|
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.
___
John was skeptical when she showed him the video clips she'd found online.
"They can do a lot these days with cameras," he told his wife.
But with the help of John's mother, Marci persuaded him just to visit this Project Walk place. Marci called and the response was welcoming: Come anytime. A few weeks later, they were on a plane to California.
The center sat in a nondescript business park in Carlsbad, north of San Diego. From the outside, the building could have housed anything, a real estate business or telemarketing call center.
Inside, it was amazing, so different from the outpatient rehab centers John and Marci had tried: A reception area opened into two sprawling rooms filled with workout equipment, some of it specially suited for the disabled -- things like a standing frame, which allows a paralyzed person to stand securely to help improve range of motion and circulation, and a gait trainer, a machine that uses ski-like foot plates to simulate walking while the user is strapped into a harness.
There were also Total Gyms. Step climbers. Leg cycles. Equipment that any able-bodied person might use. And trainers were constantly hoisting clients out of their wheelchairs and onto equipment.
The wheelchairs sat empty.
They spoke with a man from Tennessee who was paralyzed playing football. He relocated three years earlier with his parents and had been at Project Walk ever since. He wasn't walking -- "yet," he said -- but he wasn't about to give up.
They chatted with another man who moved from a nursing home in Montana to Carlsbad with his girlfriend to begin the therapy in 2003. The client, Donny Clark, was paralyzed in an ATV accident, a C5-6 injury like John. Now, four years post-injury, he was taking steps in a walker, with trainers helping to move his legs.
"Are you planning on staying?" Marci asked them.
"We bought a house," said Donny's girlfriend, Kathleen.
When John and Marci met with Ted Dardzinski, one of the founders of Project Walk, he warned them the process would be long -- with no guarantees.
"But we're going to do everything we can to help you get better," he said.
Those were the words Marci had been waiting to hear. And seeing had her believing. These clients were for real, she thought. They weren't faking it. There was no trick photography. And it looked like they were having fun. Rock music was blaring. The atmosphere was upbeat. Everyone was smiling.
"This is where we need to be," she thought, "with people like us."
John wasn't entirely sold. He wondered how he was supposed to use all that equipment when his body felt like cement. Maybe his injury was worse than those of the guys they'd seen working out.
Even so, Project Walk seemed to him like a glimmer of light in a world that had gone dark.
The next day, John and Marci went apartment hunting.
When they returned to Iron Station, they sat the kids down at the kitchen table and tried to make it sound like a grand adventure. California was far, true, and they'd be leaving their home, their friends, their family. Chase and Kacie would have to try a new school.
"But this is a place," Marci explained, "that might be able to help Daddy walk again."
A year, the couple had decided. They'd give it a year.
It was the beginning of a journey with no promise of a happy ending, no assurance that John would regain any function, much less walk out the door -- like those men on the Web site.
But Marci and John were devout Roman Catholics who had clung to their faith especially tight since the accident.
God created heaven and earth in seven days. Maybe, just maybe, he could give them their miracle in a year.
___
TO BE CONTINUED
___
On the Net:
___
NOTE -- This story is based on interviews by AP's Pauline Arrillaga over 18 months with John and Marci Pou and their children; the founders, trainers and clients at Project Walk; and spinal cord injury experts, including Dr. Donald Leslie, medical director of Shepherd Center in Atlanta; Dr. John McDonald, a neurologist who worked with the actor Christopher Reeve and now directs the International Center for Spinal Cord Injury at Baltimore's Kennedy Krieger Institute; Dr. Wise Young, founding director of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University; Susan Harkema, rehabilitation director of the Kentucky Spinal Cord Injury Research Center; and Laurance Johnston, former director of the Spinal Cord Research and Education Foundations for Paralyzed Veterans of America and author of the book "Alternative Medicine and Spinal Cord Injury." Quotes and scenes were observed by the reporter, were drawn from video recordings made by the Pou family or Project Walk staff, or, in some cases, are as remembered by those who spoke or heard them.
[Associated
Press;
Copyright 2008 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
News | Sports | Business | Rural Review | Teaching & Learning | Home and Family | Tourism | Obituaries
Community |
Perspectives
|
Law & Courts |
Leisure Time
|
Spiritual Life |
Health & Fitness |
Teen Scene
Calendar
|
Letters to the Editor