#I’mNotMakingThisUp
Whether you’ve been told to clean your glasses, try a bit harder or stop putting it on, we want to hear your stories about the things about nystagmus you’re definitely not making up
Henry’s story
Henry and the Definitely-Needed Shades
Meet Henry, he’s five, he’s bright as can be,
With a laugh that jumps out like a climbing-tree spree.
He wears super-cool glasses, dark lenses, just so,
Even indoors… even when sunshine is low.
Bryony’s story
How come you don’t drive?
#ImNotMakingThisUp when I say I can’t drive because of my eye condition.
The most challenging aspect of nystagmus for me is not being able to drive. I’m fortunate to have family and friends who understand how nystagmus affects me, but I dread being asked the question by people who haven’t heard of the condition – ‘how come you don’t drive?’
Fairouz’s story
I’m not ‘doing it on purpose’
I share my story so that people understand that, behind nystagmus, there are courageous children fighting to succeed. We are not looking for pity, but for respect and understanding. In Algeria, as elsewhere, we exist and we succeed.
Flynn’s story
But you look fine …
Sometimes my world is foggy,
Soft and misty, a little blurry too,
Like someone gently shook the picture
While I was trying to look at you.
Jackie’s story
I feel unbelieved/questioned with comments such as:
– Your eyes look still to me
– Can you still not see well even with your glasses on? Have you tried different glasses?
– When your eyes are still, I presume your vision goes back to normal?
Sailer’s story
I have nystagmus, but I’m still me!
People at school are often surprised when I tell them I’m legally blind. I don’t always look like it. I can walk around, talk to my friends and do theatre. So I think some kids assume I’m joking or making it up.
But I’m not.
Marjolijn’s story
Statues
When I played statues as a child, I was sent back to the start even if I stood perfectly still. My eyes were still moving …
Rory’s story
I spent so long explaining to people that glasses don’t necessarily fix nystagmus and therefore wouldn’t help me, that when I was also eventually found to be very short-sighted, I worried the same people would think I had been lying all this time.
Eddie’s story
A chance meeting with an old friend
“I see you’re using a stick, have you got trouble with your joints?”
No, I’ve fortunately not got a problem with joints, my joints for my age are pretty good but I have an ailment called nystagmus and one of the main symptoms is it causes me to lose my balance, hence the stick.
George’s story
Our darling little George, so bright and so bold,
With a spirit much bigger than can ever be told.