Hunting for a Miracle, Grasping at a Chance

Part I

They planned on growing old in their dream house, imagined getting horses and laying out bridle paths throughout the property when the kids were older and, much later, sitting around the fireplace on holidays with their grandchildren.

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(Photo: AP Images / Denis Poroy)

Marci Pou, right, holds hands with her husband John Pou as they watch other clients trying to walk during an open house at Project Walk in Carlsbad, Calif. Friday, Nov. 10, 2006.

Instead, rehabilitation became their life. They spent two months at the spinal cord injury program at Shepherd Center in Atlanta, then another two at a Veterans Administration hospital. The most basic living skills had to be taught and relearned — how to brush teeth with hands that didn't work, how to eat using a wrist cuff and adaptive forks and plates.

Marci attended classes every day with John, learning how to catheterize her husband to relieve his bladder and prevent a side effect of spinal cord injury called dysreflexia, which can raise the blood pressure. Learning what to do when just the opposite happened and John's blood pressure dipped, causing him to faint. Learning how to use a sliding board to transfer John from bed to his wheelchair. How to monitor for pressure sores.

About a week into their stay at Shepherd, John and Marci were brought to a conference room and listened as John's doctor explained his injury and prognosis. He pointed at one of those skeleton models you'd see in a classroom. He showed them images of John's spinal cord.

Usually by this time, he told them, the level of function you have is all you're going to get back.

John was in a power wheelchair, with a chest strap holding him in place. Yet the doctor was essentially telling them: This is your life.

John wondered how he would ever live like that. Marci simply refused to believe it. Where were the options? She wasn't hearing anything about recovery. Only adapting, accepting and learning to live in the chair.

When they left Shepherd and the Veterans Administration facility to head home, they received brochures about adaptive equipment and a list of "possible activities" for quadriplegics with John's level of injury: billiards, board games, books on tape. Fishing and gardening were mentioned, maybe with pole holders or grasping cuffs.

They were given manuals with titles like, "Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury," which talked about bladder care, wheelchair maintenance, tips for hassle-free flying.

They arrived home with two loaner wheelchairs and no plan. They hadn't even begun adapting their house.

After a few months, they tried an outpatient rehab center in Charlotte. John worked for a couple of days with a therapist who tried once to see if John could roll from his back to his stomach in a test of his strength and stability. He couldn't, and they never tried again.

Instead, John began using the center on his own, rolling up to an arm bike and other equipment that had been adapted for workouts from the wheelchair. His legs went neglected.

At Shepherd, Marci had heard from another patient about a doctor in Portugal who used olfactory tissue to try to repair the spinal cord. But it was all experimental, and John wasn't comfortable with the thought of more surgery. And the cost? Estimated at $100,000.

They got a wheelchair van, and spent their days watching Chase and Kacie play baseball, taking them to karate, going to church. Otherwise, John sat in his chair at home. He was free of it only at night, when he slept.

Marci took to the Internet, reading anything that had to do with spinal cord recovery. She understood that there wasn't a cure, but she wasn't about to let her husband decline without a fight.

She perused chat rooms to see what others had done. She subscribed to magazines like PN — Paraplegia News — and scoured a regular feature called "Healing Options," which reviewed stem cell therapies, herbal medicine, acupuncture, laser treatments.

It was there that she first read about Project Walk.