Josh Basile moves his hands as he talks, giving emphasis to each point as he talks about beach safety and spinal cord injury research.
Nine months ago, that was something he couldn’t do, and something doctors told him he never would.
Basile, 19, was paralyzed in a body surfing accident at Bethany Beach, Del., on Aug. 1, 2004. The 2003 Bullis graduate and former tennis star was spending a week at the beach with friends before returning to Skidmore College. A single wave pounded him against the wet sand, tearing off his bathing suit and leaving him motionless. Friends thought he was playing a prank on them before they saw his eyes rolled up into his head.
Last week, sitting in the gazebo behind his River Falls home, he recalled the emotional arc of facing paralysis.
“You’re confused. In the beginning you’re really scared. I was at Baltimore Shock Trauma. You’re in a room all by yourself and your parents can only visit for three hours during the day — it’s a critical unit. All you really have is the wall above you. You just stare at that thing all day,” he said.
He shifts back in his motorized wheelchair and with his right hand pushes a water spout to his mouth. Its attached to a Camelback — a backpack with a water pouch used by bicyclists and hikers.
A small innovation, perhaps, but a monumental one for Basile: “I never have to ask anybody for water.”
A YEAR AFTER his accident, Basile is launching Determined2Heal, an organization that will advocate for beach safety, support spinal cord injury research and bring information — and Camelbacks — to people making the transition into life after paralysis.
Helping Basile launch Determined2Heal is Jane Altshuler, a former Advanced Placement art teacher at Bullis, who visited Basile in the hospital shortly after he left the shock trauma ward. She has visited regularly since then, to watch movies with Basile, play chess, and as the months went by, helping him express himself through poetry.
“I knew that if he didn’t have something to look forward to every day and didn’t have a lot of concise goals, we would just freak out,” Altshuler said.
The group will hold its inaugural fund-raiser Saturday, a screening of the documentary “Murderball,” a movie about quadriplegics playing Olympic rugby.
The film, which won the Audience Award for documentaries at the 2005 Sundance Film Festival, aims to undermine stereotypes about people with disabilities without the sentimentality of other films. Quad rugby is a punishing and often violent sport — which the competitors took to calling “Murderball.”
“They’re not afraid to be who they are. They are who they are. They’re in a wheelchair,” Basile said of the competitors. “They’re not letting the wheelchair beat them. They’re getting out. They’re doing stuff with their life.”
Basile, too is doing something.
He said he hopes that the “Murderball” fund-raiser will provide seed money for Determined2Heal. In the coming months, he’ll assemble and personally deliver a care package for each new spinal cord injury patient — with a Camelback, an electronic blood pressure monitor, information about treatment options and more.
He’s also planning a campaign to advocate for beach safety. He wants to contact Maryland Gov. Robert Ehrlich and lobby Maryland and Delaware beaches for better signage describing the hazards of the water.
Then there’s Adventure on Wheels, a program similar to the Make a Wish foundation but targeted towards victims of paralysis.
And he’s delivering a message of hope — both as inspirational speaker to able bodied high school students and as an advocate of “restorative therapy,” the exercise-based treatment program that is helping him regain movement.
“When you’re at the hospital, the doctors say you have no chance of recovering after six months. …. A kid hears that and they give up. They stop. Their motivation is lost. All faith is lost,” Basile said.
The prevailing attitude of hopelessness worries Basile, who works with Dr. John McDonald at the Kennedy Krieger Institute at Johns Hopkins University — the neurologist that treated Christopher Reeve. McDonald’s therapy “reeducates” surviving nerves in the spinal cord, according to Basile, showing the body through exercise that it’s “OK” to conduct a signal through the spinal cord to each limb.
McDonald’s research has helped numerous patients regain extensive movement, including four in Basile’s condition who regained their ability to walk, Basile said.
Basile exercises five or more hours a day with therapists in Baltimore and said he can detect small gains every week.
“I am a firm believer in hope,” he said. “It’s not a matter of if, it’s a matter of when they’re going to find a cure for paralysis — Christopher Reeve said that.”
AS BASILE’S OWN treatment progresses, he’s calling on the Potomac community to take part in the multi-pronged mission of Determined2Heal.
That means raising funds for the care packages and supporting cutting edge spinal cord injury research.
But this month, above all, it means thinking about the beach.
In August, scores of Potomac families will leave work and worries behind and head for the shore. Basile wants them to go with his injury in mind.
“Some of my fondest memories are at the beach. I love the beach. But there’s a safe way have fun. There’s a right way and a wrong way,” he said.
Beachgoers should think of the wet sand the same way they think of the concrete floor of a swimming pool, and observe the same safety measures around it, he said.
Meanwhile, Basile is gearing up to advocate for more detailed and more numerous warning signs at beaches like Bethany and Dewey, where injuries like his have spiked in recent years.
“Nobody realizes that you can break your neck just by diving into the ocean. … I think they should have the warning signs,” said Nedra Basile, Josh’s mother. “If 15 people a year broke their necks at King’s Dominion, wouldn’t they close it down?”
WHEN BASILE SPEAKS to the Bullis tennis team, the players listen. The team dedicated its 2005 season to Basile, a year in which the Bulldogs went undefeated, won the Interstate Athletic Conference title.
“He’s a fighter; he represents what our team is about,” said Andrew Zutz, a rising Bullis junior who plays on the tennis team. “He’s just a great inspiration to our team.”
Basile attended several Bullis tennis matches this past school year, and he gave the players a pep speech before the Bulldogs’ first-ever 7-0 victory over arch-rival Landon.
Altshuler likens Basile’s approach to rehabilitation to the outlook he had as a tennis player — in the small confines of a tennis court, Basile was always trying to perfect the shots he’d direct in that small area. “He would never stop until he thought he was better at it, and he’s still like that,” Altshuler said.
“He’s really been pretty remarkable in that he’s never sat there and felt sorry for himself,” Altshuler said. “He’s just made such an incredible transformation. … He knows that there’s so much you can do, even though there are limitations.”
Altshuler, herself a cancer survivor, remembers people’s reactions to her as she lost hair during chemotherapy. “It is scary, and some people feel like they can’t handle it,” Altshuler said. “A lot of people don’t feel that these things can actually happen.”
But being with Basile, said Altshuler, is far from discouraging. “When I’m with him, I’m just so inspired,” she said. “There have been some extremely loyal friends, and it’s just incredible to see.”
“People either accept it or they don’t. It’s who I am,” Basile said. “That’s the bottom line — with anybody. If they don’t accept you for who you are, then honestly, they’re not worth bothering with.”
SATURDAY’S SCREENING of “Murderball” is another step toward the life Basile envisions for himself. He looks forward to answering questions anybody has about Determined2Heal, his condition, or his progress.
Basile returned to Bullis to give a motivational speech at an all-school assembly in the spring. Since then, he spoke at the McLean School, and again at Bullis for the lower school — his plan for the upcoming year is to visit a dozen schools, with motivational speeches in the fall months.
“Now he’s really good at it, and he always wants to do more and more of it,” Altshuler said.
Down the road, Basile hopes to get a business degree from Georgetown University or the University of Maryland, then a bioengineering degree at Johns Hopkins.
Such discoveries help keep Basile going, and keep giving him hope as he regains more mobility in his arms.
“You need to be positive, you need to have hope, and you need to exercise,” Basile said.
THERE’S A MOMENT in “Murderball” when Mark Zupan, captain of the U.S. quad rugby team reflects, “I’ve actually done more in a chair than I did able-bodied.”
Basile is beginning to embrace a similar attitude.
“After [speaking at] Bullis I realized how much of a palpable message I can get out,” he said. “Honestly, before this injury I saw someone with a disability, I was like, ‘That sucks.’ I couldn’t think of a life without sports. I couldn’t think of a life without going after girls. … [But] this is what someone looks like with a spinal cord injury. They have a wheelchair. So be it.”