Five years ago, life looked very different to Casey Ellin.
At 26, he was assistant director of Stony Brook University’s intramurals and sport clubs. It was the perfect position for Ellin, who always loved sports and studied health management in college.
Then one summer day at nearby Jones Beach, everything changed. Ellin dove into the water — something he said he had done “a thousand times before without a second thought” — just as a wave was rolling in. Ellin hit his head on what he believes was a sandbar.
He suffered a traumatic injury to three vertebrae in his neck, which stole his mobility and left him using a power wheelchair fulltime.
Now 31, Ellin is learning that his post-injury life is still full of possibilities and that recent innovations offer new opportunities.
Every summer, spinal cord injury survivors from across the country gather at Stony Brook University for two weeks of intensive rehab and camaraderie through a program run by Empower SCI, a nonprofit organization that helps individuals develop skills that foster independence.
The program was founded in 2012 by three New England therapists who were troubled by ever-shortening rehab stays for spinal cord injury patients.
“Sometimes I felt like I was preparing people to just get by. A lot of people don’t have access to the specialized care they need to make the most of life,” said Carrie Callahan, a Boston-based physical therapist and co-founder of Empower SCI. “Sports and recreation are a big part of my own happiness, and a lot of people with spinal cord injuries feel that those things are off limits. I wanted to be able to give them back some of those experiences.”
Although Empower SCI program participants pay a fee, fundraising and a team of more than 50 volunteers help defray some of the costs.
Callahan said that it took time to find the perfect host site for Empower SCI. Stony Brook fit the bill in many ways. For example, students in the School of Health Technology and Management are eager for hands-on experiences, so along with several faculty they assist Empower SCI staff. What’s more, residence halls provide ample space for participants and live-in volunteers. And Stony Brook’s location near the water enables program participants to experience the beach again — often for the first time since being injured.
“A lot of our patients have had their injuries in the water, so there’s an element of facing old fears and overcoming the past,” said Tiffany Moy ’19, a graduate student in occupational therapy who volunteered at this summer’s Empower SCI. “They feel so excited because it’s something they never thought they could do again.”
Participants are able to surf using specially adapted boards that enable them to catch waves while lying down. Volunteers carry them into the water and help propel the board by kicking. Program participants also can explore yoga with modified poses; sports played in wheelchairs, including soccer and rugby; and even sled hockey.
Ellin said that on surf day he was “freaking out,” but “getting out there and doing it was like an emotional weight lifted” from his shoulders — an experience that completely changed his perspective about what’s still possible.
He was quick to share that perspective with Andrew Gallo, a 27 year old he’d gotten to know through physical therapy. In 2016, Gallo had been celebrating the end of his first semester as a nursing student at Stony Brook when he suffered a spinal cord injury.
“Casey used to tell me, ‘I divide my life now into life before Empower and life after,’” Gallo said. “I was skeptical and didn’t know what to expect, but I decided to give it a try.”
He added that he enjoyed learning about home items, adaptations and tips that help simplify daily life.
By the end of the program, Gallo said he left with a renewed sense of purpose — so much so that he has begun exploring the possibility of resuming his nursing studies at Stony Brook.
“There’s such a disparity of knowledge in the healthcare community” about spinal cord injury, he said. “My hope is that I’ll be able to get involved with spinal cord education.”
— Melissa Arnold