The list of obstacles confronting Patrick Cogan and his pursuit of triathlon racing is as intimidating as it is long. There are the physical limitations of a young man who has Friedreich’s ataxia (FA), an incurable life-shortening neuromuscular disease that has robbed him the use of his legs and much of his coordination.
He also needs expensive equipment, from a recumbent tricycle to a racing wheelchair. And he requires almost constant supervision, whether training or racing, since his body can shut down without warning.
“It’s pretty much a mandate,” said the 29-year-old Lynn resident. “There’s no way I could do this without assistance. That’s a big thing for me. I do not like asking for help.”
So why does Cogan chase his competitive muse with a relentlessness that matches his disease? Simply put, he’s an athlete, one who sees possibilities rather than limitations.
“I love the challenge,” Cogan said. “If you came to me tomorrow and said ‘I will wipe out all of your debt, but you can no longer go to the gym, you can no longer cycle, you cannot be active.’ Well, that’s a no-brainer for me, because what’s the point of sitting on your couch all day? I enjoy being active. I enjoy pushing myself.’’
One of a set of triplets, Cogan suffered severe foot pain before he was 5. He was initially diagnosed with Charcot-Marie-Tooth disease, and underwent surgery twice before finishing high school.
Cogan’s symptoms intensified after his graduation from Salem State University. At Massachusetts General Hospital, he was diagnosed correctly with Friedreich’s ataxia.
‘What’s the point of sitting on your couch all day? I enjoy being active. I enjoy pushing myself.’
“My coach, April Bowling, described it best when she called FA the evil cousin to ALS,’’ said Cogan, referring to amyotrophic lateral sclerosis, or Lou Gehrig’s disease.
According to the Brain Foundation of Australia, Friedreich’s ataxia is a genetic disorder that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease.
In short, the disease disrupts the connection between the brain and the rest of the body.
“But you know what? It could be 10 times worse,” Cogan said. “I’m grateful every day. It could be so much worse.”
Cogan’s upbeat perspective was forged through difficulty. His father, Robert Cogan, died nine months after he was diagnosed with oral cancer in 2009. That same year, Cogan accompanied his mom, Helen, and triplet sister Rosemary, to Philadelphia for a Livestrong Challenge ride to promote cancer awareness. The next year, the three returned and Patrick became determined to do the ride. Training for the Livestrong ride introduced the Cogans to Bowling, who was teaching a cycling class in Salem.
“I’m a true believer that everything in my life, and Pat’s life, has happened for a reason,” said Helen Cogan. “If my husband did not die, I would not know April Bowling. And April would not know Patrick. The chain of events of our lives, for whatever reason it’s happening, is pretty incredible.”
Soon, Bowling was coaching Patrick with what his mother describes as “unconditional dedication.”
“He always astounds me,” said Bowling. “The first thing I ever did with him was go for a ride. He had just gotten his trike, and he was exhausted after 5 miles on the Arlington bike path.
“A year later, he’s doing a century [a 100-mile ride], and a year after that, he’s doing a triathlon. When I first met him, I kept thinking that the next thing was the last thing,” she said, laughing. “But no matter how hard something was, he wanted to go to the next level.”
Last summer, Cogan and a group of family members and friends who dubbed themselves Cogan’s Heroes pedaled 100 miles to raise funds for Friedreich’s ataxia research. He then told Bowling he wanted to do a triathlon, a decision rife with new obstacles.
“You have to be really careful, because there’s a lot of cardiac complications with Friedreich’s ataxia,” said Bowling. “A lot of coaches will shy away [from FA patients] because of the potential liability issues. As FA progresses, there’s a really fine line between keeping your body in the best shape it can be, and pushing too hard so you advance the disease more quickly.”
Due to neurodegeneration, Cogan can’t swim freestyle, and he’s prone to choking. Instead, he must swim on his back, tethered to a guide. Cogan also had to learn to adapt to a racing wheelchair.
In July, he competed in his first sprint triathlon — the Hockomock YMCA’s Triathlon at Pearl Lake in Wrentham — finishing second in his division.
Now he’s targeting a slightly longer sprint, the Pumpkinman Triathlon in South Berwick, Maine, on Sept. 7.
“I don’t do these races to compete, per se. I do them to participate,” he said. “I still compete against myself 100 percent. That’s exactly what my mentality was going [into the Hockomock triathlon], and still is. I’m not going to set any land speed records, but my goal was two hours, and I did it in 1:45:35.”
The Hockomock race underscored another roadblock — pricey equipment. Though Cogan already had a tricycle, he now needed a racing wheelchair. He found a used model for $1,300.
But he can’t do it alone. With Bowling now on coaching sabbatical, Cogan needed new guides.
Melissa Whitten, a friend and endurance sports coach from Essex, will be Cogan’s cycling and running guide. But Cogan’s participation in the Pumpkinman wasn’t guaranteed until Swampscott’s Craig Lewin, founder of Endurance Swimming, stepped up.
“It’s not just the disease, the money, the training. Now I have to find an athlete who is strong enough, and willing to do the event,” said Cogan.
“Because, swimming with me, you need to be an amazing swimmer, not just a very good swimmer. It’s not just you; you’re now responsible for me, a person with a disability.”
According to Bowling, Cogan’s situation is a reminder that society could do more to aid disabled athletes. She said Cogan is fortunate to have a tight-knit group of supporters.
“It’s almost more important for these folks who have these limitations to have the opportunity to test themselves, because it does translate into their daily lives,” Bowling said. “That confidence, that conditioning, that strength, all of that matters. Yet we don’t have the structure in place to support these athletes.”
Helen Cogan, meanwhile, said she has been overwhelmed by the generosity people have shown her son. A local fund-raiser netted roughly $40,000 for a new wheelchair van, and construction workers showed up at her Lynn home last October to build a 63-foot-long wheelchair ramp.
“How do you even repay that?” she asked. “That’s why we started the foundation. We have to find a way to pay this forward.”
The Project Wheels Foundation (ProjectWheels.org), said Helen Cogan, is a 501(c)3-pending nonprofit created to shed light on Friedreich’s ataxia, and to raise funds for research and an eventual cure.
“We want to help people the way people helped Patrick,” she said.
When asked what her hopes are for her son, however, Helen Cogan fought back tears. “My hopes and dreams are that they find a cure for this disease, and it never progresses further than it has,” she said.
“Patrick is very well aware of what’s going on, but he’ll do his damnedest not to let anyone else know what’s happening,” she said. “My wish and dream for him is to just keep doing whatever he can. Everything that’s on his so-called bucket list is on my list.”
Next up on Cogan’s list is his date with the Pumpkinman. “For me, the most rewarding part is finishing, and knowing it’s the culmination not only of my training, but all the people who helped me and trained with me,” he said.
“When we did Hockomock, we came around the first turn in the swim and I went under the buoy, because I didn’t see it, and that scared the bejeezus out of me,” said Cogan.
“I was ready to say, ‘I can’t do this,’ and we’d only made the first turn. I was ready to just pull the rope and say ‘I’m freaking out, I don’t think this is a good idea.’
“Not to sound like a cheap movie of the week, but then I thought, ‘I’ve put all this work into this. I don’t want to waste it and be a loser.’ I’m not saying anyone would have thought of me as a loser, but I would have. That’s what pushes me. That’s why I do it — to finish.”Brion O’Connor can be reached at firstname.lastname@example.org.