Rower pulls against muscular disease
KIRKLAND — Brian Colella had found his sport. Every morning, he was up at 7 and in a shell on Lake Sammamish, a member of the Sammamish Rowing Association. Three hours a day, he happily endured the punishment all rowers accept as part of the game.
There really is no other sport like rowing. It's a mixture of sweat and serenity; its rewards are almost totally visceral. From 1 to 10 on the glamour scale, crew rates a ½. For most rowers, there are no cheering crowds, no television cameras and almost no media attention.
But a morning on the water, searching with teammates for the perfect rhythm as you pull a shell across still waters, is at once exhausting and invigorating.
And Colella — whose father, Rick, swam in the 1972 and '76 Olympics, winning a bronze in '76 — thought it was as close to perfect as sports can get.
"I really liked the people I rowed with and the coaches," Brian said. "I really liked being out in the boat in the water."
But at the end of the 2003 school year, Brian, then 16, began experiencing stiffness in his shoulders and back. He couldn't lift his arms parallel to his shoulders.
He thought maybe he was working too hard, pushing his still-developing muscles too hard. He hoped it was a pinched nerve or a slight rotator-cuff tear.
He spent the summer of 2003 parading from one doctor to another, getting one different diagnosis after another. Finally, a doctor gave him some simple tests.
He asked Brian to close his eyes tightly, while the doctor tried to pry them open. The doctor asked Brian to puff out his cheeks, and he tried to push the air from Brian's cheeks. He asked Brian to whistle.
The eyes opened too easily. The air came out too fast. The whistle never blew. Finally, last September, a blood test confirmed that Colella had facioscapulohumeral disease (FSHD), a non-fatal form of muscular dystrophy that affects the face, scapula and arm muscles.
Rick Colella said, "I kept saying, 'It isn't that. It's ridiculous even to be worried about it. It's got to be just something else, just some injury from rowing.' "
Brian, however, reacted with relief, telling mother Terri, "It's just a bump in the road."
Now, at least, he knew what it was. Now, at least, he didn't have to visit doctors every day. Now, he believed, he could begin living his life again, as normally as possible.
Brian Colella handles his disease without a trace of self-pity. He handles it with humor. His father calls his approach "courageous," and although Brian rolls his eyes when he hears that, the truth is, he is quietly heroic.
"I let my parents do all the over-analyzing," Brian said Friday. "When we were waiting for the tests to come back, I kind of knew what to expect. I was kind of ready for it, and it's not that big of a deal right now.
"Sometimes I might say, 'Why me?' but it doesn't affect me that much right now, so I don't notice it. But I decided I wanted to go public with this because it's the right thing to do, so it can help other people with worse cases."
Rick Colella, who knows something about racing, said he believes the family is in "a race against time."
"What we're thinking is that if it doesn't affect him that much right now and if there was something that could fix it, then he may never be affected that much."
FSHD is a degenerative disease. It usually announces itself to people in their late teens and early 20s, but it doesn't run a predictable course. Skeletal muscles will weaken and waste throughout Brian's life, but the extent and rapidity are unknown.
The good news for him is that his internal organs are unaffected. Still, it is not a benign disease. It can be terribly debilitating. There is no treatment, and little can be done to stop the disease's progression.
A bright, articulate young man, Brian is considering a life as a sportswriter. Still, he and his family need help. Because it is non-fatal, very little of the money that is raised for muscular dystrophy, approximately 5 percent, goes to FSHD research.
Brian's mother is the president of a grass-roots fund-raising organization called Pacific Northwest Friends of the FSH Society.
"We can't sit back and watch him go," she said.
They need money to fund research to help cure or at least reverse the march of FSHD. In January, they will hold a fund-raiser at the Bellevue Hyatt — FiSHing for a Cure. (For more information, call 425-827-8954 or 425-283-8782).
"The disease is debilitating but slow progressing; so, if there was a cure or a treatment, it would help people for a longer period of time," Rick Colella said. "But the way it is now, the doctors tell you what it is, then send you on your way and say they'd like to see you maybe in another year to see how it's going. That's it."
Brian Colella can't row anymore, but he can race. He can be the leader in the chase to find a cure for FSHD. But, like rowing, he needs teammates to pull with him.
And his is a team worth joining.
Steve Kelley: 206-464-2176 or skelley@seattletimes.com.