Part I: Hunting for a miracle, grasping at a chance

It was only a chair, but it had become his purgatory.

Each day that John Pou spent in the wheelchair, his spirit seemed to die a little more. It was a perpetual reminder of the calamity that had brought him and Marci, even the kids, to this place.

The chair stood for all that was lost: A promising career as a policeman, a vigorous life spent in karate classes and fishing the lakes of his beloved North Carolina, future plans conjured when things were perfect - plans that seemed irrelevant and impossible now.

Their home, too, the dream house John had worked on with his own hands, felt like a taunting monument to his inadequacies: The pool where he could no longer swim or play chicken with Chase and Kacie, the garden he could no longer tend, the front door he couldn't enter without a makeshift ramp for his wheelchair.

That chair, affixed to him like an unwanted limb.

It had been eight months since John shattered his C-5 vertebra diving over a wave during a family vacation. Eight months spent in either a hospital bed or that detestable chair.

Eight months, also, for Marci to hunt for the miracle that just might bring him and their family back from despair.

And now, staring at her laptop, she prayed she had found it.

On the video, a quadriplegic was doing leg pushes on a Total Gym, riding a stationary bike - walking, even, with support crutches in each hand. His wheelchair was parked behind him.

Marci clicked on another link, and saw a paralyzed man working his legs with weights and lifting himself, using a ballet barre for assistance, from a sitting position to standing.

John couldn't even reach for a glass of tea without losing his balance and flopping forward in his chair.

"How are they doing that?" Marci thought.

She studied the clips again. Then again.

It was an April night in 2006, and John was in bed with a urinary tract infection and a fever of 104.8 degrees - their latest taste of misery. But sitting at her kitchen table, looking at videos of the clients at this "recovery" center in California, Marci felt a trace of optimism return.

"This is it," she decided. "This is what we're supposed to do."

She read about the five-phase program that promised added muscle mass, fewer health problems, greater independence and restored function - all through intensive exercise. There was no talk of learning to cope. No bleak predictions about skills that would be lost and never regained.

This place wasn't about learning to live in the chair, but trying to get out of it. For good.

Even its name inspired hope: Project Walk.

"He could be one of those guys," Marci thought that night - and again the next day, as she rolled her husband up to the computer and played the videos for him.

For the first time since the accident, Marci had something to hold onto. All she could think was, "He's going to walk."

If only she could get John to grab hold of the dream, too.

---

When tragedy and life intersect, do you accept the hand you're dealt and adapt - or do you refuse to resign yourself to what may be inevitable, despite what the doctors say and what your own demons whisper when the doubt returns?

In searching for answers beyond day-to-day clinical advice, John and Marci looked deep into themselves, then talked through what they found there. They opened themselves, and their family story, to an Associated Press reporter, speaking freely over 18 months of interviews and sharing intimacies - from personal journals and dinner-table debates to extensive medical records.

This tumult was new for Marci and John, despite their in-the-line-of-fire jobs. He served in the Army during Desert Storm and was a 10-year veteran of the Charlotte-Mecklenburg Police Department; she had worked 20 years at Presbyterian Hospital in Charlotte, N.C., including eight years in the ER.

But she was an information technology specialist, and he had never had to fire his weapon as a policeman. Tragedy seemed remote.

John Pou (pronounced as in church pew) was a North Carolina boy through and through, a daredevil who spent his younger days hurtling over creeks on his motocross bike. On his first date with Marci, he pulled up in his old muscle car - a '78 Pontiac Trans Am. A friend warned that Marci might think him a redneck, but the girl who just happened to adore cars (and football) fell in love instead.

In John, Marci saw something else entirely: a quiet strength that would become the backbone of their 13-year marriage.

"My angel," she liked to call him. "My knight in shining armor."

With her long blond hair and sweet smile, Marci looked more the girl-next-door than a tough-as-nails tomboy. Inside, she was a bit of both. A woman of strong faith and passion, she always wore a brave face through the worst storms, including her own battles with lupus and rheumatoid arthritis.

"Don't tell me I can't," she would say.

Together, John and Marci lived their lives by the Golden Rule, taught their kids to do the same. They were the kind of folks who wouldn't just lend a hand in times of trouble, but a bed, a hot meal, a hug and prayers.

Then came Aug. 22, 2005, and Chase sprinting across the sand to Marci at Topsail Beach, their annual family vacation spot on the North Carolina coast.

"Mommy! Mommy!" her 7-year-old said, "I think Daddy's dying."

Marci had taken their 5-year-old daughter Kacie back to the motel to change her bathing suit. Chase built sandcastles on the beach while John went for a swim.

Marci looked at her little boy. He shouldn't cry wolf, she said. But Chase was insistent.

"No, Mamma!" he said, firmly grabbing her arm.

Marci looked down the beach and saw John on his back on the sand. She ran.

"Help me," her husband mouthed, unable to speak.

John never lost consciousness. Not in that awful moment when he dived over a wave and felt his head hit the sand as though it were a stack of bricks. Not in the moments after, when his entire body went limp in the water and he feared he would drown while his son played on the beach behind him. Not when he finally floated to shore and saw his boy smiling overhead as if Daddy were kidding - smiling until John managed to mouth, "I need help."

When the paramedics arrived, they put him in a neck brace on a backboard and asked: Can you move this? Can you feel this?

He grasped immediately that he was paralyzed. And the one thing he knew was paralysis had no cure.

Marci knew, too. Words she'd barely uttered suddenly came to mind: Quadriplegic. Paraplegic. She didn't even know the difference between the two. She would quickly learn.

John had broken his neck when his head hit the sand, crushing the fifth cervical bone of the spinal column. Doctors believed part of the shattered bone cut into his spinal cord, leaving a lesion along the bundle of nerves that carries impulses to and from the brain and controls the body's motor and sensory function.

In that first two-hour surgery the morning of Aug. 22, surgeons rebuilt John's C-5 vertebra using bone from a donor bank, then screwed a titanium plate from his C-4 vertebra to the C-7 to keep the spinal column stable.

The next day, the doctor delivered the diagnosis the couple expected. Once the initial swelling subsided, John might regain some function, but there was no telling how much. Worst-case scenario: John would be paralyzed from the chest down, meaning quadriplegia, or loss of mobility in his legs and at least partial loss of his arms.

He was 36 years old and had been a 210-pound picture of health. He'd built his own barn on the five acres where they lived in Iron Station, outside of Charlotte. Now he couldn't even pick up a hammer or grasp a fishing pole.

Their life, their goals, had been simple: Marci, 39, was going to retire in eight years, John not long after that. They'd thought about starting their own business buying and fixing up homes.

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.

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.

---

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:
http://www.projectwalk.org/
---

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.

Comments

Popular posts from this blog

Workers free dog trapped in sewer pipe

Axe Me A Question

Crested Geckos - great pet for the disabled