A Common Struggle A Common Struggle

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Excerpt

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

Prologue

I’m never going to remember what actually happened that night in early May of 2006 when I slammed my green Mustang into the police barrier in front of the US Capitol. I retain a faint memory of flashing lights and people in uniforms knocking at my car window. That’s about it. No idea how I got there. No idea how I got home.

But I will never forget what happened the next day. I got up late, walked from my apartment building to Capitol Hill (because I had no idea where my car was), and then sat in my congressional office waiting in terror for the phone to ring.

I was waiting for someone to call and say: “You finally did it, you killed somebody. This is it.”

When the call didn’t come, I drank a couple Red Bulls to try to clear my head and took a meeting with the leaders of the Campaign for Mental Health Reform, which was lobbying on behalf of patient, provider, and clinician groups. They immediately noticed I didn’t appear mentally healthy myself: I was having trouble following the conversation and my hands were shaking. We were all saved from further embarrassment when I was called away to the House floor to vote on a lot of amendments for a port safety bill.

As the voting ended, the phone call finally came. I was summoned off the House floor into the cloakroom, where there were booths that allowed private conversations. It was my chief of staff.

“Patrick,” he said, “we have a problem.”

Apparently I had half woken up at around two thirty in the morning, several hours after mixing medications to get to sleep—Ambien and Phenergan, both recently prescribed, along with all the other asthma and mental health meds I was taking. Convinced I was late for a vote, I threw on a suit and tie, stumbled to my car, and drove, headlights off, several blocks down Third Street until I barely managed the left onto C Street. Then I barreled straight toward the security station for the House of Representatives. I swerved into oncoming traffic, nearly hitting a US Capitol Police vehicle, which somehow dodged me and then made a quick U-turn to chase me. I slowed down but didn’t stop until my car slammed into the security barrier.

Luckily, my chief of staff explained, only my car was damaged, because nobody was on the streets or the sidewalks where I was driving in the middle of the night.

After making sure I wasn’t hurt, the Capitol Police quietly took me home and moved my car into the congressional parking lot. But word spread and someone from the media had noticed the banged-up car in the lot.

“You’ve got to get back here, right now,” my chief of staff said.

I made a beeline back to my office and barricaded myself in. The next hours were a blur of phone calls of support and tough questions for which there were no easy answers. But the call I remember best came from my dad.

The first thing he said was, “I saw a picture of the car, and I don’t know why they’re making such a big deal of this. It looked to me like it was only a little fendah bendah.”

Very old-school. No “How are you doing?” Just “a little fendah bendah” (or, for those not raised in New England, “fender bender”).

In fact, that’s pretty much how he suggested I play it with the press and the public.

I wanted him to understand that I was sick, and that untreated mental illness and addiction was not about little fendah bendahs. It was about multicar pileups where people were injured and killed.

His insistence that this was a fendah bendah was a key to our issues as father and son. I worshipped my dad. He was the North Star by which I navigated my life. My dad loved and supported me as best he could, but he didn’t always respect me, and he didn’t understand the chronic medical condition I struggled with. He often said that all I needed was a “good swift kick in the ass.”

Did I say any of this to him? Of course not. I grew up among people who were geniuses at not talking about things. When I was a teenager going for therapy during my parents’ divorce, I wouldn’t tell my psychiatrist the truth because I wasn’t sure I could trust him to keep things private. Then one day I walked into a bookstore and browsed the “Kennedy section” and saw that many of the books included the “family secrets” I had refused to discuss. But I still wouldn’t talk about them.

So my father was stunned when, several hours later, I admitted everything that happened to the press and then very publicly left for an extended rehab at the Mayo Clinic. He was also pretty concerned when I tried to demand jail time in my plea agreement so it wouldn’t look like I was getting preferential treatment.

And my dad was really not thrilled when, after returning from rehab, I started being much more public about my private struggles with bipolar disorder and addiction. I promised myself I would have the most transparent recovery and treatment ever, all but donating my brain and its diseases to science while I was still living. I wanted to aggressively tie my personal story to my ongoing legislative fight for mental health parity—an effort to outlaw the rampant discrimination in medical insurance coverage for mental illness and addiction treatment. And winning the parity fight would be the first step to overcoming all discrimination against people with these diseases, their families, and those who treated them.

So I decided to go public exclusively to the New York Times. I did this with my Republican House colleague Jim Ramstad from Minnesota. Before my crash I had known him, although not well, as one of the only members of Congress who was openly in recovery. But after my arrest and hospitalization he was the first one to come visit me at the Mayo Clinic. I asked if he would be my sponsor in recovery—I had never had a real sponsor before—and he invited me into his network of friends in recovery on Capitol Hill.

While we thought this could have an impact, there was no way we could have predicted that the resulting story would run huge on the front page of the Times—or that it would run on September 19, 2006, two days after the death of my father’s sister Patricia Kennedy Lawford and the day before her funeral in New York City. There was also no way to predict that the reporter would quote me talking about the veil of secrecy in my family regarding depression and substance use, and then call my dad for comment about his own drinking habits at such a sensitive time.

So, of course, he was livid. When the family gathered after the funeral service at my Aunt Pat’s house in New York, he cornered me. He called the article a “disaster”—the word he always used to describe the most extreme situations. How dare I talk about the family this way? How dare I discuss “these things” in public?

I stood there on the verge of disintegration. I was early in my sobriety and still pretty vulnerable. And I watched my father circulate around the room, talking about the article.

Then my cousin Anthony Shriver came up to tell me what his sister, Maria, had just done. When my dad got to her to complain about the Times story, she apparently challenged him.

“I think what Patrick did was fantastic,” Maria said. “That’s what we need in our family, someone to talk about this.”

And, in that moment, I knew what I had to do.

THIS ISSUE OF not talking openly about “these things” is hardly just a Kennedy issue. It is a problem in most American families. Most of the challenges of mental illness and addiction feel incredibly unique and private when, in fact, they are remarkably common: nearly 25 percent of all Americans are personally affected by mental illness and addiction every day, one-third of all U.S. hospital stays involve these diseases, and they have a huge impact on everyone else.

But, in this situation, there was a very specific, very personal and political way for me to address this on Capitol Hill. It was a bill called the Mental Health Parity Act.

Ten years earlier, a mental health equity act had been signed into law. It was supposed to finally end prejudice against mental illness by making it illegal to treat diseases of the brain any differently than those of any other part of the body.

The act had failed. And now it was up for renewal. I was lead Democratic sponsor of the House version, my father was lead Democratic sponsor of the Senate version, and the two bills couldn’t have been more different.

The Senate bill was much the same one that had failed to make much impact ten years ago—in part because, as a matter of political expediency, it only covered what are called the most “serious” mental illnesses (such as schizophrenia) and ignored more common mental illnesses and substance use disorders.

My bill included all the brain diseases. House Resolution (HR) 1424 was meant to be a kind of medical civil rights act, which once and for all would end—or at least make illegal—any discrimination in coverage for these illnesses.

Basically, in my dad’s Senate bill, what was wrong with me—bipolar disorder, addiction—would not be fully covered, would not be medically equal. In my bill, they would be.

But, of course, it was all much more complicated than that.

ALMOST SIX YEARS after that front-page New York Times story about my recovery, I slipped very quietly into the Mayo Clinic in Minnesota.

Again.

I ended up in the Generose Building. That’s where they do psychiatric care, and drug and alcohol rehab. After checking in at the front desk, I was brought to see the same doctors who had treated me there before, along with my favorite counselor, John Holland. He runs the infamous “process groups,” which are like AA meetings on steroids—very intense—with your peers just smashing down your denial.

John and I caught up. Since the last time we had seen each other, a lot had happened. My father had died, I had left Congress, I had fallen in love, I had truly committed to sobriety, I had gotten married for the first time at age forty-four, and I had moved from New England to the Jersey Shore, where my wife, Amy, and her family lived. We had just had a son and were also raising her daughter from a previous marriage.

I also shared with him a recent devastating loss: my older sister, Kara. John knew Kara but hadn’t known about her sudden, unexpected death at fifty-one.

He said that he had recently lost his older sister. Drug overdose.

It was a relief to be able to tell him that I wasn’t there to be admitted. I was there to see a friend and colleague who had been texting me from rehab, asking for my help.

I was led through several doors, each one locked behind us, into the corridors of the Generose Building, where I had walked so many times before. I was finally brought to a patient room where the door was opened to reveal my longtime fellow Congressman Jesse Jackson Jr., sitting on the edge of a hospital bed.

I was stunned by how dejected he was—what a grip depression had on him. I had served with Jesse for sixteen years and saw him all the time because we were on a lot of the same subcommittees together. And he always had this kind of bravado about him—a proud guy with an incredible physical bearing and this power personality. Now he was really frightened by the depth of his own despair.

He said he had put on his nice shirt because I was coming. He was now measuring things differently in life—the simplest act, of putting on a clean dress shirt, had become a big gesture. It was hard.

Jesse had been secretly suffering from bipolar disorder. Although his family was insisting he was being treated for, you know, “exhaustion,” he realized it was time to come clean. But he wasn’t in any condition to do that yet. Nobody close to him really understood. So he wanted me to be the messenger.

I sat down next to him and we talked. He spoke achingly about his kids and what kind of father he was, how he felt he had let everybody down. He said he couldn’t imagine not being there to walk his daughter down the aisle. When I thought about what that meant—that he wasn’t sure he would live through this—it left me speechless.

I figured the best way to encourage him was to tell him about how it was when I was in his situation. He knew I had been treated at Generose in May 2006 after the car crash. But what he didn’t know, because nobody did, was that part of the reason I wrecked my life was because I failed to take my treatment seriously enough when I was at Mayo five months before the crash, during Congress’s Christmas break in 2005.

During that previous hospitalization, I tried to game the situation, refusing to be treated in Generose because of the stigma. I didn’t want anyone to think I was “crazy.” So I forced them to keep me at the medical facility at Mayo, where I could detox from opiates but still, technically, not be in rehab. I got treated physically but not mentally and spiritually. And after that treatment, I only stopped using opiates—not the other drugs I used, which didn’t have such a pejorative label. When you’re good at self-medicating, you can abuse just about anything.

I told Jesse I was glad he wasn’t making the same mistake and was committed to doing the treatment right. Everyone finding out wasn’t such a bad thing. In fact, everyone finding out was probably the only reason I was still here. But, at the time, I hadn’t known what was going to happen; I felt my life was over and I had let everyone down. I was a loser and a failure.

“I know, I know,” he said, nodding his head. “But I don’t know who I’m supposed to be anymore. My father is this great man and I’ve been trying to be a great man, but I don’t know if I can be.”

I told him he was a great man and this was going to make him an even greater man. And, frankly, in the political world we live in, his openness on mental health would advance the cause of civil rights as much as anything he had ever done. Because it’s all about overcoming stereotypes, prejudice, and marginalization.

He asked if I’d be willing to tell his father that. As quickly as I said yes, he was speed-dialing the number on his cell phone. I thought it was funny when he handed it to me and said, “Here’s the reverend.”

I explained what Jesse Jr. and I had been discussing, and he declared, as if he were in the middle of a sermon, “The cross is a lot easier to bear if you’re not bearing it alone.” I actually had to stop myself from saying “Amen.”

I told the reverend that I wasn’t sure which was a heavier cross to bear, being Ted Kennedy’s son or being his son—at which point Jesse, sitting next to me, started to smile for the first time, and actually laughed.

After we wrapped up the call, Jesse was talking about the sense of persecution he felt, and his confusion about whether to resign from Congress—because of the ethics investigation he was in the middle of and because of his illness. It turned out he was in the same healthcare dilemma as so many other Americans.

“I can’t resign,” he said. “I need to finish my treatment, and I won’t get any care if I resign. All these years I never needed healthcare. Now when I need it, how am I going to get it?” This was also making him wonder how his constituents got mental healthcare. I told him that was a good sign—if he was still thinking about other people, he would be all right.

We took some pictures, we hugged, and then I left.

As I walked down the hall to the exit, I thought about all of the “aha” moments there are in the world of these diseases. So many people hiding and pretending, so many people who just want to be able to say out loud what’s wrong with them and get proper treatment, so many people all over the country who are facing the same problem but rarely find each other—and if they do, it’s often too late.

We need to better engage those who think these illnesses don’t affect them, to help them move from prejudice—which they often don’t realize they have—to at least an enlightened curiosity.

Several hours later, I fulfilled my role as Jesse’s messenger, speaking to NBC News about my meeting with him. “No one wants to admit that they suffer from a mental illness, because of the stigma,” I said. “Both of us suffer from major depression. He knows that I’ve been through a lot of the same things that he’s going through now.”

I made it clear that while Jesse was ill and I was, at the moment, doing pretty well, I knew there would likely come a day when our roles were reversed, and he would have to be there for me. These are chronic illnesses. So far, we have no cures. Only medical treatments, meetings, research, spirituality, hope, and belief in a common struggle.

I LEFT CONGRESS at the end of 2010 to change and, hopefully, to save my life. Since then, I have been crisscrossing the country on a sort of Lewis and Clark expedition into the new frontiers of medicine, politics, economics, and human emotion in mental healthcare and brain research.

I speak to groups who want to hear about my personal challenges and my political challenges, and about the future of healthcare—especially healthcare from the neck up. I meet with top scientists in their labs and see the cutting edge of research. I hold public hearings for patients and families denied their mental health benefits. And I’m constantly pulled aside for private and incredibly revealing conversations with an amazingly broad cross-section of people.

They often just need someone to talk to about their own challenging experiences with brain diseases, someone who “gets it.” But they also appreciate having that conversation with someone who is deeply involved in the worlds of mental health policy, medicine, science, law, and economics—so when they ask what they can do to help, or what the future looks like, they can get a useful answer. Or at least an informed opinion on what isn’t yet known.

For the past twenty years, including my time in the House, I have been immersed in the big science and big business of mental health, as well as the small steps of progress in many people’s care. I interact with everyone from heads of state and international business leaders who privately suffer with mental illness to the local family we know, whose mentally ill son was shot to death by an untrained police officer.

I also get deeply involved in the politics of the brain, which are fascinating and inspiring but also sometimes bruising. The fight to save “beautiful minds” can get pretty ugly.

I’ve had a chance to see these frictions from a unique perspective. While sitting on a House committee being asked to fund all these competing approaches and perspectives, I was also suffering from, and not always taking very good care of, the mental illnesses of bipolar and anxiety disorders, and the substance use disorders of binge drinking and opiate abuse. I have watched debates by top scientists, policy analysts, treatment professionals, drug manufacturers, and insurers and then, just weeks later, sat in group therapy commiserating with fellow inpatients about the same problems from a wholly different vantage point.

It takes a while to understand and navigate these worlds as a patient or family member. And a shocking number of people walk away from treatment that works after reading something inflammatory about the politics and economics of care—or they game the failures of integration in the system, hide between the cracks, and make themselves sicker. I have, in my “career” as a patient, seen and done both. But, working in the politics of medicine, I also understand that everyone in the world of brain diseases has attitudes formed in an environment of discrimination and prejudice.

Most of the varied approaches to care began getting traction before there were actually any medicines that worked. And the business of those medicines now often competes with the business of behavioral therapies and supports, as well as the housing and employment assistance usually required to keep people in any kind of treatment and healthy lifestyle. Each sector treating mental illness or addiction is challenged, underfunded, and discriminated against in its own way. But it’s still hard to watch people who care deeply about brain diseases and have devoted their lives to their treatment competing on medical, legal, or financial issues—as if certain diagnoses or therapeutic approaches are supposed to win.

It is sometimes hard to remind all these people—who, by the way, work incredibly hard in their own worlds—that they are all treating the same organ, the brain. And, just like for every other organ, we need to support, research, and reimburse a menu of evidence-based approaches. We need to build bridges between all the disparate researchers and clinicians in neurology, psychiatry, psychology, developmental disabilities, and cognitive impairments—as well as the people they treat and their families. We need to help inspire an increasingly “one-minded” approach to not only mental illness and addiction but brain diseases from autism to Alzheimer’s, bipolar disorder to traumatic brain injury, seizures to PTSD.

We need to constantly remind people that this is a common struggle.

PEOPLE HAVE BEEN LAMENTING the stigma of mental illness and addiction for centuries. So why do I think anything is going to change now?

Simple. Until very recently it was completely legal to discriminate in treatment and insurance coverage against those with mental illness and addictions. We have referred to this phenomenon as “stigma,” as if there were some justification and shared responsibility for the questioning and blaming and undermining of those with certain types of illnesses, describing their traumas and challenges as “little fendah bendahs.”

But it’s time to stop asking to be destigmatized and instead start demanding an end to discrimination.

Because what many still don’t realize is that this discrimination is now a federal crime.

Mental health parity is finally the law of the land. Based on the guarantees of the Mental Health Parity and Addiction Equity Act—which my father and I helped pass together in 2008 but has only recently started being implemented—and the Obama Patient Protection and Affordable Care Act, it is finally illegal to cover mental illness, addiction, and intellectual disabilities any differently than other medical conditions, and preexisting conditions can never again be used to restrict access to coverage. While these laws were signed several years ago, because of court challenges and the seemingly endless process of government rule-making, they couldn’t begin to be fully enforced until July 1, 2014. And they are still barely being enforced today.

The Mental Health Parity Act is the equivalent of a medical civil rights act, a brain disease equal rights amendment—the legal end of the discrimination that is at the heart of the stigma of brain diseases. As a politician, as a patient, and as a member of a family haunted by mental illness and addiction, I have waited my entire life for this moment.

But I also know that since we weren’t sure this moment would ever come, we are largely unprepared for it. We’re still struggling to figure out how the promise of mental health parity will be put into practice.

Fifty years ago, when “civil rights” became the law of the land, nobody was really sure how to outlaw racial discrimination. It was up to people like my Uncle Bobby, as Attorney General and later as a Senator, along with many others to figure out how to operationalize and enforce such a societal change. And we will have to figure out how to do the same for this “parity” by outlawing medical discrimination, stigma, and inadequate care.

It is a daunting, exciting challenge. We have all lived our entire lives, as did our parents, our doctors, and our leaders, making decisions about mental illness and addiction under the assumption there would always be prejudice, there would always be institutionalized, legal stigma and discrimination. We have to start adjusting to the unfolding realities of a post-parity world, and help change that world.

We must do it now, together, and in the open.

OUR SECRETS ARE our most formidable adversaries. The older I get, the more I see secrecy as “the enemy within,” which blocks recovery not only for individuals but for society itself.

That phrase has a special meaning to me. Not long before he died, my father gave me his copy of his brother Bobby’s 1960 book about union corruption, The Enemy Within.

It is autographed: “To Teddy, who has his own enemy within.”

Giving me that book was the closest my father ever came to acknowledging anything to me about his own struggles. Which is probably why I have been so invested in exposing the secrecy around mental illness.

Since I first “came out” about my treatment for bipolar disorder and addiction, I have found myself talking incredibly frankly to an enormous number of people who feel it isn’t safe to share the secrets of their illnesses. I’ve had these intimate and moving conversations with an astonishing number of people, from the powerful to those who feel utterly powerless, in all kinds of settings.

Sometimes the conversations become a huge step in their ability to acknowledge the common struggle. Other times they reinforce the hypocrisy and pain of our stigmatizing society.

You would not believe how many times a Congressman or other public official has pulled me aside for advice and counsel because they, or a loved one, suffer from a mood disorder or an addiction, and they need a recommendation for treatment.

And I still have a hard time believing how many of these same public officials have failed to support funding for mental illness or addiction research, and even voted against parity for their treatment.

Recently, I have found myself being more open in my advocacy, perhaps because the national tragedies involving mental illness have made the cost of remaining quiet more clear. I have also been reaching out to the doctors who treated me over the years, to discuss my own care and the state of mental healthcare. These conversations have been fascinating, especially now that I have the perspective of today’s science and my own personal perspective from the longest period of continuous sobriety I’ve experienced since the age of thirteen.

That sobriety has not been very long, and I don’t kid myself that it will ever get any easier to maintain. I began counting it several months after my last days in Congress, on February 22, 2011—what would have been my father’s seventy-ninth birthday.

And the main reason I am able to stay sober is because of a stroke of luck and coincidence that I am more than happy to attribute to divine intervention: the spring before I left Congress, I met and fell in love with my wife, Amy, a middle-school teacher in coastal South Jersey, where I now live. Amy has saved my life in so many ways but, more important, has provided the love and support I needed to commit to the daily work—and joy—of saving my own life.

Amy and our young children are what keep me on my spiritual journey of recovery and hope. In fact, they are probably the only reason I am still alive. They remind me every day of our most underappreciated treatments for these illnesses: love and faith.

They also remind me of the biggest reason to fight for mental health parity. My own children are at considerable genetic risk, just as I was, of developing mental illness and addiction. Which means that they can, and must, be part of the first generation in American history to have their brain diseases treated like every other disease.

Our children must be part of the first generation for which routine doctor visits include a “checkup from the neck up.”

When you have heart disease or cancer, nobody questions your diagnosis—even if it changes or your treatment changes direction. And nobody uses setbacks in treatment as an excuse to question whether or not cancer or heart disease really exist, or if they are all “in your head.”

My goal is to change the way we talk about mental illness and addiction in this country, move the conversation from a painful existential debate to a more useful and forward-looking discussion about proper diagnosis and care. The sad truth is that while we still have so much to learn about the brain, most patients don’t even benefit from what we already know. More than half the people who have been diagnosed with any mental illness do not get treatment at all. It is time for this to change.

My hope is that by writing about and exposing the worlds I get to visit—as a politician, advocate, patient, and family member—I might be able to make your journey less isolated. These struggles are much more common than most people realize, but too many of us still face them alone, if we face them at all. That isn’t necessary, it isn’t healthy, and it isn’t how any of us want to live our lives.

I believe more than ever that we have the power to help change the world for people who have mental illnesses and addictions, and for all of those whose lives are touched by these brain diseases—which is to say, all of us.

In fact, I have bet my life on it.

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