Getting out and about with ever decreasing peripheral vision comes with a strange and unpredicted side effect, paranoia. Things that I used to be able to clock and seamlessly address in real time, require a more active approach. Walking around going blind feels like the title of a skit but the reality is far from funny.
Not sure if it’s my age or the RP but the general brightness of life is becoming very uncomfortable. I am also up against the backdrop of needing more light to help my eyes temporarily overcome my RP, to get everyday tasks complete. Once again my life is plagued by a laughable cruelty. The constant battle to adjust, overcome and keep going.
Gauging the mood of the room, seeing if strangers or even friends to the side of me are trying to get my attention or just general awareness of my surroundings, is vital information when you are out in the world solo. My ability to do this easily is slipping away. Because I had it, crisp and clear for many years, the loss is pretty crushing. Ever since I can remember, I have surveyed all rooms I have ever entered. I am looking at who is there, what type of people they are, which ones are likely to be kind to me, and avoid the ones that will probably mock me in some way. Where can I sit that will draw the least amount of attention, are there windows that people can look through into the room I am in, are there kids, teenagers with smart phones that might find it hilarious to take a photo of me…will I be safe here?
Going back to the laughable cruelty, RP is not the only life changing situation I have to navigate. As previously mentioned, I look very different too so my determination to blend in unnoticed is being pulled apart from two sides. The paranoia of my own brain trying to frantically keep me mentally and physically safe, as the scope of my abilities continuously reduces, is brutal. I have always wanted to melt into the walls, ever since I was a child. When you are born to stand out, not because of some amazing God given talent but because of a physical disability, going unnoticed sometimes is the dream. I had mastered this and only occasionally would I be caught out. I would forget a certain angle, miss a danger on my initial room survey, sit on the wrong side of the table or heaven forbid, be having a really great time and forget for a moment that the rules for people like me are very different.
One of my core memories of being caught off guard happened when I was a teen. I walked into a newsagent to buy a couple of cans of drink for my friends and I and a boy turned around and shouted “Look at that girl with the mangled face!”. Needless to say everyone did stop and look and I think I must have floated out of my body as I just stood there, allowing them to take in the visual of me. By this point, I had heard many things yelled at me in the playground but mangled – that was new.
Now with my visual field having to work overtime to read the room, spot the people who could be problematic, assess the lighting issue and adjust my position to allow for the motion of the sun, before I have even sat down…my heart is tired.
I sat opposite my daughter at a restaurant last month. Just the two of us out to eat, chatting and laughing. I momentarily forgot myself. Having a degenerative disease that will go on relentlessly taking more from me, I have resigned myself to the fact that I will never feel or be truly carefree again. I suddenly remembered my first scan of the room and the angles I needed to cover. The lads to the left with their laptops, the teenage girls with their phones out, the young family with the adorable toddler that kept running up and down the aisles and the waitress that would creep up to me on my left like a bloody ninja! The amount of times I blag my way out of situations where I miss a cue, telling people that I am in a world of my own is unreal.
With all these smartphones comes the ability to take photos of whatever you want when you want. Now in my room scans, I plan for people, lighting, those pesky cameras and modify my actions accordingly.
Having seen people take photos of strangers and having been sent the evidence of other people taking pictures of folk they see in the street – I worry that one day, if it hasn’t happened already, it will be me. Not because of some harsh sunburn, hideous socks with sandals or disastrously terrifying eyebrows, that I am sure the individual in question regrets. These are eye rolls at best, a passing nothing that’s deleted and forgotten. A picture of me off guard however, I can’t help but feel that would carry more weight in any group chat.
Many years ago someone took a photo of me in a record store and laughed about it with their friends. It’s one of the most humiliating and suffocating experiences; you are completely trapped in that moment. Back then, I just got out of there and never looked back. What else could I have done? Stayed for more photos? Stood my ground and risked being recorded? No, I left. The speed that I was able to duck out of there was very impressive. On this occasion. I was the ninja! I hit the carpark, jumped in my car and drove away. It was ugly but I handled it. See it, spot it, see ya!
I am no longer a ninja. No longer able to observe and get out of the way, not all the time anyway. My room scans and the constant adjustments I make to my own perceived threats, not only protect me but the people I am with. I wonder all the time what my family and friends will think and do when my RP finally forces me to remove the filter I put on my life. If they get first hand what I have always shielded them from? I wonder how much grief I will get when I can’t see to make all the adjustments that I do. Some people will say, who cares, you won’t see what they are doing anyway. That is not the comfort you think it is. I may not see it but the people I am with might. My husband, my daughters, my friends…
In the future, I won’t just be some blind woman, I will be a blind woman with a facial difference. A blind woman with a facial difference and Ulcerative Colitis to be exact. Can you imagine, looking different, being blind and maybe hunting around with some urgency trying to find a toilet! Honestly, I may never leave the house! There’s that laughable cruelty again. My life long battle to blend in will be lost. I will be alone under the world’s lights, with their cameras and hoping my actions don’t end up a meme. I know this is a version of events. A possible future for me out of many. I just can’t see the many right now, I can just see this one and I am not a fan.