How amazing is Ellen?

Throughout June we’ve been celebrating your nystagmus success stories in our campaign ‘How amazing are you?’

Today, Ellen shares her story:

“My name is Ellen and I’m 32 years old. I’m married and have a little boy who is 3. He’s my inspiration. He’s also my eyes whilst I am out and is very switched on to my sight difficulties. I have nystagmus, astigmatism and have only recently been diagnosed with ocular albinism.

‘My parents have always been incredibly supportive. They’ve told me that, soon after I was born, they became concerned that I couldn’t follow objects. They were told I had nystagmus, caused by a magnesium deficiency.

‘I knew as a young girl that I wasn’t “normal”. I struggled to see things at school and was bullied for having “funny eyes”. 

‘I’ve always tried to adapt, by doing stuff my way. Sometimes this can look more complicated or strange, but it works for me. 

‘During my school years I worked and worked, but they were some of the hardest of my life. I’d struggle to read from the white board, often sitting next to friends to copy from their work books. This was my way of doing things. 

‘My dream job was always to work in the emergency services or armed forces. At a Year 11 careers day I was told I wouldn’t be able to do either, because my eye sight was so bad. So then I was stuck and didn’t know what I wanted to do.

‘I thought long and hard and decided that I’d go into sixth form and do heath and social care, with a view to applying for a nursing diploma in mental health. I can remember teachers telling me I’d never be able to do it as I wasn’t intelligent enough. I now put this down to struggling at school, not being able to see things on the board or in books, often falling behind in subjects.  I was able to mask my struggles well.   

‘My parents recently told me that a teacher had in fact phoned them, advising them to make me quit my A levels. They said I was struggling too much and would never be able to complete the course. But my parents believed in me and never asked me to quit. Instead, they encouraged me and supported me all the way. 

‘Around that time I started driving lessons. Whilst driving, my Mum asked me to read a road sign. I said I couldn’t see one! Then she asked me to read a number plate. I couldn’t see it. That’s when we realised how severe my sight was. An ophthalmologist then told me I wouldn’t be able to drive legally. I was devastated, but it wasn’t the end of the world.  I’d already been knocked down so much, this wasn’t going to stop me.

‘I went on to nursing school to prove I could do anything I put my mind to. Three years of hard work, failures, tears, laughter and enjoyment followed and I completed my mental health diploma to become a qualified RMN (registered mental health nurse).  

‘I’ve now been qualified for over 10 years and still love the job.   In fact, more recently, I’ve landed myself a role I’ve only dreamt of doing, working for the ambulance service, triaging calls. 

‘I find ways of doing things, adapting to my environment. I’m very open and honest about my condition and my colleagues are very supportive.

‘I’ve now been diagnosed with cataracts at the age of 32 years, which has impacted my sight, but this is being sorted soon.

‘So, to sum up: don’t let anyone ever tell you “NO” or “YOU CAN’T”.  You “CAN”, just in your way!  If I can do it, so can you!  Be proud of your eyes, they make you unique.”

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

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