This Boston Marathon Runner is Not Defined by Deaf-Blind Status

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Crossing the finish line of any marathon is a tremendous athletic feat. But doing so without full use of your eyes and ears? It is nothing short of amazing, and it’s the goal of self-proclaimed “adventurer” Bill Barkeley at Monday’s Boston Marathon.

Team Eye and Ear 2014

Team Eye and Ear 2014

Bill lost most of his hearing before the age of 5 and was later diagnosed with Usher Syndrome, which is the leading cause of deaf-blindness. The progressive disease leads to the loss of both hearing and vision, something which Bill describes as “a journey into darkness and silence.” Unfortunately, there are no treatments or cures for the disease at this time.

Running for a Cause
Bill’s syndrome won’t stop him on Monday when he runs the Boston course alongside his 101 teammates on Team Eye and Ear. The team runs in support of Massachusetts Eye and Ear, the Harvard Medical School teaching hospital and home to the world’s largest vision and hearing research facilities, which treated more than 75 people for specific hearing and vision issues after last year’s Boston Marathon bombing.

“When many think of the bombing, they immediately think of the loss of limbs,” Bill says. “Truth be known, there are many more types of injuries that will follow the people that were there that fateful day.”

The team has raised more than $2.8 million to benefit research and patient care at  Mass. Eye and Ear since 2006, and Bill’s hope is to help the hospital continue to assist the bombing victims as well as find a cure for Usher Syndrome. (To support the cause, you can visit Bill’s fundraising page here).

Bill and his guides before the 2012 Boston Marathon.

Bill and his guides before the 2012 Boston Marathon.

The Senses Connection
Beyond marathon running, vision loss affects everyday challenges, from walking to dialing a smartphone to coordinating clothing choices. Hearing loss, which Bill describes as an “isolating” condition, means greater hurdles when it comes to spatial orientation, detecting emotional tones in people’s voices and simple joys like listening to music.

Thankfully, hearing and vision technologies continue to improve, helping level the playing field a bit more for people like Bill. He recounts what it was like when he was finally able to hear music via Bluetooth in his digital hearing aids: “Music is stunning. Imagine listening to Billy Joel’s ‘Piano Man’ and actually hearing the different instruments and the voice. It blew me away to hear in new ways.”

Guiding Force
With his significant hearing loss and 20 degrees of field of vision (out of a possible 180), how will Bill navigate the course during Monday’s marathon? He has the help of his son Brian, who will serve as a guide runner and lead Bill from his 2 o’clock angle. Bill will also wear special hearing aids with a transmitter that sends sound from Brian directly into his ears.

“I use the road and concrete gutter as my line. It guides me,” he says. “I have to work hard to take it all in, process it and keep the pace with others both mentally and physically.”

Three supporters that will be rooting for Bill come race time are VSP Vision Care, TruHearing and Nike Vision. VSP and TruHearing are Team Eye and Ear sponsors, and Nike Vision donated sunglasses to every team member to wear on race day.3 logos 2

Best of luck to Bill and Team Eye and Ear! Want to see more about the race? Check out our follow-up blog post here.

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  • nancy says:

    I met Bill a couple years ago at a wedding, had a wonderful conversation. I noted later that I had spent the whole talk in touch contact with him—like my hands on his shirt front, and he touched hands back. I had known him when I dated his oldest brother in HS and a bit more, but didn’t know anything was wrong. We talked of all the usual things people catching up do, and he told me some of the story of usher syndrome. would love to have him as a friend and neighbor

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