Keratoconus and How it Helped Me See

Photo: Keratoconus and How it Helped Me See

I was diagnosed with keratoconus, an eye-disease that misshapen the cornea within the eye, in 2003 when I attempted to get my driver's license. Being home-educated, I was never really in a “chalkboard” kind of environment and didn't realize there was something off about the way my eyes worked.

I went to the DMV and during the eye test, the instructor said to look in the view finder and tell her what letters I saw. My response was “what letters?” and we knew something wasn't quite right.

After several back and forth trips to eye doctors and one failed attempt at prescription glasses, I was diagnosed with keratoconus. Because of the way keratoconus shapes the cornea, glasses and regular contact lenses do not provide any correction. However, I was initially prescribed gas-permeable lenses (the materially-hard kind of contact lenses), which did correct my vision pretty drastically. I was able to get my driver's license, however, several months later due to the progression of the disease my corneas were scratched and scarred by the lenses, rendering me incapable of wearing them any longer.

Still, I had a license and continued to drive to where I needed to be for life and work into my mid-twenties. Probably not the wisest activity, but what are you gonna do in our world where most employers require reliable transportation and a license? In my mind, I had to drive if I wanted to survive. Fortunately, I was never involved in an accident and felt pretty comfortable driving. I could see objects, but couldn't make out any details or words on signs. I would decipher signs based upon their shape and often rely on friends who were riding with me to let me know what a sign might say. This always seemed to put them at ease with me driving (sarcasm, ha!).

In 2010 I moved from Oklahoma to Olympia, WA., a city with a transit system voted best in the nation in 2009. With my license to drive about to expire, I decided it was time to let it do so and simply get a State ID. My driving days, at least for then, were over.

Initially, I started using the bus to get to where I needed to be. I would spend nearly every day going downtown, about 6 miles from where I lived, to go to a coffee shop and work from my laptop for the day. One morning I decided instead of taking the 15 minute bus ride, I would walk.

In walking those 6 miles there, and 6 miles back home in the evening, I discovered a sense of freedom and joy I had not experienced before. I saw so many details (although physically blurry) of all the activity happening around my town that I had always passed by moving in cars or buses. I noticed the squirrels gathering nuts beneath the trees; the songs of the birds; to morning joggers out for a run; the intricacies of architecture of the buildings. I was seeing life in the present moment with each step, slowly witnessing life around me with a new sense of clarity and peace.

I noticed how I would see streetlights as though they were wondrous stars bursting their light like a kaleidoscope. I saw people not based upon their appearances (which I lacked the capability to do), but simply as a collected mass of cells forming the marvelous miracle that is a human begin, for it is this miracle of life which we each truly are. I felt that I began to see people not based on their facial expressions, but with a greater spiritual sense of their current state. When someone was angry or depressed, I could feel it.

I wondered if my vision was teaching me to see life differently, in a way that I needed to see.

In 2012 I flew to Los Angeles to begin an adventure of travel in step with the wind. I had no plan other than walking, serving and connecting with as many people as possible. I walked much of the California coast and all of the Oregon Coast. I feel it would be impossible to write about everything that happened with each new person I would meet each day. I found a trust in my fellow human beings that was not dependent nor conditional, but a way of life that is free as we each help each other along the way.

I believe that the truth of life is that we are all in relationship together as the human family. The more we uncover that truth, the more we are set free from so many enslaving burdens and pressures of a survival-of-the-fittest, “every man for himself” society.

It is exceptionally difficult for me to view my eyes having keratoconus as a disability, as I've traveled more than ever since I gave up driving. I have seen more than I ever imagined I would. I have learned to rely on others to see for me in certain ways, as others have come to rely on the way I see to help them in different ways. I have found my life's work not in a career that I drive to each day, but in creating an organization that encourages people to walk for causes we believe are changing the world for the better.

Perhaps one day I will have my vision restored to 20/20 through surgeries or some other form of “cure.” Perhaps I will drive a car again one day (preferably, this car), but for now I am immensely thankful for the way that I see and what it has taught. It is something I will carry for the rest of my life.


Dylan Raines explores the nations of our world to connect with people from all walks of life and serve causes that work to impact lives for the better.

Dylan's story was originally published on his website HumanitarianExplorer.org

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