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

by Patrick J. Kennedy

  All the press wanted to know was whether I had been drunk that night; they were obsessed by this—I think because, in our stigmatized world, it is easier to criticize a public person for a moral failing if they are drunk rather than abusing medication or struggling with mental illness. I realized then and there that I was going to have to come up with a better answer than the basic fact that I hadn’t been drunk. So, this press conference—this whole day, actually—became a big turning point.

  June 5, 2006, was the first day of the rest of my “comorbid” life.

  —

  IN MEDICINE, “COMORBIDITY” is a fascinating and complex term. It refers, technically, to the existence of two medical conditions simultaneously. But the inherent question comorbidity raises is the relationship between the conditions. Did one cause the other, increase the chances of the other? If one is treated will it impact the other? Or is it just a complete coincidence they appear together, a statistical truth with no unique medical recourse?

  The comorbidity between mental illness and substance use disorder is one of the best known in the history of medicine. Yet the worlds of research and treatment for the two were so separate that there were three national institutes covering them: NIMH, NIDA, and NIAAA. And in the real world of diagnosis and treatment, patients and their families had clear and often very emotional feelings about how they viewed themselves comorbidly: I’ve met people who really prefer to be seen as mentally ill and would be embarrassed to be thought of as having a substance use disorder (because, to them, mental illness is a disease and addiction is a weakness) and others who would prefer to be seen as having an addiction because they would sooner die than admit to being “crazy”—and sadly, some die by their own hand precisely for that reason.

  While this was all well-known—intellectually at least—to experts in both fields, there was, in the real world of Washington brain politics, far too little comorbidity. In fact, the conference that was being held at Brown that day was unique for that reason: Tom Insel and Nora Volkow didn’t appear together all that often, because back then they were viewed as overseeing two completely different, and mutually exclusive, government research fiefdoms.

  The same was true for Jim Ramstad and me. While I had been pushing primarily for mental healthcare, he had been pushing primarily for addiction care—and, in both cases, research to inform that care, and laws that fought stigma and other barriers against getting that care. It was time for both of us to focus on messaging that was comorbid and bipartisan.

  So, during that press conference at Brown—at which I was only thirty-three days sober, three days out of rehab, and probably nowhere near ready to be back in public—I decided I would answer all these questions carefully and comorbidly. I would talk about mental illness and addiction together—not just because they belonged together but because, as is true for many people, they affected my life in a completely comingled way, and I was only going to survive if I addressed them both, medically and one day at a time.

  I also tried to have a sense of humor about this because, too often, when experts or patients are put in front of a camera, they turn deadly earnest and, frankly, sometimes a little self-serious and boring. In private, however, I can tell you they are often hilariously funny. Part of my job was to make comorbidity accessible.

  In fact, the biggest laugh I got at the press conference was with a line people say in rehab, and in inpatient psychiatric care, all the time:

  “Frankly,” I said, “I didn’t know how miserable I was until I started feeling better.”

  And as word spread the next day that Jim was my sponsor in recovery—the Capitol Hill daily Roll Call found out somehow and we didn’t deny it—there was talk not only of comorbidity but also of a unique bipartisanship. Of course, it had been bipartisanship ten years before that allowed Paul Wellstone and Pete Domenici to co-sponsor the original parity act. But they were bipartisan family members, bipartisan caregivers—which was not surprising because at that time, in the political arena at least, the people with the illnesses primarily got a voice through their parents and family members.

  Jim and I were something different. We were bipartisan patients, consumers, whatever word you want to use for the people who actually struggle with the diseases and conditions. (The most recent word used is “peers.”) We had what is called “lived experience.”

  Parents and family members tend to talk about cures and remissions. Those of us with the illnesses know that what passes for “remission” is just the times when we can hold the cravings and symptoms at bay. We aren’t living for the future; we’re trying to survive and actually enjoy the present.

  We’re also in a struggle over where to focus our anger and blame: while we can be angry at our families and at the system, just like anyone else, our best chance of remaining in recovery is to blame the real culprit here. Which is, of course, the illnesses.

  We are sick because, well, we are sick.

  —

  EIGHT DAYS LATER I was appearing at district court to plead guilty to one count of driving under the influence of a prescription drug, with a supervised probation of not less than twelve months. I agreed to commit to attending regular meetings of Dr. Smith’s group and other AA groups, and to submit to random urine drug screenings. I also had to do fifty hours of community service and make small contributions to the Crime Victims Fund and the Boys and Girls Clubs of Greater Washington. Jim Ramstad came to court and stood by me as his first official act as my sponsor—which he had vaguely acknowledged in the press (in stories my office had confirmed, not his), but when the judge surprised him and directly asked him in court, he told the truth.

  Besides all my AA meeting commitments, I had also begun a course of cognitive therapy treatment with a psychologist in Providence, who worked in tandem with a psychiatrist in DC who oversaw my meds. So I talked to the psychologist weekly and sometimes more often than that. I spoke to the psychiatrist less frequently, but he was made aware if anything major changed. This is now a relatively common model of care, but in 2006 that was less true.

  For the first time I was getting more directed, more result-oriented CBT as an outpatient. The therapist stood up to me and was quick to set limits. So when I was upset or depressed and, say, went off on one or both of my parents in therapy, my therapist talked to me about living in the present. We discussed strategies for how to avoid getting caught up in cycles of obsessing on the past and assuming that my current feelings of anxiety could be cured by somehow making sense of what happened when I was ten. And she gave me very clear and directed homework so that I knew what I was supposed to be working on between sessions and what we would plan to work on in the next session.

  For example, when I was planning to go see my family at the Cape, we focused on strategies that would help me not to obsess on feeling shame for what I had done, or fall into the trap of imagining all the things my father meant or felt when he didn’t directly address things or made little passing remarks. I told the therapist I was glad I had discovered mental health advocacy, because there were times when it was the only thing that made me feel useful and hopeful for the future.

  Some of the goal setting was pretty basic, like getting out of bed in the morning. But when you’re struggling with depression and anxiety, and still coming down from drug and alcohol addiction, fulfilling the goal of getting out of bed can actually be quite an accomplishment.

  I spent the summer just trying to get through the summer. I was still pretty raw and sometimes felt overwhelmed. I remember one day in August my brother invited me to come out on the daily sail with his family and some of his friends. I just couldn’t deal with the big group. And then I worried that word was traveling through the family that I had turned down a chance to sail. So everyone was probably wondering what that meant—without anyone actually consulting me.

  This is a common irritant for people with mental illness; everyone discussing how you �
��feel” without ever asking you how you feel. It’s also common for us to assume our family members are having that discussion, even if we don’t know for sure that they are.

  —

  POLITICAL SEASON BEGAN again after Labor Day, and Jim and I had given our big interview to the New York Times about our personal and political journeys and where they had led us. I was unusually frank with the reporter—being only four months sober and going to AA meetings every day will do that to you. And besides the messages we were already sending, he picked up on one I never would have brought up: that my new approach to mental health parity and addiction equity (the phrases we were developing to combine the comorbid illnesses) had to do with my own diseases, but also generational issues within my family.

  Now, these were hardly generational issues unique to the Kennedys. They were true of pretty much every family in America. But, of course, my father didn’t quite see it that way when the Times reporter called him for a comment and asked, among other things, whether or not he was still drinking. Dad described himself as being “well” over the past 15 years, a recovery he attributed to Vicki; he said he drank a glass of wine at home at night or in social settings.

  My father also didn’t love that I was quoted saying: “When you grow up in my family, being somebody meant having power, having status. The compensations you got were all material and superficial. I’ve come to realize, in the last few months, that that life made me feel all alone.”

  While I’m sure I said this, it’s the kind of thing people say about their families when they are recently out of rehab and not very far into recovery. I still wasn’t acknowledging the illnesses as the primary culprit of my situation, or that the responsibility to change began with me alone.

  The article was mostly about what had been a fairly hidden world of recovery on Capitol Hill. It was set at a regular Tuesday dinner that Jim and others had been attending for years at Morton’s after their regular weekly twelve-step recovery meeting with Dr. Ron Smith—a dinner where all the drinks were soft but the revelations were often quite hard and emotional. This dinner just happened to mark my fourth month of sobriety. The article also mentioned several current and former legislators who had been part of this eclectic group, including former Senator Max Cleland—one of several members seeking twelve-step support for something other than addiction (in his case, PTSD). These meetings and dinners had become a huge part of my new life in recovery.

  The story did mention that my dad and I shared a meal once a week, but even he was quoted as lauding Jim’s “incredible generosity of spirit.”

  In the piece, Jim was quoted as saying he had come to love me “like a brother.” But the reporter, who joined us for dinner, also noted the way that he told me to put my cell phone away was more like a father. I joked that I had never before taken direction from any Republican.

  This piece appeared on the front page of the Times with a photo of Jim and me leaving the courthouse together after my guilty plea. And while our goal had been just to get our colleagues to take this legislative issue more seriously, the coverage served to accomplish something much more important: all of a sudden, the battle for mental health parity and addiction equity seemed incredibly personal.

  —

  THAT NOVEMBER, the Democrats finally regained control of the House, where we picked up over thirty seats and elevated Nancy Pelosi to Speaker. And I was reelected by the largest plurality of my whole congressional career, so voters seemed able to put my car crash and treatment into perspective. The Senate also came back under Democratic control, although by a much smaller margin. This allowed my father to resume chairmanship of the Senate HELP Committee, which would be the key to any legislation reaching the floor.

  Yet, in the new year, my father and the leadership of the Senate threw their support behind a new mental health parity bill that was, in my opinion, far too similar to the one Pete Domenici had championed ten years earlier when the Republicans were in control. For several months, they had very quietly invited the main opponents of parity into their negotiations to make sure all stakeholders were heard from, which was fine. But they made too many compromises to keep the most powerful parties happy.

  What they ended up with was the kind of legislation likely to be supported by insurance companies; large employers with many insured workers; the pharmaceutical industry; the most powerful guilds (the American Medical, American Psychiatric, and American Psychological associations); and the most powerful lobby for the very sickest mentally ill, NAMI—along with Senate Republicans, who, like many of his friends across the aisle, wanted to give Pete Domenici a well-deserved namesake bill for all his years of groundbreaking advocacy for serious mental illness.

  My father’s bill certainly did succeed at eliminating some discrimination in deductibles, copays, and annual and lifetime treatment limits. But it was not clear which diagnoses were covered and protected—leaving that decision largely to insurers. His bill did not mandate full parity for all mental illnesses, and it didn’t include parity for substance use disorder treatment at all. If passed it would allow discrimination in the coverage of many brain diseases—including the ones from which Jim and I suffered—to remain completely legal.

  That was far below the gold standard of parity that had already been put in place for all federal employees—including the members of the Senate and House and their families.

  The bill Jim and I were writing in the House, of course, covered all mental illnesses and addictions. It was to be a full civil rights act for brain disorders—all the mental illness diagnoses in the DSM, and all substance use disorders. It was the kind of bill that consumers, their families, and all their caregivers and institutions of care were likely to support.

  There was also one other major difference between the Senate bill and the one we were drafting, one that was fairly technical in nature but would make a huge difference. It involved how the federal bill would impact existing state parity laws. Since healthcare is basically delivered state by state—even under federal programs like Medicaid—the state laws often influence patient experiences much more than national mandates. When the 1996 federal parity act proved so ineffective, many states had passed much stronger mental health parity laws offering better coverage for more illnesses. But my father’s Senate bill, in one of its most industry-friendly nods, would have legally superseded any state laws that allowed greater fairness in coverage. In our bill, if the state wanted more protection for consumers than the federal mandate, the state law prevailed.

  I took the differences in the two bills really personally. How couldn’t I? Theirs didn’t cover parity for substance use disorders even though my mother, my brother, and I had all been treated for them—and just weeks before my father introduced his bill, my sister, Kara, who had been very curious about my inpatient experiences at Mayo, quietly checked herself in there for treatment. So now all three of us—including my much more resilient older siblings—had ended up in recovery from this family illness. Yet substance use disorders still weren’t covered equitably in my father’s Senate bill.

  I found myself talking about parity and my relationship with my father during my cognitive therapy sessions, especially at the end of February—when there was always a celebration for my dad’s birthday—and the beginning of March, when I got my AA “chip” for being ten months sober.

  If I couldn’t convince my father that he was not only backing the wrong bill but indulging in some strange form of legislative denial, then all I could do was try to beat him. So I decided to take a page from his own playbook. Early in his career, my father had taken an unconventional tack in his effort to pass healthcare reform: he held what were called “field hearings,” all over the country. The idea was to re-create the kinds of intense, well-orchestrated, full-day hearings usually held on Capitol Hill and take them to the public, state by state, to build local support. I went along on some of them. They were great fun and often
fascinating because of the chance for public testimony.

  Jim and I decided we would do the same thing for parity. And since these field hearings looked and sounded official but could not be paid for out of our House member budgets, we got Mental Health America—which represented the broadest coalition of patients with the widest range of diagnoses—to fund these events and congressional supporters to host them in their home districts. That’s how the Campaign to Insure Mental Health and Addiction Equity was born.

  In the first three months of 2007, we did hearings in fourteen cities, starting with our home districts in Rhode Island and Minnesota, and then going on to Rockville, Maryland; Los Angeles; Vancouver, Washington; Sacramento; Palo Alto; the Denver suburb of Aurora (where, five years later, a young man with mental illness would kill twelve people and injure seventy more in a movie theater shooting); the New Jersey State House in Trenton; Elwyn, Pennsylvania, outside of Philadelphia; Dallas; Tulsa; and Pittsburgh. Eighteen members of Congress and two US Senators hosted the hearings or participated in them.

  Wherever we traveled, we combined national and local elected officials, representatives of state and local care facilities and advocacy groups, and lots of “public testimony” from ordinary citizens who had been denied mental health or addiction care because it was still legal to discriminate in coverage of their illnesses. And because Jim was a hero in the recovery movement, the hearings also included people who rarely looked to the government or health insurance for their care, because they were committed to the volunteer and free support of AA and other twelve-step groups.