To make sure we had enough economic muscle to accomplish all that, we would bring together the leaders of the nation’s top companies to create the Mental Health Leadership Roundtable, modeled on the successful CEO Roundtable for Cancer, to focus on employer-sponsored healthcare. Since a large percentage of healthcare is paid for by big self-insured companies, we felt a forum including them would not only help best practices in mental health coverage to proliferate, but also spread the news of how their employee assistance programs will help reduce absenteeism due to brain diseases and promote productivity.
And to address the public system we would seize on the new “social impact bonds” that were created to help finance prevention efforts where the return on investment could be paid for by the cost savings from our old broken system.
After a three-hour session—parts of which were utterly exhilarating, other parts dispiriting, because there is so much to be done—we broke for dinner. We ate in the backyard, near the docks, with everyone at wooden tables under large fabric umbrellas. It was great to watch the lively conversations between people I had known my entire professional life—some of whom were fighting the stigma of mental illness before I even realized I had one—and people I had just recently met.
After dessert, the sun began to set over the bay, and everyone gravitated out to the wooden dock—not only all these thought leaders, but Amy and I and our kids. Harper and Owen were showing some of the world’s experts on addiction facility management, insurance reimbursement, and healthcare program funding how the seagulls dropped clamshells from the sky onto the dock, and pieces got caught between the planks.
The kids started bending down and pulling the shell shards out of the dock and tossing them into the bay. And soon a handful of our guests were down on their hands and knees with them, helping with the effort.
I was standing on the end of the dock, talking to a healthcare accountant from PricewaterhouseCoopers. Amy was holding Nora. Harper and Owen and their new friends were having fun.
And I thought to myself: For me, this is how the work will go on. Because I now have a chance to be healthy and happy enough to see it through.
I do not kid myself. The diseases we have are chronic, not curable, and I am reminded of that all too often.
As we were finishing this book, we learned that one of our friends from that late summer day on the dock had completed suicide. He wasn’t much older than me, he had two kids, and he had spent most of his adult life trying to help people get better healthcare. He knew so much and had helped so many, but in the end he was not able to save his own life.
His loss is one more reminder that I have to do everything in my power to keep up the common struggle—for Amy and our family, and everyone else who depends on me—to save every life I can, including my own.
Scuba diving with my father.
Fishing at the end of Squaw Island.
On the water with my dad, September 1979, in his boat, the Curragh.
Gramma’s birthday.
Kennedys and Shrivers. Back row, from left: Bobby Shriver, Aunt Eunice Shriver, Mom, Maria Shriver, Dad. Front row: my brother Ted, Gramma, my sister Kara, me, Uncle Sarge Shriver.
In my bedroom at the McLean, Virginia, house, showing Henry Kissinger my aquarium.
My father and me during the big family rafting trip he organized down the Colorado River into the Grand Canyon.
My mom, Ted, Kara, and me.
My father, me, and Kara (far right) at a campaign appearance during his 1982 Senate race.
My campaign diary from my father’s 1980 presidential campaign.
What my father’s car looked like after the car crash in Hyannis Port in 1984, in which I received a head injury that was minimized at the time, but was more serious than anyone let on.
A birthday celebration at the Squaw Island house.
My favorite picture of Kara and me, taken at the Mount Pleasant Public Library in my district when I was a Rhode Island state representative.
My Uncle Jack (back to the camera) handing my Aunt Eunice one of the pens used to sign the landmark Mental Retardation Facilities and Community Mental Health Centers Act of 1963, or what we now call the Community Mental Health Act. The signing ceremony, on October 31, 1963, was his last. (Courtesy JFK Library)
My Aunt Rosemary at age twenty-one, in April 1940. It was her life and the challenge of her medical conditions—a developmental disability from birth, the onset of mental illness in her early twenties, and then a tragic mistake in her treatment in the 1940s—that inspired my family’s commitment to changing the world for people with developmental disabilities and brain diseases. When I was seventeen, my Aunt Eunice invited me and others of my generation to get more involved. (Courtesy JFK Library Foundation)
Campaigning for the Rhode Island legislature only weeks after spinal surgery, 1988.
With my Providence political mentor and friend, Frank DiPaolo, in front of his beloved diner, Castle Spa, where I ate almost every day. (Courtesy Providence Journal)
Election night, 1988, in Providence with my parents. (Courtesy Providence Journal)
In Palm Beach during a break from Providence College and the Rhode Island State House.
My father and me onstage at the Democratic National Convention in Chicago, 1996.
In my congressional office with my executive assistant and protector, Terri Alford.
With President Clinton and my first congressional chief of staff, Tony Marcella.
Fund-raising call with my first House political mentor, then Minority Leader Dick Gephardt. (Photograph by Bill O’Leary/The Washington Post/Getty Images)
On Air Force One with President Clinton, my stepmother Vicki Kennedy, and my father, during the 2000 campaign. (Courtesy The White House)
With Hillary Clinton outside Gramma’s house during a Rhode Island political action committee event.
With Tipper Gore at the Woonsocket, Rhode Island, senior citizens event in February 2000, where I first publicly admitted I suffered from a mental illness and was being treated with medication and therapy. (Courtesy Providence Journal)
With my mom after announcing my bid for reelection to Congress, in front of the Rhode Island State House. (Courtesy Providence Journal)
Sailing with the Clintons. From left: my sister-in-law Dr. Kiki Gershman Kennedy, the President, my sister Kara, Hillary Clinton, and me, with my brother Teddy behind us.
With Representative Nancy Pelosi, before giving a healthcare address in Rhode Island; as Speaker of the House, she ushered through the parity bill. (AP Photo/Steven Senne)
At the January 2002 State of the Union, when President George W. Bush acknowledged my father’s contribution to the passage of the No Child Left Behind legislation; he is surrounded by, among others, his friends Joe Biden, at left, and Paul Wellstone, in front.
At Eagle Base, Bosnia and Herzegovina, with General Hugh Shelton, Chairman of the Joint Chiefs of Staff (center)—who taught me that in the military, mental healthcare is not a safety net but a “force multiplier”—and Senator Max Cleland, who was with me and my family during many battles, both legislative and personal.
With Teddy, in my congressional office. (Photograph by Callie Shell)
The New York Times piece that came out while I was at the Mayo Clinic for treatment after the car crash, one of several that announced the new direction of my political career to focus on mental illness and addiction and use my own story more openly.
Representative Jim Ramstad and me leaving the courthouse in 2006, after I pleaded guilty to driving under the influence and Jim publicly acknowledged that he would be my twelve-step sponsor; that’s my second Chief of Staff, Sean Richardson, at left. (Jamie Rose/The New York Times/Redux)
Talking to reporters outside the courtroom, June 2006. (Copyright © Kevin Lamarque/Reuters/Corbis)
Jim Ramstad and me at the first of our fourtee
n parity “field hearings” to generate state and local interest for our House Mental Health Parity and Addiction Equity Act, HR 1424; this hearing was in Providence, January 2007. (Courtesy Providence Journal)
The New York Times photo of my father and me “discussing” our competing mental health parity bills while sitting in his Senate hideaway, March 2007. (Doug Mills/The New York Times/Redux)
Speaking at one of our many Capitol Hill mental health parity rallies. (Courtesy Kennedy Forum)
Discussing parity strategy with David Wellstone, the late Senator’s son, and Rosalynn Carter, in July 2007, before the House Education and Labor Committee hearing on the bill. (Courtesy Capitol Decisions)
With mental health advocate Bill Emmet during the 2008 parity effort. Bill was the first person to ever speak to me about parity, when he was a local NAMI representative in Rhode Island in the late 1980s, and we worked together for many years. When I started the Kennedy Forum in 2013, he was the logical choice to be its first employee, and is now its executive director. (Courtesy William Emmet)
Senator Barack Obama and me in Providence on March 1, 2008, in the early days of his Presidential campaign; he sent me a signed copy of this unpublished photo as a gift. (Photograph by Callie Shell)
At the November 2008 White House signing ceremony for the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act, with, from left, Jim Ramstad, Senator Pete Domenici, President Bush, and foreground, my father. (Courtesy The White House)
Leaving my father’s funeral, August 2009. (Courtesy Providence Journal)
One of the first pictures taken of Amy and me when we started dating in 2010.
At the November 2010 Society of Neuroscience convention in San Diego, delivering the original “moonshot to innerspace” speech, which led to the creation of One Mind and much of my other post-Congress brain health advocacy. (Courtesy Society for Neuroscience)
Amy and me in her parents’ kitchen, after I had left rehab for a few days to be with her for Christmas—and then just decided to stay and get healthy with her and her family.
Amy, Harper, and me in her parents’ living room; we lived at their house for the first year and a half we were together, and I conducted many of my “business” meetings on my cell phone from that wingback chair.
Our wedding, with Harper as flower girl, July 15, 2011.
Kennedy cousins celebrate Amy and me getting married with a full moon over Hyannis Bay. From left: Kerry Kennedy, Sheila Kennedy, Chris Kennedy, Max Kennedy, Vicki Kennedy, Anthony Shriver, Linda Shriver, Tim Shriver, Malissa Shriver, Bobby Shriver, me, Amy, Bobby Kennedy Jr., Cheryl Hines, Rory Kennedy Bailey, and Mark Bailey.
With Garen and Shari Staglin, the founders of the International Mental Health Research Organization (IMHRO), and my co-founders in One Mind. (Courtesy the Staglin family)
With Dr. Husseini Manji, the global head of neuroscience at the Janssen Pharmaceuticals division of Johnson & Johnson.
At the One Mind Los Angeles fund-raiser with, from left, General Pete Chiarelli, executive director of One Mind; me and Owen; Glenn Close, co-founder with her sister of BringChange2Mind; our emcee for the evening, Tom Hanks; and Garen Staglin. (Courtesy One Mind)
Meeting with Jesse Jackson Jr. at the Mayo Clinic in the summer of 2012, to discuss how I could help with his recovery . . . starting with talking to his dad about bipolar disorder.
Bringing Owen home from the hospital, April 2012. (AP Photo/The Press of Atlantic City, Danny Drake)
Harper and Owen with my mom in her apartment in Boston.
With Vice President Joe Biden and Dr. Aaron “Tim” Beck, the creator of cognitive therapy, backstage at the JFK Library during the inaugural Kennedy Forum dinner, October 2013. (Courtesy Kennedy Forum)
With the whole Savell family in Amy parents’ living room for her birthday, 2014. Her parents, Leni and Jerry, are on the far right, in red. I have my arm around my brother-in-law Paul, and to Amy’s left is her brother Chris.
Amy and Owen.
With Dr. David Satcher at the first annual State of the Union in Mental Health and Addiction at the National Press Club, February 2015. (Courtesy Kennedy Forum)
With my cousins Bobby and Maria Shriver at the Semel Institute Great Minds Gala, April 2015. (Courtesy Thomas Neerken/The Friends of the Semel Institute at UCLA)
With my co-author, Stephen Fried (center), and NIMH director Dr. Thomas Insel at the Kennedy Forum gala dinner at the JFK Library. (Courtesy Kennedy Forum)
Sailing with Owen and Nora.
What goes on in our hotel room between speaking engagements: Amy’s picture of me and the kids.
Appendix I
WHAT YOU CAN DO
Now that you have read A Common Struggle, you might be wondering what you can do to improve care and coverage for mental illness and addiction, and end discrimination. I’ve been hearing this question for decades as a politician, and even longer as someone struggling with the illnesses and the stigma. We sometimes get too caught up in what we are hoping will happen in the future, with new discoveries, and forget just how many options and opportunities are available to us right now. So let’s focus first on what you and I can do immediately, together.
First, don’t be alone with your illness and your struggle. And don’t be afraid to demand the best diagnosis, the best care, the best coverage, and the best way of staying current with the medicine and treatment. The illnesses are challenging enough, even when you do have all the information, caregivers you trust, and coverage that is equal to that for all other illnesses. You have to take the best possible care of yourself—or the person you are caring for—in order to be strong enough to advocate. And if you and your caregiver feel any of the care you need is not being covered by your insurance company, explore your rights under the Mental Health Parity and Addiction Equity Act (MHPAEA) with our in-depth Kennedy Forum Parity Resource Guide (www.kennedyforum.org/parity-resource-guide), which also includes information on how to formally register a complaint. If you or those close to you don’t feel they understand the illnesses well enough, or how to best help someone struggling with them, consider getting the ”Mental Health First Aid” training (www.mentalhealthfirstaid.org) offered by the National Council for Behavioral Health and the states of Maryland and Missouri, and reading the new consumer version of the DSM-5, Understanding Mental Disorders from the American Psychiatric Association If you want your loved ones to better understand your treatment and your needs—since these illnesses can cause periodic cognitive impairment—make an “advance directive” for your care choices if your symptoms worsen: the National Resource Center on Psychiatric Advance Directives (www.nrc-pad.org) has all the information you need.
Second, don’t be afraid to become educated about the political issues surrounding your illness. These issues go far beyond just more funding for research for your individual disease—we also need to focus more strongly on larger goals that will help treat and cure all brain diseases. This is a big part of the reason why I wrote A Common Struggle—and created two nonprofits that are broadly inclusive of all mental illnesses and addictions (in the case of the Kennedy Forum, www .thekennedyforum.org) and all brain diseases (in the case of One Mind, www.onemind.org). I’m trying to provide and encourage leadership to bring together groups that sometimes compete for research dollars and public awareness in their own national and state lobbying. I’m also trying to help level some of the advocacy playing fields because, for a variety of reasons, the advocacy for some illnesses is heard above others—even if many more Americans suffer from illnesses with fewer or quieter advocates. For example, because of the historic anonymity in twelve-step recovery, there has not been as much public leadership for alcoholism and addiction advocacy as there has been for illnesses like cancer and diabetes, and even other brain diseases. That is why we are working to create stronger advocacy on behalf of all mental health—including all men
tal illnesses and addictions, which science will likely one day prove are more similar than unique.
Lastly, keep a Brain Health Scorecard and grade public officials on their commitment to brain health issues. When I was in Congress, it was very clear which advocacy and lobbying efforts were “scoring” us, so that they could determine at the end of each session exactly what percentage of our votes were in line with their cause and mission. The labor movement has always scored voting; the environmental movement scores voting. In mental illness and addiction, the individual disease advocacy groups score voting, as do the large caregiver guilds, facility owners, medical insurers, pharmaceutical and device manufacturers, and others.
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