When I look back at all the other things I did impulsively during that time, I’m terrified that the thought of jumping crossed my mind. There was very little distance back then between what I thought and what I did.
The impulse passed, I got on the train, and went to New York. And at seven forty-five the next morning I was on the Today show with Meredith Vieira, who wanted to talk about the end of my congressional career—and the last days of the more than sixty years when there was a Kennedy serving in Washington.
Instead of answering her opening question, I was able to pivot and talk about what I hoped might be my professional future—something I had been discussing for the past year behind the scenes in Washington but hadn’t really shared much in public. It was a new brain research initiative that would be tied to the anniversary of JFK’s “moon shot” speech and would, for the first time, include mental illness and substance use disorders as brain diseases. I was scheduled to give a special guest lecture at the Society for Neuroscience international meeting in San Diego on this subject in a week and had been working with a top speechwriter on how to bring these complex ideas across. I was using the show as a way of trying out some of our new ideas.
The first answer sounded pretty good—sometimes you don’t know until you hear yourself say something out loud if it works—and so, from that point on, almost every question she asked me, I brought back around to issues of the brain: mental illness, veterans with PTSD and traumatic brain injuries.
While I was visibly grimacing during the entire interview—and, each time, catching myself and forcing a forlorn smile—those five minutes and six seconds of airtime made a real impact on my life. It felt like I had caught a second wind.
Maybe I didn’t have to be this lonely pitiful loser. Maybe I wasn’t completely damaged goods yet.
I didn’t call Amy right away, because I didn’t think I deserved another chance, and it would be too self-serving of me and disrespectful to her to ask for one. I thought I should just put everyone out of my misery.
But a couple days later, she called me.
“Let me get this straight,” she yelled, “you’re not even going to try?”
She was incredulous and angry at me for accepting her word as the last word. I told her, very honestly, that I didn’t realize that “trying” was even a possibility because I had never been in such a place in a relationship before, didn’t really understand all that “women are from Mars” stuff. We talked for a long time and I was deeply relieved when we decided to try to keep moving forward.
It just so happened that the day after this conversation, the bid I had made on that house on the water in Brigantine was accepted, and the deal was quickly closed by a lawyer in New Jersey. The house needed a lot of work and was not habitable but it was there—either a great sign of our future together or, as Amy still occasionally worried, a place where I might still move after our relationship was over and I was finished in Congress.
—
I BOUGHT THE HOUSE on a Friday, and that Monday I was in San Diego to give the speech that I hoped might launch my post-congressional career. I was speaking to well over ten thousand neuroscientists from around the world and trying to turn their esoteric scientific meeting into a political rally. My talk—scheduled up against nanosymposia with titles like “Postnatal Neurogenesis” and “Visceral Nociception: Bidirectional Interaction Between the Viscera and Brain”—was something a little bit different: “A Neuroscience ‘Moonshot’: Rallying a New Global Race for Brain Research.”
I got up onstage, and between the unflattering lighting in the San Diego Convention Center ballroom and the fact that I was in a deep agitated depression, I looked like I was suffering from all of the illnesses I was there to discuss. The only good thing about this situation, as I continually wiped sweat off my face, was that I felt so utterly horrible that I was too nervous to deviate at all from the speech.
I was there to dare them. I talked about the upcoming fiftieth anniversary of my Uncle Jack’s seminal “moon shot” speech, in which he dared the nation’s disparate scientific communities to come together for a goal that would seem beyond impossible only until they achieved it: the goal of sending an American to the moon and back. I announced it was time for an even more ambitious journey to a newer frontier: the inner space of the brain. That’s where all the diseases they researched lived. That’s where all the diseases I advocated for lived. We only have one brain. And it was time for us to commit to being of one mind for brain research.
If we really wanted to succeed, we needed to look to the Manhattan Project, we needed to look to NASA, we needed to look not just to science, but to political science. And in political science, there’s a simple equation that always works: we are stronger together than we are divided. In all my years on the House Appropriations Committee, I had heard so many different smart, committed, powerful people ask for money for their priority, and their priority only—with seemingly no idea of their common goals, their common enemies, their common purposes. Many of them offered almost the same exact basic information about what needed to be done, even the same explanations about how stigma and prejudice had kept it from being done, and then offered completely competing conclusions about why their thing needed to be done first. Yet the moral of every story they told was that we needed to develop a common language and a united front for making a concerted impact on the global burden of brain disease.
And I explained that the tipping point for all this—and it was a tragic one—was that our military was also figuring this out, the hard way, from all the returning veterans dying from the signature wounds of war: brain injuries on the outside and on the inside, TBI and PTSD. Just as NASA and the Manhattan Project had been driven by the politics of national defense, so would our effort.
I finished up by saying that when I looked out in the convention center, I saw a room filled with modern-day astronauts in our race to inner space. After the talk, Steve Hyman, the provost of Harvard and former head of the NIMH, bounded toward me and demanded to know where he could sign up. He was followed by Tom Insel, the current head of NIMH and a much more laid-back person, who looked at me and said, “I like being called an astronaut.”
All that was left to do was figure out a way to plan and fund this neuroscience revolution. We needed to be thinking really big—like maybe war bonds big.
—
I BROUGHT AMY HOME for Thanksgiving to meet my whole family. That was an important step forward for us, but the next few moves I needed to make on my own. I needed to finish out my term in Congress, say good-bye to Washington, and then go away and do something I had never done—not just retreat to an inpatient facility, but stay thirty, sixty, ninety days, however long it took until I was actually well enough to begin a new life.
I made my rounds in DC early and did all the interviews about what would come next without letting on a thing about what had actually been happening in my life during my last term. I had an emotional good-bye with Dr. Ron Smith’s Tuesday night twelve-step meeting and dinner group, who had not been seeing all that much of me over the past months.
Nobody seemed to pay attention when I started packing up my office with two weeks left to go in the session and then missed my last week of votes. If they did notice, I’m guessing more of them were praying for me than upset with me. Because, even for many of those closest to me, the only thing they feared more than me being in Congress was me not being in Congress.
I went directly from my last day as a Congressman to my first day in the roughest detox I had ever experienced: at Virginia Beach Psychiatric Center, arranged by the concierge medical adviser I was still working with. After a seven-day detox there, I was going, for as long as it took, to a retreat-style rehab on the Outer Banks of North Carolina, Two Dreams. It was run by Dr. Andrea Barthwell, who I knew a little bit from politics: she had served President Bush as Deputy Director for Demand Reduction in the Office o
f National Drug Control Policy from 2002 to 2004.
For patients, advocates, and professionals, mental illness and addiction is a small world.
Two Dreams was exactly what I wanted—on the water, excellent staff and facilities. But after a few days, with Christmas approaching, the first Christmas of my new life, I just couldn’t do it. I called Amy, who I’m sure was shocked and scared when I told her I was leaving rehab and coming to be with her and her family for the holidays.
I flew from the Outer Banks to the Jersey Shore, and was driven from the airport to Absecon where we passed the Wawa market and the American Legion post and the family pizzeria where Amy had once waitressed, and then made a left onto the tree-lined street where her parents lived. When I showed up at the front door of their two-story colonial house, Amy hugged and kissed me like I was home. Sick, sad, and depressed, with a nervous twitch in my hand I was hoping was from medication and would go away sometime, but home.
I had planned to stay for just a couple days and return to my room at Two Dreams. A couple days extended to New Year’s, and then beyond, and I just never left. Harper was sleeping in Amy’s old bedroom. Amy and I stayed in her brother’s much smaller old bedroom, which her parents had turned into an office—so whenever her dad needed to use the computer, I had to finally get up out of bed, or at least scooch over.
It was like some odd mental illness sitcom. But it felt like the safest place for me to be.
Chapter 26
When the holidays ended, Amy returned to teaching, Harper returned to day care, and Amy’s parents, both retired teachers, just went about their business. Except for breakfast—which they called me for but I almost never came—and dinner with the family, they pretty much left me alone.
I was still talking about maybe going back into treatment—there were local people I could hire to be my health life coach—but I actually liked the idea of starting over completely. So with the help of a local caregiver, I tapered myself off all my psychiatric medications. This was a risky thing to do, and while I understood the risk and had access to medical help if needed, I would caution anyone else against taking this route without complete family and medical support—and an understanding that while you may be tired of certain side effects, nobody can predict how you will feel without the meds at all. Too many people stop their meds haphazardly, and sometimes hide that fact from caregivers and family. They risk not only the return of symptoms but sometimes the medical effects of halting a drug improperly, because many medications require a slow titration down to stop taking them safely. People can make themselves sicker just by the way they abruptly stop taking medication.
What I did was experimental and I had someone around me all the time (even if it was just Amy’s mom asking if I was ever going to pick up my clothes in the bedroom). I was careful, but this was a gamble. It was one of the many gambles Amy and I decided to take, knowing full well the risks, for our future.
As I came down off the medications—the hardest one to give up was Adderall, because quick-acting stimulants were my last addiction—I came to better understand my feelings and my symptoms without any pharmacologic intervention. I found that I was even more quickly choked up and tearful than ever before. I could also get very agitated very quickly, and felt the need to either leave certain situations right away or confront my agitation with whoever I was talking to, rather than just waiting for it to pass. I recognized these as symptoms of my mental illness. I also recognized that accepting them as symptoms and dealing with them without medication was something I wanted to try. I was getting in better shape, running forty-five minutes a day, often to blow off agitation or depression.
I was also occasionally attending a twelve-step meeting at a church down the street where Amy’s grandparents had once belonged. I was doing my best to use this temporary family cocoon as a way of getting healthier.
Two months after I showed up on her parents’ doorstep, the anniversary of my father’s birthday, February 22, was approaching. Amy and I talked about this—actually the best part of what was happening was that Amy and I talked about everything, fearlessly. While I had always intended not to drink again after returning from treatment, we were realistic about the challenges to my sobriety on occasions like my father’s birthday. But, instead, that morning, I got up, went to my seven thirty A.M. meeting at the church, and went for a run. I did the same thing the next day, and the day after that. And when February 22 had come and gone without a slip, I decided I was going to be fully committed to my recovery and use that as my sobriety date. (I am, as of this writing, four and a half years sober.) But I didn’t discuss this with Amy at first, and she didn’t immediately bring it up. She just noticed something had changed and waited for me to say something, which I did after about a week of feeling more sober than I ever had in my life.
We talked it over, and I decided that I would focus all my energy into traditional twelve-step recovery, to see how that made me feel. I was not against using psychiatric medication again and was not in a twelve-step group that would frown on that if I did. Over all my years of sampling medication—prescribed and otherwise—I realized that the anticonvulsant Lamictal (lamotrigine) seemed to give me the most relief. It was now a popular mood stabilizer, used for patients with bipolar disorder. I no longer wanted to take multiple meds to address the same issue, which some called “cocktails” and others “polypharmacy.”
So Amy and I agreed that if it seemed I really needed medication again, I would ask our local physician for a prescription for Lamictal. He could consult with an addiction psychiatrist I had recently started seeing in New Jersey. But I didn’t want to go back to psychotherapy or psychiatric meds: if you have comorbid mental illness and addiction, I think you have to be sober first to treat either illness successfully. I wanted to work the program of recovery as my baseline and see where that took me. One day at a time.
And that was, really, when Amy and I finally found one another.
—
AS WE WERE WORKING through all this, I was co-founding a new nonprofit and planning a huge international conference—which was going to happen in May whether I was ready for it or not, because I had already reserved the JFK Presidential Library.
When I had first decided to use the “moon shot” imagery to organize the disparate stakeholders in the world of brain science, I had asked my cousin Caroline if we could use her father’s presidential library on May 25, the fiftieth anniversary of my uncle’s famous speech to Congress that called for America to land a man on the moon. Since I had booked the library, I wasn’t going to let any health or life struggles get in the way of this event.
My partner in this whole project was Garen Staglin, a Bay Area financier turned winemaker who, with his wife, Shari, had quietly become one of the most aggressive and successful philanthropic forces in the world of mental health. Their journey began in 1990 when their brilliant teenage son, Brandon, was diagnosed with schizophrenia. They spent the first several years focusing primarily on helping Brandon get proper care and rebuild his life—he was fortunate to be diagnosed just when Clozaril revolutionized care, and has steadily improved ever since, so he finished college, married, and works in the family business and in multiple advocacy roles. In 1995, they decided to hold a fund-raising concert and wine dinner at the Staglin Family Vineyard and use the funds for mental health research. That dinner grew and grew each year—better-known musicians, bigger supporters from the worlds of science and society—until they had raised over $100 million for what they had always referred to as “mental health” but now were talking about rebranding as “brain health.” Garen and Shari had originally given most of the money they raised to one of the first major mental illness research charities, NARSAD (which is now called the Brain and Behavior Research Foundation), but later decided to fund research and academic chairs themselves by creating a new nonprofit, the International Mental Health Research Organization (IMHRO).
&n
bsp; Besides giving millions, Garen and Shari were very knowledgeable and demanding about where their donations went: they were ahead of the curve on financing research into the possible prevention of mental illness, starting with learning more about what is called the “prodromal” period in schizophrenia, which some believe is a period when the disease, or at least its severity, can be thwarted with very early treatment. They had also financed an incredibly forward-thinking antistigma effort with actress Glenn Close and her family members suffering from mental illness, the Bring Change 2 Mind campaign, which had amazing TV public service announcements.
Another thing I really appreciated about the Staglins is that they were very “out” about their work. Brandon spoke openly and eloquently about his illness, and Garen and Shari about their family situation and their mental health politics. That still wasn’t very common: many of the top funders of mental illness research remained pretty quiet about it. Even in philanthropy, there was a stigma.
The Staglins had been very supportive of me for the past five years—in fact, we had been planning their first fund-raising event for my work in Congress on mental health in 2006 when I had my Capitol car crash, and I had to call them from rehab to ask if it would be okay if we postponed. They were great about it—people who have been through mental illness and addiction in their own families learn to be amazingly kind, patient, and forgiving. Garen and Shari, as they often joked, had a high tolerance for behavior that was not “straight down the middle” and gave people a lot of room. They were people who really meant it when they said, “These are brain disorders.”
So Garen was as patient as he could be with me, as we were both trying to start a new nonprofit called One Mind and planning an unbelievably ambitious three-day international conference in Boston around the moon shot anniversary—a sort of Woodstock for brain research, mental illness, substance use disorders, veterans’ brain care, pharmaceutical discovery, and concussion research. We were also funding a ten-year plan for the neurosciences, all using the emerging model of public/private partnerships for everything.
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 32