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Back From The Brink Part 9

The Scarlet Letter

I begin to wish more and more for that robo-dog. Because of course that will solve all my issues, right?

Ok, so it would solve a lot of them. But again how do you explain to someone why something so crucial to your survival, but is not crucial to theirs, why it matters the way it does.

It seems to me that when it comes to blindy technology, it is stuck in a rut.

Each week I read about some new innovation or invention that is designed to help, yet a pattern seems to be emerging. The same thing time and time again, with the same weaknesses, same glitches, same pain points, but in different packages.

Honestly, I don’t need yet another system that may or may not be accurate depending on a trillion different factors, that is supposed to tell me where an obstacle is, or the name of a shop, the colour of a shirt, read an electronic book, scan a printed article, or any number of other useful details, when what I really want is something to literally guide me around said obstacle safely. As in yes, literally. Like a dog would but without being an actual living human dog.

After all it doesn’t matter if it is a person, pole, or peace of construction scaffolding. Either way, they are obstructing my path. And as for the accuracy, yes it matters. Metres matter. Centre metres matter more. It is always between the last five metres, and fifty centre metres that can throw a girl off. Why don’t sighted people get that?

In my opinion, that inventors are missing the mark every single time. And once again sighted people are largely deciding what is and is not of importance to people who are blind or have low vision. Be it directly or otherwise. For surely it is almost always sighted people who hold the purse strings, or are the final decision makers on the viability of such projects as an example.

The problem is, you don’t know what you don’t know, and you’re not always willing to listen.

One of the biggest trends I see, is how things may look good in theory, and for all intents and purposes surely they must work, actually lack in function, and we are back to square one in terms of gadgets gadgets everywhere, and not a one to use.

Don’t tell me Oh the market isn’t big enough.

It’ll be big enough when I hunt you down and scratch out your eyes. But I guess until then, I get to suffer through your ignorance and stupid decisions.

Here’s looking at you Sydney Rail with your multimedia advertisements on enclosed platforms as an example.

Don’t think I’m not holding that grudge.

Your indifference is infuriating and insulting.

Sure, there are days where I am more at ease with myself than others, but these are few and far between. Just when I think I have found some level of normal, my vision, or my perception of my vision, or something else I don’t know how to define changes, and I am left flat on my arse and wondering how I got here.

sometimes I manage to find the entire experience fascinating. And become distracted by the obscurity of it all. Wondering from one sound, smell, and sensory experience to another.   Noises, textures, and changes in the environment become excusit in their heightened and more acute states, and there brilliant and beautifully obvious clues to the treasure chest of the world are enchanting. Take that one-dimensional sighties, I think as I drift from one plane to another. Look at what you’re missing out on, and you don’t even know it. You think You’re so lucky, but you don’t have this! You don’t have this world of inner and outer creativity to play within because you refuse it just as you refuse to share your world with me, and you don’t even realise it.

I find fun in the hollowness of a drain, the flatness of a wall, the smell of fresh cinnamon donuts frying in a vat, the echo echo echo off a high high lobby ceiling… Everything apart from buskers. I hate buskers. Why don’t you stop when you see me coming I ask allowed. Don’t they know they are ruining my echolocation, and throwing off my course. Especially in tunnels, when the sound could be coming from anywhere? , But then some dickhead who is no doubt watching their phone instead of where they are going unapologetically slams into me, and I am left shaken, and off my game.

My confidence is already so fragile, and any kind of knock be it physical or figurative is devastating to my progress. And without realising it, I find a way to withdraw from that route the next time I have to travel it.

Blindness is bringing out my bitter, and I am quick to react with an obscenity or two. Which of course washes off the offending person like water off a duck, but clings to me like a bad smell. Ruining my entire day.

What, I don’t fucking exist, I think angrily as I am left to pick up my handbag they have knocked off my shoulder, or scramble for my stick they have kicked out of my hands.

People look at me as though I am a mad woman And part of me thinks let them look.

The crowd is split about fifty fifty as to whether someone usually helps me gather myself. Some people apologise on that other person’s behalf, some blame me for it, and some simply offer me a hand to where I am intending to go.

It is as if everything has been tilted off its axis, and I cannot grasp a proper perspective. Who keeps shaking the snow globe, I wonder as my world turns upside down and round and round as the snow storm deepens.

I want to be ok, truly I do. But I clearly am not.

The simplest of tasks are mountains I have to overcome. My reliance on the good will of others increases exponensually with every passing day. From handing me my coffee when I forget where I put it on the table not three seconds before, to helping me find a seat on public transport, and everything in between.

I find myself wishing I could be that blind chick who could hold whoever’s hand I am talking to, just so I won’t fly away like a speck of dust on the wind. The nothingness is incredibly distracting, and I am not sure how I can keep the particles of my personage all in one place. I take to pulling my hair out, scratching my palms, and bighting my nails, as a way of reminding myself I am human. Although I don’t realise it at the time.

Slowly but surely, I lose my former identity of a competent woman, and become that of a blithering bumbling idiot.

I am surprised as to how well I adapt to this new persona, letting Michael do more and more for me.

He is of the opinion that there is enough hard edges in the world, so of course our marriage should be our soft place. And sometimes for him, soft means wrapping me in cotton wool whether I want it or not. But in this case I wanted it. Hell, I needed it. Lord knew I cannot and am not doing it for myself. So he has to be the soft place for all of us.

When why can’t I adapt to the simple practicality of getting on with the mundanity of things. Everything is so overwhelming in thought, let alone in deed.

It isn’t as though Michael does more as such, but rather I do less.

I contributed by earning the money, but the rest is sort of like going through the motions. My one hundred percent is actually equivalent to a ten percent function, and no matter how hard I try to push through that invisible barrier to somewhere resembling my traditional level of authenticity and optimism, there just isn’t enough fuel in the tank. Be it physically, or figuratively.

I call Emily to me rather than going to her, and get upset when she doesn’t come, even though she is just a toddler and only wants to play. But chasing her around the room to replace a wet nappy is so much work. And she’s so quick! Just as I find her, she slips out of reach once more. And on and on the games continue. I feel terrible for not being as much fun as I would normally be, but it is too hard. I am too tired. She is too fast. I don’t mean to lose pacients, be it via a snappy tone toward Michael or an exaserbated sigh, but I just need her to come to me. I know she doesn’t understand, but when I am on the verge of tears or a migraine almost constantly, what is a girl to do?

Then Michael gets upset with me for being upset with her. When really I am just upset with myself for not being able to find her in the first place, but of course my exhaustion means I have yet again misdirected my anguish and resentment toward them instead of toward the situation. The situation we can do nothing about. What if this is all I have left. What if this is the best part, and the worst is still to come?

Even hanging the washing is frustrating. When really? Really that is ridiculous.

It isn’t as if I no longer enjoy the company of others, especially that of Little and daddy. But rather I am just so disabled all the time. Dis-abled in the fullest sense of the word.

What I mean is, that whole having to work twice as hard as anyone else for an equivalent result is catching up with me, and the time, energy, and resources have to come from somewhere. But in my case, and the case of many others in a similar situation, it comes from everywhere. My work, my leisure, my relationships, and my recovery time. I mean what makes you think I have forty-eight hours in a day, when you do not. Because yes, that is a common misconception of the abled bodied world. They think it is a compliment that I have to work harder, or find a work around for almost everything,  as though I should take pride in that fact, rather than acknowledging that all those little innovations and adaptations have to come from somewhere. But fundamentally I only have what the rest of the world has. So yes, yes there are limitations, and surely, surely that is ok. But Unfortunately society isn’t very forgiving or flexible when it comes to what disability really means and how it impacts everyday living. Because if it were, we would see a different culture, different environment, and different interaction.

In other words, I am shattered.

I stop taking Little to the park, or going for coffee. I even begin to avoid my friends. Being not quite so quick to text or call back. Or worse, forgetting all together that they had been in touch in the first place.

I no longer attempt a trip to the supermarket to buy a bottle of milk, just for the thrill of the chase.

It isn’t as if I have shopped for myself in an age, but I have given up on that being a possibility. And not just because of the money, but because of the infinite details involved in such a persuit.

I used to love shopping. Even window shopping was a pleasure. But in recent years it had become a chore. A terrible horrible unfortunate sequence of events that had to be done.

My sisters live too far away, so a fake date, which is a trip to Kmart in our universe is out of the question. Besides, what would be the point when I can no longer join in the game of how hideous is this top and would you like me to buy it for you?

And I don’t feel comfortable asking any of my friends to help, because I don’t want them to do it out of obligation.

Sure people have offered, but I know it is out of a sense of charity or pity. When what I need is someone who love love loves shopping more than I love chocolate. And that is a big ask. Although now I think about it, I can think of the perfect person for such an undertaking. Ummm, Kat?

I end up only going to work and coming home, and nowhere else.

Michael has to work hard to get me to leave the house on a family adventure Which isn’t how it should be at all.

 

 

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