My name is Anita Graham and I have Achromatopsia. I have been married for thirty-four years and have two adult children. I was asked by Dr. Richard Windsor to write a little about my life experiences with Achromatopsia.
I always thought as a child that if I tried really hard to see color that I could. I would spend sometimes an hour staring hard at something I knew was very colorful in hopes of seeing the color. I have very few childhood memories because many of your memories are from what you have seen. I saw very little in good lighting. I was given sunglasses while living in Arizona as a preschooler and began wearing them all the time. Of course the eye doctor immediately informed my mother this would be harmful to my vision and I was no longer allowed to wear them in the house.
School was challenging and I mainly got by using different coping strategies. There were no helps at that time in the public school system except large print books. Those I only used until sixth grade then refused them, as they would not fit into the locker. Gym class was fine as long as we were indoors. Outside was a different matter. I was excused from certain outside team sports and allowed to remain indoors. I was required to sit in driver’s education class even though I did not have to participate in the class. I was told this was a state requirement and I could not spend that time in study hall. I was determined not to let my vision deter me in any way and maintained a high grade point average and was in honor society all throughout high school.
Throughout my life I was never able to find a vision specialist, whether it be an M.D. or a retina specialist that had ever seen or treated an Achromatopsia patient. I was first exposed to the word, "Achromtopsia" when my husband was surfing the net trying to find something about my "color blindness" as I had never been given a diagnosis. Of course he found the Achromatopsia Network started by a wonderful lady named Frances Futterman. When I first read what she had written, I cried as I thought I was alone with this, but was overjoyed to discover I had "people".
Through networking I joined a Yahoo group. Through this group we have began having Achromatopsia conventions. At my first convention in 2008 in Dallas, Texas, I met other people with Achromatopsia for the first time and formed many wonderful friendships. We are currently planning the convention for 2011. Through this Yahoo group I first learned about the Low Vision Centers of Indiana. I watched the fantastic video that Zach made about his experience getting his tinted contact lenses. I was intrigued and excited. Could I wear contacts at fifty years old? There was only one way to find out.....
My journey took me to Indianapolis, Indiana on December 9th, 2010. I was given an extremely thorough evaluation by Dr. Richard Windsor, who has an extensive knowledge of Achromatopsia, and has seen many people with this condition. Many, who are famous I might add. I was there about six hours and tried on several pairs of tinted lenses before deciding on the red tint.
Holly, the office manager, was just so helpful and understanding. I can't say enough wonderful things about her. She promised to file with my insurance company even though we paid at the time of the visit and just a few weeks later, I received a check from my insurance company for a portion of the payment. Thank you Holly.
Dr. Richard Windsor, besides being a great doctor, is also photographer and took my before contacts and after contacts pictures. Thank you Dr. Windsor for the all the long hours of research you have done and the adaptive devices you have to offer for people with Achromatopsia.
When I have my contacts in, I can see so much more around me. My peripheral vision is not hindered by wrap around visors I used to wear when being outdoors. I can ride in our Escape with the sunroof open without wearing a hat. I can walk into a grocery or department store and not have to put on sunglasses. I can go outside in bright sunlight with snow on the ground with only my Ray-ban sunglasses over my contacts. I can open my eyes without squinting. I am truly looking forward to summer this year. Usually I dread the long days with intense light but not this year. I hope in some way this can be an encouragement to anyone who is struggling with Achromatopsia.
January 1, 2011