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

by Patrick J. Kennedy

  Now, I suppose you can be cynical about this and say that my father was doing due diligence mostly on my mom’s stamina, not her feelings, and that if she relapsed and he was blamed it would hurt the campaign. And, given how her illness played out, I can only imagine how the pressures of the White House might have aggravated her alcoholism and depression. But I will note that there is something about this discussion they had—the kind of thing that almost never happened back then—that seems sort of progressive. It was in no way judgmental; nobody was asking how and why my mother had reached this point in her life and her treatment, only what the status of her illness was and what she thought her capacity might be. They wanted her to make the most informed decision possible about her own health, with all angles considered.

  As a twelve-year-old, I’m sure I rolled my eyes over this at the time. Now it strikes me as kind of enlightened—not emotionally, because my mom was putting her health at risk in hopes of saving her marriage and advancing my father’s career, but simply as cutting-edge disease management. If she had heart disease and they were talking about going mountain climbing, it would make sense to consult expert cardiologists beforehand. Why not have such frank discussions about alcoholism and mental illness?

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  THIS DISEASE DUE DILIGENCE is especially interesting if you consider what was going on at that very moment in the politics of brain health. When Jimmy Carter took office in 1977, one of his first acts was to create the President’s Commission on Mental Health, the main legislative priority of his wife, Rosalynn, who was named honorary chair.

  At the beginning of the Carter administration, there were high hopes for President and Mrs. Carter’s ambitions in all of healthcare reform. My father was optimistic—this was, after all, the first Democratic president since Lyndon Johnson. And I recall a White House family picnic during his first summer in office, during which President Carter noted that I was the only member of my immediate family with red hair and freckles. He said I looked “more like one of [his]” than a Kennedy.

  Mrs. Carter always had been passionate about advocacy for people with mental illnesses and developmental disabilities, and when her husband became governor of Georgia in 1971, it became the primary focus of her public life. She got to know my family first through my Aunt Eunice, because as First Lady of Georgia she was very active in the state’s Special Olympics and sat on the state commission to improve services for what they called “the Mentally and Emotionally Retarded.” But she was equally if not more interested in mental illness—medically and socially—in part because people with mental illnesses had not received the same funding and protections as those with developmental disabilities. Her main focus was on “serious mental illness”—whose victims either don’t respond to treatments or are unable to stay on them, and therefore often end up disabled, homeless, or in prison. But her goal was to hold hearings leading to a broad bill that would help everyone suffering from a brain disorder.

  The hearings addressed many of the problems identified in JFK’s Community Mental Health Act that had remained unsolved—or in some cases had actually worsened—since that historic legislation. The commission’s deliberations went on for more than a year and drew an incredibly broad cast of characters, most of whom agreed on almost nothing. This was partly because, in an attempt to be broadly “inclusive” at a time before a true medical understanding of mental illnesses had emerged, every social, ethnic, and gender issue that might produce psychological stressors was included in their discussions.

  At the same time this was going on, a quiet revolution was beginning in mental healthcare—the first major rethinking of the diagnosis, treatment, and underlying causes of mental illness in decades, perhaps since Freud at the turn of the twentieth century. It came in the form of a landmark revision of the primary manual of psychiatric diagnosis in the US—the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association. The DSM, as it’s called, began in the 1950s as little more than a slightly expanded and Americanized version of the mental health section of the World Health Organization’s standardized listing of the name, description, and code number of every known illness, the International Classification of Diseases, or ICD. (The ICD’s history goes all the way back to 1893, when it was the “International List of Causes of Death,” issued by the International Statistical Institute.)

  Some people still refer to the DSM as “the bible of mental health,” though it’s actually more of an encyclopedia; in the late 1970s it wasn’t culturally powerful enough to be widely known as either. It was known mostly because in 1973 homosexuality was removed as a mental illness and replaced by the category of Sexual Orientation Disturbance for those seeking therapy about gender issues. The codes and descriptions in the DSM only became hugely important later in the eighties and nineties during the rise of managed care, when the treatment of mental illness—like the treatment of all illness—became more mechanized, medicalized, centralized, and capitated by the influx of more corporate-run HMOs.

  In the late seventies, the revision that became the DSM-III—led by Columbia psychiatrist Dr. Robert Spitzer—was more of a medical and intellectual endeavor. Its main goal—besides producing a much longer and in-depth DSM—was to help psychiatric diagnosis move on from blaming everything on “neurosis,” largely the reaction to faulty parenting. The hope was to develop diagnoses based more on the idea of brain illnesses that are partly genetic and partly triggered by any number of possible causes, but needed to be more accurately described and categorized.

  This work was driven, in part, by the research Spitzer and others did to prove the current, simplified, neurotic diagnoses were being used differently by different doctors. (“Schizophrenia,” for example, meant different things to different clinicians around the US and in the UK.) But also, the first generation of useful psychiatric drugs—Haldol to sedate and address the hallucinations and thought disorders of psychotic disease, imipramine to help pull patients out of unipolar depression, lithium to help balance the mood swings of manic depression—were already showing that certain symptoms could be lessened just by the right medication. While they weren’t cures, they allowed for the possibility that patients could see psychiatric symptoms for what they were—symptoms—and develop insight into their diseases and the value of sticking with the treatments, however imperfect. And the rise of directed, short-term “cognitive” psychotherapies—which focused not on your past, but on reinforcing your ability to function in the present and see the future—was suggesting a new role for diagnosis and the different forms of treatment.

  The new DSM-III was meant to offer a road map to all that. It was also meant to be written in such a way that nonphysicians might use and understand it.

  With all this going on in mental healthcare, and the Carters and the Kennedys working together to forward JFK’s historic agenda, it was an odd time for the First Family and my family to pair off against each other. But that’s what we did.

  On May 15, 1979, President Carter submitted the Mental Health Systems Act to Congress, and my dad and his colleagues began marking it up. Three months later, my father decided he was going to run against President Carter for the Democratic nomination.

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  I WAS TWELVE YEARS OLD when my father’s presidential campaign began, but I have strong memories of it, because he often brought me along to keep him company. That began before the race even started, since I was the only other family member present for the infamous interview my dad gave Roger Mudd of CBS in Cape Cod, which forever changed the level of media scrutiny of my family.

  It was the last weekend in September of 1979, and the first day of filming for what was going to be a one-hour CBS Reports prime-time news special about my father and his presumed presidential run—scheduled to run during November sweeps against the network premiere of Jaws and raise the curtain for his official announcement. The CBS camera crew was invited to Hyann
is Port to cover a typical family weekend at the Cape. But, at the last minute, my eighty-nine-year-old grandmother became ill and left. Then my mom begged off, saying she didn’t feel well, so she didn’t drive down from Boston. My sister and brother bowed out. So it was just Dad and me. He expected to do a pretty easy, benign interview with his friend Roger Mudd, and then he and I were going to sail.

  My father, Mudd, and the CBS crew decided to do a sit-down interview in the backyard of my parents’ house on Squaw Island, which is just a five-minute drive from Gramma’s house in Hyannis Port, but a little more secluded. Dad and Mudd were dressed casually, sitting in captain’s chairs on the lawn, which overlooks the ocean. While the cameras rolled, I peeked from the side of the house to see what was going on.

  My dad sat and gave stock answers to stock family questions. He was not really comfortable talking freely about personal things, in public or in private. But this wasn’t enough for the CBS producers, who had come all this way on a weekend to get good Kennedy family scenes for their prime-time special. Nobody, however, mentioned this problem to my dad.

  After forty minutes of filmed conversation, the cameras stopped and we thought we were done. Dad told me to go start getting the boat ready, and he would catch up with me in a moment. Then Roger Mudd asked my dad to sit down again for just a few more minutes.

  This time, Mudd went right for the tough questions. This should not have completely surprised my father, but somehow it still did. Mudd asked about my parents’ marriage, he asked about Chappaquiddick, and he asked why my dad wanted to be president. My father mumbled, backpedaled, completely choked—he was always better on offense than defense in public speaking. The moment it was over he knew it had been a disaster.

  The CBS crew left, and we went sailing. Out on the water, he tried to pretend everything was fine. But he just kept shaking his head, looking out to sea, and muttering to himself. He was replaying the interview over and over in his head. It was painful to watch. I had never seen him so upset with himself.

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  ALTHOUGH THE CAMPAIGN had a rocky start, it turned out to be great fun for me. I had a lot of time with my dad on campaign planes and in hotels. We’d play crazy eights when he had breaks. And he would always have an extra set of index cards made up for his speeches, so I could have one of my own and follow along, drawing stars next to the lines I thought worked best.

  I kept a handwritten journal of the adventure in a school composition book, where I described everything from the campaign events (“our motorcade was really neat”) to family escapades (“Anthony Shriver and I . . . met up with my mom at a Ramada Inn. There we played ding, dong, ditch, till 2:00 am”) and campaign strategy (“mom’s speeches are a little different than dads her speeches talk about ERA instead of inflation, Education instead of economy”).

  When he traveled without me, I was often worried about his safety. He called me every night just to chat and catch up, but he and I both knew that the real reason for the phone call was accomplished the moment I heard his voice: he was calling to assure me that he was okay.

  He never let on that he was worried anything would happen to him. But after he died I was given something that showed me one way he dealt with the risks. It was a letter my father had written to me at the start of his presidential campaign in case he was assassinated. In it, he talked about how much he loved me and how I had given him so much love. He said he would never forget the times we went fishing and sailing. He advised that I should follow the example of my brother and sister and do what they suggested.

  It was amazing and chilling to get this letter recently—especially since it was handed to me by Dr. Larry Horowitz, a physician and political adviser who had been one of my father’s closest confidants, first as staff director for him on the Senate Health Committee, and later as his chief of staff. Larry was also my father’s family healthcare consigliere, and he played a crucial role in my relationship with my parents. Without ever breaking the rules of confidentiality, he had been a healthy sounding board and reality check for me with my parents from my earliest diagnosis with asthma. When my parents couldn’t handle my emergency calls—and even when they could but didn’t know what to do—Larry was usually the next call. Later, when I was a Congressman and my staff was concerned about my mental health, they would reach out quietly to Larry for help. He knew a lot of things my father never knew about me. So I was deeply moved when he gave me this old letter—because, he said, he felt I finally was well enough, and had been sober long enough, to handle it.

  Actually, one of Larry’s earliest medical interventions on my behalf came during the latter part of my father’s presidential campaign. By this point, the race wasn’t going well and we were stuck on smaller and smaller propeller planes. We were flying across the Midwest one day when I experienced a really sudden and severe asthma attack. While some wanted to keep going, Larry insisted to my father that we needed to put down as soon as possible at the nearest airport, which turned out to be in St. Louis, so I could get emergency medical care.

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  MY FATHER’S PRESIDENTIAL BID ended on the evening of August 12, 1980, on a stage at the Democratic National Convention in New York’s Madison Square Garden. My mom stood with him on the stage during his speech—pretty much the last time I was going to see my parents together looking like husband and wife. And my sister, brother, and I watched from the wings.

  We were called to the stage near the end of the speech, to be with him before he delivered the famous finale. He actually sounded a little more nervous than people remember, but still captivating, as he declared, “For me, a few hours ago, this campaign came to an end. For all those whose cares have been our concern, the work goes on, the cause endures, the hope still lives, and the dream shall never die.”

  While I admit I’m a little biased, I feel in some ways that last line is more inspiring than many of the quotes of my uncle’s presidency. JFK’s words speak to great American youthful hope, but my dad’s words speak more to the reality of what is required to get back up and continue after life fails to cooperate, loved ones are taken, hopes are dashed, all appears lost.

  The older I get, the more “the work goes on, the cause endures” resonates in my day-to-day life.

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  ON OCTOBER 7, 1980—four weeks before the election—President Carter held a big signing ceremony for the Mental Health Systems Act in the White House. It was a fascinating day in the politics of brain health, because it was clear that during even the most frictional parts of the campaign the Carters and the Kennedys still had somehow figured out a way to keep working together on this historic, if flawed, legislation, which created a new federal/state partnership and new funding to treat and prevent mental illness, addictions, and developmental disability. My Aunt Eunice was introduced during the ceremony; my father was asked to give remarks directly after Mrs. Carter. And after the President signed the bill, he couldn’t resist the temptation to make one more point about the personal politics of mental healthcare.

  “You might be interested in knowing,” President Carter said with a grin, “that all during the spring campaign, when Senator Kennedy and I were communicating, um, through the media”—which got a laugh—“quite often I would come in and find Rosalynn and him communicating very intimately about the Mental Health Systems Act. So, it kind of bridged the gap . . . and I’m very grateful that all of us have been able to share in this delightful and exhilarating and gratifying experience.”

  The delightful experience lasted just a few more weeks. Not only did President Carter lose convincingly in the general election to Ronald Reagan, but the Republicans gained control of the Senate for the first time in over two decades and made substantial gains in the House.

  And one of the first things Reagan and the Republican leadership did was throw out almost every single aspect of the Mental Health Systems Act, passing on all mental healthcare to the states through
block grants at lower levels of funding than ever before: seventy-five cents for every dollar that would have been spent under the Carter bill. What had been meant as the federal government’s largest foray ever into improving care of mental illness and researching new treatments, prevention methods, and cures actually turned into its single largest and most resonant setback. The National Institute of Mental Health (NIMH), which had been founded in 1949 as one of the original National Institutes of Health, was defunded from any direct centralized involvement in mental health services and policy, and became just an adviser to the states. The massive deinstitutionalization that was feared during the sixties appeared to be instigated on purpose by the Reagan administration in the eighties.

  When it came to addiction treatment, the Reagans appropriated the title of President Nixon’s original “War on Drugs” from the 1970s but ignored the most important part of Nixon’s effort. Just as he had done for his War on Cancer, Nixon had poured money into improving research, prevention, education, and, most important, treatment for drug addiction—the only multipronged approach with any chance of success. The Reagans instead decided to slash funding for addiction treatment and addiction education, and attempted to solve the growing problem by spending massively to quash supply—in the US and, militarily, abroad. They addressed the complex issue of demand with Nancy Reagan’s reductive “Just Say No” campaign. While presumably well-meaning, the campaign also spent millions trying to reinforce the idea that addiction was a character flaw—something you could stop by “just saying no”—and not a disease.

  This became, inadvertently, one of the most destructive and stigmatizing efforts ever undertaken by the federal government in the area of addiction or mental health. It reinforced, to an entire generation, that not being addicted, not being mentally ill, was as easy as “just saying no” if you only had the moral strength to do it. We have been trying to undo its damage ever since.