The three of us spent several months—in long sessions on the phone, in person in Patrick’s study, in limos, and when Amy was pregnant again and not feeling so great, we worked together while she was lying on the couch in the living room, buried in manuscript pages. It was intense, fascinating, and really, really personal.
I’m not sure anybody has ever trusted me with this level of private detail and revelation before. Patrick and Amy are really brave, and committed to what they want to accomplish, and I thank them for letting me be part of it.
I also want to thank those who taught me how to write about mental illness, addiction, and healthcare, Dr. Sandy Bloom and Ruth Anne Ryan; Dr. Kay Redfield Jamison and Dr. Richard Jed Wyatt; Dr. David Flockhart and Dr. Raymond Woosley; Dr. Ray DePaulo, Laurie Flynn, Dr. Martin Orne, Dr. Jennifer Freyd, Dr. Jody Foster, Dr. Michael Miller, Dr. Bradley Fenton, Dr. Michael Sperling, Dr. Steven Galetta, Dr. Jeffrey Lieberman, and all the consumers and families, living and dead, whose lives have been shared with me.
My thanks to my assistant on this book, Amanda Mauri—an MPH grad student at Penn who got quite an education in the politics of public health—and to the Penn undergrads who helped with political and archival research: Jessica Goodman, Debby Chiang, Melanie Bavaria, Maxwell McAdams, Rebecca Heilweil, and Laine Higgins.
Thanks to my unstoppable agent, David Black, and to our publishers, David Rosenthal and Aileen Boyle at Blue Rider.
And, mostly, thanks to my wife and editor, Diane Ayres, who is responsible—personally and professionally, as if they can be separated—for most of the insights I brought to this book, and most of my abilities to write and finish it.
INDEX
AA. See Alcoholics Anonymous
abandonment, 280
abstinence, 81–82, 281, 368
ACA. See Affordable Care Act
Accutane, 205
ADAMHA. See Alcohol, Drug Abuse, and Mental Health Administration
Adderall, 295, 312, 338
Addiction, Treatment and Recovery Caucus, 212
addictions. See substance abuse disorders
Adult Children of Alcoholics (ACOA), 99
Adverse Childhood Experiences (ACE), 51–52
Affordable Care Act (ACA), 13, 313–14, 316–17, 365
Al-Anon, 99, 321
Alateen, 99
Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA), 87, 107–8
Alcoholics Anonymous (AA). See also twelve-step programs
abstinence and sobriety in, 81
background of, 47–48
Malibu Model of, 81, 82
alcoholism, 47, 81–82. See also substance abuse disorders
Alford, Terri, 125, 282–83, 300–301, 359
Alliance for the Mentally Ill (AMI), 110
Ambien, 2, 226–27, 232–33
American Hospital Association, 195
American Managed Behavioral Healthcare Association, 195
American Medical Association, 114, 195
American Psychiatric Association, 57, 114, 195, 216
American Psychological Association (APA), 114, 195
America’s Law Enforcement and Mental Health Project, 202
AMI. See Alliance for the Mentally Ill
Andover (school), 70–71, 72–73
Andrews, Rob, 318
anonymity. See privacy and confidentiality
Antabuse (disulfiram), 209, 313
antidepressants, 88, 108, 113–14, 142
antipsychotic medications, 108, 151
anxiety disorder, 216
APA. See American Psychological Association
Appropriations Committee, 156, 183
Arc of Atlantic County, The, 318
Ashcroft, John, 187
assassinations
of Benazir Bhutto, 274–75
of Bobby Kennedy, 33–34, 73, 127, 166
concern about, 60–61, 68, 120–21
of John F. Kennedy, 29, 127, 166, 274
of Yitzhak Rabin, 127–28
assault weapons ban, 132–33
asthma, 19–20, 35, 49, 62, 89, 216
Ativan (benzodiazepine), 300
atypical antipsychotics, 108, 151
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 39