By Maurie Hill

I believe it was 2002 when I met Charlie Collins for the first time at a small trade show in Connecticut. Chatting about accessibility technology, it didn’t take long to reveal that we both have Stargardt Disease (juvenile macular degeneration) and at least 3 out of 6 affected siblings. At the time, neither of us carried a driver’s license but he confessed to riding a motorcycle to his Vision Dynamics store, and I was still enjoying these Vermont country roads from my humble moped. Having normal peripheral vision and still some good spots in the center, “they” just couldn’t take that freedom of the road away from us just yet. Though I didn’t know it at the time, we were both fans of the Grateful Dead. So both being children of the sixties and seventies, I had to read his recent book, “Tripping Into the Light” to see what other experiences and adventures in low vision we had in common.

Great parents, red and white checkered tablecloths, and piling into an overstuffed station wagon to head to the summer’s ocean waves were scenes I was familiar with. But years before I saw my first optometrist, let alone retina specialist, Charlie and his family had to squeeze in many trips to Mass Eye and Ear to figure out what was going on with four of the kids’ vision. At 9, he still had dreams of being a detective, jet fighter pilot, and race car driver. But it was eventually revealed in the next few years that the doctors couldn’t fix this problem of his degenerating vision. At 13 when the definitive prognosis and certificate of legal blindness was delivered to him, he felt his fate was sealed. Under his happy-go-lucky exterior, that feeling of being marked “defective” affected everything he felt and did for many years to come.

Unlike those of us who were adults with a college education, some degree of self-worth, and many good driving years behind us before such a life-changing diagnosis, a rambunctious 9 year old couldn’t know how to face obstacles and modify his goals to fit his passions in a constructive way. Without support and encouragement in the school system, he lived life in the peaks and valleys – between fulfilling their prophecy and proving them wrong. In between becoming a successful businessman, several times over, Charlie visited valleys he never plans to see again. Places of undesirable despair and self-loathing were the perfect recipe for increasingly dangerous behavior. His mind couldn’t stop those feelings of being nothing when he seemed to have everything.

He chased money, acceptance, and perfection. He could never find a way to mix his passion for high speeds on anything with a motor and the reality of his visual acuity. Perhaps his climbing on top of a high speed train on the way back from a Grateful Dead concert was an attempt but so close to fatal several times over. Addictions and rehabilitations ran their course as his wife, children, parents, and siblings struggled to unlock the key to his pain. In Charlie style, he had to dissect it and figure it out himself.

Instead of wasting words of regret and remorse only he could know, he wants the reader to learn and be encouraged by his final, lasting triumphs. He continues to say “my life has been perfect”, meaning he couldn’t be in the place he is today without every negative and positive twist and turn that wove the fabric of his compelling life.

Once started, I couldn’t put his book down, listening to exactly what he was thinking with every devilish adventure and fateful turn. After completely embracing rehabilitation and finally, love of self, lost at such a young age, it is wonderful to have Charlie back. I’m sure his family sees the smiling, happy-go-lucky guy that they fell in love with, but now he is completely understood, even to himself. And I am proud to call him my friend.

You can order Charlie’s book from this web page:

To listen to it, I selected the ebook edition (accessible pdf) and used the Voice Dream Reader app on my iphone.