I see… living with Nystagmus.

Do you ever wonder how they come up with the medical terminology for conditions?

To be honest I often wish that doctors would’ve thought along the lines of Doc McStuffin.  That way I could tell people I have a condition called Jumpyeyeitus. But instead, I have to tell people I have a Nystagmus.

Nystagmus

This is a vision condition in which the eyes make repetitive, uncontrolled movements. These movements often result in reduced vision and depth perception and can affect balance and coordination. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern.

I was born with this condition, which means that they refer to my type of Nystagmus as a Congenital Nystagmus, a condition that cannot be corrected or controlled. Doctor’s call me ‘one of the lucky ones’, my balance isn’t affected. I don’t have noticeable movement and I don’t require help to get around.

In fact, the biggest impact it has had on my life is that I am unable to learn to drive. When it comes to everything else I have adapted. My life is no different to anyone else’s. I went to mainstream school, have worked since leaving education and I have a social life.

My parents raised me to accept that my vision was different to others but in the same way that we all look different, it was something to accept and carry on. I accepted that according to the experts my eyes were different compared to others. But the truth is we all see the world individually through our own eyes.

Moving on up…

Up until secondary school, I never felt any different to my friends, my peers treated me as an equal and I had a happy school life. Sadly that all changed once I moved further on in education, children called me names, one girl even tried to hang me by my scarf. All because of my eyes (and weight at the time) My parents and I fought for things to be better but it wasn’t until leaving school that I felt a weight lift and with that came a new determination and stubbornness.

And despite the torment, I endued at school I have never let my Nystagmus define me, yes it is part of who I am and a part I will always accept… but I am Kirsty, not Nystagmus!

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