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Walking a Mile (or More) in Their Shoes

The Healey parentsThere’s an old saying that, depending on who’s doing the quoting, goes something like this: “You can’t really know a person until you walk a mile in his or her shoes.” That’s certainly true when it comes to grasping what it means to lose one’s eyesight to a retinal disease.

The biggest mistake many people make is assuming that, overnight, the affected person is enveloped by darkness. In reality, the loss of sight is progressive; at the very least, it takes months, usually years and sometimes decades. The Foundation Fighting Blindness is, of course, working hard to find treatments and cures that will eventually eradicate vision loss altogether.

But until then, it helps when someone affected by a retinal disease not only describes vision loss, but actually shows what it’s like. Today’s technological tools are enabling a growing number of people to do just that, and, as something of a representative sample, I put together an online piece for FFB’s newsletter In Focus earlier this year titled “Seeing Is Believing.” It features three brief profiles of extraordinary people and examples of their work.

Erin Howell, creator and star of the “Erin Going Blind” YouTube series, describes the ups and downs of losing her eyesight. Marc Muszynski, teaming up with a friend from the aggregator website Buzzfeed, created the video below as well as two others—of him navigating his hometown of Los Angeles and flying an airplane aided by a pair of electronic glasses.

And Diane Healey, a resident of Northern Ireland, worked with her brother, Nigel, to create a series of startling slider images showing what life looks with and without retinitis pigmentosa.

But enough from me. I encourage you to check out “Seeing Is Believing” so that you can walk a mile in Erin’s, Marc’s and Diane’s shoes yourself.

Pictured, top: A with-and-without-RP slider image from Diane Healey’s website my life with RP.

5 Responses to 'Walking a Mile (or More) in Their Shoes'

  1. Md Mazharul Anwar says:

    My daughter 5.5 Years old BLIND ROP Stage 5 in both eyes, and searching any option has to improve her quality of live.

  2. Parimal Mehta says:

    Having lived my life with Ushers Syndrome and blindness for more then 45 year, I know the plight of parents having their child with visual diseases. It will be a challenging task, but instead of looking aggressively for cure and other treatment, try to teach child to think positively and setting up the goal and help them to achieve it. Living life with disability , and think and taking pity from other will drain ones life charm.

    In spit of having blindness since young age, I become engineer, with double master’s in Engineering field. Yes had tough time, but could make very good friends who can help me in my studies and day to day activities.

    So advice to all young visually challenge people to take up challenge and achieve that. Yes I am not making money compare to my level of education. But satisfied that I could do something on my own and also try to give back to society in the form of education, motivation, inspiration, and guidance to kids and needy youngester.

    • Ann Marie Durako says:

      Hi Parimal, I have a friend whose son is losing his eyesight due to RP. He is very depressed at 31 years of age. When I saw you are an engineer, I was wondering if you would be willing to speak with him as he is an engineer. Right now he doesn’t see anything positive in his future.
      Thank you,
      Ann Marie

    • EE-dee says:

      I agree with Parimal Mehta. I’ve been losing vision for over 25 years. Your child is going to learn from you how to think about himself & how to deal with life. If you’re constantly acting like he’s not good enough the way he is, & continually just waiting for a cure, he’s not going to feel very confident about himself as he is. Encourage him to work hard & play hard & set goals & achieve them. Advocate for him in school so that he gets all the assistance he needs & is entitled to. Make use of networking & get him involved with successful role models.

  3. Elle Boukhtin says:

    I’m 32 and have been struggling with my deteriorating Vision my whole life. I have retinitis Pigmentosa and I wish that I could show my friends and family what it is like to look through my eyes. RP has kind of like the opposite effect… I only have very limited tour vision in one of my eyes that I can only see centrally. The generation has caused my vision to continually get worse and it will never Get any better. I found a bit of Hope with the networking of other visually impaired people.

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