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.”