Come on in the doctor says, giving me the once over.
The last time I had seen him, I was preparing for a trek, which never happened.
So in his head I am a strong, gutsy, and independent blind woman ready to take on the world. While in my head I am a weak and pathetic creature who is broken down and cannot achieve anything.
Michael does most of the talking.
Normally I wouldn’t allow him in with me, but this is different. This is something I can’t handle on my own. This is a burden I need help to carry.
We need a referral to an ophthalmologist, he says matter of factly. One hand on my knee for reassurance, the other wrapped around baby girl.
The GP examines my eyes, clearly not knowing what he was supposed to see. Or at least that is how I interpret his actions.
I mean obviously they aren’t like healthy eyes, but how shining a light in them is supposed to help him assess the situation I will never know.
Somebody good, I say meekly.
He seems to pull up the guy who is closest, without knowing anything of his credentials.
I could have done that myself, I think bitterly When what I really mean is I should have done that myself.
Doesn’t he know how important this is to get right?
I need the best ophthalmologist in the state if not the country, and somehow somehow we will find a way.
I will travel to the ends of the earth, if it means a cure.
Oh yeah, I have become that person.
That person who I in a not so past past life have previously vilified or pitied for letting their emotions run away with them. Or laughed and jeered at for their seemingly insane actions.
I had become that person who would buy the snake oil, believe that scam, take that risk, and chase that phantom.
The madness had over taken my rational, and although I was conscious enough to know it, I still cannot help it.
I am acutely aware that as life happens, I was on the other side of my never. You know those nevers that I say I’ll never do, but always end up breaking, no matter how farfetched or seemingly unbreakable?
I need hope, and I don’t care the guise it comes to me in. Just as long as someone somewhere can be convincing enough to make me believe.
I know I am giving the GP power, but I want somebody else to deal with it. Even if only for a second.
I want to be told what to do and where to go.
I want someone else to decide my fate.
I don’t want to be responsible for this.
I don’t want my blindness to be all on me.
I want someone somewhere with a point of view I could align with, and not make it my own entirely.
I don’t want to be alone in this.
I want validation.
I want approval.
I want everything to be ok.
I want someone or something to blame.
And the medical profession is as good a place as any. Because yes, yes that will be acceptable to the general public. Although why that matters, who the fuck can say. But apparently in my mind it is of the upmost importance. And given my mind is pretty well all I feel I have, since the trees have gone, what is a girl to do but go with it.
I know I live in a world of Alice like wonderland, where everything and nothing is as it should or shouldn’t be, but again, there is nothing I can do. Go with it, or off with my head. SO go with it I do. Knowing full well that what I believe to be the matter most of the time isn’t really the matter at all. But Also knowing there is an alternative reality so far out of my reach right now, that this is the easier option. SO yes, yes it matters what society thinks. Because I already feel isolated and alone enough. And this is my way of stringing an invisible thread of commanality and acceptance between it and me.
So I play my part in the social contract, and we all tacitly agree to pretend that yes of course… Because yes, yes I will fit in. Even if it were on the fringes and in the worst way possible.
I can and will be the victim. Because if I do that, then I cannot be held responsible. People would understand. People would be kind. And maybe they’d leave me alone and get off my back. Maybe as a collective they would stop pushing me to adapt to the impossible, and punishing me when I inevitably fall short.
And then I wouldn’t have to think myself out of this situation. Because surely I could, right?
Surely all I have to do is be positive.
That which you resist persists… So I surrender.
Focus on what you want, not what you don’t…
I am therefore I see as my mantra.
So if the GP had said to go to this guy who may not or may reside somewhere in the jungles of brazil, and bight off the head of a larger than life poisonous creepy crawly as proof of my commitment to the cause, while smuggling some not very legal substance down my underpants, I would do it.
The money will find us, I tell myself with my usual customary worry.
The fact is, we don’t have two pennies to rub together, and I have no idea how we are going to afford any of this. But the money will find us I repeat to myself.
Shit, almost a year on, and we still don’t. And still I have no idea how we are going to manage next month. How we have done so this far is beyond logic.
I had been trying to save 10% of my income for a rainy day without Michael’s knowledge, but even that was a meagre amount that in an emergency might only buy us a minute or two.
My husband and I have very different methods when it comes to money management, and never the tween shall meet.
We each worry about it, but in vastly different ways.
Before I know it my GP is on the phone to said Ophthalmology surgery, which happens to be just up the street, and is making me an appointment.
It is a four-month wait he says after confirming the date.
Four months, I gasp.
Don’t they know I need this now.
I am not some biddy with an eye ache.
Doesn’t anybody understand?
I am dissolving into nothing like that sugar cube in water, and nobody seems to be noticing.
But with my usual contradiction, I want to simply have our GP do the research, get the number, and hand it over so I could procrastinate over the decision before taking matters into my own hands.
I want to march up there this very afternoon and be seen.
I want him to make it seem effortless even if it is not. Which is exactly how and what I want everyone to do. Especially when it is a task I cannot do for myself.
This is happening too fast and too slow all at once.
And then I remember how many hundreds of dollars we will need to pay to see said specialist, and I am suddenly relieved at the time laps, as this will give me a little time to squirrel something away for the how have I not factored this expense into my decision making expense. How many dollars per week will that be, and where will I find them? Ten dollars, one hundred dollars one thousand dollars, it is all the same. It is a number we simply don’t have, and it makes me feel sad and a shamed. As that is my job. I am supposed to provide for the family, and I am failing. As in absolutely epically stuffing this up.
I am so sick of this poverty I insist upon, I inwardly chastise as we walk out. my hand in Michael’s as he guides me through the door and out into the street.
You’ll always have to hold my hand, echoes through my head. I had told him this once when we had first started courting as a joke. Even when you’re grumpy with me, I had laughed. And now it was true. But he wasn’t the grumpy party here, it was me. Jokes on me, I think, as I feel the familiarity and warmth of his fingers intertwine with mine.
If it weren’t for the anchor of his guidance I would have no idea where we were going, or what direction we were facing. More and more I am convinced we are walking somewhere when really it is somewhere else. I am always so confused.
It is always so disconcerting not to know where I am, when I should know because I have walked that path a thousand times before.
Why can’t I do this, I wonder for the thousandth time.
Why couldn’t I adjust?
What is wrong with me that I cannot complete something as simple as walking in a straight line.
I always feel so inadequate now.
I am drowning in the middle of an ocean of busyness.
I am always so lost. Lost in every sense of the word.
Sure my house is just over there, but where is just over there.
I cannot be sure of anything.
Nothing makes sense. And I make sense of nothing.
There are so many competing stories in my head, but none of them are adding up.
Nothing feels real. This has to be somebody else’s life, I periodically question.
I know that getting Emma, my orientation and mobility instructor out for a session isn’t the answer. Repetition isn’t what I need, I just have to push through the fear blanketing my confidence.
I have the skills, I just need to call on them.
The thing is, it is always so arduous. There is no longer a comfortable time of day or night where it becomes slightly easier. The whole world is a horror story. And I feel like its’ gullible leading lady. Oblivious to the creepy dude following me, or the dagger about to be thrown at my head…
I had always prided myself on my navigation prowess, but now I am as timid and unsure as a stray kitten.
I don’t even know which way is up most of the time.
I begin to experience dizzy spells on a more and more frequent basis as my balance too betrays me while my brain scuttles and skittles to make sense of it all.
Eyes and ears work very closely together in terms of keeping a girl upright, and how they read the environment. And when one goes, the other often falls in step with sympathy.
There are no landmarks to guide my ship any more. SO every step could be a potential danger or disaster, and my nervous system physically doesn’t know how to fire in the correct sequence. Sort of like trying to accelerate and break with equal force at the same time.
What is worse, I had once when I was far more insecure and less comfortable with my disability, secretly judged others for their lack of confidence. And now here I am, in true karma is a bitch style, feeling the full force of that never-ending disorientation.
So to those who I sometimes thought that all you needed to do was try harder, get some more practice, or get over yourself, I am truly sorry.
I am the worst human being on the planet, I say to Michael as I stumble over a step.
Sometimes my cane feels so flimsy and useless for the task at hand. How was it for centuries, that this had been a blind chick’s only defence against the world? The never-ending vulnerability is overwhelming and exhausting. I am afraid to walk anywhere on my own. How do others do this? How do they adapt? And why am I unable?
It isn’t a sighted person’s version of fear though. It is a fear that only a blind person can know. It isn’t something that passes or can be easily explained. It stretches like sooty sleet across the simplest of tasks. Everything on a neurology level becomes a hazard that needs to be mitigated. Quite simply because it cannot be seen to be overcome. But when every other sense is exhausted, and the hormone response has spiked, it can leave a girl chronically anxious just below the surface as she runs through endless strategies for countless possibilities that cannot all be analysed or planned for but she tries in vein anyway.
It is not a fear that can be separated from self as such. It is a built in mechanism of evolution. And even with the most magnificent of villages, sometimes it can seem unmanageable.
No amount of scrubbing the slime can make everything clean. So one learns to live with the slipperiness.
But a dog, a dog was still out of the question. Or was it?
Every time I almost talk myself into one, I come across a post or a blog or a comment that reminds me why it isn’t a good idea.
Sure in theory it sounds excellent, but in practice?
Ok so it doesn’t sound excellent. It just sounds like hell. But a slightly less a version of hell than the one I would live if I don’t get one.
Oh God in practice it sounds like more work.
Work, willingness, resources, energy, attention, and time I don’t have.
I’d wait and see what the new ophthalmologist said, I decide, quickly dismissing the question from my mind. Not wanting to admit that it has been creeping in as a potential, if unwanted option for months.