Resilience (13 page)

It does not do me much good to talk about it, to spend some of my living time planning to die, giving
more of me to the disease than it will ultimately demand. But I cannot pretend I didn't wish I knew. I cannot pretend that I didn't wish the disease was in my control. All that is in my control is how I live now. I could fill the days with fears—there are plenty of those—or I could fill them with the best joys I can cobble together. My husband wrote, in his book
Four Trials
—in part, I admit, on my recommendation, “I have learned two great lessons—that there will always be heartache and struggle, and that people of strong will can make a difference. One is a sad lesson, the other is inspiring. I choose to be inspired.” There is enough unhappiness and pain to fill my days, but I choose to be happy.

Until I know—and the only things I can really know are that researchers have found a cure or that my death is imminent—I fill my days with things that matter to me and I find comfort where I can with those who have loved me perfectly or imperfectly. In 2004 when my cancer was first reported, I turned, as I often have, to the Internet for support and comfort. There, on Democratic Underground, I read a comment someone had posted under a thread offering me support. The comment included lines from a Leonard Cohen song, “Anthem”:

It has become my anthem. I did something unlike me: I had the words placed on the wall high in my kitchen, a reminder that the pain, the loneliness, the fear are all part of the living. There is no such thing as perfection, and we have a choice about how we integrate the imperfect into our lives.

The idea that we—even, maybe particularly, those of us in the public eye—lead some sort of charmed and perfect lives is, sadly, so far from the truth. Everything in the fish-eye lens we have of our own lives is distorted, and as that lens moves across our stories, different threats loom large, outsized by the public view, dwarfing all the pieces so perfectly placed for that perfect life. The trick, I suppose, in a public or a private life is to recognize that the outsized monsters are distortions and that in real life the ground and the sky are in the right place and the foundations that we built are, likely, still standing. I was testing that, surely, but I was determined to adapt to the distortions.

Perhaps it was 1998 when Roger Elliot, our minister at Edenton Street United Methodist Church in Raleigh, gave a sermon in which he talked about a congregant who had called him. I am overwhelmed, the man had said, and I need to see you. Roger, of course, saw him and listened as the man complained of all that was wrong with his life, financially, spiritually, personally. He felt as we all often feel: helpless against high odds, alone and without options. The man volunteered that he felt like Phil Connors, the weatherman played by the brilliant comedic actor Bill Murray, who wakes up every morning and it is, again, Groundhog Day. I am like Phil Connors, he said; every day is the same miserable day over and over with no hope of that ever changing. I think he must have left before the end of the film. Phil Connors was wretched, certainly, and every day—especially the exact same every day—was undeniably lousy. Phil didn't even stop to think about what he wanted; he, like the congregant, just complained. He almost basked in and definitely reflected the misery of a life symbolized by the banality of grown men waiting in a cold rain for a groundhog to appear. Phil was nowhere and going nowhere, just as the congregant felt was true of his own life,
and they each had fallen into a reliable misery. Roger went on with his sermon, but admittedly I stopped listening as closely to Roger and sat there thinking about the story.

I had had just the opposite response to
Groundhog Day.
Phil Connors awakes to the same unpromising day morning after morning—a strange hotel room, an annoying alarm clock, a meaningless job, a beautiful coworker who found him unbearable, all set in a simple, unsophisticated piece of America. In frustration, he tries to stop his miserable fate by a series of completely successful suicide attempts, only to wake the next morning—alive—to the same annoying alarm clock in the same pedestrian hotel room. Recognizing the trap, he misbehaves knowing it will have no consequence—he can rob an armored truck and the “next” morning nothing will be amiss. He bumps his way through the day with the same resentment and frustration the congregant had expressed. He punches, and the world punches back. And each day was just as miserable as the cold rainy morning had suggested. It might have taken Phil Connors some time to recognize it, but finally he does start thinking about the fact that he was stuck in this impossible world and that his punching
the same way is having the same unwanted effect every time. If he was stuck here, he finally concludes, he might as well make it a little more bearable. So he helps an elderly woman and he makes friends with the town clown and he learns French and how to play the piano. And he wins the girl with whom he had so grossly and awkwardly flirted in the first of his Groundhog Days. He got to do the same day over and over, each day a little better than the last.

The people around him changed, his world changed, but only when he did the hard work of changing or accepting this new reality. But when he did change, their change, their acceptance or warmth or love, made his next improvement not just easier but more likely. But it had to start with him.

I met a lovely, earnest man named Mark Gorman recently. Mark is a metastatic melanoma survivor, and he told me that he carries with him in his wallet a fortune he unwrapped from a fortune cookie some time before:
You cannot change the wind, but you can adjust the sails.
That's what Phil Connor was doing, adjusting his sails, and when he did it, his boat moved in a new direction.

Groundhog Day
is not a story of defeat. How wonderful, really, to live with the opportunity to get right today the mistakes I made yesterday. I can learn from my mistakes (and I will always make mistakes) and try to do better on the next try. I do not have to accept the reality handed to me; I can play a part in changing that reality. Well, within limits. So I keep trying, as Phil Connors did in
Groundhog Day
, to outmaneuver nature, to choose a different reality, or a different angle on the reality I cannot avoid.

My sister Nancy did this, in a smaller way, when she was five years old.

When I was seven years old, my brother was six and my sister was five. We lived in a white apartment building across from the station chapel on the Naval Air Station Jacksonville. My parents were Sunday school teachers, and each Sunday the five of us would walk across the street together. Before we left the apartment, my parents would give us each our allowance for the week. In those days, all the stores were closed on Sunday, so I suppose they were enforcing at least a one-day savings habit. Our allowance and the offering we got for the plate at Sunday school were each a dime. Before concluding
that my parents were stingy, you should know that it was 1956, and in those days a dime would buy you a comic book or two candy bars.
Family Circle
magazine had a proud emblem on each cover:
Always 15¢.
It was a different time. (It was a time I think about fondly, when little girls dressed in crinoline and nothing, even the price of a magazine, was supposed to change.)

This particular bright Sunday as we walked to the chapel, my sister took her two dimes in her cupped hands and shook them as we walked, listening to them jingle. But as she stepped from the street to the curb, one of the dimes popped out of her cupped hands, rolled along the sidewalk and down the curb, across a drain grate, and down into the drain. Without a second's hesitation, my five-year-old sister exclaimed, “There goes the Lord's dime.”

She was certain that the dime remaining in her hands was hers. And perhaps it was not too unfair to assume that God had a better chance than she of retrieving the dime at the bottom of the drain. But what she was really doing was creating a reality she wanted. In my case, the reality I wanted was unachievable. So I struggle sometimes to see the silver that I still have left in my hands. Maybe, as so
many say, the silver is an appreciation of our own mortality and therefore an increased appreciation of the days we have. It is worth living deliberately to get those days right, like in
Groundhog Day.

This might be mindplay; it probably is, but what are the choices, really? I can live out my remaining days—however many there are—as a victim or I can try to experience them with an intensity that our mortality should have given us every day. I do not want to live as a victim. I even hesitate to write that my condition has worsened in fear that more people will look at me as a victim.

As I sat waiting for an appointment with yet another specialist at UNC Hospital a year ago, there was a woman in the waiting room with me, a woman who had just received a confirmation that she did, in fact, have breast cancer. She sat there, small and frail, a friend who had driven from Greensboro to be with her at her side, but a friend who would have to drive back that afternoon, and as she waited, her shoulders melted into shivering surrender. Tonight she would be alone with appointments to make, dinner to cook, and a job to go to in the morning. And she didn't look like she could even stand up on her own.

I had seen that look before, of course, in hairless women who were navigating the hallways at Georgetown, where I got my first chemotherapy—a hospital, like many, that seems to be in a perpetual state of renovation. Confounded by the absence of a once-familiar hallway, she had a look that admitted defeat. Beaten by cancer and by “progress.”

Now, I don't think you can will your way to good health. To say that is to suggest that those who died didn't have will enough, that this cancer spread in me because I let it, and I know that is not true. But I do believe that none of us knows how many days we have, and it is a shame that any of our spirits capitulate to this disease—or any other—for even a day of the ones we have left.

But I have to acknowledge that one thing is clear: Every decision I make is colored by the fact that I know only that I will die before I thought I might, that each day has a number I cannot yet read. So when I decided to continue working in John's campaign after my rediagnosis, I was holding on to the life I wanted, even if the life I had was clearly less than what I wanted it to be. I adjusted my sails, but as little as possible.

There is a personal dignity that comes with
resisting the word “victim” and all that it means. Resisting by living each day and doing it well, even if, like Phil Connors, some of those days are still imperfect. I see it in the faces of women everywhere, some strong and healthy, some pale and hairless, who have a power in them. Was Donna in Minneapolis this determined before the cancer? Would Sharon in Atlanta have approached me before we had this bond? Not only had their spirits not capitulated, they had risen as they took each day into their own hands, made each day all it might be. Like Phil Connors, and like me, they probably hadn't done it the first day, but we all learned that how we adjusted made a difference in the life we had left.

There is just so much I can do to fight the disease in me. I know that. It frustrates me, it makes me afraid. I want control over it, and I have no hope of that. So I treat it as an asymmetrical war: I attack from another flank. I spend my time fighting for the health of women who have my disease but do not have the benefits of the great health care I get. I fight for more research to cure cancer.

I was in Cleveland to give a speech shortly after my rediagnosis in March of 2007. It was a lovely large room at the Cleveland City Club, the kind of
stately room we don't build anymore in a magnificent old downtown building. After the luncheon speech some of the audience, which was mostly women, lined up to meet me or to have me sign a book or the program. There was a woman who had had breast cancer and her lovely daughter, a political supporter of my husband's, a scarved woman in the middle of chemotherapy. The thought of one woman in particular has stayed with me. She was wearing an ivory suit and stockings, so I assumed that she was working downtown. (I always assume that someone wearing stockings is working; why else would they wear them?) She leaned over and whispered in my ear.

“My name is Sheila,” she said, “and I am afraid for my children. I have a lump in my breast, but I cannot get it checked. I have no insurance.”

“Stay right here,” I said. I called to Jennifer Palmieri, who was traveling with me, and we tried, right then, to get her connected with someone who could get her the help she needed, but by the time we found someone, Sheila had left. I assumed that her lunch hour was over and that she had gone back to work. At one level, this is a depressing story: a working woman with children who cannot get the
health care she needs in a country of such abundance. But at another level, hers is a story of hope: She believed that we live in a country where things can change if we just whisper in the right person's ear.

She whispered in my ear. I am not the right person who can change things. But I am not the wrong person, either. It is like my sister's dime. She could want the dime for herself partly because she was five, but also because she couldn't understand that her dime in the offering plate was going to join other dimes and buy dinner for a hungry family or a jacket for a cold child. I certainly could have felt the same impotence in speaking out against a health care system that denied that working mother the care she needed that I feel fighting against the disease within me. And by thinking of myself as a single voice, I would give myself a perfectly reasonable excuse to do nothing. Or I could choose to see what I do as a small part of a collective effort that might change things. I remember protesting the war in Vietnam. Certainly my individual voice meant nothing, but the power was in the chorus of voices that might in time contribute to the end of that war. And I was in a war now.