Point of View: Overcoming Congential Coloboma

The doctors informed my parents at birth that there was a problem.

My right eye physically looked differently than the other eye. A few days later I was diagnosed with congenital coloboma, slight glaucoma and high pressure. My right eye was bigger and some said it looked swollen all the time. The pupil was clouded and they determined that I had very little sight in that eye and we had to monitor the pressure constantly.  Growing up was difficult to say the least. I have a wonderful family that supported me in every way which gave me strength, but no one could know the humility and embarrassment I went through on a day-to-day basis.

At the young age of seven or eight, I hated to look people in the eye, I knew if I made eye contact with them their first words to me would be” What happened to your eye?” It was as if I were wearing a scarlet letter on my face. You can’t hide a bad eye like a scar on your arm or leg, most people can cover a scar. There was no covering this up. Your eyes are the first thing you see in people. So, I had to deal with it, there was no choice. I became very shy and just wanted to be “normal” so badly.

I endured countless visits to the ophthalmologist and even they had seen nothing like it. They controlled the pressure with eye drops and monitored my sight for years.  My pressure flew up at nine years old which resulted in surgery.  I was so afraid that I would come out of surgery totally blind. I will never forget the fear that gripped me when they took off the patches and I could still see. At nine years old that is a hard thing to deal with and I never told anyone.

As a teenager, there were no dates, so many demeaning comments and very few real friends. At some point, I had to really deal with my fate in life. I was near-sighted and glasses never helped me. I endured so many humiliating experiences, I had trouble seeing the chalkboard in school and I felt so singled out when I had to sit up close to read it. I knew that I was talked about behind my back and I felt as though I could never measure up like the “normal” kids.

My doctors had told my parents that there was a possibility that I may be blind one day. I remember my mother telling me this when I was a child, that hit me very hard and I remember thinking to myself “I really need to see and appreciate everything, burn the memories in my mind for future reference.”  If I were to become blind, I at least wanted my memories. So without even realizing it, I started to see this world as if it were the last time I would ever see it. I studied sunsets, children, flowers, bugs, clouds, colors, animals and I enjoyed it all to the fullest.  Everything was so special to me, I didn’t want to forget anything.  I knew that I wanted to write my story at a very young age and share with others what so many of us are looking for……learning to live in the moment.

There came a point when I made a decision, I was not going to go through life wishing myself away, hiding from everyone.

So I started to live…..I did everything most other teenagers did, I became a cheerleader in high school (not because of popularity but by sheer determination, I got my driver’s license (again sheer determination) and lived as if there were no tomorrow.  Everything I did, I worked hard for, and as soon as I would forget about my eye problems and feel as though I was beginning to fit in, something would happen or someone would say something that would hit me hard, sending me into a reality head spin.  I tolerated reminders on a daily basis that I was ”different” from anyone else.“ I was stared at in every store and in every situation. There were times when I asked God “Why me? Why do I have to go through this?”

On top of having this defining stigma, I’ve had a life full of ups and downs that most everyone can identify with.  I got married young, had two beautiful daughters and I have experienced divorce after 21 years of marriage. I’ve made many mistakes and had some wonderful times including owning a business for seventeen years. I’ve seen heartbreak and I’ve shed tears of joy.

My divorce was the turning point that forced me to look within myself and find answers as to why my life played out the way it had.  I knew that I had been born with circumstances that were way out of my control. It has taken me many years to learn that no matter what our circumstances are, we are not alone. I had to go back and see that there were choices I had made that caused me much anguish and grief.  I learned that we must all (no matter what the circumstances) not be a victim, but to learn to overcome and take the steps towards our own happiness. It took time and patience but I found a new love for myself and new meaning for my future.  I was finally comfortable in my own skin.

I have been employed with a program that teaches vocational skills to adults with intellectual disabilities for the past ten years.  I advocate and write their yearly plans implementing supports to assist them to live as independently as possible. I have worked closely with people who are socially unaccepted and I fight for their freedom to be who they are, to be happy.

It is so ironic that within a year of my “acceptance” of myself and who I was, I met a wonderful surgeon that took an interest in my situation. She convinced me to let her help. She is an ophthalmologist/surgeon that specializes in plastic surgery. A woman who understood what I had been through knew what it would mean to me to have the physical look of my eye corrected.  Some say it was circumstantial but I say it was fate.  One year, three surgeries and a beautiful artificial eye later, I was totally transformed!  I will never forget the ride home after getting my new prosthetic eye; I couldn’t stop looking in the mirror.  I was perfectly normal looking!

That was a little over a year ago and I am now fifty-one years old

I’ve lost forty pounds due to being so motivated by my new ” look,” This past year has been my year of transformation. I feel as though I have broken free and I’m living as if there is no tomorrow. I wake up ready to begin each new day because I know that no challenge will even compare to the joy and gratitude I have about my circumstances. I still have issues with my “good” eye that I deal with and there is still that lingering thought that as I grow older my sight could become worse. But I have been given a gift of new beginnings. No more stares from small children or questions from adults. I almost feel as though I am part of a human experiment, wondering if I can adjust to being what we call”normal?”

I have completed my memoirs that I’ve wanted to write for so long, I actually started writing my book before I knew that I would be having the surgeries. What a splendid ending to my story!  I want to help others that are going through troubled times that there is a better tomorrow.  Our struggles build our character and what I thought was an inadequacy has turned out to be my calling in life.

Everyone has a story; I am no different than anyone else. I have learned many lessons in this life that I can share with others to encourage support and assist them into transforming their own lives. You can have your own happy ending also and it all begins with YOU.

About the Author: Sherry Cook currently works for Mobile Arc, a non profit organization that supports individuals  with developmental disabilities.  She is wrapping up her memoirs and hopes to be in publishing soon.  Her desire to tell her story has been nudging its way to the surface for many years. Having undergone personal challenges, living with monocular and low vision, while struggling to “fit in” with society’s version of what is normal. She understands all to well the difficulties life has to offer. Accepting yourself and learning how to overcome is her main platform for her energetic and touching motivational presentations.  Her hobbies include painting with acrylics and working on home projects. Sherry can be reached at slc1960@att.net or sherrylcook.wordpress.com

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