A step ahead of his limitations
At Elms College, athlete with Down syndrome reflects a running team's enduring spirit
Amy Lane doesn't just talk the talk. She runs the walk.
The eighth-year coach of the men's and women's cross-country teams at Elms College, a school with just 840 undergraduates in Chicopee, Mass., Lane knows a thing or two about endurance. Ranked 13th nationally by UltraRunning Magazine, the 32-year-old Lane spends many a Sunday winning 50-kilometer races with names like "Bimbler's Bluff" and "Pisgah Mountain." Fifty-mile races are common recreational fare for her. And the past three summers, just for kicks, she has completed the Vermont 100.
She gets it. She knows what it's like to be out there on the course with blisters on her feet, toenails turning black, each step a little knife to the rib cage. A dozen hours into a 100-mile race, when the pack has separated, she knows the way cross country can hold up the harshest of mirrors, forcing confrontation with the self.
"You're alone with your demons," she says. "You're beaten down. The littlest things can really be challenging, like when the sun goes behind the clouds, or you step on a rock. You try to convince yourself to keep moving forward when you're exhausted and everything hurts."
So here on a blustery Saturday morning smack dab in the middle of October, she understands the challenge for her women's team out on the course with 18 other squads at Western New England University in Springfield. They are all battling hard stuff. There is, for instance, Kerry Ashe, the sophomore who is still trying to approach her old high school times after an exhausting struggle with Lyme disease. There's Stephanie Konstantinidis, carrying her inhaler because of the asthma that can leave her gasping at any moment. And, of course, there is freshman Emily Taylor, whose uniform consists of far more than socks, shoes, shorts, and singlet; she also brings along an inhaler, glucose tabs and an insulin pump -- just in case either her asthma or diabetes acts up during the 5-kilometer race.
The three runners place between 148th and 182nd of 191 finishers, but you would never know it from the reception they get. At several points in the course, the women are buoyed by boisterous cheers from the Elms men's team who hold up signs that read, "Run Like You Stole Something," "Run Like You Have the Runs," and "Make Amy Happy."
Amy is happy. Her team is digging deep.
The excavation continues in the men's race. Future engineers from WPI, hipsters from Hampshire College and soldiers-to-be from Norwich University hear the starting gun and bolt from the line, a thundering herd of slender young men beginning a grueling 8-kilometer race. Guys in the green singlets of Elms College find an extra bounce in their steps when they hear the Elms women whooping it up.
"Come on, Mike! Keep fighting! Push through!"
Chugging along toward the rear of the pack is Mike Desmond. A senior computer information technology major from Nashua, N.H., Desmond has a brown ponytail, a ribbon tattoo on his left forearm and a port beneath his right shoulder for direct access to his bloodstream. Desmond began his freshman year with cross country and ended it on the oncology floor at Mass General. He has been working his way back from the leukemia ever since. Ultimately, he will finish 174th of 177 runners this day, but as he disappears into the woods at peak foliage, there is a whole team that has his back.
"Everybody knows what he's been through," Lane says. "We don't care what place he finishes. The fact that he's out there just means so much to all of us."
But if you really want to see Lane light up, take a look at the finish line. At the head of the pack, improbably, is a sandy-haired young man in an Elms uniform, stride for stride with a lithe, red-bearded runner. The boisterous Elms contingent is going crazy:
"Go, John, go! Keep pushing! Fight through it, John! Run!"
Sophomore John Southworth, inspired by the attention, hits another gear. He smiles broadly, strides harder, blazes toward the line.
Is this even possible? Can John Southworth really win this thing?
After all, he has Down syndrome.
Ann and David Southworth are an accomplished couple. Ann is a lifelong educator who has worked as a teacher and an assistant superintendent of schools in Springfield. She is currently the president of Cathedral High School, a Catholic school in the city that was destroyed by the June 1 tornado (students are taking classes at an abandoned elementary school for the next two years). Among other things, Cathedral has a glittering athletic heritage. Alums include an NFL Hall of Famer (Nick Buoniconti), a major league pitcher (Chris Capuano), an NHL executive and former player (Paul Fenton), a former NBA commissioner (Larry O'Brien) and the world's former No. 7-ranked tennis player (Tim Mayotte).
David is the president of the Southworth Company. Considered the world leader in resume paper, the company has been in his family since 1839. His own resume includes quite a bit of athletic involvement. A three-sport athlete in high school, he went on to graduate in 1976 from Yale University, where he was captain of the lacrosse team. When he was about to become a parent, one of the things he was most excited about was sharing his love of sports with his offspring.
In 1987, David and Ann's first child, a daughter, died at birth. It was, says David, "a huge shock." Two years later, John was born. After a few days in the hospital he was diagnosed with Down syndrome.
For many parents, those are dreaded words. The extra genetic material on the 21st chromosome -- which occurs in one in every 733 live births -- has been linked to a long series of physical and mental impairments. Much of the conventional wisdom has long held that children with Down syndrome are doomed to a significantly limited life. Some medical textbooks contend that kids with Down syndrome have an average IQ of 50. Deficits in speech and hearing provide huge barriers to communication. The characteristic short limbs and poor muscle tone have been thought to rule out any real athletic involvement. Abortion rates for parents who get a prenatal diagnosis of Down syndrome have in some cultures exceeded 90 percent.
The landscape of Ann and David Southworth was changed forever upon welcoming John into the world and hearing he had Down syndrome.
"It really didn't matter," Ann says. "He was so beautiful. We knew death, and we knew life. He was a joy."
Still, their journey with John has been consuming, filled with obstacles at every turn. He was born with a couple of holes in his heart. He had poor balance. His enlarged tongue made his speech sound sloshy. Like many with Down syndrome, he had hearing troubles. Loud sounds in a public environment have always proved hard to filter.
At home, John could be bubbly, even mischievous, but outside of his comfort zone he often retreated into long periods of silence, an inner world that was hard to unlock. Even within that isolation, Ann and David sensed a strong stamp of will. When John would try to pull himself up as a toddler, he would fall hard, cry and then try again, over and over. "There is something in that kid that is determined to make it," Ann says. "He would never stop. That was always in him, something calling him to overcome."
The physical dimension was particularly challenging. Saddled with low muscle tone, John lagged far behind his peers. "It was a great feat to just get him walking," David remembers. "It was way delayed."
At 8, John got involved with Special Olympics. Too shy at first to join, he just watched with David the first several times they attended. Ultimately, he was coaxed into throwing a softball and meandering his way through the 100-yard dash.
Ann was determined to keep the bar high. She mainstreamed John. She hired an inclusion teacher to accompany him to classes. She refused to buy into what others said her son couldn't do. She researched the breakthroughs in assistive technology, computers that opened up language for John. "Sometimes I'm amazed at what she will allow as a goal for John, while I might settle for less," David says. "That's her genius as an educator. She's seen all kinds of kids break through tough upbringings, tough situations."
When John was set to enter Cathedral High School as a freshman, Ann signed him up for what she thought was track. Proudly, she mentioned it to David over dinner.
"Ann, track's in the spring. Cross country is in the fall. He was in the Special Olympics and he ran 100 yards, barely, but they run three miles. We're headed for a train wreck here."
As train wrecks go, this one was rather beautiful. In time, John got absorbed into the world of cross country at Cathedral. He liked to dole out high-fives. He liked to wear the purple uniform. Running with a personal coach, he began to push the envelope from 100 yards to a few hundred, to a half-mile and beyond. During his final meet as a senior, John was joined toward the finish by teammates who had long since completed the race and by lots of competitors from other schools. Some picked up the tape at the finish line and allowed John to break it. Everyone was cheering at the end.
In a college English class focused on similes and metaphors, he wrote about his cross-country experience, saying that running on a team was "like being with a flock."
They were bopping in the Bonneville.
On a humid Thursday afternoon in late September, John Southworth and assistant coach Matt Hegarty arrived for cross country practice at the Fairview Cemetery in Chicopee. Hegarty was driving his black 1992 Pontiac Bonneville with almost 200,000 miles. It's an old car with one modern touch; he had set up an adapter for his iPod, which was blaring "My Girl" from the Temptations.
John Southworth, filled with sunshine on a cloudy day, exited the car, dancing. He playfully shadow boxed with Hegarty, then gave a high-five to Mike Desmond and joined his teammates stretching against a fence.
Coach Lane, fresh from her full-time job as an engineer for the Amherst Department of Public Works, spelled out the workout -- one she called "Prefontaines." It was interval training along a hilly quarter-mile loop through the cemetery, during which she would call out "Race!" (5-kilometer race pace), "Sprint!" (as if it's the last 100 yards), and "Easy!" (recovery).
Over the next half-hour, runners from Elms College circled part of the cemetery. "Drop those arms," Lane called out. "Nice long strides. Let's go." A C5 transport plane loudly angled down to nearby Westover Air Force Base. "Come on, guys. This is 5K race pace. Let's turn those legs over." Brown oak leaves pirouetted down amid algae-covered stones. "Come on, Emily. Challenge Becca. Get up there, girls. Just 10 seconds of pain -- that's it."
Stephanie Konstandinits gripped her inhaler. Mike Desmond, sweat darkening his gray shirt, ran a hand through his long brown hair. John Southworth drifted off from the group for a little while, with Matt Hegarty keeping a watchful eye.
Hegarty is finishing up his degree this year by completing a coaching practicum. That has consisted largely of one-on-one work with John Southworth. He runs with him each practice. He accompanies him at meets, during which John typically runs a modified course. (Often he starts early, and he almost always runs a shorter distance, perhaps a 5K during an 8K race. His time and place do not count in the race results.)
Sometimes during practice or a meet, John will stop running. He might walk or wander off for a while, seeming preoccupied or perhaps enjoying the serenity of an autumn day in the woods. "It's hard to tell exactly what he's thinking because he's usually pretty quiet," Hegarty says. "But he does respond well to me when I call him, 'Hercules.' "
David Southworth never got to coach his son in Little League, but the sports bond has played out nevertheless. The former Yale lacrosse captain often goes running with his only child -- a college athlete, too -- sometimes even accompanying him and Hegarty in a meet. "He knows he's achieved something for himself," David says. "It's huge."
Ann Southworth revels in her son's success, but admits that the journey has been -- and remains -- exhausting. "You lose over here," she says, pointing to one side, "but you gain over here," pointing to the other. "There's more joy than there is sadness, but there is both. You run up against a wall, and you have to figure out how to get through it, over it, around it. David and I just figure, 'We'll do it somehow.' And John does, too."
She readily admits that it takes a particularly large village to raise a child with Down syndrome. She credits in particular Kaitlin Collins, the "academic coach" who has been working with John on a daily basis for almost seven years.
Collins, who does everything from interpreting John's speech to Elms professors to traveling with the Southworth family to neurology appointments in Florida, says she marvels at both John's spirit and his drive. "He's always so upbeat," she says, "and he works nine times harder than the typical college student."
The cross-country community has also been a big part of that support, according to Ann Southworth. Mike Desmond has been particularly kind. "He's so sweet to John on campus," she says. "He's always reaching out to him and going out of his way to say hello, and give John a handshake or whatever those things are they do now."
She credits Amy Lane for embracing John's participation, even with all the adaptations that his presence has required: a personal coach, special race conditions, clearing things with rival coaches and race officials, etc. Lane just bats away the compliment.
"In my mind, everybody adds something to the team," she says. "John reminds us of the joy that we all have in running. You see how much he loves it, and it inspires you to work hard."
The Elms College cross-country team is not, by any conventional standard, a "good" team. Only one runner placed in the top half of the pack in the meet at Western New England University a couple of Saturdays ago (an 82nd-place finish out of 191 in the women's race by Rachel Lehouillier).
But Lane feels that this has been a successful season. "My team is a very, very close-knit team," she says. "We really accept everyone for all the different differences. I think it's made all of the athletes more compassionate people."
In cross country, you battle your demons all alone. But Lane insists that in the end it's a team sport.
Amid raucous cheering from the Elms flock, a beaming John Southworth sprints to the finish line. A few yards before he gets there, Matt Hegarty gives him a little tap on the back and veers away.
Marty Dobrow is a frequent contributor to ESPNBoston.com. A professor of communications at Springfield College, he is the author of "Knocking on Heaven's Door: Six Minor Leaguers in Search of the Baseball Dream" (2010, University of Massachusetts Press).
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