By all accounts I am a successful and accomplished woman. As founder of a national nonprofit organization, I have met with presidents, movie stars, and best-selling authors. But the reason I am alive today, my body stealthily involved in the silent, miraculous business of life, is because of an invisible gift that has been bestowed on me not once, but twice. As a lupus sufferer since the age of fifteen, I had kidneys so damaged that I’ve required two transplants—one when I was twenty-one and the other when I was thirty-five.
Tucked inside me at the moment are two tiny kidneys—my second transplant—from an eight-month-old boy whose name and identity I’ll never know. In time, doctors assure me, these kidneys will mature and grow in me, as they would have grown in him, and develop into adult-size organs that will flush waste products and toxins from my body.
I don’t know my kidney donor’s name, where he came from, or how he died, but sometimes I try to imagine him: I see him pale-haired, dressed in a blue outfit, raised in a warm climateI can’t allow myself to imagine the details of his death or the anguish of his parents. Yet I can still sense the compassion and love that allowed them to pass along this supreme gift to a stranger suffering from lupus-related kidney failure—tiny organs, dispatched without payment, or return receipt, into a universe of need.
A singular act of grace. A year from now I will be allowed to write a letter of thanks that will be forwarded to these parents. This is a scene I like to visualize: my envelope being torn open, my note unfolded, my words, pressed into vellum with ballpoint, absorbed into the minds of this couple. I think of them reading in window light, perhaps with a new infant in their arms. There’s a theory in science called Bell’s theorem, which claims that two particles once connected are never separated, that they are stuck together by something called space entanglement. This exists in the real world, but we can’t see it. But I imagine such a connection with these phantom parents—that we are united in the web of love that is always below the surface, waiting to be perceived.
Humans come equipped with pairs of limbs and organs—eyes, legs, lungs, and ears, but only one of these sets, the kidneys, includes an organ that can be considered a spare. Perhaps due to the nature of our prehistoric diet, we possess more functioning renal tissue than is necessary for survival. Because of this, it’s possible to live a full, healthy life with a single kidney.
What’s impossible is living without one.
Kidneys are the only human organs that can be donated from live donors—other organs require that the donor be deceased.I’m in the rare—and lucky—category of having been the beneficiary of both types of organ donations, from the living and the dead. In 1992, my sister Bonnie gave me her left kidney, offering it up to me with the same sisterly devotion she had always bestowed on me. It has been suggested that the cells of living tissue may have the capacity to remember and memorize characteristics of the person to whom they once belonged. I’ve read studies of transplant recipients who acquire strange new abilities, characteristics, and powers similar to their donors’—a man who could suddenly speak Spanish, a woman who gained the ability to paint. I’ve had no experience with this kind of cellular memory, no sudden flashes of new talent, although I briefly hoped after my sister’s donation that I might acquire some of her ability to sing. What I have been left with is a profound sense of duty to pass on the lessons that I’ve acquired on my twenty-year journey from illness to health. THOSE OF US who face chronic illness remember the before and after moments: the day the phone rang, or the doctor walked into your hospital room, and it was clear that life as you had known it was about to change. You discover that you have cancer or multiple sclerosis or that your child has been stricken with leukemia. You hang up the phone or walk out of the hospital feeling as if your world has been transformed. It’s not simply fear that makes you so disoriented—it’s because you are in the midst of experiencing a true glimpse of the great preciousness and precariousness of life. Falling ill is like joining a private fraternity—one you would never enter voluntarily, but whose membership reveals profound truths that most of us are too busy rushing through our days to consider. In the midst of everyday life, you are suddenly jolted by your own fallibility and finiteness, by the fact that you are no more durable than the shoes on your mortal feet.
In a culture that manages to cordon off this reality as if it were the special circumstance of others, you perceive all at once that this is your fleeting, precious human life. And then it’s as if a veil has been ripped from your eyes. As the poet Rilke wrote: “Just once for everything, only once.”
A person doesn’t have to fall ill or experience great adversity to have such realizations. But the way humans are wired, it often requires such a shock to knock off the blinders of complacency and self-absorption. It is in the face of suffering that so many of us are thrown into the depths of ourselves, and come up bearing treasures of strength, insight, and courage we never knew were there.
When I first was diagnosed with systemic lupus, I yearned for something specific—to connect with others who knew what I was experiencing. If I couldn’t find them in the flesh, then I wanted to read about them, real people like me who’d struggled and survived.
I didn’t want romance or fiction, but true stories about transformation and courage. Before I formed my own nationwide support network, I wanted to read words that would help heal and inspire me. But when I was young, these kinds of books were hard to find.
“If there’s a book you really want to read but it hasn’t been written yet, then you must write it,” the writer Toni Morrison once said. So I’ve set out here to write the kind of book I yearned to read myself, a book made up of separate interlocking stories or vignettes that fit together like links of a necklace.
I’ll weave together the inspiration and wisdom I’ve received from ordinary people and celebrities alike who’ve taught me not just how to survive chronic illness, but also how to flourish in spite of it: Christopher and Dana Reeve and a nameless hospital cleaning lady who sang “Amazing Grace” to me; Alan Alda, Deepak Chopra, Oliver Sacks, and Naomi Judd. They’ve made me realize that facing the challenges of illness is really facing the challenges of life itself. Along the way, I’ll take you through my transformation from a powerless, lonely, and desperately ill teenager, through my formation of a local lupus support group that eventually blossomed into Friends’ Health Connection (FHC), the national organization that I founded and ran from my hospital bed and dorm room.
I’ll take you along a path zigzagged with the most unusual destinations: one day at the White House Rose garden, shaking hands with President George H.W. Bush, two days later homebound in a wheelchair; one day on Fox television, the next day back in a hospital bed. I’ll share the lessons of valor and hope, courage, and love that have been bestowed on me along the way. My years of chronic illness have shown me that the private fraternity I thought I was entering wasn’t so private at all—it was a club in which most of us would eventually become members, if not ourselves, then through friends and loved ones.
Transplants are miracles of modern medicine, and I’ve been doubly blessed. I vowed to my sister and the nameless eight-month-old who were my donors that my life would be worth their sacrifice. This book is part of my promise to them.