Francesco Clark - Walking Papers: The Accident that Changed My Life, and the Business that Got Me Back on My Feet

A LEXANDRA R EEVE G IVENS

WHEN MY FATHER WAS INJURED IN 1995, IT FELT LIKE OUR world had been turned upside down. I was eleven at the time, my older brother was fifteen, and my younger brother was two. Our lives changed in an instant, and through the early weeks and months we wondered if things would ever be the same.

Piece by piece, we began to put our world back together again, working to find joy and humor in what seemed like dark moments. My younger brother, Will, celebrated his third birthday in Dads hospital room with makeshift balloons made from Latex rubber gloves. When Dad got his new power wheelchair, my older brother, Matthew, glued a button on the hand rest with the word Eject on it. Letters poured in from friends, known and unknown, around the globe. And in time, Dad began to make progress in rehab and took the first steps to build his foundation for spinal cord research. As so many had done before us, in adversity we rediscovered the building blocks of life: family; friends; humor; faith; and above all, hope.

In the fourteen years since my fathers accident, and especially in the past three years that I have served as a director of the Christopher and Dana Reeve Foundation, I have seen countless families face the same struggles as they deal with the harsh realities of life-changing events. The challenges are many: trying to stay physically strong; navigating the red tape of insurance companies; finding suitable work. Nearly two-thirds of Americans living with paralysis have a household income below $25,000 per year. And yet, time and again, families come together and find reasons to hope.

My father once wrote that hope is like a lighthouse: For it to guide you, it has to be built on solid foundations. In the field of spinal cord injury, countless individuals and organizations are building the foundations for hope, developing new areas of research and promoting programs that help people coping with paralysis to live more active lives. Activity-based therapies are giving some spinal-cord-injured patients significant improvement in their mobility and health. Research into regeneration is progressing, and President Obamas decision to lift the federal restrictions on stem-cell research has opened the door for scientists to explore new possibilities with the benefit of federal funding and oversight. We have a long way to go, but now more than ever, there is much to be hopeful for.

Over the past few years, I have been fortunate to work with Francesco Clark, whose story in so many ways captures the challenges, sorrows, and triumphs of living with a spinal-cord injury. Few people embrace life with as much joy, unity, and infectious good humor as Francesco and his family, and I am honored to call them my friends. Like a lighthouse, I hope Francescos story will serve as a guide to anyone feeling lost and in need of hope. Walking Papers shows all of us that with hope as our foundation, anything is possible.

NOT SO LONG AGO, I BEGAN TO HAVE A RECURRING DREAM . In the dream, Im floating. My body is weightless, and Im drifting. I feel completely at ease and at peace, both in body and mind. Im calm yet self-aware. There are no sounds and Im without anxiety. Im bathed in a warm, white light that surrounds me completely. Im literally floating in the clouds.

My dream is so astonishing that it wakes me up. Instantly, Im brought down to earth. Back in reality, I dont float and Im not weightless. Im made of flesh and bone, and more than many people, Im subject to the laws of gravity. I have a spinal-cord injury. I cannot feel or move most of my body. Lying in my bed, its as if theres a giant invisible weight pressing down on me. It is hard for me to turn onto my side, adjust my pillow, or even pull up the sheet unless I have someone to help me. If Im thirsty and want to drink from the glass of water on the nightstand, I cant reach for it. If I want to get into my wheelchair and leave the room, I have to ask someone to move me. If no ones available to help, I wait.

What does it feel like to be immobilized in this way? After seven years of being injured, I still find this so hard to describe. To put into words what it feels like is like trying to give a blind person an accurate depiction of what its like to see. Its just so strange. In one sense, I feel the kind of numbness youd expect after a trip to the dentist, except that my whole body is frozen, from my shoulders down to my toes. Even so, I do still feel something . The diagnosis I was given at the time of my injury was that my paralysis was complete, but in fact, the reality has always been far more complex. Yes, I feel numbness, but its accompanied by a constant pins-and-needles sensation throughout my middle and lower body, the sensory equivalent of static on the radio at a very loud level. Most of the time, this incessant buzzing is just annoying, but at other times, it comforts meit lets me know I have legs and a body, and that I am alive. I also feel a degree of hot and cold, but in a way that is somewhat delayed. For instance, I can sense temperature in my legs but only after they are very cold or very hot. At times, I feel a sensation of water spraying my skin, like Im taking a cold shower, but Im completely dry. Im aware of pain in my body if it becomes too great, through a wave of extreme heat and sweating. If my left leg is in a lot of pain, the right side of my face will sweat and I feel a surge of heat in my left leg. So, in a sense, I do still feel things, but differently. The signals that my brain receives are confused.

The problem lies at the core of my body, in my damaged spinal column that runs from my brain through the vertebrae of my spine all the way to my tailbone. Until my injury, I hadnt taken the time to think about the essential role that this long bundle of tissue and nerves plays in our everyday lives. The principal function of the spinal cord is as a connector: It carries nerve fibers (also called axons) from the brain to the rest of the body and from the body to the brain. Thanks to the spinal cord, a thousand simple messages are transmitted around the body on a daily basis. The brain wants something, so it asks the body to get it, sending its message through the spinal cord. The body feels discomfort, so it asks the brain to do something about itagain, the message is transmitted via the spinal cord. All this works beautifully, as long as the spinal cord is intact. But when I broke my neck, the two vertebrae just below the back of my head shattered like glass, cutting into my spinal column and severing the connection between brain and body completely. After that, the whole system shut down. The nerve fibers coming from the brainwhich are responsible for muscle control and movementcould no longer make their connections. The nerve fibers traveling toward the braincarrying sensation and vibrationwere gone from me. I had become a foreign object even to myself. I couldnt feel, couldnt move. I could still think, but I couldnt do anything about it.

At first, it was my legs that I missed the mostI just wanted to get out of bed and walk. Like most people, I had always taken walking for granted. You wake up in the morning, swing your legs over the edge of the bed, put your feet on the ground, stand up. You begin your day by putting one foot in front of the other. You walk to the kitchen and make yourself a cup of coffee. If youre late for work, you run for the bus. Only when youre unable to get around in this way do you realize the sheer joy of walking: the sound of your shoes slapping on a sidewalk as you leave the house, your arms swinging at your sides, that feeling of going somewhere under your own steam. You dont realize how much pleasure lies in all those tiny imperceptible decisions you make along the way, whether youre going to turn left or right, hop off the curb to cross the street, or whether youre going to stroll or sprint.