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The Challenge

A Series on How People Affected by Retinal Diseases Adjust to Continual Vision Loss

John Corneille – Out of the Closet

John Corneille and his wife, Pam, get ready to hit the road on their tandem bike.Seven years ago, John Corneille’s world was crumbling. “I almost hit rock bottom,” the 54-year-old recalls. He’d recently left his law firm, his marriage was in jeopardy, and he could no longer hide that he had retinitis pigmentosa. “It was bad enough where I had to check myself into a school for the blind, in Chicago. I stayed there, from January to May.”

And that’s when his life turned around.

“I learned how to use reading software, how to use a cane, how to type,” John explains. “So that rejuvenated me—personally, emotionally, mentally—and made me realize I can lick this thing.”

That “thing” is what millions of people with retinal diseases face—a loss of eyesight that gradually strips away one’s vision-dependent abilities. Driving, for instance, or playing sports. John not only returned home to his wife, Pam, and their two daughters rejuvenated; he joined the Foundation, where he became an exemplary fundraiser and, eventually, director of its gift planning program. All because of his faith in FFB’s ability to facilitate treatments and cures for retinal diseases.

But until that day arrives, John, who lives in Dekalb, Illinois, needs to function. For him, that began with letting those outside his immediate family know about his RP. “Denying it, becoming more reclusive, not going to social engagements for fear others would find out—that wasn’t good for me,” he says.

It was, however, understandable. Even though John was diagnosed with RP at age 5, his parents chose not to tell him. “They didn’t want it to limit me, which I respect,” he says. And, for a while, it worked. John was a straight-A student and varsity athlete. But he had problems seeing at night games. At age 18, during a routine eye exam, he discovered why. The doctor let slip that he had RP.

It wasn’t until John’s junior year in college that his eyesight was so bad, he had to quit playing organized baseball and football. “That was very difficult because sports had been such a big part of my life,” he recalls. “And I was still trying to play intramural sports to fill the gap. When I went to law school, I played intramural football and ended up breaking a bone in my hand, clearly because of the vision loss.”

Concerned about his burgeoning career, however, John did not share his RP with colleagues and friends. And he didn’t see the need. He could still drive and, because he had central vision, study documents. But during the late 1990s, those tasks became serious challenges. Driving at night, as he recounted in a blog post last year, was so dangerous, his law partners recommended strongly that he stop. And work demanded the use of visual aids.

John was beginning to detect a pattern. “With gradual vision loss,” he explains, “you tend to think, ‘Well, at least it won’t get any worse.’ You get to the point where you’ve adjusted, made accommodations in your work and life. And then you realize it is getting worse.”

And, as it got worse, John became more reclusive, putting a strain on his family. Although he was depressed, “I’m not a counseling-type person, and I don’t take meds,” he says. “I thought it was what weak people do. But I’ve changed my mind. I now think counseling and talking to people is good.”

John’s version of “therapy” was to stop hiding his vision loss and dive into the Foundation’s mission—which includes speaking before community groups and attending FFB’s annual VISIONS conference, where, for many with retinal diseases, “it’s the only time they feel normal,” he says.

Without such support, John doubts he’d be able to handle continuous vision loss. Lately, he says, “I can’t sit at dinner and see anyone across from me, even if it’s good light. I can’t see the face of my five-month-old granddaughter. A year or two ago, I at least would have been able to make something out.”

As much as he struggles, John is able to reacclimate. Case in point: After he quit driving, he rode his bike to work instead. Then he had to give that up. But a couple summers ago, he invested in a tandem bike. “I ride it with others,” John says. “Not too long ago, my daughter’s boyfriend and I went on a 27-mile trip. He was the pilot.”

Pictured, above: John Corneille and his wife, Pam, get ready to hit the road on their tandem bike. 


20 Responses to 'John Corneille – Out of the Closet'

  1. Kathy says:

    Way to go ,John. I too have RP. My husband and I are considering a tandem. It would feel good to bike again. I still run alone since we live in the country, but will have to give that up as well some day. Always preparing for the next loss, aren’t we?

    • John Corneille says:

      Hi Kathy: Sorry it took me so long to respond; vision loss and computer technology do not always go well together for me!

      The tandem bike, although “pricey” and a bit of a process to find, has been a lot of fun for me. It gives me much needed exercise as well as simply an outlet to get “out and about” somewhat.

      Thanks for reading my post and taking the time to respond. If you want to communicate with me in the future, probably best to do so by e-mail at jcorneille@fightblindness.org.

      Thanks again!

      John

  2. Rather wonderful posting. I just now found your blog post and wanted to point out that We have absolutely cherished browsing your blog site posts. In the end I shall be following with your rss and i also we do hope you compose yet again soon!

    • John Corneille says:

      Sorry it took me so long to reply, vision loss and computer technology do not always work well together for me!

      I will likely be posting again, but not sure when. If you would like to communicate directly with me, it is best to do by e-mail at jcorneille@fightblindness.org.

      Thanks again for reading and responding!

      John

  3. Rosemary V says:

    I loved the article. My son (age 40) has RP & deafness: Usher Syndrome. I worry cuz recently he had trike accident, & broke his collar bone (clavicle.) He’s had a few accidents over the years. I think it’s dangerous out on the roads but he is stubborn. What’s ur opinion? Thanks for sharing.

    • Eye on the Cure says:

      Hi Rosemary,

      Thank you for commenting. Unfortunately we are not in a position to provide individuals with advice on personal lifestyle choixes. We advise you and your son to visit an eye doctor or retinal specialist and get their opinion on the matter. We wish you and your family the best during this difficult time. Please let us know if we can assist further.

    • John Corneille says:

      Sorry to hear about your son, although I certainly can relate to his stubbornness as well as your concern, as his mother, for his safety. It is hard for me to imagine how he rides a bike alone, on the roads, with vision loss AND hearing loss. Years ago I stopped riding alone, thus the recent purchase of the tandem seen in the blog photo. I still walk alone, but rely a great deal on my hearing to stay safe and oriented.

      I do not have any magical answers for you; just try to remain supportive of your son – which doesn’t mean you can’t remain a mother concerned about his safety!

      If you wish to communicate directly with me, best to do so by e-mail at jcorneille@fightblindness.org.

      Thanks again!

      John

  4. Prasad says:

    Its inspirational John. I am suffering from RP. Its little harder during darkness. I can manage too bright light using sun glasses. Many people around me make fun of telling, its not summer! I have stopped caring for their comments. Because, its me who should be comfortable. Is there any way can delay the blindness? I am 39 yrs. I don’t want to get in to blindness so soon……………

  5. Charlie Trombetta says:

    Hi John. It is amazing how much alike our experiences are. I was diagnosed at 18 and will be turning 60 this March.I have limited vision in left eye only. I am constantly looking for ways to keep productive. I too had to stop playing baseball, couldn’t handle those night games. Did my share of hiding my disease, felt it showed weakness, especially to my children. I am learning everyday how to adapt. Thank God I have an incredible wife and family for support. I want to get involved but not sure how to go about it. Stay well to all my friends!

  6. mohammad says:

    hello
    my wife suffer of retinitis pigmentosa.
    is it any way to cure this ?
    plese give me some advise.
    thank you .
    yours
    mohammad

  7. Kimi says:

    Dear John,

    Your story hits close to home. I too have RP. When I found out I had to give up driving and my 3 mile walks each day. My world collapsed. I was a divorced single mother and I was always the “Do-er” of the family. Suddenly I became unemployed and unable to drive. Money became an issue (because I didn’t have any). I have found that I can do anything as long as I am willing to search for a different route when approaching my goals. I have started an online business and work out of my home now. It is coming along. I am currently looking for indoor exercise equipment as I need an physical outlet for my energy. Thank you so much for sharing your story.

    You made my day John.

    • John Corneille says:

      Sorry it took me so long to reply, vision loss and computer technology do not always work well together for me!

      I, too, have met many people, through the Foundation, with similar stories and backgrounds as me and you. I encourage you to get and stay connected with the Foundation, for a variety of positive reasons. Also, if you would ever like to communicate with me directly, best to do by e-mail at jcorneille@fightblindness.org.

      Thanks for reading and responding to my blog post.

      John

  8. Pat Bonser says:

    Dear John and Pam,

    Really enjoyed the article and the photo of you both on the new bike.

    Uncle Rod and I are so proud and happy for both you and Pam for what you have accomplished!!You have a beautiful family and grandchildren. You are helping so many people to not hide their problems, but make lemonade out of lemons. FFB has made a huge difference on all your lives and many others. Keep up the good effort. Aunt Pat and Uncle Rod

  9. Steve Postlethwait says:

    Thank you!!! John,
    I also have RP I’m 45 years young. I never told anyone about it,I would rather appear to be clumbsy
    than a cripple. Most of the time friends would make fun of me ,night was the worse I would pretend to see and just go along with what ever was being said. I went up to visit family. were they lived had no street lights. they played a joke on me and left me out in the woods. I managed to find my way back blooded bruised ect . that’s when I finally came out of the closet.

  10. Angie says:

    Thanks all of you for posting.
    I am 53 with RP. Diagnosed at age 37 it answered many questions for me as to why I was so clumsy, running into things and having trouble driving at night. Since then the disease has progressed in several areas, continued loss of vision field, development of cataracts and now macular edema. That’s rough when all you have left is your macula. It’s hard to give in to a disease when you have always been so active and outgoing. But for me it is time to change course. I can no longer fight against it but I will not allow it to keep me down. It’s just time to find other ways to do things. Thankful for a great big God who has never left me.

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