NB's new columnist Suzie Simons talks about her experiences as a blind person, which range from difficult to hilarious.
I am Suzie Simons. I am 34, amicably separated, with two children, a dog, an au pair, fantastic supportive extended family and great friends.
I volunteer at Action for Blind People's resource centre in London. I am the new columnist for NB from May, so let me introduce myself.
Life is hectic, my two beautiful children see to that, and with two chronic conditions under my belt, I juggle hospital appointments, school runs, volunteering and looking for things I have lost.
Not a "stereotype"
I have optic neuritis, which is an inflammation of the optic nerve. So, I don't fall into people's "stereotype" of what a blind person should look like. My problem is not in my eyes, it is with the nerve that takes the message we receive from the eye to the brain.
The doctors said there was a 95 per cent chance of some recovery, normally within three to six months. Alas, I'm in that other five per cent. I felt cheated and frightened. It was like someone saying: "I gave you everything you asked for, now I will take your vision as payment."
Blind at 27
I went blind at 27. I was hospitalised and did not respond to steroids, apart from the nasty taste in my mouth. The nurse was mortified when I asked if she could pour me some water. She asked what was wrong with my hands. She felt awful, and I felt embarrassed.
The things people say can be very hard to take, especially when you are still coming to terms with losing your sight. I've toughened up so I can cope with the ridiculous, upsetting, ignorant and sometimes downright hilarious things people say or do. For example, it's fairly common for me to be asked why I am holding a white cane. I say, I'm registered blind. They tell me I'm not. I have even been asked what it means when someone holds a white stick in England, because it normally means someone is blind, and on watching me, I'm not.
"You don't look blind"
The best "compliment" I heard was that I don't look blind. How should I respond to that - thank you perhaps? I have had to endure people grabbing me hard by the arm - ouch! Or waving a hand in front of my face, to just having an unprovoked attack on my character. People actually believe I am faking blindness.
People want to know all the details - why and when this terrible tragedy fell upon me and will I ever get better? I'm always polite, but not so long ago; I might have ended up in tears.
Luckily, I try to be positive. I am a firm believer that everyone we meet can benefit us in some way. The benefits are not always clear at the time, but even the most insensitive people and comments, will give me something to write about.
So how did I cope for want of a better word? I finally accepted my fate, when I stopped waiting to be cured. I learned it wasn't giving in to admit I needed help and to change the way I did nearly everything. Unsurprisingly it took me years. The biggest progression came when I started working at the resource centre. Here, we share tips on how to do things or talk about an app that can help.
I have also learned to embrace my future; however I will never forget the unappreciated independence I had when I could see.
P.S. don't forget to read my column in the next edition.
What is Optic Neuritis?
Optic neuritis is a medical term to describe inflammation of the optic nerve. The optic nerve is the nerve of vision - the pathway that carries messages from the eye to the brain.
There is a link between optic neuritis and multiple sclerosis (MS), but not everyone who has it will develop MS. Many people with optic neuritis say it is painful when they move their eyes but the pain should not affect sleep. Pain rarely lasts more than a few days.
The effect on vision varies. It can be blurring of vision to having no perception of light in the affected eye or eyes. There might be a blurring or blankness in the centre of sight
Diagnosis includes electrical testing of how the optic nerves are working and scans of the optic nerves. Clinical trials have shown that steroids can speed up the recovery of vision but they do not seem to affect how well a person recovers their sight in the long-term.
More information
For more information, visit the MS Society.
Article published in NB magazine March 2013.