Michael McCarthy is a highrise climber, martial arts champion, sled hockey star and pal of the governator. Not bad for a ten-year-old double amputee.
by David Lanzafame
His hand gripping his crutch, ten-year-old Michael McCarthy gazes up into the stairwell of Chicago’s Aon skyscraper and its 1,628 steps to the top. Preparing to take his first step, Michael brushes back his blond hair. In his mind’s eye sees the finish line: his finish line. His legs are firm, balanced, still. But they are not flesh. Atop Michael’s sneakers are carbon fiber prosthetics.
Now, he lifts his left leg and, carefully, places it on the first stair, heel-first. He smiles.
Just five years earlier, he had to walk on his hands to get around his home. And he was good at it, too. He could push himself up stairs, pull himself into his bed or a chair, and could keep up with his brother, Tommy. He could count on his hands. He never dreamed that one day he could rely on his legs, too.
On this January morning, he can only hope. For it’s Michael’s four-year-old legs that are his only chance to achieve his goal of making 500 steps.
He looks over to Jeff Kohn, his teacher and mentor. Jeff Kohn will be his spotter today. As it happens, Michael is wearing the red, white and blue nylon team jacket for the North Shore Martial Arts Dojo, given to him by Kohn. It’s the same jacket Michael wore last year in California, where he met Arnold Schwarzenegger, who wanted to shake his hand.
Also with Michael is his mother, Julie McCarthy. She will follow the pair with water,
just in case. Days earlier, she had told Michael about the Aon Center’s 10th annual Step-Up for Kids Challenge. The organizers merely wanted his presence, but for Michael, that wasn’t good enough. “I want to do this,” says Michael – Climb.
Now, grabbing the banister, the boy with the carbon fiber legs begins to do just that.
His quest to climb the Aon Tower was only beginning. But Michael’s journey to that day began much earlier, back to the North Shore Dojo in Glenview, IL. He was five years old his first day at the martial arts school. The walls were covered with trophies and medals, earned from numerous tournaments and exhibitions by North Shore’s head teacher, Jeff Kohn.
A tall man with wide shoulders and grayish-black hair, Jeff had wrinkles around his eyes and mouth, faint lines formed from a lifetime of smiling. His voice rasps with age, but his biceps bulge under his karate uniform.
For 25 years, Jeff taught special needs children. His program taught balance, coordination and social skills to all sorts who are handicapped. But even he was taken aback when he met Michael.
Born in the southern region of Russia and adopted at age 4, Jeff learned, Michael suffered from Proximal Femoral Focal Deficiency (PFFD). A rare birth defect, PFFD deforms the pelvis, leaves 50 to 80 percent of the thighbone missing, and causes unstable knee joints, missing kneecaps and foot malformations. The cause comes from outside toxins or viral infections.
The extent of PFFD varies with each patient, but the treatment is the same: amputation with artificial limb replacement. Michael’s case was handled at the Children’s Memorial Hospital of Chicago where he was fitted with two above-the-knee prostheses made of carbon fiber.
Michael was already in rehabilitation. His presence at North Shore Dojo was for a sense of activity. “Tommy, his brother, was already in baseball,” says Julie. “Michael wanted to do something, he needed to do something.”
But Michael kept his head down. His eyes barely glanced at Jeff, and he barely answered when spoken to. “He’s just afraid of trying things,” says Jeff. He would start with Michael like he would with any student: with small steps.
Those small steps would be between two taut lines of rope stretched 20 feet across the dojo. Two ends wrapped around a support beam and two were tied to a ballet bar. Afternoon class was over. The gym was empty, quiet. Jeff convinced Michael to put down his crutches and try to walk using only these makeshift parallel bars. The exercise tested balance, but it also forced Michael to finally become acquainted to his new limbs.
Michael barely shuffled his feet. His white-knuckled hands gripped the ropes. He wanted to move, but he didn’t want to fall. Jeff encouraged, but didn’t rush him. Michael’s feet started to move. Slowly at first, then a little further apart, a little bit more, a bit more, until Michael took a step.
In time, Michael had enough coordination and balance to take larger steps, to walk a little faster. Eventually, Michael was balanced enough to walk without touching the ropes.
Then Michael fell. He didn’t shift his weight in time and tripped over his feet. He slammed against the ground, his head bouncing off the mat.
Jeff rushed over, but Michael waved him off. Then he reached up defiantly and grabbed the rope again. “I’m okay,” he said, pulling himself high enough to move his feet back into position before letting the rope go again. “I’m okay.”
With each passing month, Jeff saw Michael improve physically. Socially, Michael also flourished, making friends among his classmates. In time, Jeff offered to be one of Michael’s tutors. Every Thursday was study day for reviewing math, English and whatever else he learned in school. Jeff also helped Michael improve physically. Soon, Michael could toss a medicine ball and his 10 chin-ups were tops in his class.
In the Aon building, at 100 steps, Michael finds his rhythm. He tugs on the banister, and gains the next step, and the next, and the next. Jeff follows close behind. He promised $100 to Michael if he climbed those 500 steps. The pledge had the desired effect – strengthening the resolve of a boy who had never seen a $100 bill in his life.
Now, a group of firefighters marched by, single file, fully turned out in heavy helmets, coats and oxygen tanks. They tromp up the stairs past Micheal, but not before offering a word of encouragement or a quick thumbs up. They’re a team, just like Michael and Jeff.
Michael’s climb seemed extraordinary to those who didn’t know him. To those who did, it was no surprise. You merely need to watch him in the East Ice Arena in Bensenville Illinois to know. There, Michael glides with his friends across the ice. Every Wednesday evening the rink is Michael’s turf, his team, his gang and his rivals, fresh meat. He’s defense on the Hornets Youth Sled Hockey Team.
The sport mirrors hockey, but replaces skates with recumbent sleds and breaks the stick into a pair with picks to grab the ice. Michael learned about sled hockey from Brian Ruhe. A double leg amputee from a car crash, Ruhe went to the same Chicago rehab center as Michael. Their meeting was part chance and part miracle, says Julie. Ruhe held a gold medal in sled hockey from the 2002 Salt Lake City Paralympics.
Inspired by Ruhe, Michael joined the Hornets. In December of 2005, they attended the third annual Disabled Hockey Tournament. With his teammates, Michael defended his team, his rink and his hometown.
“You’re gonna wish you were never born,” says Michael, staring down an 18-year-old.
It’s the third game out of five against the Michigan Sled Dogs. Michael dons his face and body guards as he takes his defense position. The mix of age puts Michael’s in the path of teenage opponents eight years his senior and twice his size.
“He’s like a little gnat out there,” says Julie.
Michael works hard at bugging his enemies. He digs his picks and pulls himself like a skier across the ice. He rams into an intruder, derailing their chance to score and giving his offense a change of their own.
Soon another intruder, another enemy, sneaks into his territory; batting the puck and bee-lining toward his goalie. Michael barrels down the ice. He bashes, head-on into the side of their sled. Michael whirls from the impact. The enemy is off his sled and on his back. A whistle blows. The ref points to Michael. Roughing, penalty box, again.
Michael slides into the sectioned off rink, his head barely at shoulder level with the other ejected, overzealous players. He’s used to hanging back here, like he’s used to the whistle blows for coming in a little too fast and hitting a little too hard.
“I like knocking into people,” says Michael, his tenacity found in the nicks and scratches on his sled.
Despite Michael’s absence, his help put the Hornets over on the Sled Dogs. It’s their only win in the tournament, but it’s a win against longtime rivals.
“He was in the zone out there,” says Julie.
“The zone.” That intense focus felt by athletes. Julie saw it in Michael’s face when he took to the rink. There’s a glare in his eyes, a seriousness about his face. It’s a zone of pure determination. “He’s like another person sometimes,” says Julie.
He may be determined, but he’s still a 10-year-old boy. That can be found in a picture on the front page sports section of a December 2006 issue of Glenview’s Daily Herald. In the picture, Michael leans back in his sled, arms outstretched, eyes closed, his face toward the sky, and a smile on his face.
In the Aon building, Michael pulls himself higher. Following from a floor below, Julie realizes that 13 flights of stairs lie behind them without a slip or stumble.
“He must be in the zone,” she says.
Michael continues to keep his balance as he moves. It’s something he’s done before.
It was March 2, 2005, and California’s Greater Columbus Convention Center was playing host to the “Arnold Classic,” a sports festival celebrating fitness and martial arts named after its creator, Governor Arnold Schwarzenegger. Among the professional athletes and martial artists, Michael represented North Shore Dojo as a member of Jeff’s small team. It was his turn to compete in the special division with other handicapped students in the exhibition category of weapons.
Thousands surrounded the mat. They snapped pictures and cheered the last performer while the judges sat close by, making notes. Michael put down his crutches and took up his weapon: the Bo staff, a wooden pole four feet high. Michael headed toward the center mat using the Bo as a walking stick, a crutch.
He reached the center. Keeping his legs spaced for balance, Michael began his attack on his imaginary opponent.
His Bo snapped upwards, a crack to the chin.
He twirled the Bo from side to side. Blocking attacks before it he swung down, full force, to pound the ground, a club to the head or shoulder.
Cameras flashed randomly while the crowd started to cheer.
The Bo planted and rooted itself as Michael pivoted, facing another would-be attacker. He thrust forward, the Bo spearing them in the chest. He thrust backward and speared the stomach of a hidden opponent.
Another plant and pivot and he whirled the Bo like a baton. The blurred stick made phantom circles as he defended and parried a supposed flurry of attacks.
Michael turned toward the judges and with the Bo raised and his feet balanced, he bowed.
The crowd applauded while cameras flashed. A short deliberation later, and the judges awarded Michael with a gold medal.
“He didn’t fall,” says Jeff of his pupil’s performance. “He was flawless.”
Out of the cheering crowd came Governor Schwarzenegger. He asked Michael if he could shake his hand. Michael offered.
“Can I get you to say, ‘I’ll be back?’” asked the governor.
“I’ll be back,” said Michael.
In the Aon stairwell, Michael still hasn’t slowed down. One hand pulls up on the banister, one hand pushes down on his crutch. His face is red, his hands are blistered and he hasn’t touched his water. He just climbs, rounding toward another flight of stairs.
It’s Jeff who stops him, who tells him that he has to stop. Julie finally catches up to the both of them; she says she’s lost count. Jeff tells them both that Michael has climbed 20 flights of stairs, 500 steps. He’s done. He’s crossed the finish line.
“Just one more,” says Michael, “just one more.” Julie and Jeff look at each other. Reluctantly, they give him the okay.
Michael swings his foot on the first step. His left hand grabs the banister, pulling the weight of his body upward while his right, crutch in hand, pushes down and keeps his balance. He pulls up, swings his leg, pushes down. Pull, swing, push. Pull, swing, push. He can’t stop,
he won’t stop. Another step. Another. He is panting now. Sweat pours in rivulets. His face is flushed bright red.
He could drop the crutch, let his legs take over. But he needs the balance. He can’t forget his hands. But he has legs, he has feet, he can let them do what they were meant to do.
Jeff and Julie hold him back. “He has to stop,” says Jeff. After thirty straight minutes of climbing, Michael, whether he knew it or not, was quivering.
Michael relents, but only because he’s being forced to stop. Otherwise, he would keep taking the steps, one after another. He would never quit.
“This,” says Jeff, turning an admiring face to Julie, “is an athlete.”
Jeff and his mother help Michael toward a nearby elevator. He barely feels the elevator lurch as it heads toward the top floor. There’s a party and Dad and Tommy are there, and some North Shore classmates too. But he’s too tired talk or eat or celebrate that the charity made $400,000 for Children’s Memorial.
He just thinks about the climb. He was supposed to climb 500, a number that seemed a fantasy.
He took 520.
Michael smiles. Not at the accomplishment, but at thoughts of future climbs.
“Next year,” he says, “600.”
2 Comments
Hello, I am a mother of a one year old baby with pffd. Your article is inspiring yet not well researched. I assure you that my son was born with this condition not due to any “outside toxin” and I’ve never had a “viral infectiion”. A simple google search will tell you that this condition is very rare and causes are unknown. A deeper search will tell you that the condition could possibly occur due to something as slight as a temperature or vascular fluxuation during cell division at the specific area,(although this has not been proven). I think that when reporting on such a personal subject research should be done and the researcher should site perfesionals who are educated on the subject. It is important the public to be properly educated on such matters, take it from a mother who had no more than an occational tylonol during her entire pregnancy.
respecfully, Kathy
There are also more options for the treatment of pffd; rotationplasty, lengthening, shoe lifts, and no intervention at all. The severity of pffd varies, from bilateral to unilateral and also from a very slight shortening of the femur to complete absence. Also, the pelvis is not deformed, it is the femoral head and the socket in which it fits that may be underdeveloped. Your energies were definitely present yet focused on describing an appealing fiction that has little to do with the reality of the condition. I understand the inclination to make this sort of error; the condition itself impacts the emotions of the one viewing one afflicted with it, but your role is not to be the typical viewer, subject to knee-jerk reactions or to anecdotal evidence. (You, as a grad student, are likely well versed on the need to muster sufficient evidence in researching a story, much as a scientist must follow a prescribed methodology to advance a certain view.)
Oftentimes, the person afflicted with pffd knows less about the condition than you might think, spending their time living rather than musing about its possible causes. If you want the straight story, unaccompanied by journalistically appealing but unfounded rationales, consult the many medical journals on this subject. Even I, as a very well informed mother of a child with pffd, would hesitate to give my layperson’s assessment, given the wide-ranging research on the subject and the vast expertise necessary to specifically diagnose someone afflicted.