Your stories: Growing up with congenital nystagmus

I love sharing stories of people who grew up with glasses, I think it helps me to hear what their childhood were life.  I am so pleased that Nitie agreed to write about her experiences growing up with nystagmus.  Many, many thanks, Nitie! -Ann Z


Growing Up with Congenital Nystagmus

Nitie heas shotHello my name is Nitie Mehta and I have a 7 year old daughter. No she does not have Congenital Nystagmus but I do. I wanted to share with parents my experience of growing up with Congenital Nystagmus.

When Ann asked me to write about this I did not know where to start as there is so much I would like to share,  so I am  breaking this post into 3 sections

  1. Congenital Nystagmus: the way I see
  2. Only If I Knew This Before
  3. Adapting to everyday things

1)      Congenital Nystagmus: the way I see

Growing up I just thought I was a normal child just like any other kid. I only needed glasses to see well. To be honest I really did not know why I wore glasses because I did not see any different with or without them. Yes, unfortunately glasses do not correct too much, I improved from 20/80 to 20/70. That meant I could not read the black board in class and could not recognize someone across the playground. If the font was large (14) and there was plenty of light I could read but otherwise I would avoid reading and could never read more than 5 pages at once.  Once I was in 5th grade and school work had increased I started using a magnifying glass to help me read normal print. But all along I considered myself a normal child who needed to be a little closer to read.

2)      Only If I knew This Growing Up.

I grow up in India in the days prior to the internet. I really did not know much about my condition and I am not sure my parents knew too much too.

  • Ball sports that needed hand eye coordination or depth perception were not for me.  I spent 3 years learning tennis, only to hope and pray that I could somehow hit the ball back, because I really did not see it till it was over the net. Instead swimming, running, rollerblading, cycling would have been great sports to pick up.
  • I hated family movie nights: our television sets was not large and there was a myth that if you sit too close to the TV it spoils your eyes. Thus sitting 6 feet away from a 28 inch TV I could barely see anything. Only if I sat closer I would have enjoyed family movie night.
  • Good white light would make it easy for me to read. It was not until I was in 7th grade that I discovered that a nice bight white light lamp made things so much easier to read.
  • People often have a visual memory; they read something and have a visual image of it that they can remember forever. Well I did not have this but I do have an audio memory that is if I heard anything I would remember it.

3)      Adapting to Everyday things

  • Once I was a teenager I realized that there were things I could not do on my own even if I tried really hard, but what I could do was make good friends everywhere I go so they could help me.
  • Driving – not only do I have the GPS but also carry paper direction and if possible ask for land marks to a new place I am going, this way I do not need to read road signs or house number.
  • Reading menus at a fast food place or in a dimly lit restaurant: I always search for the menu online before going to a place and know what I am going to order. If for some reason I have not done this I ask the waitress for their special and just pick something from it.
  • Reading fine print on anything. I use my smart phone and take a picture of the thing and then enlarge it to read it.
  • Driving at night, I am not supposed to drive at night thus I will form a carpool group and offer to pay for gas if someone else is driving.

Finally parents of kids who may have this, I want to leave you with this, I have an MBA, I worked at KPMG Consulting a top 5 consulting firm and at Microsoft before I decided to start my own Eyewear company Taffy Eyewear . You child too will and can achieve anything they set out to do when you believe that they can.

Nitie Mehta is the founder of Taffy Eyewear: Eyeglasses specifically designed for kids


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