How Having an Eye Disease Helped me See

I was diagnosed with keratoconus, an eye-disease where the cornea within the eye is misshapen, 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.

7 Comments

  1. Sheila
    January 9, 2019

    I enjoyed reading about your journey. Thankful you can see well enough to walk the beautiful coasts you mentioned. There are a lot of good people out there along the way. My journey through deafness eventually led me to cochlear implant technology. Here’s hoping there is a cure or surgical procedure to help you with your sight in the near future. Keep writing and sharing!

    Reply
    1. Dylan Raines
      January 9, 2019

      Wow! Thank you for sharing, Sheila. Has the technology fully restored your hearing? I did have a cornea transplant on my left eye, but I try not to wear glasses too often due to how different it makes each eye/my head starts to hurt after awhile.

      Reply
  2. Brad Mazon
    January 9, 2019

    The notion of limited vision allowing you to see people in new ways warms my heart.

    Reply
    1. Dylan Raines
      January 9, 2019

      Thank you Brad. What warms your heart about this idea?

      Reply
  3. Nuru Habu
    January 10, 2019

    And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

    God bless you, Brother!

    Reply
  4. Phil Matous
    January 11, 2019

    Nicely written, Dylan. Yours is a very encouraging story, one I and many, many others need to hear.

    May I suggest that you use a bit larger font in your posts. Maybe its my age but I prefer the medium size font that Word Press offers.

    Find peace in Christ.

    Reply
  5. Shaun
    January 25, 2019

    Awesome! When going through difficult times we sometimes miss the secrets that are hidden, when you chose to tackle your limited eye sight by walking and choosing to relish it rather than dwell upon it, that is the moment you claimed victory. Amazing what is revealed to us when we open our hearts. I dry much enjoyed your explanation of how you view people now rather than based on looks, almost like soul ray vision.
    Thank you for sharing this, I enjoy reading future posts

    Reply

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