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

by Patrick J. Kennedy

Because of my father’s health, he had to be in a chair with arms on it and they put him very close to the President. So I’m in every major picture of the swearing in—it’s my Forrest Gump moment.

That was one of his go-to lines, “I can’t believe it,” and it was often associated with something that was bad, but he managed to say it in a way that made it sound like we got caught doing something mischievous. He had a great sense of the absurd and surprising in life, because he had seen so much of it. And then we looked out the window to see where we were. The ambulance was making great time to the hospital because it was going down the cleared path of the inaugural parade that was about to begin.

while everyone around me assumed that politics was the only thing keeping me going, I wondered if being in elected office was, in fact, a big part of what was killing me. Or was causing me to kill myself.

My mind was spinning that all this could be pulled off. Actually, my mind was just spinning, because all the pills I had taken were finally reaching their full impact.

“I can’t stay here, my career will be ruined if I do.” He looked at me and said, “Patrick, your career will be ruined if you don’t stay here.”

I felt like two family legacies were staring me in the face.

While a lot of people knew what my father had done, many did not appreciate just how much Aunt Eunice had accomplished and what was still being done in her name for neonatal care, children’s health, and developmental disabilities.

realized that he had passed at exactly the time that all these people in a big hut in the valley surrounded by vineyards were yelling, “Viva Kennedy!”

I can still vividly recall my seething anger and outrage at being told there just wasn’t going to be time for me to eulogize my father, that I had been deemed not worthy to pay tribute to him because I had an illness that could be embarassing or inconvenient.

woman came up who we hadn’t seen in years. She had been one my father’s secretaries in Washington decades earlier, before he had married Vicki. She approached us and handed us a sealed envelope, which had our three names written on it and the words “To be opened after my death.”

very kind note from Al Franken, who had just taken Paul Wellstone’s seat in the Senate. He said he wished he had been able to serve with my father (although he did fondly remember attending a Democratic Caucus retreat where my dad called the square dance one night).

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.

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.

(Actually, considering how many doctors were already in the mix for my care, this might have qualified as a ninth opinion.)

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

I gave an impromptu speech supporting the country’s current leader, President Ellen Sirleaf, who I greatly admired (and the next year would win a Nobel Prize),

something I had never really experienced before, being at the shore with a small, low-profile family who were reasonably careful with each other’s hearts. It felt like something I’d heard about in the endless nautical metaphors of my family but had never really experienced myself: Safe harbor.

There was, unfortunately, an entirely new front opening up in our war on inadequate treatment and medical discrimination: a new generation of veterans with a new generation of brain diseases.

Some vets were suffering from mental illness secondary to traumatic brain injury, or TBI, the new signature wound of war.

It went back to the Revolutionary War, when young Dr. Benjamin Rush wrote in the nation’s first text on war medicine, “Fatal experience has taught the people of America that a greater proportion of men have perished with sickness in our armies than have fallen by the sword,” and prescribed some of the earliest forms of preventive care, including one of the first mass vaccinations for smallpox.

our first twenty-first-century war was insisting we finally focus on brain disease. And what seemed like very specific “invisible wounds of war” actually had broad connotations for those who were not veterans. New interest in the diagnosis and treatment of battlefield traumatic brain injuries could also call attention to the stateside issue of concussions from car accidents, sports, and other causes.

Everything you do when manic is not necessarily bad. It’s just that the way you do it will, eventually, be bad for you, because mania never stops when you want it to. You can win a big race, but you can’t get your foot off the accelerator, full-throttle, until you and the car run out of gas, crash into a wall, fall to pieces, or all three.

Should I have a chance at a real life or not? Should I continue to live or not? It shouldn’t even have been a close call and yet it was a close call.

At that moment, I felt like the bottom dropped out of my life—and there had been very little holding it in place to begin with.

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.

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.

didn’t really understand all that “women are from Mars” stuff.

I guess not--"Women Are From Venus"!

I looked like I was suffering from all of the illnesses I was there to discuss.

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.

It was like some odd mental illness sitcom. But it felt like the safest place for me to be.

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.

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.

actually the best part of what was happening was that Amy and I talked about everything, fearlessly.

I no longer wanted to take multiple meds to address the same issue, which some called “cocktails” and others “polypharmacy.”

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.

They were people who really meant it when they said, “These are brain disorders.”

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.

On the last day, Vice President Biden gave an astonishingly moving keynote at the JFK Presidential Library, invoking his own experiences with neurosurgery and the searing saga of a close friend of his from college whose son was suffering greatly from a mental illness—and he didn’t know what to do. He described to Biden his feeling that his son was at the end of a string, out there in space,

the most exciting part of the meeting was the electric interactions during breaks and meals among people who were usually at separate meetings, strategizing about how to compete against each other. People were imagining how they could build things together, research things together, solve the unsolvable together.

the highlight of the One Mind event was family—because for the first time in my life, I was appearing in public as a man no longer alone. Amy and Harper were there for many of the events, and it was joyful to share all this with them.

But I also remembered being struck from a very young age with the difference between how people talked about my brother’s illness and my mother’s illness. She had the double challenge of not only confronting an illness, but confronting the prejudice and stigma of being someone who society felt didn’t deserve the same medical care and sympathy as her son with cancer. “My mother has been such an example to me,” I said. “And I want to tell you today, my mother is my profile in courage for all that she’s done to stand up to this stigma.”

my brother Teddy took the family sailing the day before, and spent most of the ride teasing me and asking Amy, every way he could think of, if she realized what she was getting herself into. In reality, Amy understood that better than Teddy did—and probably better than I did.

During the reception the sun set, and as a very full moon began rising over the harbor, Vicki treated us to an incredibly thoughtful, nostalgic gift. She had hired the company my dad had used for fireworks during my birthday when I was a kid, and they put on a breathtaking display.

I’ve got to be present for them and tell them the truth. I can’t do what was often done with us—talk about other things and ignore all the elephants in the room.

It was amazingly ambitious and forward-looking, and already making a difference. But I could see One Mind was going to focus on brain research for the future—and I felt that we needed to simultaneously be working to improve American mental health and addiction care today. That would mean pressing the case for the implementation of the parity act and making sure that discrimination in healthcare coverage was ended.

We spent all morning discussing the Community Mental Health Act and how it had changed the world, how it had completely failed to change the world, and what might be done to mark its anniversary and restart the conversation it had once provoked.

singer Taylor Swift, who was then dating my cousin (and probably already composing the song about their breakup).

I had decided to create another group, to honor the fiftieth anniversary of JFK’s Community Mental Health Act—and make sure that this time, the changes being made to help those with mental illness actually helped them.

we would create a true community of mental health. We would help Americans understand that the community of mental health is “all of us” and not “them.”

We would make a “checkup from the neck up” as regular as taking blood pressure. We would demand these diseases be treated as early as possible, not only when it’s almost too late—well before their final stages or, “B4Stage4” (using a smart phrase coined by our friends at Mental Health America).