What Will He See On This Ride?

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.

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!

What We Can See Because of Ken Bukowski

During a conversation with an acquaintance of mine, I mentioned that I served as a "captain" on tandem rides for the blind and visually impaired.

This acquaintance, who makes workplaces ADA-compliant, wasn't surprised.  "Really, the only thing a visually-impaired, or even a blind, person can do that you or I can't is to drive a car," she declared.

Still, I must admit that of the ways one can become disabled, losing my sight is the one I fear most.  Even after hearing my acquaintance's words, and similar claims from others who are, or who work with people who are, visually impaired, I have a difficult time imagining how I would do almost anything I do now without my sight.

Certainly, I don't know how I'd ride (except, of course, on the back of a tandem) or how I might have worked as a bike mechanic. There are, however, people who have assembled and fixed bikes without the ability to see.

From The Buffalo News

One of them was Ken Bukowski.  Until September, he'd worked at Shickluna Bikes and Darts in Buffalo, New York.  For more than three decades, he assembled and repaired bikes, and gave customers lessons on how to shift gears and ride safely.  He was so good at all of these things that some customers were unaware, at first, that he was blind.  According to shop owner Tom Pallas, "many times he steered us to a missing tool because he heard where we had set it down."

Left sightless from a gunshot wound to the head at age 24, Bukowski went to the Blind Association of Western New York (now the Olmsted Center for Sight) to learn how to type.  Soon, he was enrolled in the Association's pilot program for bike repair.  When he completed that training, the Association convinced Pallas to hire him.

They worked--and-- rode together.  In fact, they pedaled the Five Borough Bike Tour on a tandem in 1987.  The thing that made him a good rider is probably the same thing that made him a good mechanic:  "concentration", according to Pallas. 

In addition to fixing bikes, riding and organizing rides, Bukowski did other things people don't normally associate with the blind:  bowling, skydiving and cooking. About the latter, his wife, Elaine Filer, said that because he didn't work much during the winter, by the time she got home from work "he'd have almost the whole dinner prepared."  

She was not the only one to benefit from his culinary skills:  For many years, he also volunteered as a cook at the Little Portion Friary, a homeless shelter in Buffalo.

He finally stopped working at the shop because of his bout with cancer, which claimed his life on 11 November.  He was 65.  Whether or not you think he lived a long life, you can't deny this:  He left an example. That, certainly, is something any of us, regardless of our abilities or disabilities, can do.