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

by Patrick J. Kennedy

  In fact, the life I needed to save at that moment was my own.

  My family and staff did a very good job of keeping it quiet that, two weeks after my mom was hospitalized, I checked into the Mayo Clinic in Minnesota, one of the only places in the country that specialized in treatment of “dual diagnosis” patients.

  I was admitted to the medical side of Mayo complaining of back pain. But, just as the first doctor I saw described me in his notes as a “pleasant, medically complicated gentleman,” my chronic back pain wasn’t the real reason for my visit. Between the pressure of work and the emotional strain of my sister’s cancer and my mother’s advanced illness, I had stopped taking the Suboxone or the naltrexone to prevent narcotic abuse and had again started taking Percocets for my back pain and my brain pain. I was swallowing up to twenty of them a day, and then sometimes would wake up in the middle of the night withdrawing and needing more. I had crossed the line with opiates.

  The only lucky thing about this was that I had no problem getting Percocets by prescription, or paying for them. What was happening with a lot of people like me, who were addicted to opioids, is that they slowly, invariably were making the transition to heroin—which was much cheaper and, from what I heard, more powerful and pleasurable. I was, honestly, afraid I would like heroin too much to try it.

  Although I had not been admitted to the mental health wing of Mayo—for fear I’d be discovered there—I was really honest with the doctors I met with, in a way I hadn’t been before in more regular care. In general, my overall moods were pretty bad and my anxiety levels were off the charts. (I really had chosen the most unlikely profession for someone with an anxiety disorder.) When I wasn’t working I really couldn’t deal with being around people—and was often faking it when I was around them during the day. You get good at that with these illnesses. Too good.

  I also managed my private life so I could remain isolated. So I hadn’t dated anyone regularly in nearly two years.

  The physician at Mayo had a really interesting observation about me that nobody had ever suggested before. He felt that besides my bipolar disorder and addictions, I had a chronic anxiety disorder—the symptoms of which were sometimes being misinterpreted as asthma attacks. This sounded accurate to me as a patient, and I was relieved it might offer a better chance of getting all my symptoms under control. But in the political world of mental health, I knew to keep a secondary anxiety diagnosis to myself. Bipolar disorder, my primary diagnose, was considered a “serious mental illness.” Anxiety disorders still were not, so if I admitted to having one, I’d be more likely to hear critical, stigmatizing “snap out of it” feedback.

  Interestingly, during this time, the American Psychiatric Association was starting the process that would eventually lead to a new Diagnostic and Statistical Manual (DSM). At that point, they were setting up a massive international literature search and analysis, convening thirteen international research planning conferences, with over four hundred experts from thirty-nine countries, in cooperation with the World Health Organization (WHO) Division of Mental Health, the World Psychiatric Association, the National Institute of Mental Health (NIMH), the National Institute on Drug Abuse (NIDA), and the National Institute on Alcohol Abuse and Alcoholism (NIAAA).

  One of the major global changes they were contemplating for the new DSM was simplifying diagnosis by viewing mental illnesses on a “spectrum” and recognizing that, when symptoms were most pronounced and disabling, all mental illnesses could be “serious” by the definition of society (and government). And just as many could be treated before becoming more serious and even possibly prevented.

  But that new paradigm was years from being published (the new DSM came out in 2013) and even longer from being accepted. So, while I was quietly starting to be treated for anxiety as well, in public settings I would continue describing my diagnosis as addiction and a mood disorder. Nobody would question whether these were “serious.”

  I spent six days at Mayo, getting detoxed and getting my meds checked and changed. And then I went back to my life as a Congressman, trying to improve the care of the diseases from which I suffered.

  —

  BESIDES TRYING IN EVERY SESSION of Congress to pass a new mental health parity act, we had a number of other legislative efforts meant to improve the world of brain diseases. Not long after President Bush took office, the NIMH commissioned a consulting firm to look again at the cost of making mental health parity the law of the land. And then the Robert Wood Johnson Foundation convened a sort of health actuary Woodstock workshop to explore the same issue. These two efforts combined to create a whole new way of crunching the numbers for our side, which was then accepted by the Congressional Budget Office, which does statistical analysis at congressional request. So, from 2002 on, the official CBO figure for the increased cost of mental health parity was 0.9 percent—which was under the political magic number.

  That still wasn’t enough to get parity passed in a Republican-controlled Congress—especially since, now, we were calling our House bill the Senator Paul Wellstone Mental Health Equitable Treatment Act in Paul’s memory and were including substance use disorders, which would increase the cost. But it was a big step in the right direction.

  So was the creation, in 2003, of a new advocacy partnership called the Campaign for Mental Health Reform. Inspired by the success of the Campaign for Tobacco-Free Kids, the Campaign for Mental Health Reform was the brainchild of my friend and colleague Andy Hyman. Andy was a healthcare lawyer who had worked in several high-ranking positions at the Department of Health and Human Services (HHS) during the Clinton administration, and was then director of government relations and legislative counsel for the National Association of State Mental Health Program Directors—a very influential group representing the mental health executives overseeing all publicly funded care in every state. The campaign was started by that organization, NAMI, the Bazelon Center for Mental Health Law, and Mental Health America but included the CEOs of almost every major player in the field. It was run by my advocate friend from Rhode Island and NAMI, Bill Emmet, along with Andy.

  I also proposed several pieces of legislation with strong mental health and family themes. One was the Keeping Families Together Act, which would combat an utterly appalling problem we were hearing more about: states were forcing families to give up custody of their children with serious mental illnesses as a condition of providing them treatment. We also proposed the Child Health Care Crisis Relief Act to address the critical shortage of mental health professionals with experience treating children, creating incentives to recruit and retain psychiatrists, psychologists, social workers, psychiatric nurses, and others already able to provide care to younger patients; the legislation would also create programs to train a new, larger generation of caregivers for children. We proposed the Positive Aging Act to help with the crisis of seniors with undiagnosed and untreated mental illnesses. And we also proposed the first major PTSD treatment bill for veterans, the Comprehensive Assistance for Veterans Exposed to Traumatic Stressors Act.

  I had also introduced the sweeping 21st Century Health Information Act, a bill that would dramatically transform how healthcare information was captured, stored, and analyzed—locally, regionally, and nationally. It was an expanded version of a previous bill I had championed, the Josie King Act, in memory of an eighteen-month-old girl who died on Martha’s Vineyard because of medical errors and massive health information screwups. The 21st Century Health Information Act—which especially would have revolutionized how mental health and addiction records were kept—was cosponsored by a relatively new face on the brain disease political scene, Representative Tim Murphy, a Republican psychologist from Western Pennsylvania who was very interested in mental health legislation. (One of the biggest challenges of encouraging medical information technology is that, even today, we still have separate rules for records concerning mental illness care and addiction care, because of e
xtra privacy restrictions, including those from an old section of the Code of Federal Regulations, 42 CFR, Part 2. These were all probably well-meaning when put into place but now prevent the easy flow of crucial information between caregivers and block true parity from being achieved. Today, my own personal physician still can’t easily access my rehab records because of these restrictions.)

  All I could do was try to keep the appropriations and legislation coming, and try to maintain my own health and sanity. And since my siblings and I were now my mother’s medical guardians, we were also overseeing her health aggressively for the first time. In early October, just as Breast Cancer Awareness Month was getting under way, she discovered she had a lump in her breast and we helped make sure she got immediate care. Because it was found early, only a lumpectomy was required.

  Unfortunately, my health was harder to get under control. When I wasn’t feeling well, I had a tendency to take too many pills, and not always for the reasons they were prescribed. So I found myself haphazardly taking Suboxone, which was supposed to help me get off of opiates, because I thought its sedating side effects would help me with my anxiety. And then, to counteract that, I would take a lot of stimulants and drink a lot of coffee to stay awake and alert at work—which I, basically, was able to do. The irony is that this was happening during the intense Capitol Hill meetings in which major cuts were being made in the budgets of all the agencies that were charged with improving mental healthcare and drug and alcohol addiction treatment.

  I remember being in an Appropriations meeting about increasing DEA funding to help attack the rise of OxyContin abuse, while I was sitting there with Oxy pills in my pocket. I made it a point to keep whatever pills I was taking in a Bayer aspirin bottle, so anyone who saw me take one would assume I was treating a garden-variety headache. (Since I also sat on the committees appropriating for DEA, I did wonder why Oxy abuse was being treated primarily as a law enforcement issue rather than a health issue.)

  Amid this daily grind of self-medicating, I would intermittently go out for a planned “lost night” to blow off all the stress. I went out with friends, had five Glenlivets right away, almost blacked out, and then just kept drinking; it wasn’t uncommon for me to have fifteen or twenty drinks in an evening. I had a car waiting for me to take me home. Then I would sleep a few hours before getting up and going to work. I remember after one of these nights I had to wake up and give a speech to a group of drug and alcohol counselors.

  As the 2005 holidays approached, I got it into my head that I needed to go to Liberia in January on a “CODEL”—short for “congressional delegation,” a government-paid trip to inform legislation. I did have a substantial Liberian population in my district, but this would have been a very challenging and probably dangerous time to go. Even the State Department was saying they couldn’t guarantee my security, but I was hell-bent on making this trip across Africa. My staff was scared for my safety, and my chief of staff, Sean Richardson—the only one who knew anything concrete about my health challenges—was worried I would get sicker over there, and also possibly run out of whatever prescription drugs I was overusing.

  Sean had just recently lost his father to cancer and was trying to be home for the holidays with his family but instead was on the phone with me about Africa. I finally called him Christmas Eve and he was sitting in the car in his in-laws’ driveway begging me to cancel this trip—because he was sure that if I went, I was never coming back.

  “I just lost my dad and I’m not losing you, too,” he said. And I finally just caved in, broke down, apologized for being so unreasonable, and asked him to get me back into treatment somewhere.

  —

  TWO DAYS AFTER CHRISTMAS, I was admitted to the Mayo Clinic for the second time in eight months. Again I insisted on being treated on the medical side (which is the patient’s choice) so, if I were discovered, nobody could easily prove I had come for mental healthcare; I could be detoxed without anyone finding out just how deeply depressed I was and how manic I could be. I was also taking an enormous number of medications. The list was staggering:

  Lithium carbonate, 300 mg three times a day for bipolar disorder

  Lamictal, 200 mg three times a day for bipolar disorder

  Prozac, 20 mg daily for depression

  Wellbutrin, 75 mg tablets, three tabs in the morning, three at noon, for depression

  Buprenorphine, 16 mg four times daily (my chart said “for back pain” but this was to help me avoid narcotic pain meds)

  Docusate, 240 mg, three tabs four times daily for constipation from buprenorphine

  Clonazepam, 0.5 mg once or twice daily for sleep or anxiety (my chart said “rarely uses but primarily for sleep”)

  Ambien, 20 mg about once a week, as necessary for sleep

  Caffeine, 200 mg tablets, about three tabs daily for alertness in morning

  Alka-Seltzer in the morning for dyspepsia

  Ibuprofen, 600 mg three times a day for back pain

  Proventil HFA, two pills four times a day or as needed for shortness of breath

  Advair 500/50, one puff twice daily for asthma

  Singulair, 10 mg at night for vasomotor rhinitis

  Intal inhaler, two puffs before exercise for asthma

  The doctors on the medical side did their best to try to convince me I needed to transfer over to the Intensive Addiction Program, which meant moving into another building, the Generose Building, and technically being in rehab. I just couldn’t bring myself to do it. After eight days of being told I really needed to be in the addiction program, we agreed on a ridiculous compromise—I would stay in the medical wing but join the day program at Generose, which was primarily for people who lived nearby and were sleeping in their own homes.

  I was still having issues being in group sessions; I just felt nervous sharing any real truth (especially after my name tag disappeared a couple times from my breakfast tray and I became convinced someone was saving up information to sell my story). As I detoxed and participated in the longest intensive treatment of my life, I was also thinking that I had quite a history of unresolved feelings of rage. We discussed whether anger management could be part of my treatment.

  On my sixteenth day at Mayo, I had a revelation. During an individual therapy session, the psychiatrist started talking to me about cognitive-behavioral therapy (CBT). He explained that CBT was a type of short-term, practical, goal-directed therapy that focused not so much on bringing up and examining painful memories but instead on identifying certain present-day behaviors and the sometimes distorted thinking that fueled them, trying to modify beliefs and relate to others in different ways—and by doing so changing behaviors.

  CBT had been pioneered in the early 1960s by a psychiatrist at Penn named Dr. Aaron “Tim” Beck. I had certainly heard of CBT because it was growing in popularity—especially among clinical psychologists, who now vastly outnumbered the psychiatrists who had almost exclusively done psychotherapy until the 1970s. In the growing area of mental health managed care, CBT was also the only psychotherapy that had been studied in depth for efficacy in clinical trials—just like medications were studied, because Tim Beck was very practical about not only his therapy itself but how it would be reimbursed.

  I knew some of this already, at least from a mental health policy standpoint: this type of result-oriented psychotherapy was a large part of what we were arguing needed to be covered under mental health parity. Ironically, however, I had to admit that while some considered me the nation’s leading advocate for cutting-edge mental healthcare, I had never in my life had one session of cognitive therapy. I had always had more supportive and psychoanalytic psychotherapy, during which, except for the part of the session in which my meds were checked, I was free to drone on about who in my family I was still most angry at. It was often my dad, for old wounds that wouldn’t heal.

  So, for the first time ever, I spent most of a therapy
session talking about strategies for managing my moods, and ways of identifying anxiety-provoking thoughts and stopping myself from acting on them. We talked about how I could stop worrying about the possibility of appearing anxious in social situations, and by doing so maybe actually be less anxious. I’m not saying this solved all or any of my problems immediately, but it was, for me, a unique and healthy approach. I was sent back to the medical wing with homework for my next session—which is very common in CBT but nothing I had ever done before. I was told to start creating a list of positive activities I could engage in to help manage my anxiety.

  I could exercise, but in my years in Washington I had never managed to do that consistently. I went through periods where I swam in the Capitol pool—which is below the Capitol basketball court and the weight room where members of Congress blow off steam. I also sometimes went running around the Mall. But I had found it hard to stay on a schedule, and when it came to running, I was also a little bit afraid to be seen in public doing it badly—since I come from a family of hard-core exercisers. I would often run in a floppy hat and sunglasses so nobody would notice me shuffling among the monuments.

  When it was possible, I always wanted to be sailing—which was for me, just as it was for my dad, a way to relax and focus on the here and now. In spite of my sailing fiascos, there were many more uneventful sails across the Sakonnet River between my home in Portsmouth and Sachuest Point, on the other side of my congressional district in Little Compton, Rhode Island.

  These were all things I could do more but didn’t. Generally, I neither relaxed on weekends nor did things that might energize or reenergize me during the week. Instead, I would burn myself out with alcohol and worry about what was coming during the next week.

  Working out or sailing more would not change the fact that I had a mental illness. But it seemed like there might be a better way to help me stay on my treatments and face daily life with more optimism, control, and self-awareness.