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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One response to “Your stories: Growing up with congenital nystagmus

  1. Nitie, I came across your post and also have congenital nystagmus with corrective vision to 20/50 in both eyes. I commend you on all of the adaptive ways you have found to be so successful. It took me quite some time to be proactive about strategies to make me more successful and efficient. I struggled with reading the board in school always, I’ve never been able to see much at live sporting events, and I also can’t read the menu boards at restaurants unless they are the hand out kind. I grew up in the USA, and am now a successful practicing physician. I think denial really played a big role in some of the struggles I’ve had with insecurity. It’s all about owning what I have and working on constructive solutions to live a happy and productive life. I am now expecting my first child and came across your story while thinking about the potential for him/her to have CN like me. Although that fate is out of my hands, your story re-enforces to me the value of showing strength through adversity for our own and our children’s benefit.

    Appreciate it,
    Atul

    Like

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