One Life to Live
He doesn’t talk about “finding a cure,” although nobody is denying that would be wonderful. He talks about finding something that can slow the progression. “It would almost seem selfish not to put myself out there,” he says. “I have the opportunity to be a voice.”
So he began to promote the organization and talk about the disease when given the opportunity, fitting it in with the other role he took when he returned from Middlebury: his job as an assistant coach of Piedmont High School’s tennis team.
On a recent afternoon, a two-door Toyota Solara pulled up to the curb near Piedmont High School’s tennis courts, and Neil Rothenberg jumped out of the driver’s seat, walked to the passenger side, and helped Corey out of the car. “Take it easy,” he told Corey, who struggled to get up. Neil held on to him as they slowly, unsteadily, made their way to the courts.
Corey has started his fourth season working alongside Neil, his friend and former coach. Around the time Corey was returning from Middlebury in 2008, Ted and Neil ran into each other, and when the conversation got to Corey, they talked about how he might make a good assistant coach. Corey and Neil had always had a good relationship, dating back to Corey’s days as a player when the team called him, jokingly, “Poker Face Reich” for wearing his emotions on his sleeve. He could rally his teammates and wasn’t afraid to be vocal. Now, as the assistant coach, the same is true.
“He’s going to be a lot blunter than me, in telling them what to do,” Neil says. “Corey’s going to be a little tougher.”
During a practice, Corey roamed the courts in his wheelchair, pointing out shots the players should or shouldn’t have made, or offering counsel. Each year, Neil has had a chat with any of the new students on the team, explaining about Corey’s condition. More recently, Neil has had to help Corey get situated, as he did on this day, but he doesn’t think much of that. It’s just part of the set up. You get the balls out, get the scorecard up, get Corey set—it’s no big deal.
There’s a special friendship between Corey and Neil, who probably understands Corey a little better than most people. When the coach was 30 years old, he had to see a neurologist himself. Losing muscle from his neck down, he tried to find out why he could no longer walk uphill, couldn’t jump, and was having more and more physical problems. Ultimately he was diagnosed with, and recovered from, Guillain-Barre syndrome—one of the diseases Corey was originally tested for.
“It makes me a lot more sympathetic to what he has,” Neil says. “And, I didn’t have a death sentence.”
He looks at his assistant coach and friend as an inspiration.
“I think the thing we’re dreading is at some point we’re not going to understand him,” Neil says. “Somehow he’s going to make it work, just knowing him.
“I think the frustrating thing is that he can’t do the drug trials,” he adds. “He doesn’t fit the protocol. He’s too far along.”
Corey isn’t scared. He knows he could be depressed, but instead he tries to appreciate his life. He spends time outside while he still can. He enjoys little moments, like watching television with his family. He recognizes the simple things that make him happy.
“Obviously I’m not in denial,” he says. “But I’m pretty good at living in the moment and not always thinking about the future. I’m a little afraid of death, but thankfully that’s something that still seems far away. The disease doesn’t scare me.”
There are some big decisions ahead. At some point, he and his family will have to decide when the falls are too frequent and he needs to move to the wheelchair full time. And even further down the road, they’re going to have to discuss if he ever wants to be put on a ventilator. But that’s a discussion they’re not ready to have yet.
There might be two strikes against him, but Corey is still at the plate. He has limped to get there, but there’s a smile on his face and a glimmer in his eye.
Brian Eule is the author of Match Day: One Day and One Dramatic Year in the Lives of Three New Doctors (St. Martin’s Press.)