By Gina McGalliard
When Ryan Levinson was told in 1996 at age 24 that he had SSH muscular dystrophy, he was advised by his doctor to quit all athletics and take up typing. At the time, Levinson was an outdoor recreation major at SDSU and competed in international cycling competitions. Instead of succumbing to his condition, he became more active than ever.
Muscular dystrophy causes one to progressively lose muscle strength, and those with it can eventually become so weak that they cannot close their eyes. But today, at 35, Levinson regularly competes in athletic events and on Oct. 28 will compete in the 14th Annual Sempra Energy San Diego Triathlon at La Jolla Cove. “I’m training with more focus and passion than I did then, but now I’m slower because of my disability,” he said.
Levinson went to the doctor when he noticed muscles were disappearing. He did not go right away, however. “When I started noticing some muscles starting to disappear, I always attributed it to an injury or something like that,” he said. Today, Levinson has lost the ability to hold his arms over his head and to do a sit-up, pull-up or push-up, and has lost muscles in his back, chest, triceps, inner thighs, right calf and lower abdominals, and has a slight belly because there are no muscles to hold in his stomach. Because the condition affects facial musculature, he looks younger than his 35 years, which is typical of people with muscular dystrophy.
The advice that Levinson received when he was diagnosed was standard medical advice at the time, because it was believed that while exercise builds up muscle in normal people, for those with muscular dystrophy, it will accelerate muscle degeneration. Doctors may still recommend stopping intense physical activity for those recently diagnosed; but if patients want to take a different approach, they will often give them Levinson’s phone number and e-mail.
“So now I get e-mails from all over the world,” he said.
Levinson is a sponsored athlete of the CAF, an organization started in San Diego that raises money to enable people with physical disabilities to pursue fitness and athletics. They have raised more than $11 million, sponsored more than 2,600 athletes, and partner with many governing bodies for sports. Annually, they hold a triathlon at La Jolla Cove, which includes a 1.2-mile swim in La Jolla Cove, a 56-mile bike ride and a 13.1-mile run.
“This is more about celebration of the foundation,” Levinson said of the event. “It almost feels as powerful for me as a birthday or an anniversary. The challenge is less of a competition and more of a celebration, that it has brought (accomplishment) to hundreds of thousands, if not millions, of people across the world. This organization here in San Diego in the last 11 years has played a leading role in revolutionizing the lives of athletes with disabilities.”
Levinson said one thing that sets CAF apart is the variety of disabilities the group accepts. Most organizations only represent one disability, and CAF was the first organization that would accept a disability like muscular dystrophy, which is not readily obvious to people. When he first became acquainted with CAF, Levinson saw photographs only of amputees or people in wheelchairs. When he inquired whether or not he could join, he expected to be turned down.
“I was surprised when they said, ‘Yeah, absolutely,’ ” he said. “That was the day that my life changed more than I ever imagined.”
Levinson works as an EMT, to his knowledge, the only disabled one in San Diego. He runs 911 calls out of the San Diego Fire Station, but doctors say he will probably only be able to continue for a couple more years at most. He also owns two chickens, two cats and 30 tortoises, and is a certified instructor in kiteboarding, scuba diving and sailing. During his off season, he helped launch a nationally recognized surf team for disabled athletes.
“Aside from CAF, the reason I’m able to chase my athletic dreams is with the support of my friends, the companies that support me, and my friends and family, especially my fiance Nicole.”
About facing daily life, Levinson said, “All I can do is decide how I’m going to respond and how I’m going to live my life each day.”
To find out more about Ryan Levinson, visit www.ryanlevinson.com. The triathlon will introduce the athletes at 7 a.m. and the event will start at 8 a.m. It will include more than 650 athletes, 120 of whom are disabled and 25 of whom are veterans wounded in Iraq or Afghanistan. Actor Robin Williams will be at the event.
For more information, visit www.challengedathletes.org. CAF recently experienced a fire in which many letters and memorabilia collected over the years, as well as items for auctions and raffles, were destroyed. You can also donate online at www.sdtc.kintera.org.