Friday, March 10, 2006

Dana and Chris Reeve - And David

Click on picture for larger view.

"Not the senses I have but what I do with them is my kingdom." Helen Keller

Dana's Reeve's death is a tragedy. Compounded by the tragedy of her husband's life-altering accident and eventual death. It brought to mind someone I knew a long time ago. And the lessons, both practical and spiritual I learned from him.

Here is his story.

It was a beautiful October day. The kind of day you savor. Remember. But on this day, a life would change forever. In a way impossible to forget.

David's parents were in the stands cheering their 17-year-old son and his New Jersey high school football team. The quarterback threw a long pass. Nimble, graceful David caught it midfield and with his legendary speed began to run, opposing team members hot on his heels.

A tackle. A pile up. One by one the players got to their feet. Except David. He lay on the field. Still. Too still.

A mother knows her child's every move. And she knows how he looks when he's not moving. David's mother knew instantly his profound stillness was dangerously different. Not normal. Wrong.

As the first aid squad moved onto the field, David's father, a retired Army Colonel tried to reassure her. "He's just knocked out," he said. "He's tough, he'll get up in a minute when he comes to."

But she was already in motion, running toward her child, filled with a terrible dread. As they were carrying him to the ambulance David opened his eyes and smiled at her, his father's son, trying to allay her fears. "It's okay, Mom," he said. "It doesn't hurt anywhere."

Words that still echo in her memory. Because he didn't know then what his mother sensed instinctively, and the doctors soon confirmed. He was paralyzed from the neck down. A quadriplegic for life. He would never feel pain again. Small comfort. No comfort.

On a beautiful August day 13 years later, we were at our beach house in Ocean City. The sound of hammering woke us up at 8 am. Two men were fitting a wheel chair ramp over the steps to the house next door.

A big van pulled up and a man in a specially equipped wheel chair emerged, along with two women, two little girls and a toddler. We watched as the man was maneuvered up the ramp to the big porch facing the beach, then turned toward the sun and the ocean.

We took a thermos of coffee over to welcome our new neighbors. And met David. Along with his two full time nurses and their families. And entered a world we'd never known. One nobody should have to know. Yet thousands do.

Over the course of that summer, we experienced a small bit of what Dana and Chris Reeve--and far too many others--were forced to face. The mind-boggling enormity of the daily struggle with a catastrophic injury.

Get inside it for a minute. Imagine your chin itches. Then imagine having to ask someone else to scratch it for you. Picture a tube in your throat, connected to a machine 24/7 -- because you can't cough, or clear your throat or even breathe on your own.

You need round the clock care. All your bodily functions are managed by others. Diapers and dressings and catheters changed. Medications and treatments administered. You suffer constant infections, open sores, bouts of life-threatening pneumonia.

You must be dressed and undressed by someone else. You must be spoon fed. Soft food and liquids because you can barely swallow. Somebody must brush your teeth, wash your face and body, clip your nails, wipe your nose.

You have to ask someone to turn lights, television, music on and off. You've got to be lifted from bed to wheelchair and back, two of only three venues in which you can survive. (More on the third in a minute.)

You are a 30-year old adult trapped in the body of a helpless infant.

You can smile, grimace, turn your head, speak, laugh, curse, cry. That's it. That's all the control you have over your entire body. But you have infinite control over your mind. Your intellect. Your sense of humor. Your spirit.

And that's what saves you. If you have the Herculean courage to use those few vital tools left intact. Chris Reeve found the courage. So I'm sure do thousands of others. Including David.

David's sense of humor is what I remember best. He used to say if he could only move one arm again, the first thing he'd do was pick his nose. That made the kids giggle. Especially the boys, who regularly offered to pick it for him, as they'd all--including David--dissolve into laughter.

David loved kids. One of my favorite memories from that summer is watching David and the boys play. They'd position his wheelchair in the alley behind our houses. He'd turn his head away from the special tube near his mouth, thus releasing the airflow that moved the chair. And one by one, each kid would jump on a skateboard, grab the back of the chair and let David take him for a ride.

The children's easy acceptance of David's almost total disability was incredibly moving. Empowering. Life affirming. They'd climb in bed with him to watch videos and baseball on TV. Argue endlessly about sports -- David's passion. Bring him juice. Scratch his chin. Change the channel. Call for their mothers--his nurses--when needed.

Children caring for the needs of an adult. The irony of the role reversal unnoticed. My then 9-year-old son hung back at first. But eventually he too fell under the spell of David's charm. And forgot, or at least was able to ignore his grotesquely lifeless body.

Tami was David's primary nurse. His favorite. She'd attended college with him, taking his notes and helping him study. Writing papers and taking tests as he dictated. She earned that degree almost as much as he did. She, her husband and their two children were like family. And every summer they went to the beach with him, a vacation for them -- and a brief respite for David's parents.

David loved the sun. In the picture above, you can see his deep tan. Every day the monumental effort began to get David outside onto an air mattress (the third venue) in the sun. His ventilator had to be disconnected while he was moved. That meant for those few moments he couldn't breathe.

We joined in, all grabbing the edges of his bed sheet and carrying him as quickly as possible through the sliding doors to the porch. They'd been struggling with that air mattress, trying to keep it still, working mightily to lift him up onto it. I had an idea. Have the children sit on the edges at the head and foot, simultaneously holding it steady and lowering one side. It worked.

You have no idea how gratifying it is to help someone get life-saving oxygen a little sooner. To ease a frightening discomfort. To make one small difference. Those who care for the profoundly disabled know. And sometimes forget.

A story told to us by Tami. David once had a new nurse at home. He got a late phone call from a friend in California. The nurse propped the phone in its special cradle against his head, then left the room to give him some privacy. And fell asleep. After the call ended, David lay for 3 hours, a tortured captive to the dial tone. It would be months before he'd take a phone call alone again.

David worked as a statistician for the township, using his computer with Tami's help. He earned money. And the unwavering respect of everyone who knew him.

We stayed in touch after that summer, with David and with Tami and her family. But as often happens, life and time intervened and we drifted apart. I've thought of them many times over the last 13 years, wondering how David's doing.

When I started to write this, I tried to find out. But addresses and phone numbers have changed and I hit a wall. Then I tried Goggle. I can't know for certain, but I found a New Jersey memorial park in David's name.

I wish I'd been able to contribute to that memorial. But I've made a contribution honoring David and all the brave souls like him to the Christopher and Dana Reeve Paralysis Resource Center.

If David is indeed gone, I hope he's with Chris and Dana Reeve, running in the sun.

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