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A Goalie’s Defense Against Muscular
Dystrophy
November/December 2012
by Alex Goldberger ’08
Alex Goldberger ’08 is an Olympics
researcher at NBC.
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.”  |
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