Blindness Is Not A Chocolate Biscuit
Honey, I am just not coping, I say to Michael one afternoon not long after I stopped writing my weekly Blunder Weeks post. As if, he didn’t already know.
That man knows me better than I know myself. But unlike me, he doesn’t have to verbalise every observation that crosses his mind.
Those things had been like therapy for me. But I was afraid my round and round the rut we go repetitiveness was becoming boring not only to me but to my readers. So rather than suck it up and revamp my writing, I abandoned my word baby, and threw my creativity out with the bathwater so to speak.
A decision I now regret.
Somehow I thought that maybe between the Facebook posts, I could fill in the blanks at a later date. But I feel so differently now to the person I was then, that it almost seems impossible to backtrack.
I feel like two before and after pictures pasted together with a big black line down the middle, but in my case it is a date stamp. But I haven’t yet found a way to marry the two – before the operation, and after the operation. Twenty-four tiny hours that divide my now and my then with a contrast that crackles through the last few years.
At the moment all I can do is look at each with disbelief. How is that possible, I ask myself almost every second of every day. How is it that I am so different? Was I really that girl? Am I really this one? That’s amazing!
I question whose life I am living now, and struggleas in really struggle to remember just how bad it was. Just how much I wasn’t coping And just how much I wasn’t doing… Oh God and then there was the hope. The back breaking thought paralysing, hope.
Is it any wonder I couldn’t concentrate on anything else?
Michael just looks at me and says nothing. Knowing that I already have a solution in mind.
Let’s go to the doctor, and ask him for a referral to a new ophthalmologist, I continue. As I hadn’t been happy with my previous one.
This isn’t to say he isn’t a reputable expert, because of course he is. However we just never truly understood where each was coming from, and the respective limitations and constraints we were each dealing with on a daily basis.
With every appointment I would begg him to do something, and each time he would flatly refuse. Not even entertaining the possibility for even a milli-second. I didn’t understand or rather I couldn’t understand why. Because to my mind, I wanted it so badly, that surely, surely there was something that could be done. Because this couldn’t be happening. And as an eye expert, surely he would be the man to do it.
I’m not coping, I say yet again, rubbing my exhausted eyes, as if it will help.
The truth is I cannot see anything, but I cannot understand. All I understand is that no amount of straining, squinting, and squeezing is helping.
vision is a greedy bitch in the sense that if you have anything, your brain will insist on using it no matter what. Thus rendering a girl a sobbing mess and completely overwhelmed, over loaded, and overcome at times.
I’m miserable, I’m making you miserable, and I’m making Emily miserable I conclude.
I am desperate.
Maybe there is something new they can do, I suggest, almost trailing off half way through my sentence.
The thought feeling so fragile, that grabbing at those invisible straws, no matter how gossamer like is dangerous. But unreal enough, that I can still back away without getting caught up in their web of hope. Or so I tell myself.
My weeks of extensive secret google searching had come up with nothing.
Nothing I didn’t already know.
Nothing, which suggests “this”, could be done, and would succeed. But my research felt hollow. I knew I was missing a massive peace of the puzzle.
surely there had to be medical advancements and journals I couldn’t or didn’t access.
But I am desperate and frustrated. I am Oh so desperately desperate.
Life was getting harder by the second.
Things I could see, or thought I could see a week before, or a week before that, were no longer in existence. Accept when they were. Or when they weren’t. Or when they were… But they weren’t. But they were. But they weren’t…
Much like a dementia patient who gets upset every time she learns of her husband’s passing because she has no short term memory; every time I literally close my eyes in a bid to find a reprieve from the brain strain of trying to see what clearly wasn’t there, because if it was there surely I would be able to see it: Only to open them again and find the same nothing, a jolt of electricity bolted unbidden through my being, and I had to deal with the shock, disbelief, mortification, frustration, anger, and grief of the process all over again, as if this were a brand new never discovered before development.
It didn’t matter if it was once a day, twice a day, or ten times a minute. Each instance was the same ouch, the same sickening feeling, and the same sense of out of control. But still my mind constantly continued on as though none of this was actually real.
Surely all I had to do was concentrate more, pay attention better, look, listen, feel…
I knew the car was right there, as I had heard Michael strap baby girl into her seat. So why couldn’t I make it out? A car is a big-ticket object. And let us not discuss the house. How can it not be there? I in the right place? Am I imagining the whole thing? Am I going mad? I was awake, right? But it wasn’t just the car. It was the butter, the milk, the baby, the bed, my hairbrush… It was almost every detail of my life.
I tried to deny my life getting smaller and more regimented, but the truth was that it was shrinking into itself, just as I was.
One lift to work from Michael on a rainy day had turned into a lift every day.
One decline of a social invite had turned into almost an anxiety about going out at all.
One missed door way, wrong angle, bad day, moment of confusion, glass of spilt milk, jammed finger, bruised hip, banged head, burnt cake, broken toy, unclean face, knock into Little, and so many other seemingly insignificant things had turned into a regular occurrence.
The narrative in my mind said that it didn’t matter, but my actions told a different story.
. What the fuck am I going to do when Little is out of nappies and needs the bathroom when we are out? Not that we go out any more, but what if we do? I want to take her out, but I am afraid. I tell myself I am tired. But really, really I am afraid… were the types of scenareos that scambered through my mind like a plague of rats on a regular basis.
I probably needed to talk to my friends more, but was afraid of being ridiculed. No no ridiculed isn’t the right word. I was afraid of something far deeper. I was afraid of myself. I was afraid I couldn’t articulate my questions. What did I want to know how to do? I couldn’t even answer that. So how could I ask?
I kept wondering how my friend Jo had done it with three little ones, how my friend Rochelle does it with her four, or how my friend Krystal knocks it out of the park with her one. But I dare not ring them to find out. Telling myself they would be too busy to talk to me anyway. Umm yeah hi, so I actually don’t know how to live right now, so could you download everything you have, so I can just nail this sucker to the wall the way you do?
My fear about falling off a train platform in spite of the way finding markers was at an all-time high. I had no edge between me and the train tracks, and I was afraid my skinny cane would not pick them up given some of the rougher platform surfaces I frequented.
I trusted it, well I used to, but clearly now not enough. One stick, one woman, and one big bad arse world? I wasn’t sure the odds were in my favour. What was I to do without the contrast of colour for guidance? Speaking of which, when had that vanished? How had my love of colour not been strong enough to keep it from disappearing?
And oh my God, trying to find the train doors, when I could no longer identify the yellow had become a nightmare. Thank God they beeped. But how do people do it in other places where they do not, or they are not automatic? Seriously, one hand on my cane or a dog as the case may be, and the other full of shopping and/or a toddler, then how is one supposed to open said door to embark or alight from the train? What do I give up, the toddler, the dog, the shopping, my coffee, or my cane? Oh I know, I’m supposed to wait for a random stranger to open it for me, or offer to carry my goods or take my child – because yes, that is dignified. Why didn’t I think of that. And yes, that is a sure fire plan. Because yes, there are always other people around… Need I continue?
That groove in the couch where I would curl up of an afternoon was becoming deeper. And Emily knew that it was exactly where she could find me most of the time.
My need to reach for my husband for reassurance had become more frequent.
I did not know how to do this, let alone be graceful about it.
Emily had stopped asking me for things and would simply go to her daddy. Even she knew something wasn’t quite right. And my heart would break for her on a daily basis. The guilt causing me to clam up even more.
We would play together, but I could feel a pain of glass between us, and it was as if I was letting each of us down. We all knew I was better than this. We all knew I wanted to be better than this.
I didn’t know what I needed, wanted, or wished. But I knew I had to give it one last crack.
My friend Chris, otherwise known as Blind Scooter Guy, and I have often argued about what is worse; going blind in one hit, or having it happen gradually.
He is under the illusion that if it were to happen gradually, one could prepare physically, emotionally, practically, and methodically for it, the way one studies for an exam. And although in theory that may be true, and to a tiny extent is possible, it really isn’t.
I am of the belief that when it comes to blindy world, consistency is the key. And going blind gradually doesn’t allow for consistency. In a sense the goal posts keep moving, so a girl cannot adjust. Or when she does, it isn’t permanent before things are on the move again, and the rules of the game change.
Yeah sure in theory it is nice to think that one could be prepared. But there is no preparing for going blind. No matter which way you go about it.
He did it within a matter of weeks, which although unimaginably tragic and shocking, meant he got to start from scratch and learn everything all over again with the stability for want of a better word, that this is all there was. And unlike me, he has such a way of self-expression that only comes from having sight. When he describes to me his hand jesture or faces he pulls when public speaking, I am in awe of the ease and naturalness he achieves his ends.
I never would have thought of that, I think to myself as he practically audio describes what he is planning As not having ever properly seen, I have no frame of reference for such theatrics So does that translate across to other skills? What else does his cellular memory tell him, I wonder. Is it a help or a hindrance. By this I mean does it make certain tasks easier, or does it just highlight the unbridgeable gap between now and then The now of how the hell am I supposed to do this, and the then of that was so easy, so quick, so simple, so straight forward, so freeing, so successful, so taken for granted, so pretty, so different, so whatever…
Of course This isn’t to say his demise from visually talented was easier, as I am sure it was not. but surely a girl in my position has to wonder if there is anything to be said for ripping the band-aid off in one hit. Not that I would wish it on anyone of course. While a guy in his position has to wonder about easing into it like a warm bath. But ultimately when the fence line disappears, the grass isn’t any greener.
Although I have to confess, the skill of already being able to use my adaptive technology, was of great comfort. And the thought of not having that ability was like falling over the abyss.
Tumbling down down down down down…
At least I knew how to say hey Siri, call Liz. Or I could type an email, read a reply with my screen reader, or understand the G for ground brailed on the lift. So in that way I had the most massive of advantages.
Thank God for that, I thought one afternoon as I tried to find the chocolate I had dropped on the kitchen floor before Little did.
We still haven’t introduced her to sugar, and are hoping to put it off for as long as possible.
So to those who have the shithead misfortune of going blind unexpectedly all in one go, my hat goes off in a whole new deeper only you can know if you’ve been there respect.
I mean I thought I could understand and empathise before, but holy crap, I knew nothing. And I apologise now for any judgement I may have held about how you did or did not do life in that or any other regard. Because fuck me, it is hard. It is stupidly hard.
It takes a herculean effort to pull it together and reassemble a universe. So no matter how long it takes, or how slow your progress, know that you have my support no matter where you are in picking up the puzzle pieces of your shattered reality.
And if you ever want to talk…
I will listen to just how much you hate the world and everything in it.
And let me just say, that is entirely ok. You get as angry, frustrated, hurt, lonely, misunderstood, isolated, sad, anxious, and whatever else you want. And yeah, you’re entitled to feel the injustice and unfairness of it all. You’re allowed to struggle, and scrape, scream, scratch, and screw it up.
And no, you don’t actually have to overcome, adapt, or make anyone else feel better about your predicament.
Even though at some point you will.
It is funny what becomes normal, and just how resilient the human spirit is.
So yeah as much as that old saying goes, only you can make you happy, you don’t have to be it straight away. Take the time to work through your grief. Take your time to figure out who you are. Take your time to explore the world, no matter how big, small, daunting, or daring. And yes, there are those of us who have walked the path before you. But that doesn’t mean we’re any better at it.
Follow your instincts, and if you ask for help, but are made to feel like shit for doing so, then remember, you can always ask somewhere or someone else.
Unfortunately blindness is not like that craving for chocolate biscuits that passes if you ignore it long enough.
And for those who are doing it the long way, umm yeah, well the same goes. You’re allowed to suck. You’re allowed to be scared. And you’re allowed to succeed. And you’re allowed to say, be, and do all of it simultaneously.