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

by Patrick J. Kennedy

  “I’ve decided that your vulnerability is a gift to the nation,” he wrote. “I mean that in the most heartfelt way. You are a courageous man.”

  I prayed he was right.

  Chapter 24

  In the weeks leading up to my father’s death, when my moods were getting really unstable and I was relapsing in my recovery, I called my physician at the Mayo Clinic for advice on what I should try next. When he asked what substances I had used, I thought for a minute and then just said, “Everything.”

  As I tried to adjust to life after my father’s funeral, the same could be said for my treatment regime. What was I trying?

  Everything. A lot of everything.

  Unlike an inpatient setting—where you are often given different kinds of therapeutic interventions but someone is supposed to be monitoring all of them and making sure there are no interactions, multiple treatments for the same thing, or just flat-out mistakes—out in the real world, patients still basically direct our own care. We get appointments with the caregivers we call, we get answers to the questions we ask, we get the drugs prescribed by whoever is allowed to prescribe them to us—and their knowledge of what other drugs we are taking comes, all too often, from what we tell them. Then we either take the drugs, or don’t take them, without any real monitoring.

  In all my decades of outpatient care with many top doctors, I have never—except for the year when the court ordered it—been given a blood or urine test to see if I was misusing drugs or drinking alcohol. And I have rarely been tested, outside of a hospital setting, to see if my psychiatric meds are at a therapeutic level in my bloodstream. This is a major blind spot in our medical system.

  I had now been through enough different types of treatments—and had advocated for them politically as well—to know what I was choosing from. It wasn’t that there were all that many new treatments, but a lot of the ones that had been around were being used in new, more aggressive ways.

  There was still traditional inpatient care covering bipolar disorder and addiction—for which I was lucky enough to have excellent federal employee coverage and could afford to pay out of pocket for anything not covered. This inpatient treatment could include a variety of medications, a variety of supportive psychotherapies, the new low-dose courses of ECT (which I have never tried), and education in everything from nutrition and exercise to spirituality. Once discharged, we were placed back in the care of our private doctors and encouraged to connect with the lifesaving all-peer twelve-step meetings of AA, NA, and other affiliated and unaffiliated groups around the country.

  However, just as many surgical procedures had gone from requiring a hospital stay to becoming basically an outpatient procedure, people like me who were pretty functional and also pretty ill—and were trying to balance the two without losing their jobs—were using more day programs and outpatient rehab. There had also been a big increase in the use of medical addiction psychiatry and medication-assisted treatment, and more patients were being tried on the drugs designed to take all the relief (and the fun) out of addictive behavior. These drugs were being recommended more often than ever before—sometimes by private physicians, sometimes by one of the nation’s 2,900 “drug courts,” which can legally mandate treatment.

  While these were all advances in different aspects of care, they also represented a lot of uncoordinated systems that still weren’t that hard to manipulate. In fact, some people hired “life coaches” just to try to keep themselves from gaming the system. I hadn’t really done anything like that since my parents had hired someone for me when I was in high school. But I had met a yoga teacher and clinician at Mayo who I liked, and I had hired her to come east and act as my coach for yoga and mindfulness, and hold and dole out my medications. Some of those people treating me thought having her in the mix was a good idea; others would have preferred someone with more medical training.

  Two days after my father’s funeral, I went to the congressional physician’s office in the morning to get my monthly shot of Vivitrol. It was a huge horse needle you got in your butt once a month, which was so painful that the prescription for it came with a shot site rotation chart.

  Vivitrol was the latest of the many medicines I was taking. It was a relatively new monthly injection form of the drug naltrexone, which had previously been available only in pill form. I got my first shot of it while I was an inpatient at Father Martin’s Ashley and associated it with my positive experience there. So I decided to try it as an outpatient.

  Before you can get the monthly shot, you have to have a urine test. I failed. I tested positive for stimulants—specifically Adderall which had become my primary drug of abuse. I had convinced myself this was okay because the pills helped me remain focused on my job. And I had doctors in DC and New England who would write me prescriptions.

  I also tested positive for opiates, which I couldn’t understand because I didn’t recall taking any. I had been fighting a cold and had been given an antibiotic and cough medicine, which I didn’t think contained an opiate, so I was pretty sure this was a false positive. I was so sure that I urged them to give me the shot anyway, knowing that if I did have opiates in my system, the shot would immediately trigger withdrawal symptoms. After a phone consult with my doctor at Mayo, they gave me the shot. The congressional physician was also monitoring my prescription for Antabuse and gave me my next pills.

  That afternoon, I went to a new prominent psychiatrist in Washington for a second opinion. (Actually, considering how many doctors were already in the mix for my care, this might have qualified as a ninth opinion.) He wanted to make some changes in the eight different medications I was taking for my mental illness and addictions: he wanted to get me off of Adderall and onto something less abuseable, and off my antidepressant, Wellbutrin, in part because of its small seizure risk.

  Later that same day, the congressional physician called my doctor at Mayo to point out that the antibiotic I had been given can sometimes create a false positive for opiates in a urine test.

  I realize these are a lot of treatment details, but I list them to note that this was just one day in my life as a person with bipolar disorder and addiction. Every question raised by every doctor was a reasonable one, and every one of these physicians was trying to do his or her best for me. But that is a lot of moving parts for one sick patient’s care—and that doesn’t even take into consideration the new emotional issues of bereavement and how they would play into diagnosis and treatment.

  This gives an idea of how ridiculously complex care can become and how many cracks there are to fall into, or hide in. It makes you wonder if this really is the best way to be treating illnesses, especially illnesses that can cause changes in perception and judgment.

  —

  THAT FALL WAS THE BATTLE of the Affordable Care Act (ACA). The biggest thing I could have contributed to Obamacare had already been accomplished. The various forces we had brought together to push through the Mental Health Parity and Addiction Equity Act were able to remain focused and engaged during the much more difficult fight for the ACA, to make sure that the two things that mattered most to us were included: a complete ban on refusing coverage because of preexisting conditions, and inclusion of mental illness and addiction as one of the “ten essential benefits.”

  While I suspect that the preexisting condition ban would have been part of any healthcare plan from either party, I have no doubt that if we hadn’t already passed the parity act in the last Congress, it would have been impossible to gather the political muscle needed to force it into a broader healthcare reform package. Especially without my father and Pete Domenici available to call in a career’s worth of political favors. Even with parity passed, it wasn’t easy to lock in mental health and substance abuse disorder as essential health benefits, and I worked hard with colleagues like Senator Debbie Stabenow of Michigan to try to get that done.

  This made me feel much better as I watched a
good bit of the work of healthcare reform from a distance. The night in September when President Obama announced the initiative to a joint session of Congress, I was sitting in the gallery with Vicki, Teddy, Kara, Curran, Caroline, and other family members, so we could be photographed together when the President invoked my late father and his lifelong mission of healthcare for all. I spent many of my weekends trying to make progress in inpatient or outpatient treatment, or recovering from binges, and did my best to control my agitation and anxiety around the office and on the House floor.

  I also spent a good bit of my private time—at home and in rehab—reading and wrestling with my father’s memoir, True Compass, my last chance to hear his voice. I sent out copies of the book to everyone in politics I thought would appreciate getting one from the family. But mostly I just read it, marking up passages in pen and Magic Marker and wondering what they should mean to me.

  On Saturday, November 7, the morning of the House vote on our version of healthcare reform, I was in rehab at Father Martin’s Ashley. Nancy Pelosi called and said she really hoped I could come back and vote. So my staff quickly arranged for a car and driver to come get me in Havre de Grace, Maryland, and I made the two-hour trip back to DC and to my apartment to get changed so I could be there by eight P.M. for the vote and completely shock the Republicans who thought they had it won.

  The driver dropped me off at the Capitol, I was checked in with the caucus whip, and I waited for about an hour. I walked onto the House floor, voted, and then Nancy Pelosi came over to me, took me aside, and said, “Thank you sweetheart, now you go right back to treatment,” and I walked out of the Capitol, back into the car, and back to rehab.

  —

  AMAZINGLY, BECAUSE OF the focus and determination of my staff—and my ability, which frankly was beginning to frighten me, to function just well enough in public when I wasn’t anywhere near well—not only did the office keep running smoothly, but that fall, I missed the fewest votes of almost any session of my career: I cast all but four of my 246 votes from October to December.

  But the longer this continued, the more I came to realize I really needed to make a major change in my life—to leave elected office. I talked it over with a number of people, all of whom were far more concerned about my health than my political career. While I had first broached the subject in therapy over a year before, the first time I said it out loud to someone in political life was to my father’s former chief of staff Dr. Larry Horowitz, who reached out to me several months after Dad’s funeral to see how I was holding up. While he encouraged me to make and to really own my decision, he didn’t dissuade me from making this change—and he also made it clear that even if I was thinking about it, I needed to discuss it with Nancy Pelosi right away. This was something she could not hear about secondhand from the wrong person, and I would need all of her support to make such a transition go smoothly for me, both personally and politically. We talked about how I could discuss this with her—and, knowing Larry, he probably quietly reached out to her to minimize her surprise.

  When I came to see Nancy, she was unbelievably supportive, gracious, and maternal, not only encouraging me personally but helping me with the practical politics of the situation. I wasn’t doing this because I was trying to get ahead of a scandal, I was doing it to save my own life and prevent another scandal. But if I started fund-raising in February—like all Congressmen do in an election year—and then I later announced I wasn’t running, that would be its own scandal. So Speaker Pelosi did me one in a long line of favors—she told my staff that she needed me for some work during the February break, a CODEL of some sort, and I wouldn’t be available for fund-raising. That way, there would be no cause for speculation or rumor when I abruptly canceled political fund-raising because the Speaker “needed me to do something for her.”

  We quietly bought airtime on local stations in Rhode Island for an ad, which David Axelrod helped us with, and on a Friday in mid-February, word began to leak that I had taped an ad and given an embargoed interview to Rhode Island Monthly. On Saturday, February 13, 2010, I confirmed that I would not run again for my congressional seat and would retire from elected office at the end of the year.

  This was all happening in the middle of the frenzy over the Affordable Care Act, which got hung up in the Senate partly because Republican Scott Brown won a special election for my father’s seat and the Democrats lost their majority. When Senate Democrats wanted to compromise, it was Nancy Pelosi and the leadership of the House who held out for a stronger bill, and I was honored to be part of that process. On Sunday, March 21, we passed the bill and it was sent to the President for his signature. At the White House signing ceremony two days later, Vicki and I were both wearing “Tedstrong” rubber bracelets. After the President finished signing, I presented him with a gift: a copy of my father’s very first national health insurance bill from 1970.

  But, for me, the more important act of closure had come earlier. The morning after the bill had passed, I went to Arlington before it was open to the public, so I could have some time alone at my father’s grave. While sitting there, on the grass next to his gravestone—not far from where his brothers Jack and Bobby were buried, and the marker for their brother Joe—I took out a piece of the note-sized congressional stationery I always carried in my suit pocket and a blue marker.

  I wrote, “Dad, the unfinished business is done.” And I placed the note to the left of his gravestone.

  Chapter 25

  A week later, I found myself in Atlantic City giving a speech at a $125-a-plate fund-raising dinner at Caesars. It was for an organization called The Arc of Atlantic County, a regional branch of the national charity for developmental disabilities that actually predated my Aunt Eunice’s work in this field. (The Arc began in 1950 as the National Association for Retarded Children.) I had agreed to do the speech at the request of my House colleagues from New Jersey, Frank Pallone and Rob Andrews, who had both been very helpful during the parity fight.

  I had no idea how my life would change that night at the Caesars Palladium Ballroom.

  After the speech and dinner, which raised $95,000, I was mobbed by people who wanted to talk to me. Among them was a beautiful, athletic thirty-year-old junior high school history teacher from nearby Absecon. Her name was Amy Savell, and she said she had come to the dinner as a last-minute replacement for her father, Jerry, a retired special-ed teacher and longtime local Democratic politician who was home with a bad cold. What she didn’t say was that she had just become a single mom, and this dinner was the first time she had gone out dressed up since her separation.

  Amy asked me for an autograph for her dad. As subtly as possible—which, for me, isn’t very subtle at all—I hit on her. In the note to her father, I wrote, “Sorry I missed you, but it was a pleasure meeting your beautiful daughter.” She beamed at me and headed back into the throng.

  Since I am pretty bad at hiding my emotions, I did my best not to appear overly interested as I watched her return to table 123. I had to play it cool. I couldn’t beeline right over to her or they’d all say, “There goes that Kennedy, after the pretty girls.” So I had to strategically shake hands with dozens of different people at different tables without appearing to be working my way toward her.

  When I finally got to Amy’s table, I diplomatically struck up a conversation first with her mom, Leni, also a retired schoolteacher. But it was pretty clear why I was there.

  I told Amy that if she ever wanted to, you know, bring her class to Washington, I was still in Congress for a few more months yet and would be more than happy to show them around. I insisted on giving her my card. As I handed it to her, I said something that surprised both of us.

  “Please call me,” I said. “But pretend I called you first.”

  —

  EVEN THOUGH HER DAD WAS, like many older Democrats, a longtime Kennedy buff, Amy wasn’t exactly sure who I was. She ended up Googling me
to figure it out.

  About three weeks after we met, she did call. We talked for a while and agreed to get together. I took the train from Union Station in DC to Philadelphia, and then had a car drive me to Atlantic City—where a friend had instructed me to make a reservation at the Knife and Fork Inn, a well-known restaurant. We had dinner together and then went to a club where Amy, who wasn’t sure how this evening was going to work out, had arranged for us to meet up with one of her brothers, as well as her best friend with her husband, both fellow teachers.

  The evening was fun and comfortable. I stayed overnight at Caesars, and the next night we went to a prizefight at Harrah’s, where I had arranged for ringside seats for us and Amy’s friends. It was one of the bloodiest fights ever, and Amy’s friend’s husband was wearing a white dress shirt that got splattered with blood. He took it off and we had the winning fighter sign it.

  The weekend was a tentative success, and I kept coming back. Since I wasn’t running for reelection for the first time in sixteen years, I could actually take the weekends off. I stayed at a smaller, noncasino hotel, the Seaview, where I felt more comfortable. Only my close aides knew how often I was taking the train to Philly and a car to Atlantic City.

  Our courtship was as therapeutic as it was romantic. I was very tired and very emotional. Amy realized I was still trying to process my father’s death and everything unresolved between us, I wasn’t sleeping well, and I wasn’t in great condition physically. Even when I came for the weekend to visit, there would be days when I hid in my hotel room at the Seaview and couldn’t get out of bed. This was far from normal dating. Luckily, Amy saw me as basically openhearted and kind, and different from other men she had known, who hadn’t been that open about their feelings. So, while other people might have found me insecure and whiny—I know I sometimes found myself that way—she enjoyed being around someone so willing to admit his fears.