By Laura Barlament
The instant when everything changed happened on a sunny Saturday in August 2006, on a beach near Los Angeles. Susan Moffat ’98 was hanging out there while her then-boyfriend (now-husband), Janne Kouri, played volleyball.
It was a typical day of relaxation for the two top-notch college athletes — Moffat was one of the highest scorers in Seahawk women’s basketball history, and Kouri was a star defensive tackle for Georgetown football. Both were high achievers academically and professionally as well; an accounting major, Moffat worked for J.P. Morgan Private Bank, while Kouri was a business developer for a mobile gaming firm. This power couple had all the promise and potential of the world at their feet, and they loved each other deeply.
To cool off after the game, Kouri dove into the waves. Nobody paid attention; it was a completely everyday action. But underwater, Kouri was in huge trouble. He had hit a hidden sandbar head first, breaking his neck, and was instantly paralyzed. A passing medic happened to see him and saved him from drowning. Kouri spent the next two months in intensive care, fighting for his life.
The bad news was immediate. “He will never walk again,” one of the emergency room doctors told Moffat.
Yet, 10 years later, Kouri and Moffat are showing the world that what most doctors thought was impossible is not. At the same time, they are also helping other people who have suffered debilitating diseases or injuries to have the healthiest and most empowered life possible.
Once Kouri had survived the initial crisis, Moffat stood before some huge decisions: What would be the future of their relationship? And, how would they face the consequences of his injury?
“When he got hurt, I thought about what that meant for my life, but I also thought about why I fell in love with him in the first place.” She laughs as she adds, “Never once did ‘because he could walk’ come up.
“I fell in love with him for his heart and his mind.”
“It sounds kind of cocky, but it’s what drove us and allowed us to push through: We’re not average people.”
Always “an upbeat, positive person,” Kouri approached his new life with the same attitude. “He wasn’t going to allow the stress or the grief he was feeling for what he had lost to seep into his life in a deeper way,” Moffat says. “He made it easier to stay with him and to travel this journey with him.”
Moffat went to work on educating herself about neuroscience and Kouri’s rehabilitation options — and she wasn’t happy with most of them. Doctors kept telling her that statistics showed recovery was out of the question. But Moffat and Kouri didn’t want to just learn to live with paralysis. They wanted him to go to a place where “scientists were going to push him.”
“I wrote a letter to Janne and I said, ‘You know, statistics are averages.’ When I think back on it, it sounds kind of cocky, but it’s what drove us and allowed us to push through: We’re not average people. We weren’t average people to begin with, and no matter what happened, I wasn’t going to allow us to be average people going forward. And he was going to need to put in a lot more than average work to get any kind of recovery.”
Moffat eventually found Dr. Susan J. Harkema and the Frazier Rehab Institute in Louisville, Kentucky, which offers a therapy to retrain damaged nervous systems. For the first time, Moffat says, she found a doctor who expressed hope. She quit her job and moved with Kouri to Louisville for Harkema’s “locomotor training.” After three months, Kouri reached his first milestone: wiggling his toe.
When it was time to return home, they wanted Kouri to continue this training, but there was no such opportunity anywhere nearby.
So what next? Moffat and Kouri decided to bring locomotor training to Los Angeles. More than that, they decided to create a community resource that would help all people with mobility impairments to have the best physical fitness possible. With the help of friends and family (including Moffat’s Wagner connections), they raised money and founded NextStep Fitness, a nonprofit gym where disabled people can receive locomotor training or just work out, with the help of trained staff. As a part of the Christopher and Dana Reeve Foundation’s NeuroRecovery Network, NextStep Fitness also provides data for researchers.
“They took Janne’s spinal cord injury, which could have stopped both them in their tracks completely, and they turned it around and they have done something so remarkably creative and gutsy,” said Susan Howley, the Reeve Foundation’s executive vice president for research, in an interview with Good Morning America.
After three years of locomotor training, Kouri took his first steps. Now, 10 years later, he continues to take more and more steps forward, and so does NextStep Fitness. Kouri runs the organization, and Moffat — who now works for Deutsche Bank in Los Angeles — has stepped down from the board but remains highly involved.
In the entire United States, there are only six fitness facilities like NextStep. But soon, there will be one more, in the New York metro area. NextStep has signed an agreement with Stony Brook University to build a fitness center next to the university’s rehabilitation research lab. NextStep is raising $2 million to build and equip the center, while Stony Brook will provide operating and staffing costs. They hope to break ground in early 2017.
Despite these triumphs, Moffat emphasizes that they are traveling a tough road, both in their own lives and in their work.
“Paralysis is one of the most underfunded disabilities in the country,” says Moffat. “As a society, we tend to overlook people with disabilities, because they slow us down in our daily lives. And for a society that lives a very fast-paced lifestyle, people with disabilities sometimes get viewed as being in the way.”
Moffat says she has learned a tremendous amount through her marriage and work with Kouri and the disability community.
“I don’t know if it’s guilt, but I feel that his injury happened to teach me something. I learned a lot more patience, which I still lack a lot of. But it definitely taught me patience, and to think outside myself.”