Home>Features>Feature - Marathoner With a Mission: Reservist guides nearly blind runner across the finish line
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With each person holding one end of a towel, Lt. Col. Kelli Molter and EJ Scott run in the Air Force Marathon at Wright-Patterson Air Force Base, Ohio, Sept. 15. Scott had a goal of running the race in under five hours. He finished in four hours, 59 minutes and 25 seconds.
Scott, with the help of guides like Molter, has dedicated himself to running 12 marathons in 2012 to raise money and awareness of choroidermia, the disease that is causing his blindness.
by Master Sgt. Steve Staedler
440th Airlift Wing Public Affairs
9/27/2012 - Citizen Airman/Oct. 2012 -- Have you ever had one of those "ah-ha" moments where in just a matter of seconds everything suddenly becomes crystal clear, and your life instantly takes on a new purpose and direction? It doesn't really matter when or where it happens, but, rather, that it happens.
Such a moment happened to Lt. Col. Kelli Molter. It occurred while she was on duty at Headquarters Air Force Reserve Command, Robins Air Force Base, Ga. Molter, a senior duty officer in the Force Generation Center, was working a late-night Battle Watch shift earlier this year when an episode of Dr. Drew's Lifechangers came on the television set.
Dr. Drew, whose full name is Drew Pinsky, is a popular radio and television personality who often counsels people through various medical and addiction issues. In this particular episode, Dr. Drew was interviewing a person who was nearly blind but was planning to run 12 marathons in 2012 -- one a month -- to raise money and awareness of choroidermia, the disease that was causing his blindness.
"It seemed as if the stars and moon aligned, and everything just connected," Molter said. "I thought, 'This was my guy; this is him.'"
An Internet search turned up a website for The Choroidermia Research Foundation. Molter immediately called it, figuring she'd leave a message with her contact information in hopes of reaching the individual on the Dr. Drew show. To her surprise, someone answered the phone. ... at 10:30 p.m. A few days later, she was talking to him.
Vision Fading Away EJ Scott had always thought he was just a clumsy kid. He would occasionally take a corner too sharp and clip a wall or knock something off a table. In reality, he wasn't clumsy at all; the problem was with his vision.
He began noticing problems with his vision -- things such as flashes of light similar to fireworks in his eyes and trouble seeing in dimly lit places -- when he was a teen.
Doctors told him his vision was fine, and so he accepted their diagnosis and moved on.
Hoping that whatever was causing these issues would eventually just go away, Scott learned to live and adapt his life to them. Unfortunately, his vision continued to get worse. It wasn't until 2003, when Scott was 27, that he learned the true cause of his vision problems.
"I had never heard of choroidermia before; it was a scary moment in my life because I didn't understand what was happening," Scott said, adding that he was in denial about his deteriorating vision for about a year.
Choroidermia is a rare inherited disorder that causes progressive loss of vision due to degeneration of the choroid and retina. It is caused by a lack of RAB Escort Protein 1 (REP-1). The disease occurs almost exclusively in males. There is no known cure for choroidermia, and people with the disease will eventually lose their sight completely. About 6,000 people in the United States suffer from the disease.
Scott said people with choroidermia often don't talk about it, which was the case in his family. His grandfather was blind, but no one in his family talked about the disease or the possibility that Scott and his brother could be carriers of the defective gene. Shortly before Scott's 2003 diagnosis, his brother (who was 16 at the time) was also experiencing vision problems and was diagnosed with the disease. That prompted Scott to get tested as well.
Scott said if he had known about the disease earlier in life he could have taken steps to slow down the progression.
"I have a real problem with people being quiet about it; that's a real issue for me," he said. "It's the responsibility of people who have it to speak up about it more than they are. I know it's a hard thing to do, but nothing happens when you're being quiet."
On a Mission Being quiet about choroidermia is the last thing on Scott's mind. About a year after his diagnosis, he decided to use his love of improvisational comedy to start hosting fund-raisers. These events raised thousands of dollars for research and in the process allowed him to hone his comedy and acting skills.
But in the ensuing years he began putting on weight, and his overall health suffered. So he began taking a more proactive approach to his health by becoming more active, watching what he ate and quitting smoking. The effort paid off as he started to gradually shed those extra pounds.
In the process of losing weight, Scott met Jeff Benelli, a marathon runner who also has choroidermia. Getting to know Benelli inspired Scott to start training to run the Chicago Marathon in 2010. Successfully running in Chicago gave him the idea to run 12 marathons this year as a way to raise awareness and money for research. Running one marathon, not to mention 12, in a year is a tall challenge in itself. But the fact that Scott is now 85 percent blind makes his goal even more remarkable.
"My goal is to not hurt myself of course, but ultimately I want to bring awareness to this disease that I have that most people have never heard of and shine a spotlight on it," he said.
Scott began training by running on a treadmill, keeping his diet in check and working out with a personal trainer. Since his eyes are extremely sensitive to sunlight, and bright light can accelerate his blindness, he runs while wearing a blindfold.
"I don't like running with a blindfold, as it's a constant reminder of what's happening to me," he said. "Taking a step and not knowing where my foot is going to land is scary. Mentally, it's been more challenging than I thought it would be."
When Molter contacted Scott and asked him to run with her in the Air Force Marathon Sept. 15, he already had a marathon on his calendar for September. But Scott said the thought of running with her at Wright-Patterson Air Force Base, Ohio, sounded "pretty neat," so he decided to do it.
Making it Happen Running a 26.2-mile marathon blindfolded is a tricky process. Scott said he completed his first few events while running alongside, and holding onto the arm of, his guide. But that technique was causing him bad shoulder pain from the constant limited motion. He and his guide are now connected by each holding one end of a towel, giving him more room to run freely. He also wears a sign on his back indicating that he's a blind runner so others know to give him a bit more space out on the course.
Molter, an accomplished marathoner, triathlete and Ironman competitor, had previously trained and guided four blind athletes through triathlons, 10-kilometer races and half Ironman competitions. She's also encouraged friends to serve as guides for blind runners.
"Runners like EJ are truly exceptional athletes, certainly more exceptional than I am for sure," she said. "I'm just so grateful to help EJ in his quest to raise awareness, and I'm very happy to give something back by serving as his guide. Everyone has something to give, and even the littlest things can make a big difference to others."
His last marathon this year is scheduled for Dec. 2 in Las Vegas. It takes Scott an average of between 5 and 5 1/2 hours to cover the 26.2-mile distance. He figures it will be dark when he crosses the finish line, so he hopes to finish the marathon with his blindfold off.
"When I cross the finish line, it feels so great -- it's the best feeling in the world," Scott said. "I hope my story not only brings awareness to choroidermia, but also encourage others to volunteer as a guide for blind runners."
(Staedler is assigned to the 440th Airlift Wing public affairs office at Pope Field, N.C. He wrote this article while on a temporary duty assignment supporting Citizen Airman.)
