Can you imagine waking up one morning and all of a sudden blind? I can. I lived through this. Luckily I don’t remember so much of it anymore – but I know the story.
I woke up and things didn’t look right. I couldn’t see. I came downstairs (god knows how I did that). I said “mam, turn the lights on”. I was 5 so I couldn’t reach. She told me they were on. And I said I couldn’t see. That’s where it all began. Where the panic set in for my parents.
She called my Nan and she was frightened too and told us to go straight to the hospital. They had no idea what was going on and neither did the doctors. Vision tends not to go so quickly. I don’t remember very much of that day or the year that followed but I know stories from that time.
Eventually after lots of tests and specialists and a further two attacks on my body, they diagnosed me with a rare autoimmune disease similar to multiple sclerosis called Neuromyelitis Optica. In my disease my immune system which is supposed to protect against invaders gets confused and targets a persons body – the optic nerves, brain and spinal cord to be more specific. When I was diagnosed not much was known about my disease and there were just a few treatment options which were steroids and immunosuppressants. Today there aren’t very many more but there are more varieties of immunosuppressants to try. As time has passed the medical system and it’s patients have learnt more about the disease allowing for quicker diagnosis. I personally feel if I was diagnosed sooner I’d have more sight – most of my nmo friends aren’t that blind. Now let me tell you about my vision or lack there of.
This is how I explain it: I can see I just can’t SEE. Okay yes niamh wtf does that mean. It means I can see my surroundings but they’re different to how you would see them. Blindness is a spectrum. The majority of people with blindness have some sight or sense of light left. There’s often a misconception that for blind people they just see black. In fact, for me, my fully blind eye sees nothing. It’s not black. It’s more like it’s just disconnected.
Anyways back to explaining my vision. I’m able to see my surroundings even as far as down the street and birds in the sky BUT I see them incorrectly. I can’t figure out what I’m seeing if it’s far away because the details don’t show. But during a conversation when someone’s a foot or two away, I can’t see their eyes or wrinkles. (That’s the kind of dm friend everyone needs) I find it easier to see with contrast which is why I can see birds in the sky or the clouds. Colour wise – I can see all the colours but I mistake them. It’s like I have colour dyslexia or something. I just can’t connect the name and the colour sometimes because they look so similar to another colour. So I get blue and purple mixed up, green and red, yellow and orange. But I can see them. They don’t just suddenly disappear they’re just wrong. I have about 20% of my sight in my left eye remaining and no sight in my right eye. Which is weird because I don’t feel that blind. I’ve always managed extraordinarily well with being blind & stubborn haha. Some people even forget that I’m blind and may need extra help. Which I find quite funny, until I fall down steps😂. Or walk in dog shit. Good job I don’t have to walk anymore right! Maybe I don’t feel that blind because I have nothing to compare it too? I can’t remember seeing clearly.
We actually don’t know if I may of had nmo attacks before this overnight blindness one because I would’ve been too young to begin to verbalise it. But you know. Too late now.
Though I am blind I’m very high functioning and am able to do all of the things you would do but differently. When I was in a better place health wise I did art for fun, I would go out by myself and walk to friends houses or shopping, I did very well at school and learnt to do Braille and I learnt to cook! I can do my make up, use social media, take selfies, enjoy fashion, travel, watch tv and read! So I really am like other people. I just do things differently I do need help when it comes to colours, my family are used to me sending them to find something by a blue bag when in reality it’s purple. So now they just give me the benefit of a doubt when I mention a colour haha.
If anyone has any questions on my sight, diagnosis or how I do x y z just let me know.
To learn more aboiy my condtiion visit Guthy Jackson Foundation