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A Goalie’s Defense Against Muscular Dystrophy

Growing up in England and Germany, Ona McConnell ’13 was a standout field hockey goalie. But during her freshman season, in 2009, she never saw the field. She had attributed her struggles to stress, but after experiencing muscle cramping during off-season workouts, she decided to see a doctor. The diagnosis was myotonic dystrophy. “Seeing as I had no clue what myotonic dystrophy was,” McConnell says, “my first question was ‘Can I still play field hockey?’”

McConnell laughs now at the single-mindedness of her initial response. She faces a degenerative disease—the most common form of muscular dystrophy—that can weaken not just the muscular system but a range of other faculties, including heart function, vision, and cognitive ability. There is no cure.

In the last two and a half years, McConnell’s body has begun to fail. The prolonged muscle contractions have worsened, to the point that it can take her about 20 seconds to let go of a pencil. Her exhaustion is so persistent that she wakes with an alarm clock that vibrates her entire bed, and she struggles to keep her eyes open in class (which she worries makes professors assume she is bored or hung over). The cocktail of drugs she takes each day nauseates her and affects her memory. But she is still in school. And she still plays field hockey.

Shortly after being diagnosed in March 2010, McConnell had breakfast with Pam Stuper, her coach. McConnell made it clear she had no intention of quitting, a plan that had her doctor’s blessing. Stuper said she was comfortable as long as the doctors were, and she proposed a fund-raiser during the upcoming season. “Because the disease affects everyone so differently, you have to take it one day at a time, so I kept the doors open to her,” says Stuper, who now insists McConnell sit out one practice a week to rest and handle schoolwork.

The “Get a Grip” campaign, now in its third year, enlists donors to pledge gifts for each goal the team scores throughout the season, raising money for the Myotonic Dystrophy Foundation, whose board McConnell joined shortly after being diagnosed. McConnell made her collegiate field hockey debut in the 2010 season opener, and the team wore special jerseys to mark the launch of the campaign. She played in three games that year and two more last season, stopping two of the three shots she faced.

With little hope of cracking the starting lineup, McConnell approaches practices as if they were games, taking pride in doing whatever she can to make her teammates better. “When I see her at practice, I don’t think, ‘Ona has a disease,’” says Maddy Sharp ’13, the team captain. “It doesn’t cross my mind on a daily basis because she carries herself with such poise.”

But McConnell notices every subtle sign of her eroding talent. “The nanoseconds that you need I don’t have anymore,” she says. Her balance has become shaky. And cramping muscles make contorting her body to stop rebounds a devilish exercise. “Every time we practice, I try to stay at the same level, while the other two goalies improve,” she says. “Three years ago I was better than I am right now.”

Still, McConnell summons much from herself. In May, with Sharp and teammate Jessie Accurso ’15, she completed a Tough Mudder challenge, a 12-mile obstacle course with hazards like a plunge into ice water and a crawl under barbed wire. Her academic program is nearly as ambitious. She is still on track to graduate next spring, and she plans eventually to go to medical school.

Myotonic dystrophy cases vary widely, so it’s hard to anticipate what’s next. All that’s certain is that tomorrow will be harder than today, so McConnell is determined to make the most of the present. “There are definitely frustration points,” she says. “But at the same time, I can’t let this rule my life, and I’d rather spend the rest of my time being happy than being upset.”  the end


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