My bike is my friend. Even when I was 20 years old, with 20/20 vision, I didn’t feel compelled to buy my first car when I could get wherever I needed to go on my 10-speed Motobecane bike. While summer jobbing it in Bar Harbor, Maine, I rode it to work, on all the carriage paths, and if I remember correctly, may have even ridden it up Cadillac Mountain one morning to catch the sunrise (OK, so that might have been a dream). I’ll have to look at some old photos for proof. Anyways, my Motobecane and I go further back than any other toy I own, and it’s a utilitarian one at that.
At summer’s end, I did end up buying my first Dodge Dart and drove across the country, experiencing another level of freedom whose memories can never be taken away from me. Giving up the car keys at age 40 due to Stargardt Disease was a fairly clear cut decision; a pill that was not too hard to swallow, though it definitely has had its share of inconveniences. I was once again alone with my bike.
After moving to southern Vermont, in the years preceding the birth of my daughter, I explored every road within a 20-mile radius. I purchased saddlebags to carry groceries and hold interesting yard sale items. A few years later, while teaching my daughter Arden good road safety, I used a new, slower, safer, fat-tired Trek… a bike that I never really warmed up to. With its upright position, I always felt like the Wicked Witch of the East. But a flat tire on the Trek put me back on the Motobecane this summer, and has sparked a renewed interest in biking.
But that’s not the only reason I’m back on the saddle. No, before you get too excited, it’s not that my vision has changed since my stem cell treatment; I realized that the only thing allowing me to continue riding at all are those few good cone photoreceptors that remain in my best eye. What if I lose those? Though my normal peripheral vision is handy dandy (and critical) in detecting vehicles at my side, the cone cells in the very center help detect those all-important sticks, grates, and curbs.
Case in point, I recently rented a bike in Washington, D.C. I came upon a wooden boardwalk along the water and noticed that the people ahead of me were lower than I; a few steps below me as a matter of fact. Had it not been for those people, I’m not entirely sure I would have seen those steps in time, probably leading to a nasty spill. Yet the decision to stop biking may not be as clear-cut as giving up car keys. A car is a deadly weapon at all times, no question. With a bike, except when you find yourself in strange cities, you likely have a little more control on the route you take and the conditions in which you ride. This is different than the mentality you would usually have when driving the car, when you need to get from Point A to Point B in x amount of time.
This very topic came up while socializing with some other Stargardt veterans at the Visions 2013 conference. Biking gives us so much pleasure, utility, and independence… but when is it time to stop? No one has the exact same missing photoreceptors, so blind spots and their degree will vary. Curiously, my eyes are not tired after riding. Though I’m paying close attention, when I go places, familiar roads have a degree of predictability. And I tend to enjoy the scenery in a general sense, and do not try to pick out the type of tree or flower as I pass by. I’m not reading signs, so I’m avoiding stress upon the few cone cells in the center.
I’m curious about those of our readers with Retinitis Pigmentosa (RP) and your ability to ride bikes. In contrast to my condition, you lose your peripheral vision first, with the loss moving toward the center of the eye. So I wonder, is it the diminishing field of vision that occurs before central vision loss that makes it clearly unsafe to ride at a certain point? Or is it a murky combination of factors, as it always is with Stargardt, macular degeneration, or other such conditions that only affect the very center of vision?
Well, for now, I am still riding despite three flat tires so far this year. When the second flat tire occurred in the middle of a ride, leaving me bikeless, I wondered if that was a sign. After fixing both bikes back home, a feat I hadn’t tackled in 30 years, the other tire on the slower Trek went flat overnight. I wasn’t sure if that was another sign to quit biking, or was it perhaps a sign to get on the bike I really like and enjoy every second?
My Motobecane smoothly motored me to work this morning in no time flat. Tomorrow, I’m trying a rail trail. I’ve never been on it, but I will let my friend ride ahead. I’ll bring a spare tube and be sure to thank those cone cells until their dying day.