MEAGAN BERRY can hardly feel the oar in her hands. Sometimes she will let it go without noticing or thinking. That's about the only sign you might detect. You look at Berry and it's hard to believe she's on a time clock. A glance at her swimmer's shoulders under her dirty-blond hair doesn't indicate anything; nor does her athletic 5-9 frame reveal any clues. Neither does her resume at Episcopal Academy, which includes varsity letters on EA's swimming and water polo teams, plus 2 years in one of the most grueling sports on joints, crew.
Yet the Episcopal senior knows what's ahead. She knows, and it's what makes trips such as the one Berry is taking this week to England - with fellow EA senior Erin Flynn and juniors Emma Ciccotti and Bridget Gribbin, to the Henley Women's Regatta, an elite rowing event in Henley-on-Thames - that much more special, that much more lasting.
Berry, who lives in Havertown, suffers from a disease called Charcot-Marie-Tooth, a hereditary motor and sensory neuropathy, or peroneal muscular atrophy, which comprises a group of disorders that affect peripheral nerves.
Former 76er Todd MacCulloch retired in September 2004 after being diagnosed with the condition.
What compounds Berry's situation is she also has Type I diabetes, or insulin-dependent diabetes, when the cells of the pancreas produce little or no insulin, the hormone that allows sugar (glucose) to enter body cells.
The combination of CMT and diabetes, Berry has been told, will most likely put her in a wheelchair by the time she is in her 30s. It's a time clock she often jokes about, rarely gets down about, and has never - that's never - let it deter her from anything.
"It's hard for people to believe that I have a disease, but I like that, though, because I don't want people thinking, like, poor Meagan," said Berry, who is headed to Cornell, where she'll row next fall.
She's defiant. She doesn't want to be defined by CMT, though it puts great stress on her bones and arches, stirring great pain. She's unable to do many of the cardio workouts other athletes are required to do, like running. But it hasn't changed her attitude. It won't.
"I know what the doctors have told me, and I think there could a chance that they could be wrong," Berry said. "I can feel that I'm not deteriorating as fast as I've been told. But I can't see myself putting my life on hold when I'm in a wheelchair."
Then she laughs . . .
"I want to be one of those people in a wheelchair rugby league. That's the attitude that I have. My only concern is that people will tell me that I can't do this, or that I can't do that. I don't want anyone to think less of me that I'm in a chair. I just have to prove them wrong like I have been my whole life. I do get down sometimes about it; I'm human, I can't lie. Though overall when I think about it, I'm not concerned; I can handle it."
Berry has handled it since she was in third grade, when she would sprain her ankle at least once a month just by walking or standing for prolonged periods. Elastic bandages and crutches were her best friends. The diabetes diagnosis came when she was 13, under very frightening circumstances.
She dropped 40 pounds from September 2003 to March 2004, as doctors and specialists scrambled to find out what was wrong with her. The symptoms finally became acute on March 7, 2004, when Meagan, disoriented, walked into her bedpost and dresser. That's when Betty Berry, Meagan's mother, figured out what was going on.
"That's when it dawned on me, and I knew she had diabetes," Betty recalled. "She was losing too much weight; she was always tired and pale. They told me at CHOP that she was on the brink of going into a coma. Now look at Meagan today. People are so amazed by Meagan. Most kids wouldn't have gotten on a boat and attempted crew with CMT and diabetes. She wouldn't let this stop her. I forget how difficult she has it, because she never complains about either one of them."
Berry rows third seat for the Churchmen quad, who are undefeated in 14 races this spring, including victories in such prestigious rowing events as the Stotesbury Cup Regatta and Scholastic Nationals. EA's first race is Friday in the women's Henley, which began in 1988.
It won't be easy. The Henley is against the current, but that's something Berry is familiar with. Last fall, someone stole her $6,000 insulin pump, thinking it was an MP3 player. Berry had to go without a pump for almost 3 months, resorting again to shots.
Still, she never gave up rowing.
"I hate it when people tell me no," Meagan said. "You never want to be told you can't do the things all your friends are doing. I have no idea of what my limits are and push them all of the time. The way I see it, there are worse things in the world that I can have. This is easy." *