He sat there with me for a long time, and I’ll never forget the way he kept patting me on my knee when people mentioned my work on behalf of the bill—and since there is so much pro forma praise members get if their bill actually reaches this point, that was a lot of knee patting. He was whispering to me in what my siblings and I called “Dad-speak.” cryptic half sentences whose meaning was always somehow crystal clear.
“This is big, this is big,” he kept saying. “You’ve really got something here.”
And then after another member spoke, he would say, “Keep it up, keep it up, we’ll work it out.”
Because my father was there, New Jersey Congressman Frank Pallone yielded me time so I could give my speech. I began a little nervously, trying to keep to my prepared remarks and conscious of my dad’s presence. And then I just put all that aside and spoke.
It was one of the best days of my life, even before they took the vote. And the final tally was 268 to 148, with 47 Republican members crossing the aisle to join 221 Democrats.
The next morning, I got this handwritten note from my cousin Tim Shriver:
Congratulations on the tremendous victory on the mental health parity bill. There is no question but that it would never have passed if not for you. I’m only sorry we didn’t have these provisions when we were kids!
I hope you are well and proud. I’ve always believed that one of the toughest things to express in our family is a sense of pride and achievement and satisfaction. You deserve them all.
—
AND HERE’S A PERFECT EXAMPLE of what it’s like to have a mood disorder: instead of feeling well and proud, I quickly went from the greatest day of my adult life to a feeling that everything was starting to fall apart with no warning, rhyme, or reason. Four days after that historic House vote, I was telling my therapist that I felt unanchored and depressed, and feared slipping more than I had at any time since my accident.
This change in mood was likely exacerbated by a piece of shocking news—my former chief of staff, Tony Marcella, who had been battling ALS, had a heart attack and, at the age of forty-three, was on a ventilator and not expected to live. But what I know about bipolar disorder is that I could have just as easily felt this way without that outside trigger. The truth is, we sometimes rely on these potential triggers as ways of explaining our mood disorders to those who don’t have the illnesses: it’s easier for them to understand the disease if breakthrough symptoms are triggered by something external, something that makes sense to them. And the illnesses would be much easier to live with if the mechanism by which debilitating anxieties and depressions rise and fall were that predictable.
I did my best to struggle through this depression, tried to go to as many meetings as I could and, when I felt the urge to drink, tried to sleep instead. It was a challenging few weeks, especially because I was starting to realize that I had stopped moving forward in my recovery, and I wasn’t as comfortable relying on my sponsor and telling him everything that was going on. At the time I blamed this on the fact that he was so much older than me, and I felt embarrassed about being as open with him as I was with my therapist on some issues; in retrospect it might also have been that I knew Jim was leaving Congress soon, and it’s not exactly breaking news that I had a big issue with father-figure abandonment.
However, anyone who has been in long-term recovery would say I was stuck between the fourth and fifth steps—with Jim, and with myself. In the fourth step we’re supposed to aggressively inventory every issue in our lives with other people—all the things we have done wrong that affected others and all the wrongs and injuries done to us. In the fifth step, we’re supposed to share that list with god through prayer, and then with our sponsor, who is trained to help us see our responsibility in situations where we might try to blame others. And for situations where we were blameless—such as sexual abuse or other violence done to us—we’re helped to understand that these were not our fault. The person responsible for these injuries was also ill, and being angry at them is a way to keep giving them power.
It’s a very challenging process, so you have to be all in. The process doesn’t make all the resentments just disappear—any more than doing the proper medical treatment makes all your mental illness symptoms disappear—but it helps you find a way to see all these insults more objectively. And by better understanding how your own actions played a part in them, you become more accountable.
In both the psychotherapy and twelve-step approaches, the hard-won goal is “insight” into your illness, which is what helps you through the challenges to come and the cyclical return of symptoms, because the diseases don’t just go away. My cognitive therapist was trying to accomplish some of the same goals with me. There are aspects of twelve-step and CBT that are very similar, although accomplished in different settings: if you can afford the cost in time and, in the case of therapy, in money, I can say from experience that each has its value. The biggest issue in either is your own commitment to the process and to yourself as a well person.
Instead of admitting to Jim that I wasn’t being rigorously honest with him, I started telling my therapist that maybe I needed a new sponsor. When something changes in your recovery process from addiction, or in your mood disorder symptoms, it is often easier to blame someone else’s actions rather than just admit that the illnesses can be moving targets and sometimes they just get worse. But I was nowhere close to having that kind of insight.
I was coming to better understand the dilemma of that recovery phrase I heard so much, “fake it ’til you make it.” It generally refers to your ability to put on a good face and function until you actually feel better. My problem, ultimately, is that I was way too good at faking it and somehow being able to function at a pretty high level—or have my staff make sure that collectively we functioned at a pretty high level.
And as I was completing my second year of sobriety, I was beginning to understand the difference between abstinence and real recovery.
—
FIVE DAYS AFTER I got my two-year chip in early May, I smashed my hand trying to break a board at a karate exhibition to raise money for cancer in Rhode Island. When I got back to DC, it was still really hurting, so I went over to Bethesda Naval Hospital to have it X-rayed. I asked my office manager Terri Alford to come in the car with me. Terri had been with me longer than any other member on my small staff—when she started I was in my mid-twenties and she was in her early forties—and besides doing her job flawlessly, she had always served as an emotional rock for me.
My hand was broken and after splinting it they, of course, gave me two Percocets, which I immediately took without thinking. And, since I was taking naltrexone at the time—which counteracts any of the euphoric feelings of opioids—I didn’t really feel anything but pain relief. But they also handed me a prescription for a bottle of sixty more, with three refills. I was already planning in my mind to stop the naltrexone so I could feel the effects of them.
While Terri went to get the car, I had the prescription filled. When she got back, the nurse told her where I was, and when she realized what the prescription was for, she told the nurse I wasn’t supposed to have it. “You’ve seen his records,” she said, “he cannot have narcotics.” But the nurse, and then the doctor, said they knew nothing about that, and it wasn’t on my charts at all.
So we got into the backseat of the car, and I was clutching the bag. She said, “I don’t want you to have those.” But I held on to them, and during the entire thirty-minute ride back to DC, all I could think about was how I was going to get her to let me keep them. She asked me for them again, and I just held on to them and ignored her.
It was like the height of the Cold War, nobody was sure who would blink first. Oh my god, the tension. I mean, I loved Terri. She was like a second mother to me. She was my protector. I would be jeopardizing that entire relationship if I defied her. In all the years I knew her, she had seen
me really ill and knew a lot about my health, but had never been in a situation to actually confront me, try to stop me.
And her timing was perfect—I was really struggling, even though I had literally just celebrated my second full year of sobriety a few days earlier.
So I knew that this represented an ultimate challenge of trust.
When the car got to the apartment, I got out and she followed me in. She said, “I’m not leaving until you give them to me.” We stood there for what seemed like a long time. And, finally, I just told her, “No, you take the bag.”
And she said, “Oh, Patrick, that means so much to me.” We hugged each other. She started crying, I started crying. I’m crying right now just thinking about it. Because I can still remember how much I craved those pills, how much one part of my brain wanted the drug, and the other part of my brain was telling me it wasn’t a good idea. And I’m still amazed at how much courage it took for Terri to confront me, and how many acts of emotional bravery, large and small, it really takes to care about someone with these illnesses.
—
AND THEN, A WEEK LATER, the phone rang and everything changed again.
My father was on a helicopter being airlifted from Hyannis Port to Mass General. He had suffered a grand mal seizure, and nobody knew why.
My brother, sister, and I immediately flew to Boston to be with him. So we were all together with him and Vicki when they got the news: the seizure was caused by advanced brain cancer, a malignant glioma of the left parietal lobe. While he actually felt pretty good, he needed dramatic treatment. And just as he had marshaled the country’s experts on healthcare challenges in the past—both for public policy and for our health—he looked for someone who might be able to save him or buy him some time.
He found that in a neurosurgeon at Duke, Dr. Allan Friedman, who was able to remove most of the tumor. He gave my father an extra year of life. And he gave all of us who loved Dad an extra year as well.
—
MEANWHILE THE STAFFS from the House and Senate were still “conferencing”—which is a euphemism for political hand-to-hand combat—over the two versions of the parity bill. The Senate staff, led by my father’s energetic longtime assistant on the Senate HELP Committee, Connie Garner, was still holding out for their bill to triumph. I’m sure they were upset that we had been able to bring our alternative bill this far—not only because of all the hard work Connie and her staff had put into it, but because the Senate always sees itself as more important than the House. Also, Connie had known me since I was a kid, when she sometimes babysat me in the Senate for my dad.
But our staff had something going for us that they didn’t: the 2008 elections were coming, and it appeared the Democrats might do even better in Congress than they had in 2006 and could retake the White House. We felt that, if anything, if we had to hold our parity bill until the next Congress we might do even better. And their bill, as written, was unlikely to stand in a new, Democratically controlled Senate.
Eventually, the negotiation turned on our softening our stance concerning the role of the DSM in what would be covered—which the Senate side would later use to suggest we’d blinked first. But the truth is, we never thought our bill was going to codify the medical necessity of insurance coverage for everything listed in the DSM. That’s not what the DSM is for. It’s just the most up-to-date book of diagnostic codes and descriptions, an encyclopedia of what to call all the things that might be wrong with your brain or mind, and a resource for how to differentiate between them when making a diagnosis.
We had been using the idea of covering every single diagnosis in the DSM—admittedly, an extreme concept—as a way of counterbalancing the extreme way many insurance companies interpreted the idea of “medical necessity” to their own economic advantage. We were trying to make sure that our bill mandated a standard driven more by evidence, clinical common sense, and long-term outcomes; basically we wanted whatever was clinically indicated to be covered for the brain, like it would be for any other organ.
We also wanted a bill that banned not only “quantitative treatment limits”—obvious caps on numbers of visits or treatment days—but the trickier, and sometimes more damaging, “non-quantitative treatment limits” or NQTLs. For insurers, NQTLs allowed care to be restricted through burdensome pre-authorization procedures and obstructive medical management that sometimes prevented the most important medical “step-downs” in treatment. These included extra days in the hospital, or reimbursement for intermediate care in day programs and other partial hospitalization, which were so important for a successful transition back into healthy daily life. Ultimately we conceded that covering the whole DSM would not fully address those problems, even symbolically. And we admitted it would take years of interpreting and triaging the new law before it really worked the way we wanted on NQTLs. So we let the provision go.
In exchange for this, the Senate gave us two things we felt were much more significant—the bill extended parity in mental health and addiction coverage to out-of-network services as well as in-network, and allowed the states to keep and even improve their own parity laws if they offered consumers more protections. The compromise allowed individual plans to file for a one-year exemption to parity if they could prove it cost them more than 2 percent more in the first year, or 1 percent more in any other year—but the requirements for filing were so onerous that nobody was ever really going to do it.
Jim and I felt really good about the deal. Certainly, there were still some thorny issues that would have to be decided during the rule-making that is often done after a bill becomes law. In most major bills like this, it is the rules that the government devises for the law that make the difference, followed by the legal challenges to the bill and the rules. But we felt comfortable that most of what we had held out for made its way into the bill.
In Washington, people often talk about not letting “the perfect be the enemy of the good.” We felt that mission had been accomplished.
The last arguments were over the name of the bill. There was a small debate about whether “mental health” or “addiction” should be first, and whether we should use just one word for both—“parity” or “equity”—or let each have its own word. The big fights, of course, were about whose name went on the bill and in what order. The Senate wanted Pete Domenici’s name first and of course we insisted Paul Wellstone be first. There were some people who just wanted one name on the bill—those most interested in honoring Pete wanted his, those most concerned about memorializing Paul wanted his. I remember getting into one argument about this issue that ended with me telling a very powerful legislator, “With all due respect, we’re talking about a bill that will save the lives of millions of people. Who the hell cares whose name is on it?”
When he first became ill, my father was concerned that his illness could stall the process of the bill becoming law. So he had asked one of his best friends in the Senate, Chris Dodd, to step in for him on parity. And now that the conferencing was done, Chris took a bill that everyone in Washington already viewed very personally and did everything he could to make sure that any obstacles were overcome.
—
MY FATHER CAME BACK to Washington for the first time in July, to be there to cast the deciding vote to stop the Republican filibuster of a Medicare bill to reverse cuts in payments to doctors that the Republicans had made. I was there to escort him into the chamber, along with the others he had chosen to be with him: Chris Dodd, his fellow Massachusetts Senator John Kerry, and Senator Barack Obama.
My father waited in Harry Reid’s office, which was right off the Senate floor, and then the five of us stood in the cloakroom outside the Senate chamber, about to make our surprise appearance. We pushed open the very heavy wooden swinging doors onto the Senate floor and strained a bit to hold them so Dad could make his entrance. And as he walked in we did everything we could to help him manage without appearing as if h
e needed much management, to show him at his best.
When we entered, the whole Senate stopped what it was doing—they were in the middle of a roll-call vote—and suddenly every major big-ego player was transfixed by him. It was like an emotional depth charge had been dropped in the Senate; everybody turned to watch it explode. The thing I was struck by is that, in a nanosecond, all these Senators just became people; nobody was a legislator anymore but suddenly it was just Chris and John and Carl and all of his colleagues and his enemies were just his buddies, Republican and Democrat. They were just all people whose hearts went out to him. It was magical.
He was walking through, saying “Thank you” and “Good to see you,” and when they’re doing a roll call, no matter where they are in the alphabet, if a member comes in who wasn’t present when his name was called, they call him. So they yelled out, “Mr. Kennedy,” and he walked to the table near the front, banged on it—which was also a way to steady himself—and yelled out, “Aye!”
His vote broke the deadlock on the filibuster, after which nine Republicans switched and voted with him.
—
MANY IN WASHINGTON assumed that might be the last time they would ever see my father again in public life, especially after news circulated a few days later that he had suffered a seizure not long after his Senate appearance. But seizures were not that uncommon so soon after serious brain surgery, and he was otherwise making good progress. He fully expected to be at the Democratic National Convention and at Obama’s inauguration in January. And then he hoped to get back to work—because he was convinced that Obama would be the President who finally passed the sweeping healthcare reform he had worked for his entire career.
By this point in midsummer, the conference committee on the parity bill had finished, and the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act was ready. All that was left was to attach it to a bill that could be used to offset some of its costs, which had been estimated at over $3.4 billion over ten years. Nobody thought it was a good idea to try passing it as a stand-alone, because now that the bill was more ambitious than the one all the business groups had promised to support, there was no guarantee they would fully support it. (In Washington, the default position is always to say no until something looks absolutely inevitable, and even after you get to yes, businesses will still be looking for ways to get closer to no in conference committee or in rule-making after passage.) There was discussion of attaching parity to a tax extender bill. But there was still no clear path to getting the bill to a vote in the House and Senate and onto the President’s desk to sign. In the meantime, the economy kept getting worse, the Iraq War casualties mounted, the presidential campaign kept getting more brutal, and on a personal and political level, it felt like time was running out.
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 27
