“Oh hello Blindness, guess you’re hear to stay so are you friend or foe? Right now I am sceptical as I don’t know you well and like anyone one meets, one needs to assess. I am feeling still like me, however somehow different like those déjà vu moments when the world was visual. Hang on blindness, let me recap the time leading up to this meeting as I I do not befriend just anyone.
Gosh it is wonderful to be that young girl with not a worry or fear in the world. Let’s face it children have no fear. They simply try the most insane things without batting an eyelid. We run, jump, fly off things, and eat weird and very unappetising things all with a smile on our dials. Not so when older and thank the Lord! Ha-ha It is bright outside this day unlike my friends I am not laughing and smiling now as my head hurts along with lines running through my eyes. What is this? I feel I need to go home ask my mother. Mums know everything don’t they? My friends are begging me to stay out as we are going swimming. I now feel sick so with my head hanging down and jeering remarks from my friends, I depart for home.
Wow, this headache is a real killer! My mother gave me medicine (which is awful.com) then I was put into my dark bedroom to sleep it off. I just cannot sleep. My head is about to bust. Oh my, yes, there it is, I am sick everywhere! Mothers are great aren’t they? Like a trouper in she comes to clean the mess whilst I constantly complain to her. This whinging is water off a duck’s back. In retrospect I truly admire what my parents coped with. As I lie alone in the darkness of my room I will sleep, however, a part of my brain is wondering just why I alone seem to have these very unwanted attacks whilst my friends do not. They have fun and play with pleasure. I am getting frustrated hearing about their fun they have without me.
I am as fit as a fiddle bursting out of bed, what headache? Ready for school and racing out the door to the usual “You have not had your breakfast?” I reply, “no time for that as I have friends to catch up with”. Catching up with the crowd listening in vain to the shenanigans of the last afternoon. I look interested with many animated gestures. I am in two minds – one is thinking please, please, wiggly lines do not return to my vision and also what will the day in school entail?
Faces drop and the whispering starts. NOT THE NIT LADY! Wait, who is this other lady? Oh, it is the lady who recommends the four eyed glasses. It is a double whammy! What a drag as we are either going to have the cooties or the dreaded coke bottled glasses!
Friend or foe it is not looking like we can be friends after all. You are going to have to bring a lot more to the table as I am not feeling this is going to be a shared relationship. You do not seem to want to laugh, run, jump, or even talk to me. Friendship is a two sided coin. Blindness, why do you not bring your coin to the table?
Naomi Gillbanks you are required in the next room for your checks. Oh my, please, please do not let me have cooties I think to myself as if I am tarnished with that brush. The torment of the other children would be relentless. Although to be clear, I would definitely be one of the tormenters. Yes, I am clear! High five to me now! It is the eye lady next and that is easy. I spoke too soon as she is taking longer than is warranted for a simple chart test. So many questions – WHY? OK, over and done with phew! I am out of there – good timing the school bell has rung for lunch. Yes! Once back in class I hear over the speaker system “Would Naomi Gillbanks please come to the office right away.” All eyes turn to me with little cheeky smiles like they know something I do not. I quickly race through my mind to remember whether I had done something naughty at the break, but not recalling anything, I rise and trundle out.
Mum what are you doing here is my first question? Then, to be honest, I start really racking my brain to see if I had really done something naughty after all. Hahahaha Turns out I needed to see an optometrist earlier rather than later. So the big journey began.
I cannot tell you just how many optometrists and specialists I was dragged to. It is actually embarrassing to even fathom a guess. My poor Mother sat through each of these relentless tests which always ended with your daughter is psychosomatic and is just trying to get attention. Again my mother would explain these headache attacks. She described how I was sitting in the front of the class and still racing up to the board to check out the letters, sitting so close to the TV, asking to have things read out etc…… The same answer with their conclusions final.
Now Blindness do you think you are friend material or just a pisstake? Children have feelings too so anyone wanting to be my friend would be nice to children. What is your excuse pray tell?
I do not feel the lazy student that I am now labelled. Does everyone see like me or perhaps I am indeed naughty? Days, weeks and years at school became such a chore with endless bad scores, telling off for lousy work and not concentrating in class. However, I could not explain my difficulties. As a child to put these strange lights along with sparkles running through my eyes is hard as who was going to believe me? The feeling of being labelled whilst in my own head dealing with glittering eyes was so lonely and soul destroying that I simply lost interest in anything to do with schooling. Trust me, it showed in my marks time and time again so I became numb to the constant reprimands by teachers and my parents.
It simply happened one day in early high school, with no warning, a lady came to school for the reading of the eye charts. As you can imagine, my heart sank thinking here we go again with the accusations about being silly in reading out this stupid chart. Again, “Could Naomi Gillbanks please report to the nurse’s station right away.” I remember picking up my bag with absolutely no enthusiasm whatsoever and slumping out of the room. Whilst waiting for the lady I sat there contemplating sneaking up to the charts and trying to memorise the letters so I could get out of there quick smart. This was not to happen as she did not leave the room once I stepped in. There was not the familiar dread, however in this case just a sense of calm. I could not really explain it as it is more of a feeling of other senses. Almost a sense of smell with a sense of her touch on my arm which would be all the senses I live by now. I read for her and within just a few minutes she scribbled a note out put into an envelope marked for my mother.
Curiosity nearly killed me through the rest of the day so I ran all the way home to find mum in the kitchen organising dinner. “Mum, Mum I saw the eye lady today and she gave me this for you. Open, it open it!” With reluctance she tore open the letter. As she was reading, I was studying her face for any little give away – yet nothing. “Well”, I said, “what did it say?” With a huge sigh and with a look of “OH my god, not again,” she told me the lady strongly suggests I am taken to an optometrist. I too felt the heavy blanket of dread once again but somehow I also felt this is right. Don’t for one minute think I did not feel sorry for my mum as she is the one who had to listen to the diagnosis time after time so I did feel a pang of apprehension for her.
We set out one morning early the next week, both of us not saying very much as we both felt the same feeling of “What on earth is going to be different this time?” When we arrived in Fitzroy to the optometrist, I turned to my mother remarking, “We have never been here before have we?” I am unsure why I posed it as a question as I knew the answer. I think I was just trying to lighten up the sinking feelings we both had.
On entering the room full of gadgets which we were by now very familiar. I plonked myself down while my mother and the optometrist spoke. All the usual test were done although, hey, what is this one? Quizzically, I looked towards my mother as I sat in the chair. I was told to say yes when little lights appeared randomly on the board. Not many yesses came tumbling out of my mouth which caused the optometrist to tut, tut under her breath. I just wanted the lights to be turned on with the usual lecture told so that we could hightail it out of there. Not to be, she simply said, “Off to the specialist for her, Mrs Gillbanks.”
Oh Blindness, friend or foe, are you maybe now starting to talk to me like other people who wish to be my friend? I nearly gave up on the fact that you weren’t really friend material at all – just a fake. I know we all get served with those friends who are fake so watch your step blindness as you are on thin ice.
Hell, I am even excited now for the tests that are coming my way. Ridiculous really, however I feel elated. These tests were at the big hospital where I had never been before. I felt like a big kid in here. I think my mother thought secretly I was mad.. My excitement waned when I learned I needed iodine drops PLUS A NEEDLE in my arm to pump dye through my system to eventually pass through to the back of my eyes. Oh god, not the needle, Ha-ha! I was thinking about the stories I could tell at school and probably add a few extra bits to make it sound far more interesting than it was, as children do.
Wow, an actual diagnosis at long last, I am proud to announce that I am not psychosomatic! Halleluiah! My mother was told it was called Fundus flavimaculatus, which is a rare cousin to Stargardt’s disease. It was so foreign to me it took me half my life to even say it and to this day I still cannot spell it – hahahaha!
To have this diagnosis made things with teachers and my parents easier but it was still hard for me. Children just do not understand other people with different disabilities. So I carried on as if nothing was wrong so as to fit in as much as possible.
Being this stubborn led me to quit school early as my interest had gone and everything seemed hard work to me. Again, I felt like me, yet so different in the sense I did not want to show my friends I was different. Being in denial over the next years left me confused and mentally drained. Imagine for one minute constantly pretending nothing is different with me – trust me it is very difficult. I just could not accept my eyes failing. I went on to marry young with the hope my poor eyesight would not come into play at all. After the birth of my four beautiful children I could no longer ignore the changes to my condition. Yes, to the specialist once again to arm myself with the cold hard facts.
As an adult, I knew the right questions to ask like, “How does this progress and at what pace?” It was not what I hoped for, however, at least I was not an ostrich any more with my head in the sand. Quite the eye opener. (Excuse the pun!)
So Blindness, years down the track you were assuming that I was aware just what I was in for. Well, I can tell you I WAS NOT! When we meet friends or potential friends there is a code of conduct. I think I blocked you without giving you the chance to let me feel your acquaintance. You’re a hard friend to embrace but you come with some positive aspects too, so we both just need to let go and embrace one another.
As an adult in this new stage in life what I once thought was the end of the world has now become just the new phase of my life. I enjoy finding out new ways to do things along with venturing out to discover what is possible even with a disability.
Blindness I would love to be friends with you, thank you for your patience with me. Let’s live life together to see just what we can do together.
Now l have the best friendship with my blindness, because without it I would not be the woman I am today. Together we have raised a family, moved to a new country, embraced new technology, become independent with our mobility and even travelled internationally. However most of all it has brought me and my loving Guide Doggie Joey together. We are now like the three musketeers. My life has become fuller now, so much so I don’t consider myself having a disability, merely challenges.
Blindness I once could not see the wood for the trees, now I have my own mind’s eye which is visual to me, tastes to me, smells to me, hears to me and feels with touch to me. With all these other senses I am a complete woman. Blindness you’re not a fake you are an empowering friend.