In my university, there was a writing instructor who, on the first day of class, told students to imagine they had one hour left to live. What would matter at that time? What secrets would you reveal? What would you want to do?
The instructor didn't specify how you were to "die": actually, he didn't care about that. What he really wanted was for students to think about what really mattered to them, and to strip away what he called "emotional blackmail."
I got that assignment. As you might expect, I wrote some silly and pretentious stuff. But I also wrote about a couple of things I hadn't told anybody up to that time of my life. I recall that one thing for which I was thankful was that my senses were still intact. Even then, I feared going blind or deaf, or losing a part of my body, more than death itself, as I do now.
Hmm...If he really wanted to rock my boat, perhaps he should have told me to imagine I would go blind in an hour. What would I want to see?
Jason Folie is doing that assignment, if you will. The 35-year-old Minnesota roofer and remodeler was diagnosed with chroideremia, a rare degenerative retinal disease. Its sufferers, mainly men, lose their sight over a period of time. For the moment, Mr. Folie deals with night-blindness and a loss of peripheral vision, though his central vision is still clear.
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| Jason Folie, taken by Krista Kramer |
When he was first diagnosed he, understandably, got depressed. "I didn't see the point of settling down because I didn't want someone to take care of me," he wrote on his fundraising page. "I didn't see the point of having a family if I couldn't see what my kids look like." But, he explains, he found hope after participating in a research trial. "I think there is something I can do to help," he says.
One of the things he's doing involves a bike ride. A long one: 2900 miles (4700 kilometers), to be exact. On his birthday--Monday, 7 January--he plans to embark from San Diego, California and pedal the Southern Tier Trail (developed by Adventure Cycling Association to Saint Augustine, Florida. He expects to arrive some time in mid-March. His fiancee, Krista Kramer, will follow him in a camper and stop in towns along the way to meet with the media and raise awareness for the cause.
After the ride, they will hold a fundraising dinner in Waseca, their hometown. Guests will wear blindfolds as they eat.
Folie hopes that his and Kramer's efforts will raise $100,000. He's donated $35,000 of his own money, hopes the rest will come in the form of pledges, which can be made here.
Whatever comes of his efforts, let's hope it's not the last thing he sees!
