A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction

by Patrick J. Kennedy

  Garen was probably the only one who realized that when I was calling the President or Vice President to appear, and trying to round up all the scientific, political, and business dignitaries involved, I was calling not from a new, post-congressional office complex, but from a wing-back chair in the very cozy living room of Amy’s parents’ house or from our tiny bedroom. I would do most of my calls in between my twelve-step meetings and my daily runs. The “Offices of Patrick Kennedy” from which people got e-mail confirmation was a very nice young woman in a nearby South Jersey town who was working from her house.

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  AT THE END OF MARCH, I decided I wanted to propose to Amy. During a visit to DC I went to a jewelry store and bought a ring—a diamond with pink sapphires on either side. And then I had to figure out how to ask for her parents’ blessing first without Amy’s finding out—since, of course, we were all living in the same house and Amy’s mom is not a great secret keeper. So, on a Thursday morning—when Amy was at school and Harper at day care—I asked her parents, Leni and Jerry, if they could join me in their living room.

  A couple days before this, Amy and I had a disagreement during dinner with her parents that escalated in the living room afterward into a little family feud. Amy and I had actually already talked it through—the best thing about our relationship was that we talked through everything—and we were fine. But I don’t think her parents knew that. So when I asked to speak to them, they thought I was going to tell them I needed to get some distance from their family for the sake of my fragile sobriety. They were tearfully relieved to find out I wanted to marry Amy and double down on the life I was making with her.

  In fact, I explained, that was why I was so sure I wanted to do this so soon: if Amy and I could be so committed to working through a confrontation like that instead of isolating from each other, what we had was real.

  Amy and I left for Providence directly after school on Friday so her mom wouldn’t have the chance to slip. The ring was burning a hole in the pocket of my khakis, but I wasn’t sure when to ask her. We had a nice dinner Friday night but that seemed too obvious. And on Saturday we were going through some of my stuff so that I could begin packing to move permanently to New Jersey. We were in the little apartment over the garage of my house, which overlooked a beautiful orchard. We were knee-deep in my messy life, not the most romantic moment in the world, but it felt right.

  I said, “I want to talk to you about something.”

  And before she could respond she blurted out, “Oh, look!” and pointed out the window: right in front of us, less than twenty yards away, was a pair of huge deer, standing frozen in place in the orchard. And for a second, we just stared at them and they stared back.

  “I guess this is the sign,” I said. “Amy, I want to be with you. . . .”

  I fished the ring out of my pocket, shoved a couple boxes out of the way so I could get down on one knee, and asked if she would marry me.

  When Amy and I announced our engagement, we expected mostly cautious optimism. But people were enormously happy for us, and even more enormously hopeful. I was, of course, well aware over the next weeks that all the people we were bringing together to celebrate our engagement and all the people we were bringing together for One Mind were probably thinking the same thing: they were wondering what the chances were that I could hold it together. And so was I. Amy and I both were. But we were in love, we wanted to be married, and we wanted to help raise her daughter together and have kids of our own. I was turning forty-four and had never been married before. I didn’t want to wait another second.

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  IN LATE MAY OF 2011, we held the first One Mind conference in Boston. There were three days of who’s-who talks at the Westin Copley Place hotel. Cutting-edge scientists and business leaders from around the country gathered to hear Dr. Francis Collins—formerly of the Human Genome Project, then director of the National Institutes of Health—as well as the directors of the NIMH, NIDA, NIAAA, and FDA, and leading researchers on veterans’ brain injuries. In the evenings there were special presentations: the nation’s leading researchers on concussions spoke in a big private box at Fenway Park, and actor Martin Sheen and former Senator Max Cleland came to present a searing new documentary they had worked on called Halfway Home about the visible and invisible wounds of war.

  Steve Hyman presented a ten-year plan for the neurosciences, which he had orchestrated with the directors of all the brain-related institutes in NIH, the Society for Neuroscience, and the Institute of Medicine. Dr. Husseini Manji, the global head of neuroscience at the Janssen Pharmaceuticals division of Johnson & Johnson—our earliest corporate supporter and the biggest player in pharma brain research—gave a stirring, hopeful talk about how drug companies could be more innovative and collaborative and transparent with their current research, and more open to sharing information gathered in the past.

  On the last day, Vice President Biden gave an astonishingly moving keynote at the JFK Presidential Library, invoking his own experiences with neurosurgery and the searing saga of a close friend of his from college whose son was suffering greatly from a mental illness—and he didn’t know what to do. He described to Biden his feeling that his son was at the end of a string, out there in space, and said, “I’m so goddamned afraid that if I tug too hard on that string it will break, and I will lose him forever.”

  But the most exciting part of the meeting was the electric interactions during breaks and meals among people who were usually at separate meetings, strategizing about how to compete against each other. People were imagining how they could build things together, research things together, solve the unsolvable together. After all, sitting in the same room were the people who had cracked the genetic code of DNA; the people who turned the deadliest epidemic of our lifetime, AIDS, into a treatable illness; and so many other brilliant people capable of taking us to inner space. An incredible array of talents and passions to all be of one mind.

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  FOR ME, HOWEVER, the highlight of the One Mind event was family—because for the first time in my life, I was appearing in public as a man no longer alone. Amy and Harper were there for many of the events, and it was joyful to share all this with them.

  My brother and his wife were there. My cousin Caroline came and spoke—just after appearing at the JFK Presidential Library to give the annual Profiles in Courage awards. And, perhaps most amazing, on the last day of the One Mind meeting, my mother came.

  It was only the second time she had appeared in public in years (the other was my father’s funeral). Even though she had spoken about her challenges decades ago, in recent years she had been too ill to ever be part of the work we did on mental health and addiction parity. So, on the last day of the three-day meeting, before I gave the closing talk and the call to action, I was so moved to see her enter the side door of the Westin hotel conference room. She had told me ahead of time that it was okay for me to speak in public about her struggle if it would help people get treatment. But I wasn’t sure she would actually come—she was, by then, getting pretty frail and would often need to cancel engagements at the last minute because she wasn’t feeling well.

  She walked very slowly and deliberately, with tiny steps, so she could remain steady. She was wearing a lovely teal suit and her blond hair was long and beautiful. She sat down in the front row. And as I went through the list of people I needed to thank for this conference, I couldn’t wait to get to her.

  I talked about what it was like when my brother was diagnosed with cancer and the whole world turned in sympathy to my family—in part because we had no problem saying out loud that a family member of ours was suffering from a disease that needed to be treated with the utmost urgency. But I also remembered being struck from a very young age with the difference between how people talked about my brother’s illness and my mother’s illness. She had the double challenge of not only confronting an illness, but confront
ing the prejudice and stigma of being someone who society felt didn’t deserve the same medical care and sympathy as her son with cancer.

  “My mother has been such an example to me,” I said. “And I want to tell you today, my mother is my profile in courage for all that she’s done to stand up to this stigma.”

  And I walked down off the stage to give her a hug and kiss while everyone in the room rose to give her a standing ovation.

  Chapter 27

  Amy and I didn’t want to wait long to get married, so we arranged to have the ceremony at Gramma’s house in Hyannis Port in mid-July, a time when most of the family was down there and could be with us. She and I went to Paris for a week before the wedding, as a sort of pre-honeymoon. And when everyone got to the Cape, instead of a bachelor party—which we all agreed would be a really bad idea—my brother Teddy took the family sailing the day before, and spent most of the ride teasing me and asking Amy, every way he could think of, if she realized what she was getting herself into. In reality, Amy understood that better than Teddy did—and probably better than I did. The weather that Friday afternoon for the wedding was absolutely perfect, so we could do the ceremony out on the lawn, overlooking the ocean. I just remember looking out and seeing all the chairs lined up out there and thinking this was a fairy tale, because I never thought this was going to happen for me.

  Harper was our flower girl, of course. Our Justice of the Peace was Supreme Court Justice Stephen Breyer, a longtime family friend. During the reception the sun set, and as a very full moon began rising over the harbor, Vicki treated us to an incredibly thoughtful, nostalgic gift. She had hired the company my dad had used for fireworks during my birthday when I was a kid, and they put on a breathtaking display.

  After the round of rockets exploded in the air, some sparks hit the dune grass at the end of the lawn, and I was worried about a fire. But the fire department was already there, prepared. And when I asked the chief if we should stop, he said, “Are you kidding me? You see that pump boat out in the water there, you see this fire engine? Your dad helped us raise the money for all of these. You’re having your fireworks!”

  Our wedding was the last event scheduled at the house before it shifted from family control to the control of the institute my father set up before his death. And I was going to end up owning the only part of my grandparents’ house remaining in private hands.

  The house had a separate garage building in the rear of the property, which had a small apartment above it where I often stayed during visits to the Cape. In his will, my dad left me that little building, and left the rest of the historic home and grounds to the nonprofit (which would also run his Edward M. Kennedy Institute for the US Senate, adjacent to the JFK Presidential Library). It was a sweet little apartment and was nearby President Kennedy’s old house, which my brother had bought. For Amy and I, who already lived on another shore where we planned to raise our family, the apartment would be a wonderful little place among the big family homes.

  —

  AMY AND I WANTED TO have a baby right away, and wanted Harper to have a sibling. Amy got pregnant shortly after the wedding, but we kept it quiet for a couple months. In mid-September, we decided we would start telling family, beginning with my sister, Kara—who was the first family member Amy had met, and among those family members most overjoyed I had finally found a true mate.

  Kara had largely stayed out of the public eye, working behind the scenes in film and TV in Boston before moving to Washington to raise her kids. She had worked on videos for Very Special Arts, the group founded by my Aunt Jean as part of the Kennedy Center to provide arts education for children with disabilities, and she was on the boards of several organizations, including the National Organization on Fetal Alcohol Syndrome. She had beaten lung cancer in her forties, but at a price—the strong treatment had affected her heart.

  Amy and I were planning to tell Kara over the weekend, and I had gone down to Washington a day early to appear at a political rally. I was in my hotel room at the Four Seasons, preparing my speech, when I got a call from Sean Richardson, my former chief of staff, who was still the one in Washington who people reached out to when they wanted to quickly track me down. He said he had just received a call from Kelly O’Donnell from NBC News with a terrible, unconfirmed report concerning my sister. He said “they found her” in the steam bath of her health club, just after she had finished swimming laps, which she did almost every day. For a second it just didn’t compute what “found her” meant.

  Finally he said, “I don’t know how to tell you this . . .” and then it just clicked that she had died. I couldn’t believe it. She was fifty-one.

  I immediately canceled my speech, called Amy to let her know, and then called my brother, who couldn’t get there until the next morning. But we agreed I needed to go be with Kara’s teenage kids, Grace and Max, immediately, so they would first hear the news from me. I called one of Kara’s closest friends, who the kids knew well, to go over with me. We got to my sister’s house late in the afternoon. The kids were home—Max was fourteen, and Grace was about to turn seventeen in a few days—and we all went into the living room. I spoke first, and while I’m sure what I said is vivid in their minds, the whole moment for me was and still is a blur. I could still barely conceive of this thing myself, and I just thank god I was able to be there with them and tell them, and that I was able to do that sober. I do remember telling them over and over that they were her everything—nothing was more important to Kara than Grace and Max. I also told them some stories I wasn’t sure they knew about their mom’s life as the oldest child, and the only girl, growing up in my family.

  I had this profound sense that I had to honor Kara in the way I acted during those first twelve hours. And I just kept thinking: I’ve got to be present for them and tell them the truth. I can’t do what was often done with us—talk about other things and ignore all the elephants in the room.

  I stayed up with them late into the night, just trying to be whatever they needed me to be. It was, in a strange way, one of the most fatherly acts of my life. Not that I was their father, but I was doing what my father would have done—be strong and comforting at a time of loss.

  —

  OUR SON OWEN PATRICK KENNEDY was born the next spring, and I was immediately a father in a way I could never have prepared for. The feelings of love and protectiveness were overwhelming.

  By then, we had been living with Amy’s parents together for over a year. They were so helpful during Amy’s pregnancy and after she gave birth—and I was on the road all the time, giving speeches about mental health and brain science issues, as well as human rights and labor issues. Since we’d decided that the new house I had bought needed more than work—it needed a do-over—we rented a house on the other side of Brigantine Island from it, just a block from the beach, and made that the place Owen would have his first experiences. (Including being taken care of by me and my coauthor when Amy used the opportunity of our early interviews to get out of the house.)

  I was, at that time, involved in the planning for the second One Mind conference, this one set in Los Angeles at UCLA. And we had just hired our dream leader for the organization: retired four-star General Pete Chiarelli. As Vice Chief of Staff for the US Army, Pete had been the Defense Department’s loudest voice, for years, on traumatic brain injury, post-traumatic stress, and the rising epidemic of suicide in the military. I had dealt with him many times during the appropriations process, and he was clearly the face of the defense establishment finally taking neurological and psychiatric conditions seriously. He also was leaving the Army after forty years, at the age of sixty-two.

  Pete was a perfect choice for One Mind, and after the May 2012 meeting in Los Angeles, it was time for Garen and I to let our fledgling nonprofit begin to grow under its new leader. Pete felt strongly that what the group could best contribute, besides being a convener for great neurological minds to share ide
as, was to focus on the things he had realized were holding progress back when he was in the military: lack of transparency in research, failure to find and wrestle with really big medical and scientific data sets, and lack of support for research and treatment for the trauma-based brain diseases that had become the invisible wounds of war. He did not come from the worlds of mental illness and addiction, and while he recognized both of them as a big part of the veteran suicide problem, he also had different ideas about how to fight the stigma against diagnosis and treatment than those of us who grew up in mental health advocacy.

  For example, his very practical solution to the problem of stigma was to stop calling illnesses “disorders,” because that was stigmatizing. In fact, he was part of a group that was trying to get the APA, in its upcoming version of the DSM, to change the name of post-traumatic stress disorder to post-traumatic stress injury or just post-traumatic stress.

  Pete and I were on the same side on most issues of brain disease, and I was thrilled with where he was taking One Mind. But I had originally envisioned the group as bringing together everyone’s science and advocacy when it came to anything concerning the brain. And I could see that One Mind’s mission had become the bright future of brain research, big data, and transparent, cooperative neuroscience. One Mind was also becoming more international, our original idea of a NASA of inner space expanded to more of an International Space Station, making sure brain researchers in Europe and Asia all used common language and protocols so the science could be replicated and more quickly lead to meaningful results.

  It was amazingly ambitious and forward-looking, and already making a difference. But I could see One Mind was going to focus on brain research for the future—and I felt that we needed to simultaneously be working to improve American mental health and addiction care today. That would mean pressing the case for the implementation of the parity act and making sure that discrimination in healthcare coverage was ended.