A Song in the Night (34 page)

Then members of the operating team came to get me, and with great tenderness Anne kissed me and said goodbye. They took me into an ice-cold, brilliantly lit room, where I was surrounded by bustling people in caps and masks. They moved me onto the operating table, gently positioned my arms and legs, and spoke to me quietly. And then, as it says in the Gospel of Luke, I launched out into the deep, delivering myself wholeheartedly into the hands of others and into an unthinking darkness from which I had no idea if I would ever return.

For a long time everything was blackness, emptiness, until slowly it wasn’t, and I began to hear voices and feel people moving my body and painlessly removing the tubes that had kept me alive. I recovered consciousness and found myself in intensive care, with Anne, looking tired but relieved, standing beside me. The nurses bustled around and offered quiet encouragement. The doctors came in and spoke to me, and their voices seemed to come from a long way off.

As the hours and days passed, I returned to this life. My recovery during the first weeks was hard—the medical staff watched every heartbeat, every breath, and every change in my body chemistry with vigilance. I experienced strange and difficult symptoms—flashes of intense cold, sudden exhaustion and sweating, accumulation of fluid in my abdomen—but they addressed each one. The nurses, who came from around the world but all spoke in southern accents, took care of me with skill, affection, and good humor. My sister Susanna traveled from her home in Kentucky to make sure I was okay.

After a week of recuperation, Dr. Knechtle approached me with an interesting request: Did I want to meet my liver donor? Anne had already guessed that the donor was somewhere on the same floor, and she even had an idea of who it might be, but this was a direct invitation to meet. I said that I would be delighted to do so, if she was also willing. The word came back that she was. At the appointed moment we gathered—the two families, several doctors, a few nurses and social workers.

Dr. Knechtle suggested that we start by talking about our lives before transplantation and what it meant to us that we had gone through the procedure. I learned that my donor, a charming young woman named Jean Handler, had lived with her illness and its frightening implications from the moment of her birth. She had been forced to eat a rigorous and highly tedious diet; she had never tasted anything with a significant amount of protein until the days after the surgery. I talked to her about what it was like to grow up with hemophilia. I mentioned the joint bleedings, the pain, and the long stretches of isolation and missed school. At different moments during our
presentations, everyone in the room choked up and we had to pause for a second before we could go on.

We chatted more and more comfortably about the details of life in the aftermath of transplant. We both knew that we had a long recuperation in front of us. Jean told me about tasting ice cream and meat and other previously forbidden foods for the first time. We agreed that the nursing staff was the best we had ever known. Eventually we started to tire, so we decided to meet again in a few days.

As we got ready to depart, I leaned forward and concentrated my attention on Jean.

“Jean, I just want to express my gratitude as deeply as I can. This was an extraordinary act of generosity on your part. It is going to change my life completely.”

She let out a light and breezy laugh.

“Oh, Bob, of course!” she said with a huge smile. “Any time!”

In those first weeks and months of recuperation, the doctors focused on the critical issue of whether my body would accept the foreign tissue of Jean’s liver. They measured and adjusted my anti-rejection drugs daily. They also wanted to be sure that by suppressing part of my immune system they did not cause the HIV and hepatitis viruses to get out of control, so they put me on medications to control those. For eight weeks I continued living at the transplant house, struggling with the many complicated symptoms that emerge in the first few months of
a new organ. Again Anne took care of me as I mastered the new medications and overcame each challenge. Katie came for a visit, and it was a thrill to see her, though she struggled with her disappointment that I was not “all better yet.” Soon it was time for us to go home and begin our new life.

When we finally packed up and left for the airport, I experienced a moment of disorientation. All our bags were ready, but I could not find the “shot bag” in which I carried the material for my hemophilia. I instinctively looked for it. Then I was reminded of the truth: Jean’s liver, residing in me, was now successfully churning out Factor VIII at normal levels. I did not need the shot bag—and I never would again, for the rest of my life.

I sat down on the bed and put my head in my hands, overwhelmed with emotion. Sitting there in that little room, I realized that the deepest and most secret desire of my childhood, the dream of the crippled Superman, the desperate cry of the boy suffering through the brutal joint bleedings that kept me from walking and from sleep, had finally been heard. In addition to my salvation from HIV and from hepatitis C, I had experienced a miracle that stretched all the way back to my first flickering thoughts in this world. For there in Atlanta, my hemophilia, the one thing that I had thought would define my life from birth to death, had been utterly, totally, and permanently cured.

I
am once again sitting in Maine in the small log cabin to which I have been returning for more than fifty years. The sun is rising through the fir trees and warming the tall grass. A breeze is blowing straight up from the cove, carrying the rich aroma of ocean and sand, seaweed and clay, all brushed clean by the forest. Bees are making their rounds of the black-eyed Susans and blue cornflowers planted just in front of my window, while an emerald-backed hummingbird flutters from blossom to blossom. It is now more than two years since my transplant and my startling return to activity.

As I sit, I wonder, what does one do with a second chance in life?

Under any normal circumstance, I should not be here. When I was born, hemophilia was considered a potentially fatal illness; my life expectancy was less than thirty years. When I contracted HIV, the usual amount of time between diagnosis, progression to AIDS, and death was as little as two years and no more than five. And each year thousands of people in the United States—and millions around the world—die of liver disease from hepatitis C.

Yet here I am, sitting quietly and at peace, my hemophilia resolved, my HIV tamed by my immune system and medication, and my hepatitis rolled back through the advent of a new liver. In my fifties, I am still alive—and I am now at liberty to die of old age.

Sidelined and silenced for long periods of time, I am now healed and feeling new force. I am no longer a racehorse trapped in a barn; the doors have been unlocked, the gates have been thrown open, and I can see the rolling fields of the future sparkling in the sun and stretching to the horizon. I now want to go out into the world and to speak and to act, not for myself but for everyone who is struggling and hoping for a better life. I see a great deal of what is wrong with our economy and our world, and I want to join those who are seeking to renew democracy and to transform our economy into one that is newly prosperous and sustainable.

In short, I have a simple yet immense desire. I want everyone to thrive. Each person and each family deserves the right
to enjoy the relatively brief time we have been allotted on this planet. To do so, they need access to the basic foundations of a life of dignity and prosperity. In America many of our old solutions and institutions have failed, and it is time for us to take bold steps to create new ones.

I want to work so that every family has the basics of life: a good home, a good school, a good doctor, and a good job. These four walls together form a foundation of freedom and prosperity. When we look around the country, we see too many people struggling to obtain these basics. There are many reasons for such struggles, from personal problems to market failures to structural injustice. But a life, a community, and a nation that provides these things is not some magical fantasy. It was the purpose of the founders and has been the goal of every subsequent generation. The question that burns within me now is whether this is still our goal today. Or have we, for the first time in American history, lost confidence in our dreams?

My conviction is clear. After having lived through all the events detailed in this book, I believe that our direction is determined by the blend of our aspirations and our desires. It
matters
what we choose to believe in.

If I had listened to the conventional wisdom about my health, I would have resigned myself to an early death and never set foot outside the apparently small, sad domain of my life. If millions of people had listened to what was said about racism in the United States and South Africa, then we would not have worked tirelessly for racial equality. Nelson Mandela
would have died in prison, and the people he brought together would have remained trapped in the division, misery, and hatred that seemed at one point to be their only destiny. There never would have been an African-American president of the United States. If we had given up on the ideal that we must preserve our planet, we would never have created the institutions and practices that are setting us on a common path toward sustainable prosperity.

Our values guide our choices before we act. We design blueprints before we build. As it says in the New Testament, hope is faith in things
not
seen. Every course is set by pointing to a destination where we have yet to arrive.

As a nation we have faced deeply discouraging moments before. Our union almost dissolved many times in its first hundred years. And even though we may not break into two physical nations, we are no longer “one nation, indivisible, with liberty and justice for all.” The United States has become a nation divided by dollars. Many Americans are still reeling under the hammer blows of wild market forces and financial manipulation. The poor and the wealthy now live in such isolation from each other that they often forget they are citizens of the same country.