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My Race to Cure Blindness

Michael Stone in a bike race Although a disease called cone-rod dystrophy has rendered me legally blind, I’m known, in certain circles, as a world-class triathlete. I swim as well as bike and run (often on mountain trails). I began competing before my vision deteriorated, and I’ve since learned to use my other senses. In fact, I like to think of my feet as my eyes. I take an awful lot of steps, and I don’t land heavily. If I’m on a trail and step on something that doesn’t feel right, I hop off, then move quickly forward. It’s usually on the run where I beat my competition.

But you know what? I can no longer shop for groceries.

Before I explain why, I’d like to mention a book I wrote and published two years ago. It’s titled Eye Envy: Perspectives Into Vision Loss. And while it tells my story, it also features the stories of more than a dozen other people, of various ages and walks of life, affected by retinal diseases. They’re among the hundreds I’ve met in my travels worldwide, as a triathlete, coach, speaker and fundraiser for the Foundation Fighting Blindness. In fact, the proceeds from the book—which you can order, in print, on my website, or as an e-book—go to FFB.

 

 

I got involved with the Foundation almost 10 years ago, after I’d been diagnosed with cone-rod dystrophy at the age of 35. Before that, I knew that I had vision problems, but it wasn’t until I hooked up with Dr. Gerald Fishman, a Foundation-funded researcher and clinician, that I discovered the cause. Since then, I’ve dedicated not only my book sales to FFB, but I’ve co-hosted fundraising events in both Florida and Chicago with my parents, and I co-founded the Race to Cure Blindness program, through which athletes leverage their competitions to fundraise for FFB.

I wrote Eye Envy for a couple of reasons. In every way possible, I want to help FFB raise the considerable amounts of money necessary to fund the lab, pre-clinical and clinical-trial work aimed at providing people like myself with treatments and cures. My younger brother, Russell, has also been diagnosed with cone-rod dystrophy. And our paternal grandfather, once a larger-than-life Chicago attorney who loved driving his Cadillacs, playing golf and watching the Cubs and Bears — we watched him deflate in his later years, as the effects of age-related macular degeneration robbed him of his sight. He died just two months before I ran my first race for the Foundation, in 2005.

Now, I’m not married, and don’t have children, but I have five nieces and nephews. And these diseases I’m talking about — they’re hereditary. So, yes, in many ways I’m doing this for myself and my family.

But I also wrote Eye Envy because, over the past decade, I’ve met truly inspirational people who, despite their conditions, live fulfilling lives. And, like me, they once experienced the loneliness and despair that accompany a retinal-disease diagnosis. More than anything, you need to know you’re not alone, and my book is a means of offering the support so many of us need. And for the sighted community, it hopefully provides both inspiration and a glimpse of the low-vision world.

So, back to the groceries. When I wrote Eye Envy, I had some trouble with daily tasks, but not much. A few years earlier, in fact, I was able to drive. My vision, however, has deteriorated significantly in the last year alone. Even in optimal conditions, my vision is twice the legally blind limit.

So shopping in a grocery store — trying to get around others, seeing signs, reading labels — is no longer possible. An Ironman competition is easier for me to navigate than a Whole Foods. And because I live by myself, I have an assistant do it.

Food shopping is just one of many tasks that have become difficult for me. So I’m more determined than ever to help fund treatments and cures. But I also consider myself fortunate. Without this condition, I would not have met many of the people I have and made the same kinds of deep, meaningful connections.

I’m also confident enough in FFB’s abilities that I can imagine the following happening in my lifetime – an eye doctor, after delivering a diagnosis to a patient, saying, “OK, this is what you have. And this is what we’re going to be able to do for you.”


14 Responses to 'My Race to Cure Blindness'

  1. Antino Knight says:

    Thank you for being an inspiration. I was diagnosed with rod cone dystrophy about a year ago. To me it seems to be progressing fast and I have to adjust each step of the way. How did you deal with it in the beginning?

    • EyeOnTheCure says:

      Thank you for reaching out, Antino!

      I was diagnosed when I was 35 (I am now 44). At first, I was in utter shock, but with a sigh of relief. I struggled through life being misdiagnosed. To have a reason why I could not see better was a relief. However, I was also in a major state of denial that this was a degenerative disease. Perhaps I didn’t hear the doctors correctly, as there were three of them sitting in a very small room. Perhaps they didn’t explain the degeneration correctly. But the initial feeling of shock was primarily a sentiment of acknowledging a long and difficult past. I was not looking to the future of greater vision loss.

      Even if I had, I am not certain, nor were the doctors, what that would mean, as they gave me a range of vision loss. On the lighter side, I would be legally blind (whatever that meant) to totally blind. However, that wasn’t told to me until almost two years after my diagnosis. That was the beginning. I really didn’t do anything to adapt, other than a lot of fundraising. I just acted, as you suggested, by “adjusting each step of the way.” This had much to do with writing my book Eye Envy.

      What I do now is far different. I still adjust each step of the way, but my education is far greater. I will say that I would have done some things a little differently during those initial years, but the truth is, dealing with the emotional process was far greater. I had put my time and energy into “what I can do versus what I can’t.” In fact, I really didn’t focus on the “can’t” part at all. This hurt me a bit in my everyday life, as many of life’s tasks became very difficult.

      It would seem that not only was I confused by what the future held, but those around me were even more so. There were adaptive techniques that I could have applied immediately, in an effort to make the rapid sight loss that was to come much easier. I now try to be one step ahead of the sight loss.

      I would happily share the specifics of this if you would like to reach out to me directly. You’ll find a contact link on my website (www.michaelstonefightsblindness.com). For now, I wish you well on your journey, and, as I said, I am more than happy to help you through it. Warmest wishes, Michael.

  2. Jim beaver says:

    I have had rod and cone dystrophy for 18 years. The disease progressed just so far and stopped. My eye doctor glued a magnification lens (x7)to the right eye of my glasses. I read quite extensively with this (my left I closed). It works pretty well. Good luck.

  3. Tupac says:

    Heya we are for your primary time below. I stumbled upon the following panel and that i in discovering It genuinely helpful & the item helped me away lots. I hope to make available one important thing rear plus guide other people just like you forced me to be.

  4. dian says:

    hi,I was diagnosed with rod cone dystrophy about 5yrs ago when I was 19 yrs old. althiugh it was very diffecult, I’v graduated this year with very good gpa . because of my condition many companies did not accept me although i did very well in the interviews. it takes alot to overcome it and to accept it. I have a brother who is younger than me and now he is first year student. he could not focus in his study and he is very depressed. i dont know how to deal with that.
    please help with that.

    • Eye on the Cure says:

      We focus on research for retinal diseases and do not have much to offer on lifestyle resources. There are definitely organizations out there that can provide you with information though. Here are a few:

      http://askjan.org/
      Job Accommodation Network. This group focuses on providing the resources and information for those with disabilities to be productive and work.

      http://www.afb.org/default.aspx
      American Foundation for the Blind can also be helpful in this area.

      Also try:

      Lighthouse International
      http://www.lighthouse.org/

      Nation Federation of the Blind
      http://www.afb.org/default.aspx

      We hope these resources can point you in the right direction. We wish you and your brother all the best.

  5. Just wanted to say what an inspiration it is that you do what you love! I have always loved photography and have decided to not give up on it despite being a visually impaired person and having cone dystrophy. I am lucky as my sight is stationary at the moment and I am very lucky that my hearing, being very good, compensates for my bad eyesight. I am worried about it deteriorating a lot further but I think that I want to try to enjoy my life as much a I can before I can see a lot worse. I have been very lucky also to have an amazing family and boyfriend to support and encourage me which I find is my best motivator I suppose. I hope they find a cure soon. I find cat 4 sungalesses the best for me and couldn’t get about without them!

  6. Kathleen says:

    Thank you for the inspiration! I found this by googling “retinal dystrophy cure.” I was recently diagnosed with macular dystrophy and told “but don’t worry-you won’t even start noticing any vision changes for about 5 years” by a University retina specialist! I immediately noticed visual deterioration, again got a pat on the head from the same doctor, and went for a second opinion to a regular ophthalmologist where I was told I may have a retinal dystrophy.Now waiting for an appt. with another retinal specialist. Needless to say, this is a devastating diagnosis. Though not a true athlete like you, I have always been active with kayaking, hiking, and working in my profession. It helps to hear that my life will not be over, because I keep feeling like this is a terminal diagnosis. It’s not. I want to be as independent as possible. I don’t know how I will learn to do that. What or who helped you the most in learning to navigate life? For instance, how did you find an assistant? I will definitely get your book, thanks for writing it.

    • Eye on the Cure says:

      Hi Kathleen,

      Thank you for your comment. We encourage you to reach out to Michael directly through his website. There is a “Contact Me” section where you can pass along your questions and concerns. http://www.michaelstonefightsblindness.com I hope this is of some help to you. Please let us know if there’s anything else we can do.

  7. kathy maloy says:

    hi my name is Kathy and I was diagnosed with cone rod dystrophy at the age of 40 and now I am 50. My eyesight has gotten much worse within the last year. Everyday tasks are getting challenging. I can’t drive anymore. It is very hard to read and I know it will come to a time that I won’t be able to read at all. you see my mother has that same disease and I see the problems she has. I also have a hearing problem which makes things a little more challenging. I am hoping that they come up with a cure sooner than later.

    ..

    • Eye on the Cure says:

      Hi Kathy,

      Please continue to check the Foundation homepage FightBlindness.org and our blog for the latest updates on retinal disease research. If you have a specific question, please contact info@fightblindness.org. We wish you all the best.

  8. Francey says:

    Thank you for your inspiring article. I am the mother of two sons with Cone Rod Dystrophy. My son is 47 and has been advised to have cataract surgery. Neither doctor can assure him that this trauma to the eye will NOT exacerbate vision loss, both doctors feel the removal of this cataract (which has been slowing growing for 25 years) will help improve my son’s vision, which is very, very poor due to cone/rod dystrophy and now further compromised by these cataracts. Can you, or anyone who has posted comments to this site, shine any light at all on cataracts/surgery and results positive or negative as a result of the surgery? My son has been legally blind since birth and was diagnosed at the very young age of 7 with CRD. His attitude is and has always been fantastic, regardless of the many monumental challenges facing him at every turn in every stage of life. I’m very proud of him, he is my inspiration. Our family tree has produced not a single case of CRD, my husband doesn’t have it, nor do I. Good luck to you, Michael and to all who have posted such inspiring comments to this site. I feel so lucky to have found this site and Yes, I will be buying your book and look so forward to reading more of your exciting story. I will also tell my son about you. Thank You.

  9. Robin says:

    This response is for Francey. Like your son, I have been legally blind since birth…not due to cone-rod disease but because I contracted toxoplasmosis in utero and it destroyed the macula in both of my eyes. I’m 54 years old and had cataract surgery a year ago because the cataracts were interfering with the limited vision that I had. The outcome has been horrible…a nightmare. My ophthalmologist was so convinced that after the surgery I would have better vision than I’ve ever had but it turned out the opposite. They were all perplexed when they realized my vision was worse. It was only by doing a lot of research online that I found out that there is a powerful connection between the eye and the brain and in cases where a person has been blind or functionally blind since birth, the eye and brain don’t work so we’ll together after cataract surgery or any surgical attempt to “correct” their vision. And…big surprise…when I presented my Dr. with my research, she said “Yes, this makes perfect sense and explains what’s going on with you.” Follow this link to read some of what I found out.
    http://io9.com/the-world-that-only-formerly-blind-people-can-see-476400679/all

    I’d give anything if I’d known this before my cataract surgery. I realize that the cataract needed to be removed but the discussion with my doctor would have gone differently. I’d have insisted that they not implant a lens that would “correct” my vision but one that would keep it as it was…minus the cataract. I hope this helps.

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