The Washington Post Magazine
January 27, 2008
WITH LITTLE FANFARE, Pat Rummerfield strides through the outpatient clinic at Kennedy Krieger Institute's International Center for Spinal Cord Injury in Baltimore. He's a non physician making his rounds, checking on the quadriplegics and paraplegics who find inspiration in his every step.
He ducks into a side room where Robby Beckman is immersed in a tank of chest high water. At the bottom of the tank is a wide rubber belt that scrolls like a treadmill. Thanks to the buoyant properties of the Hydro Track, Beckman can practice ambulating on his own. Keep those heels down. Don't drag the toes on that right foot. It's tough going, like wading through melted caramel.
Beckman broke his neck in an Ocean City diving accident during the summer of 2003. In an instant, he became a quadriplegic. Catapulted into a wheelchair at age 19, he was told that's where he'd forever remain. Yet here he is on a March morning almost four years later walking in water, which for him seems almost as remarkable as dancing upon it.
Rummerfield, a senior staff member at the spinal cord center, watches Beckman struggle to keep his legs moving. To take Beckman's mind off his aching muscles, Rummerfield asks about a ski trip Beckman recently took with a group of disabled athletes.
"I just fell on my face a lot," says Beckman, who sat on a monoski to whiz down the mountain. "It was awesome! Being on the edge of out of control."
In a place where people move mostly in slow motion, the conversation turns to speed. "Mr. Pat, I bet there's nothing like the adrenaline of being behind the wheel and going 200 miles an hour!" Beckman exclaims. He knows that Rummerfield has competed in a few minor NASCAR races and holds a world speed record set in 1999 on the Bonneville Salt Flats: 245.5 mph clocked in an electric car. Those accomplishments only hint at what his presence in this room means to Beckman, who, in private, calls Rummerfield "more or less the person I want to be."
Rummerfield, 54, is himself a quadriplegic, injured in a high speed car crash decades ago. You would never guess that without reading his medical chart. Even then, you wouldn't know he has run marathons and completed triathlons in addition to his auto racing exploits. Along the way, Rummerfield has overcome five knee operations, broken legs and fractured ankles. He doesn't walk with a limp, never uses a cane and is modest of both build and demeanor. In short, the most ordinary of extraordinary men.
Rummerfield often is described as the world's most fully functioning quadriplegic, meaning he copes with severe loss of function in his arms and legs. (Paraplegics, as a rule, are affected only from the chest down.) "He's missing two thirds of his spinal column," notes John McDonald, director of Kennedy Krieger's spinal center. "If you lined up 10 people's MRIs that look identical to Pat's, nine would be in wheelchairs."
By any reasonable definition, Rummerfield qualifies as a medical miracle. That poses some beguiling questions. Is he a lone Lazarus, or can his comeback be replicated on a grand scale? Contrary to conventional wisdom, are spinal cord injuries curable?
McDonald believes they are. He's the neurologist who the late actor Christopher Reeve believed would help him conquer his paralysis. He's a very vocal proponent of the notion that repetitive exercise so called activity based therapy can revive damaged muscles and nerve endings, can replace blown fuses that disrupt the mind body spinal connection. "What if people have the same ability to regenerate as reptiles?" he asks.
Indeed, McDonald insists that someday as many as 75 percent of paraplegics and quadriplegics will regain the ability to walk and that Pat Rummerfield is pointing the way toward a previously unimaginable future.
* * *
RUMMERFIELD'S TITLE AT KENNEDY KRIEGER IS "PATIENT LIAISON," but in many ways he's a role model without portfolio. Part of his job is just to be Pat Rummerfield – to serve, literally, as a walking inspiration. There are those who cry upon meeting him, who thank him profusely for providing them with a thin thread of optimism.
Not long ago, Rummerfield got a letter from Alvaro Gomez, a Colombian high school senior who had come to the United States from Bogota for treatment after a horseback riding accident left him paralyzed. Inside was a photocopy of his yearbook page dedication: "Patrick, you are like my guardian angel. You give me the strength and hope to keep moving on . . . 'No pain, no gain.'"
Rummerfield is in regular contact with dozens of quadriplegics and paraplegics, counseling them on everything from depression to health problems to insurance hassles. He considers Nate Waters, a 29 year old accountant with an Oklahoma energy company, "like a little brother." When Waters was a teenager, his mother's boyfriend broke his neck in a vicious beating; then the family abandoned him.
"I didn't know Pat from a hole in the wall," says Waters, who lives in a Tulsa nursing home and comes to Kennedy Krieger for periodic checkups. "Watching him and how focused he is on work and getting things done had a big impact on me . . . I've been paralyzed for 10 years. Sometimes I get burned out going to therapy. After talking to Pat, it's like, 'Okay, I got more juice in me to keep on doing it.'"
Rummerfield doesn't motivate with locker room type pep talks. He's by nature low key. In repose, his face often has a hangdog expression, giving him the air of a softhearted but overextended priest.
"A lot of people that find him are at their wits' end and don't know what to do," says Rummerfield's wife, Barbara, who has watched Pat struggle with being the sounding board for so many sad stories. "It weighs on him. He has said in the past, 'This is just so hard.'"
Yet there are also those who view Rummerfield as a possible purveyor of false hope. Steven Edwards, a quadriplegic and spinal cord injury activist from Charleston, S.C., sees him standing on a distant, perhaps unreachable, mountaintop. While McDonald points to Rummerfield as activity based therapy's ultimate success story, Edwards is wary. "Ask Dr. McDonald," Edwards says, "who he can drag out besides Pat Rummerfield."
No question, Rummerfield's recovery remains largely a mystery. A howdunnit. About 10 percent of quads and paraplegics spontaneously recover a degree of mobility, specialists say. Others make important, less dramatic gains with therapy, such as moving fingers enough to operate an electric wheelchair or lifting an arm high enough to feed themselves. But Rummerfield's comeback is so extreme that it's off the charts.
"We can't explain it in a scientific way," says Cristina Sadowsky, Kennedy Krieger's clinical director and Rummerfield's personal physician. The best Sadowsky and McDonald can offer are educated guesses of what went incredibly right. Rummerfield's broken neck fortuitously healed in an almost perfect straight line. His car accident may have rattled a part of the brain that controls inhibitions, hence his unusual capacity for pushing himself far beyond the norm. Good genes probably play a role, too.
There's a study underway at Kennedy Krieger in which high tech, three dimensional MRIs are being taken of a total of 100 healthy and injured spinal cords. Rummerfield was the first volunteer to be scanned. McDonald and research coordinator Visar Belegu couldn't wait to get a peek at his pictures. Their coolly professional reaction? "We completely flipped out," says Belegu.
They discovered collateral tissue damage above Rummerfield's wound site at vertebrae C3 and C4 that doesn't show up in a standard MRI. Belegu points to a section of the vertical, lateral and dorsal columns within Rummerfield's spinal cord. About two thirds of it is black. A dead zone.
"He's got no signals coming from those areas," says Belegu. "That's less than Chris Reeve had, and he was completely paralyzed."
A clinical diagnosis of quadriplegia or paraplegia isn't just a matter of counting inert limbs. It's based on a cumulative score from multiple sensory and motor skills tests. Robby Beckman, for example, is a quadriplegic who can move his arms but has minimal hand control. Likewise, Rummerfield is still classified as a quad because there are so many residual effects of his spinal cord injury. He chills easily, is prone to kidney stones, can't grip tightly with his right hand and takes catnaps instead of restful sleeps. He's also numb below the knees and has brittle bones.
Beckman couldn't tell Rummerfield was a quadriplegic until Rummerfield told him. There are, however, subtle clues. Lacking feeling in his lower legs, he moves with the deliberateness of an older person. For all intents and purposes, he's walking on knee high stilts. Block his field of vision, and he's helpless.
"If I try to carry a big box, I can't do it," Rummerfield says. "I fall down because I don't know where my feet are."
Running accentuates those deficiencies. He has a sluggish, unbalanced stride but can hold a steady, 12 minute per mile pace. Clearly, Rummerfield's brain and nervous system are compensating in some way. Exactly how, nobody knows. He says he looks and listens to his surroundings for cues. Every step he takes is a conscious decision. Nothing is instinctual. Acute spatial awareness might explain walking, possibly running. But driving race cars?
"So far from normal, it's unbelievable," says Belegu. "It's crazy that he can do
* * *
"MR. PAT DOESN'T KNOW IT YET, BUT I'M GOING TO BE HIS ASSISTANT WHEN I GRADUATE," teases Beckman, continuing his march on the Hydro Track. He lives with his parents in the Calvert County town of Owings, driving to Kennedy Krieger and to classes at the University of Maryland in a screaming yellow, lift equipped Chevy truck he nicknamed "Big Cheddar." Beckman wears his hair in a boyish buzz cut, and there is a mischievous Huck Finn quality about him that therapists love. As Rummerfield notes, Beckman is also "a bundle of energy, full of determination."
When Kennedy Krieger opened its spinal cord injury center 2 ½ years ago, Beckman, now 24, was one of the first quadriplegics through the door. The center specializes in children but serves adults in search of intensive outpatient therapy. Back then, Beckman could barely roll over on an exercise mat. But here he is, finishing a five minute workout in the Hydro Track.
"I'm like jelly right now," an exhausted Beckman sputters.
"You're looking good!" exclaims Rummerfield, patting him on the back.
In the hallway outside is another patient, Elliott Farmer, a paraplegic only beginning his journey of recovery. He and Rummerfield talk almost daily. Farmer, who's 19, fractured his neck in a 2006 car crash and lost the use of his legs. He'd just finished his freshman year at the University of Missouri. A few days after the accident, his father read an article in the St. Louis Post Dispatch about Rummerfield preparing for a grueling endurance race: seven days of running 150 miles across China's Gobi Desert. That inspired Bud Farmer to bring his son to Kennedy Krieger. He and wife Sandy fly with Elliott to Baltimore every few months from their home in Jefferson City, Mo., for two weeks of physical therapy.
According to the National Institute of Neurological Disorders and Stroke, some 250,000 Americans have a debilitating spinal cord injury, and 12,000 new cases are added each year. A spinal injury essentially takes a hammer to the body's delicate circuitry. Messages sent through the central nervous system get garbled or misdelivered. The results can cause terrible discomfort. Farmer dreads taking showers. Every drop of water hitting him seems to have a jagged edge. The bolts of searing neuropathic pain he sometimes feels are worse, like being struck by lightning.
He recently was fitted with a fiberglass body brace. It extends from his ankles to his sternum, with hinges at the knees and hips. Farmer, in effect, is a crustacean, reliant on this external skeleton to keep him upright whenever he gets out of his wheelchair. He's learning to ambulate with crutches, navigating the corridor under the guidance of therapist Mike Lagonera.
They must pause periodically. Farmer's internal gyroscope is still out of whack. His ears sometimes feel as if they're filling with water, a dizzying sensation he refers to as "hearing the fan."
"It's because your blood pressure's down so low," Rummerfield tells him. "Whenever you first stand up, it shocks the system."
Rummerfield has been through this body brace phase, adding that it took him eight months of rehabilitation before he could stand without getting queasy. Normal increments of time don't apply to spinal cord therapy. Extraordinary patience is required. "You have to reeducate the body. The process can wear you down," says Rummerfield. "You've got to look at yourself like you're training for the Olympics."
Every day Farmer tells himself, "I know I'm gonna walk." He believes it because Rummerfield walks. For now, however, he would be content to have his crutches carry him as far as the soda machine down the hall, a distance of roughly 50 feet.
Farmer inches along, step by labored step. Lagonera follows close behind. He's wearing a blue Kennedy Krieger staff polo shirt. The back is emblazoned with a one word motto printed in bright, white letters in about a dozen languages.
Esperanca . . . Esper . . . Espoir . . . Hoop . . .
* * *
RUMMERFIELD NEVER MADE IT THROUGH THE GOBI. A freak rainstorm turned the desert floor into leg sucking goo; the struggle was compounded by 60 mph sandstorms. After finishing the 27 mile opening stage, Rummerfield dropped out with what X rays later revealed were fractured ankles. He'd thought they were just bad sprains.
Some of Rummerfield's stoicism and iron determination comes from his childhood. He is a native Californian. His birth name: Duke Stover, which sounds like the hero of a 1920s young adult novel. It was an abusive household. Duke's arm was broken by his father when he was a toddler. All five Stover children wound up in an orphanage in Boise, Idaho. They were placed with separate families and lost touch.
Duke was adopted at age 7 and renamed Patrick by Tom Rummerfield, a childless, gimpy legged, middle age divorcÂ¿ who lived outside the small mining town of Kellogg, about a half hour from Coeur d'Alene in Idaho's northern panhandle. Most Kellogg men worked, and sometimes died, in the nearby lead and silver mines. The town was full of rugged folk who knew hard times. Tom Rummerfield had his adopted son actually sign a contract stating they would care for each other till death. He was a proud, compassionate, resourceful, somewhat eccentric coot a onetime amateur boxer turned miner turned air conditioning repairman who wrote poetry and hunted elk.
The elder Rummerfield loved baseball and believed his boy was destined to become a big league pitcher. Every day, he had Pat throw dozens of balls through a tire slung from a backyard tree and jump rope to build his legs. He regularly timed Pat in grade school as he ran a two mile stretch of hills behind their house.
"My dad used to tell me," Rummerfield recalls, "that the will to win means nothing without the will to work."
Childhood buddy Mike Masters remembers Pat Rummerfield as "a scrapper." Wouldn't back down from anything. Loved challenges and thrived on competition. Six feet tall, Rummerfield could dunk a basketball and started at forward for his high school team. He was an adept trash talker on the court, so accomplished at it that an opposing coach once chased him into the stands for running his mouth one too many times during a game.
The Rummerfields belonged to the conservative Church of the Nazarene. Pat considered himself a devout but "rebellious Christian." Speed was his temptation. NASCAR drivers, not baseball players, became his idols. After graduation, Rummerfield followed his friends into the mines, but not with the intent of staying put. He planned to save some money, then go race cars in Europe.
That dream died on September 20, 1974, with a squeal of tires and a spray of splintered glass.
Rummerfield had been celebrating his 21st birthday the good ol' boy way: by binge drinking with best friend Kevin Berg. Rummerfield says they downed two cases of beer and three bottles of apple wine. Berg then capped off their evening by losing control of Rummerfield's 1964 Corvette at 135 mph.
The driver stumbled away from the wreck with a chipped tooth. Rummerfield was flung from the passenger's seat into the rear storage compartment. He looked as if he'd been run through a wood chipper: scalp nearly shorn off, face and head in need of 150 stitches, right eyeball popped from its socket, one clavicle crushed, both knees hyperextended and, worst of all, four neck vertebrae fractured.
He was transported to Spokane, Wash., for emergency surgery. Tom Rummerfield was given a bleak prognosis for his son: Don't expect him to last more than 72 hours. Pat, drifting in and out of consciousness, got drenched with the tears streaming off his father's face. "I told my dad, 'I don't feel like I'm gonna die.' He said, 'Well, they've got you pretty medicated.'"
Flat on his back, as stiff as cement, Pat requested that an X ray of his neck be pinned above his bed where he could see it. He passed time praying, over and over: Dear God, give me a second chance to live and walk again . . .
* * *
A PAPYRUS WRITTEN ABOUT 2600 B.C. by the doctor priest poet Imhotep (who somehow also found time to design Egypt's first pyramid) contains what's purported to be the earliest diagnosis of spinal cord injury. "An ailment not to be treated," Imhotep grimly concluded.
Through the centuries, spinal injuries remained among the most hopeless of conditions. Lord Nelson died within hours of suffering spinal damage at the battle of Trafalgar in 1805. President James Garfield lasted about 2 ½ months after an assassin's bullet clipped his spine in 1881. During Europe's Balkan wars of 1912 1913, the mortality rate for soldiers with spinal cord injuries was 95 percent, according to the textbook Spinal Cord Medicine: Principles and Practice. A breakthrough didn't come until World War II, when the advent of better antibiotics for addressing complications such as pneumonia, urinary tract infections and bedsores substantially reduced the risk of death.
The jelly like spinal cord is only about a foot and a half long. It's the flexible cable that carries the body's sensory data, threading through the center of the 33 protective, bony vertebrae (picture a stack of super size LifeSavers) that comprise the spinal column. Severing of the cord is rare. Most injuries involve high impact trauma to several vertebrae, as in Christopher Reeve getting thrown from a horse and landing full force on his head. That kind of severe compression, in turn, bruises and pinches the soft "gray matter" inside the spinal cord: axons (thin, tendril extensions of nerve cells), myelin (the insulating sheath that covers axons like the rubber coating on an electrical wire), blood vessels, neurons and more. Residual swelling causes as much trouble as the initial blow. It was only in the 1990s that steroid based methylprednisolone was found to mitigate gray matter contusions, providing the drug is administered promptly.
Tragedy strikes in surprisingly benign ways. People have suffered spinal damage rolling out of a hammock, bonking their head on the wall of a swimming pool while doing laps or slipping on the kitchen floor. Rummerfield was a more prototypical patient: About 80 percent are male; more than half get hurt between the ages of 16 and 30; and car crashes and diving accidents are the most common culprits.
As Rummerfield lay on his back praying in that Spokane hospital, 72 hours crawled by. Then a week. Then two. He was still alive, though doctors told him he'd never walk again. Prevailing dogma held that movement either returned quickly or not at all. Time wasn't an ally. In 1974, the longevity of most quadriplegics could still be measured in months, not years.
What now? What to do with the rest of his truncated life?
An advantage of being a union miner was excellent health benefits. Rummerfield had his choice of after care facilities. At the time, Sharp Rehabilitation Services in San Diego had one of the country's few programs that taught quads how to use breath controlled electric wheelchairs. Rummerfield transferred there.
By his own account, he proved to be "a terrible patient." Always wanting to do extra physical therapy. Always wondering why therapists couldn't be made available to him round the clock. Six and a half weeks after Rummerfield arrived at Sharp, therapists eased him into bed at the end of a wheelchair training session, and the impossible happened. He wiggled his left big toe. Ever so slightly. The therapists had never seen a quad do that. Involuntary twitching, they said.
No, said Rummerfield. He could move the toe at will.
Minutes later, he started shaking and felt as if he'd been set afire. His entire body went into such violent spasms that he had to be sedated. Something inside him was stirring. From then on, he constantly flexed that big toe, his one working appendage. Other muscles gradually awakened. After seven months, he could stand with help for a few seconds, still unable to use his arms and hands. Not ramrod straight, but undeniably vertical.
Nine months into rehab, his therapists taped a one gram weight to Rummerfield's left palm. On the third day of trying to lift it, he did an arm curl. Everyone in the room nurses, therapists, his fellow spinal cord patients erupted in cheers. Rummerfield decided he was well enough to go home to Idaho. He returned with a supply of rubber catheters that his father would have to insert into his bladder four or five times a day, and a manual wheelchair he couldn't push by himself (an electric model wouldn't fit through the door of the house). Pat moved back into his basement bedroom. All those muscles developed in the gym and in the mines were gone. He had melted from 205 pounds to 130.
Tom Rummerfield took one look at his shriveled son and said, "We got a lot of work to do."
* * *
THE OWNER OF THE MINE WHERE RUMMERFIELD WORKED generously gave him what amounted to a do nothing desk job. Meanwhile, Rummerfield developed a homemade therapy routine. Why? Boredom. Habit. Athletic instinct. Passive acceptance of his fate didn't come naturally. "I can never remember not having a goal," he says. "It's just my history: the orphanage, my dad. It all plays together."
He originally just wanted more flexibility and range of motion. He and his father would sit watching baseball and boxing on television, and Tom Rummerfield would manipulate his son's joints and massage his knotted muscles. Tom fashioned a wristlet with small eye hooks on top. Fastening an elastic band to those hooks and to the tips of Pat's fingers allowed Pat to do hand exercises with resistance.
One afternoon, Kevin Berg, Pat's drinking and driving partner, who would soon die in an off road vehicle accident, took him to a garage sale. For $5, Rummerfield bought a throwaway stationary bicycle with motorized pedals and motorized handlebars. It was a lazybones weight loss gimmick, a product hawked on late night TV infomercials.
Rummerfield thought the contraption might be useful. He took it home and had Berg saw off the seat post. As often as possible, he'd get his father or a friend to wheel him up to the bike and duct tape his feet to the pedals. He'd "ride" for an hour, lots longer if his helper went to run an errand and forgot to come back and shut the motor off. Years later, Rummerfield would discover that a super sophisticated, computerized exercise bicycle is a cornerstone of John McDonald's activity based therapy.
Rummerfield's flexibility and range of motion did improve. Likewise his endurance and balance. He stayed glued to that electric bicycle, rebuilding enough muscle to occasionally abandon his wheelchair in favor of a four legged metal walker. Three plus years of do it yourself therapy, and Rummerfield was taking baby steps. Progress was so halting, so slow to unfold, that the wonder of it escaped him. Eventually, he and his father began trudging up the hills he'd effortlessly run as a boy.
"Faster," Tom Rummerfield would say.
By 1980, Pat Rummerfield's hospital prayers had been answered. He was walking full time once more. No style points, though: He carried an invisible piano on his back, bent almost perpendicular to the ground by the weight of gravity. Tucked away in the mountains of Idaho, tended to by a country doctor, he muddled along in obscurity.
Over time, his core strength rebounded. He uncoiled and stood upright. Rummerfield got frisky and tried skiing, badly fracturing his right leg simply by getting off the chair lift. Quadriplegia induced osteoporosis had rendered him as fragile as glassware.
Thomas Brodie, now a civilian physician at Nellis Air Force Base in Nevada, had a medical practice in Kellogg. He attended to Rummerfield's leg, amazed that he was dealing with a skiing quadriplegic. "I've rehabbed lots and lots of athletes with a variety of work ethics," Brodie says. "There is only one Pat."
Yet he doesn't believe this is a one in a million story. There will be other Rummerfields, Brodie says, once the code to curing quadriplegia gets cracked. "We don't have a lot of keys to unlock that puzzle yet. But he's a key."
It took awhile, but the leg mended, and Rummerfield resumed his pursuit of normalcy. In 1982, he got married. He recovered bladder control, ultimately feeling vigorous enough to rejoin the ranks of his grimy brother miners underground. One goal eluded him, though: running. If he picked up the pace of his walking, he'd always fall. He accumulated so many bumps and cuts that he started wearing elbow and knee pads
His first wife, Connie, didn't get it. He remembers her asking: "Why waste your time? Why are you so driven?"
Words failed him. "If people could go to the hospital and . . . be paralyzed for 48 hours," says Rummerfield, "they'd understand."
Even Tom Rummerfield wondered if running had become a foolish obsession. "Maybe it's not in the cards," he said. "You're always bleeding."
Pat was too embarrassed to be seen at the high school track. The mountains afforded more privacy. Befitting someone of such mule headed stubbornness, his favorite spot to run and fall was an isolated incline known as Jackass Ski Bowl Road.
* * *
TOM RUMMERFIELD NEVER GOT TO SEE HIS SON BECOME A BORN AGAIN ATHLETE. He contracted terminal bone cancer and on a June morning in 1990 reached for a gun. Pat found the body, later spreading his father's ashes in a valley thick with deer and elk. Best to leave the mines and Kellogg behind, he figured. A Wyoming coal company needed a safety coordinator. He, his wife and their two young daughters resettled in Sheridan.
Early the following spring, Rummerfield says, "everything just suddenly clicked." It was a Saturday in 1991. Rummerfield went for a slow jog with his oldest daughter, Breanna, then age 6. Traces of snow dotted the sidewalks. He was so focused on not slipping that it took a few minutes to sink in: no wipeouts, no skinned knees. He had run an entire mile without falling. "I laughed a lot," he says, "and hugged Breanna."
A month later, Rummerfield entered a three mile fun run. A month after that, a mini triathlon, and quickly two more. Terry Beartusk, the director of a substance abuse clinic in Sheridan, planted the idea in Rummerfield's head to raise money for charity by competing in sporting events. "I think coming back from that initial injury when they told him he would never walk again, he didn't see obstacles as being impossible," says Beartusk. "He already conquered the biggest obstacle. Everything else that comes along is just an interesting challenge."
A marketing rep at Nautilus, the maker of the eponymous fitness equipment, heard about Rummerfield and offered to sponsor him if he wanted to tackle the famous Hawaii Ironman Triathlon. Absolutely. He flew to Quincy, Mass., to see Wayne Westcott, fitness director at South Shore YMCA and a former college track coach. Westcott had a reputation for training disabled athletes.
Most people are a blend of fast twitch and slow twitch muscle fibers; the former conducive to speed, the latter to endurance. Westcott conducted a series of tests that showed Rummerfield is an anomaly. In the aftermath of his injury, his fibers seem to have polarized: He has slow twitch muscles below the waist, fast twitch above. Westcott had never encountered that. In addition, Rummerfield's attitude was beyond positive. He could picture himself finishing the Ironman, running the race inside his head as if he were watching a film.
"He was convinced he could do it, which convinced me he could do it," says Westcott, who designed a conditioning regimen. "My major concern was that if he ran into trouble, would he know when to stop?"
In October 1992, Rummerfield lined up with some 1,450 participants at the start of the Ironman triathlon on Hawaii's Big Island. Nobody was betting on him to win. He chugged along for 16 hours, 18 minutes, 54 seconds; good for 1,291st place. A turtle ish time, but, then, no other quadriplegic is known to have ever done a 2.4 mile swim, 112 mile bike ride and 26.2 mile run in one lifetime, let alone one day.
His family was there. Breanna escorted him across the finish line. "He's definitely taught my sister and I the meaning of perseverance," says Breanna, now 22, who characterizes her father as simultaneously laid back and extremely driven.
The Ironman feat earned Rummerfield some notoriety in athletic, if not medical, circles. In 1996, he was invited to speak at a symposium held in conjunction with the Atlanta Summer Olympics. By then, he had moved to Missouri to do safety consulting work for Exxon Corp. A doctor from Washington University Hospital in St. Louis attended that Atlanta talk and asked Rummerfield to join an injury prevention unit that the hospital was launching.
A few months later, neurologist McDonald joined the hospital and affiliated medical school. He began studying the effects of electrical stimulation and physical activity on spinal cord injuries. A colleague suggested that he meet Rummerfield, the Ironman quadriplegic. McDonald invited him to his laboratory. Rummerfield's eyes widened as he watched rats with surgically severed spinal cords scampering around as if nothing were wrong with them. They'd received embryonic stem cell implants. Other crippled rats would soon be getting electric stimulation treatments.
McDonald, in turn, was fascinated to hear details of Rummerfield's home cooked physical therapy and garage sale bicycle. Here stood the embodiment of his spine regeneration hypotheses, a human lab rat. Why, he wondered, hadn't any researchers latched onto him?
"It's kind of like you walk across gold," says McDonald, "and other people have walked down that path before, but never saw the gold."
* * *
MCDONALD HIRED RUMMERFIELD AS A KIND OF POINT MAN FOR PATIENT RELATIONS. When McDonald was lured to Baltimore in late 2004 to head Kennedy Krieger's new spinal cord center, he brought Rummerfield along.
By then, Rummerfield had gotten divorced and remarried. He opted to become a long distance commuter, working out of his home in St. Louis and spending one week a month at Kennedy Krieger. Some of his responsibilities involve fundraising. Last year, he helped pull in about $1 million, including $15,000 in donations from his aborted Gobi Desert run. He just landed a seven figure grant from the Department of Defense to underwrite activity based therapy research, which could benefit wounded veterans. A spokesman for the Paralyzed Veterans of America says that, so far, soldiers in Iraq and Afghanistan have suffered "in the neighborhood of 100 spinal cord injuries."
McDonald believes that a genuine cure for spinal cord injury likely will involve intervention in the form of stem cell transplants or who knows? maybe subcutaneous microchips. But physical therapy is still going to play a pivotal role. For one thing, researchers have found that a greater number of nerve connections remain intact across wound sites than was previously presumed. Exercise promotes their rejuvenation.
The activity based therapy McDonald favors makes use of standard apparatus such as parallel bars and balance boards. But the key component is an $18,000, hi tech FES (functional electrical stimulation) stationary bike. He contends it jump starts the healing process. Adhesive patch electrodes are placed on the calves, thighs and hamstrings of a quad or paraplegic. A current passes through the patches and causes those muscles to reflexively fire in sequence. Turn the juice up high enough, and paralyzed legs magically turn pedals and get an aerobic workout. That flow of electricity has the added benefit of triggering microrepairs within the nervous system, McDonald says. Ideally, patients recoup enough function to pedal under their own power and, perhaps, attempt to walk.
Electrical stimulation could be incorporated into treating everything from stroke to the frailties of old age, McDonald adds, potentially saving billions of dollars in health care costs. He foresees a network of regional rehab centers, each stocked with FES bikes, each using Kennedy Krieger's therapies as a template.
The knock on McDonald, however, is that he relies so heavily on anecdotal evidence. Results of the clinical trials he conducted in St. Louis have not appeared in print. Indeed, he's still writing the research paper, which, he contends, will bolster his claims for activity based therapy. But publication may not be enough to sway skeptics. Some of them rolled their eyes during McDonald's appearance at a spinal cord conference in Washington last year. McDonald gave a synopsis of his work at Kennedy Krieger as part of a panel discussion of cutting edge research. When the panel moderator announced time was running short, McDonald abandoned his PowerPoint presentation and kicking into impromptu show and tell mode summoned Rummerfield to the front of the room.
"This is a pragmatic cure," McDonald declared. "This is all we need to accomplish. His sensory score is 12 out of 204. But he lives a normal life!"
Wise Young, founding director of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University in New Jersey, was at the conference and is among the most respected voices in the spinal cord injury community. He credits McDonald with being the most aggressive champion of activity based therapy. "Five years ago, it was controversial," says Young. "It's more accepted [now], but it's by no means embraced. The main thing is there's no hard evidence, no double blind study."
Randal Betz, chief of staff at Shriners Hospitals for Children in Philadelphia, is doing his own clinical test of activity based therapy and electrical stimulation. McDonald helped develop the protocols. "John's a great friend, but he's really promoting this [activity based therapy] as the end all. He says that with no scientific backup," Betz says. "If a patient moves a leg, there's no data to support that wouldn't have happened anyway."
In the absence of unassailable proof, McDonald's most compelling argument is shining star patients such as Rummerfield and Christopher Reeve.
In 1995, Reeve broke his neck during an equestrian competition. The fractures occurred near the base of the brain, a worst case scenario fall. After four years of standard, passive rehabilitation, Reeve could move only his head, breathe only on a ventilator and endured frequent hospitalizations. A sickly, forlorn Superman flew to St. Louis for a consultation with McDonald, who thought he might not survive another year. "He was definitely on the bubble."
To bolster Reeve's spirits, McDonald introduced him to Rummerfield and showed the actor some file MRIs of Rummerfield's spine. Reeve's response was to turn toward Rummerfield and do a tweak on that famous tagline from Michael Jordan's Gatorade campaign. "I wanna be like . . . Pat," he said.
Reeve bought an FES bike, then added aqua therapy to the mix, working with McDonald and his staff in secrecy for three years. In 2004, he contracted a blood infection from a bedsore, the bane of every quadriplegic, and died without fulfilling his much publicized pledge to walk again. Was it a pipe dream? A doomed but noble quest? Not in McDonald's opinion. He recites the statistics from memory. Upon switching to activity based therapy, Reeve recovered 70 percent of his sensitivity to pain and touch, 70 percent of the muscle mass in his legs, 20 percent of his motor skills. Use of antibiotics decreased tenfold. He was able to breathe for a few hours at a time without his ventilator.
"Chris shattered the concept that all recovery occurs in the first year. Chris was one of the first to say, 'We're going after a cure.'"
Reeve also knew the value of publicity, though he got more than he bargained for when he appeared in a commercial for a brokerage firm that aired during the 2000 Super Bowl. In the spot, Reeve rose from his wheelchair and, thanks to special effects magic, strode boldly across the TV screen like his old, virile self. Syndicated columnist Charles Krauthammer, who is a paraplegic from a diving injury suffered in his 20s, labeled the ad "disgracefully misleading."
The urge to walk again can be powerful, even all consuming. Psychologically, it represents a crossing of the borderline that separates "normal" from "disabled." But is that simplistic thinking? What about those in wheelchairs who lead perfectly productive lives?
"The challenge is balancing the message. It isn't necessarily all about walking," says Marcie Roth, executive director and chief operating officer of the National Spinal Cord Injury Association in Bethesda. "I truly understand the desire to push the envelope . . . [But] we put a very high premium on walking. I would suggest it's an unnatural premium."
The staff at Kennedy Krieger appreciates that quandary. Job, school and family obligations can take precedence over walking for those who are paralyzed. The demands of activity based therapy may not seem worth the uncertain rewards. But patients who feel that way don't come to the spinal center. It caters to envelope pushers, to the next generation Rummerfields.
* * *
THERE'S A BASEBALL EMBEDDED IN THE WALL OF A HOUSE IN SOUTHERN MARYLAND. It's an odd sight, reminiscent of those stray bullets found in the trunks of trees near Civil War battlefields. Robby Beckman was a utility player pitcher for the Maryland Orioles, an elite teenage travel team that won the National Amateur Baseball Federation champion ship in 2000. His father, Bob Beckman, was the team's hitting instructor. He rigged a net in Robby's bedroom for soft toss batting practice. The kid once shanked a hard line drive that got caught by the drywall. Bob left it there, forever frozen in midflight, now a reminder of a life interrupted.
Beckman and a handful of friends shared a house in Ocean City during the summer of 2003. On a hot afternoon, a few of them were at a bayside bar and, on a whim, leapt off the dock outside. Robby picked the wrong, shallow side of the dock to dive off. He woke up 13 days later. After spinal fusion surgery, he was moved to National Rehabilitation Hospital in Washington, later enrolling at Kennedy Krieger.
From the beginning, he heard that "you'll never walk again" refrain, but was undaunted. "I was a gym rat," Beckman says. "I took that as a challenge."
Last year, he began playing wheelchair rugby, which is sort of a demolition derby for the disabled. He hooked up with a Fairfax County team: the Capitol Punishers. They practice once a week, but Beckman also has a key to his old high school gymnasium. Early on a Saturday, he rolls onto the deserted basketball court and does solo wheelchair sprints, then slaloms through a line of red plastic cones.
"Everyone tells me to watch out for depression. I haven't seen it yet," says Molly Beckman, who accompanied her son to the gym. "I haven't heard a negative word come out of his mouth."
The will to win means nothing without the will to work.
That's something Beckman and Rummerfield have in common, along with working class backgrounds and a love of fast cars. Beckman's dad hauls Coors beer for a living. His mother manages the dairy department at a Superfresh. When he got hurt, there wasn't a cushion of cash to soften the blow. The Moose Lodge donated a wheelchair and held raffles. Macky's Bayside Bar & Grill in Ocean City, where Beckman was working that summer, hosted a fundraiser to pay for Big Cheddar. Neighbors built plywood ramps for the Beckmans' house.
"He's getting stronger, more independent," says Molly. He uses crutches on occasion and can cut his food with a knife. Still doesn't clean his room, though. "Robby, you're getting faster!" his mother hollers, then lowers her voice and whispers: "He was hard on himself as a kid. He's hardheaded."
But not hard of hearing. "You can't be too hard on yourself," Robby bellows from across the court, his shirt turning dark with sweat. "If you're not hard on yourself, you're a pushover."
Molly gazes around the gym. Brings back memories, she says. A large banner hangs from the far wall. It trumpets words of wisdom that Northern High School students are encouraged to carry with them into the real world: SUCCESS IS A CHOICE.
* * *
THERE'S NOTHING LIKE THE ADRENALINE RUSH of being behind the wheel at Dover International Speedway, a tight, one mile oval with 24 degree banked turns. Pulling three Gs on those curves, signs and logos whipping by in a hallucinogenic blur, as if you're on a corporate sponsored acid trip. WO O O O O OSHHHHHH!!! Budweiser . . . Bank of America . . . Sunoco . . . Crown Royal . . . Goodyear . . .
Rummerfield sometimes brings patients here for a little informal speed therapy. Today he has Beckman in tow. Rummerfield is friends with the owners of Monster Racing, a fantasy driving school that uses the track in off hours. They lend him cars so he can take a few freebie thrill laps between the paying customer runs. Two members of the Monster Racing pit crew wrap Beckman in a blanket taco style, lifting him out of his wheelchair and sliding him through the open passenger side window of a red Chevy Monte Carlo. Not much different than trying to cram a 150 pound letter through a mail slot.
"Don't worry if you drop me on the ground," Beckman says cheerily.
They finally get him buckled in. Rummerfield squeezes into the driver's seat, guns the engine and peels out. When he first took up racing as a quadriplegic, his cars often fishtailed and overshot turns because he wasn't gentle on the brakes. Takes a while to develop the right touch, especially if you have numb feet. Round and round that red Chevy goes, whining like a mad hornet, riding high on those punch bowl steep turns. It took Rummerfield and Beckman two hours to drive to Delaware, and they get to do just four laps on the track, cruising at a gentlemanly 110 mph. Unofficial lapsed time: two minutes. Based on Beckman's reaction, one might think they'd just burned rubber cross country.
"Hell, yeah!" he whoops when they pull into the pits. "That was frickin' awesome! They need to get some hand controls on this bad boy!"
"There's nothin' like going into the curves and feeling your car bumping up and down," says Rummerfield.
"Coming out of turn two was sweet 'cause you can open it up," Beckman says. "There's nothing like speed, man . . . Mr. Pat, as much as you do for me, what can I do for you?"
Mr. Pat is fast with his answer: "Just get through school."
* * *
A WEEK BEFORE CHRISTMAS, BECKMAN LEFT A MESSAGE ON RUMMERFIELD'S CELLPHONE, telling him he'd earned his business degree from the University of Maryland. He also has graduated from Kennedy Krieger, having landed a full time job as a contract specialist at Patuxent River Naval Air Station. He does stomach crunches and leg exercises at home to keep fit. Beckman still plays wheelchair rugby, but vows to walk onto a pitcher's mound again someday.
"That's not a dream," he says. "It's a goal."
Rummerfield's latest goal is to raise money for spinal cord research by doing marathons on all seven continents within three years. He'll start in New York City in November. By the time Beckman uncorks his fantasy fastball, however, Rummerfield's running days could be over. At 54, his peculiar biological clock is ticking. A quadriplegic's body ages faster than normal. No matter how active Rummerfield stays, his legs are destined to give out.
"Oftentimes, it happens very quick," says McDonald. "You wonder how somebody that positive will react. He very well knows that's the future."
Yes, he knows what the future holds. In fact, Pat Rummerfield already has a fallback plan.
"When that day comes," he says, "I'll try to be the fastest guy in a wheelchair."