When I was a little girl there was an episode of Little House on the Prairie that scared the #$&* out of me, and even turned me into a little bit of a hypochondriac. It was the episode where Mary Ingalls goes blind. To this day I think about that episode and how scary it would be to wake up one morning and be completely blind. My fear is a reality for EJ Scott, a 37-year-old improviser, in Los Angeles, who started losing his vision about 9 years ago.
“I was born with a rare, genetic degenerative eye disease called Choroideremia. My grandfather was blind from it. My aunt and my mother are carriers and me and my younger brother both have the disease and are going blind from it. My sister has two boys and they have it as well.”
A lover of movies and comic books, EJ studied art and grew up dreaming of becoming an artist. Now he is legally blind and uses a cane, but still has some vision. Every day he deals with the fact that one day he will lose his sight completely.
“It’s terrifying and there’s a real panic in me. It’s funny, I hear a lot of people tell me that I’m handling it really well, so I must be putting on some kind of front or something because I’m always sort of freaking out about this. That’s why I’m doing all this stuff, because I don’t want this to happen to me or my family.”
The stuff he’s doing is running marathons to raise money for the Choroideremia Research Foundation. Two years ago, EJ started running for the first time. He challenged himself to train for the Chicago Marathon, and after finishing he got inspired.
“I’m running 12 marathons in 12 states in 12 months and I have to do it blindfolded because the sunlight is really bad for my eyes and will make me go blind faster. On top of that, I’m really sunlight sensitive so it would be painful to even try and run one of these in the daylight.”
How does someone run a marathon blind?
“I have a handful of guides, some friends and mostly relatives, that are athletes and a lot of them are marathoners themselves. So they guide me and tell me, ‘Watch out!’ and things like that. It’s been great, being able to hang out with them and form sort of a bond.”
For me, running is tedious, so I wondered how he deals with the boredom that can come with running a five hour marathon without the distraction of seeing the world go by.
“Who says I don’t get bored? I get very bored. I try to zone out. Only in the last two races have I started listening to music because I usually want to be available to listen to my guides. It’s hard, but it’s not necessarily enjoyable. I would really like to be able to see the sights and see what people are talking about.”
EJ started in January, and is about to run his 10th marathon. So far he’s raised $70,000 through donations and comedy fundraisers he puts on in the cities he runs in. He hopes to double that, to reach his goal of $144,000.
Click here to check out EJ’s website and to donate to The Choroideremia Research Foundation