The Waiting Game
Gingerly I begin to pull the debris of my being together on the Monday morning, in preparation for our pre-scheduled post-surgical proper big girl check-up ophthalmologist appointment. But it isn’t easy. Parts of my psyche are strewn like discarded clothes from a lovers tryst all over the darkened bedroom, and I struggle to collect myself.
My husband brings my tea, and administers my drops. As I am, still to squeamish to even attempt them myself. And it makes him feel useful. So I don’t argue. Not yet, anyway.
Then he helps me gently and carefully washes my hair, as I cannot figure it out. Even thinking about it makes my brain hurt. Let alone actually instructing my body to obey – now that is just asking the impossible. It is as if I can almost feel the wires within my brain that have been cut, and my neuro pathways chaotically bumping up against the now dead ends of previous functioning patterns.
Thinking hurts. I wish I could stop thinking. But the endless talking… Is it this, is it that, is it this, is it that? Worry worry worry. Blur blur blur blur…
Will I ever see again? The doctor’s seem confident, but really really will I see again?
I cling to that day after surgery when I saw baby girl’s pants scamper across the floor. At least my brain knows how to see, I think. Surely, that has to mean something. Please please please may it mean something? May it just be a matter of time? I don’t care how much time. But just a matter of time none the less. Because I’m not sure what I am going to do if it goes the other way.
My thoughts are more of a constant prayer than anything else. But will it be enough?
Things like that are always happening now.
It is as if since the beast has been banished, my ability to do the simplest of tasks, or even remember where I am in our house has disappeared.
Sometimes I stand there, and have to ask Michael where we are, even though a second previously, of course I know we are in the loungeroom, the kitchen, Emily’s room, or the yard. However, what continues to trip me up is the space between the piano and Michael’s desk. I don’t know what it is about that corner, but it is oh so confusing.
It certainly is a strange new world without the monster attached to me.
But Even as scared as I feel, my body seems physically lighter and healthier. It is as if the cateract has been making me sick. Even my thoughts seem filled with a greater happiness.
I come up with an excellent explaination regarding my cateract, and decide that Maybe it in fact was an alien implant, making me see, feel, and be ugliness my entire life. Because yeah, that is totally plausible, right? Well, it can’t be disproved. SO maybe…
The sunlight is blinding as we step out the front door. Even with sunglasses on, it almost hurts with its intensity. But the pain is worth it. Because this is more than I had a week ago. That I am sure of. Until I am not.
Again if Michael didn’t have my hand firmly in his, I would not have found my way to the front gate, let alone up the road, over the station, and across to the surgery.
Is this a zebra crossing I ask as we cross the road, trying to figure out whether I had seen that the last time we walked this way, which had been on the way to the eye hospital five days earlier, and whether it was more blurry now, or less…? Was I seeing it at all?
What if this is as good as it gets, I wondered. Blinding sun, the occasional glimpse of colour, and nothing more. Would it be enough for me? Is it an improvement, or have we made it worse. Maybe nothing would have been better, I continue inwardly. Is there more? I just cannot decide. My monologue is a tangle, and even keeping track of that while we walk is testing my cognitive capacity.
I am so confused, and still so scared. And worst of all, still so unable to navigate or orientate.
It is over here, I say to Michael, utterly convinced we are headed in the wrong direction. How could he get this wrong, I question. I know his direction is poor, but this is ridiculous. We have done this a million times now… This way darling, he simply says in response to my statement, and pulls me toward him as he deftly swings the pram around.
No no no, I think, why are we going this way?
It turns out of course he was right, and I cannot understand how I am wrong. But I sort of can. Because I cannot be trusted. How am I ever going to do this without him, I wonder for the gazillionth time. Already trying to strategize my freedom if indeed this is all I am to have. Wondering how on earth I am ever going to be more capable than I already am. Which incidentally, isn’t very capable at all. How will I walk up the street? How will I get to work? How will I take Little to the park? And how will I ever live the dream of easily finding my favourite coffee shop…
How had I not known where we were? I asked myself. We had done this a million times now. Where had I gone wrong in my mental map. Where was the disconnect between where I was in time and space, and where I was in my mind?
Good God it is dark in here, I say to Michael as we walk into the clinic. I was desperate for it to be different. But it is the same as it was previously. The receptionists were the same; not seeming to recognise us, the lighting was the same, the sounds, and the atmosphere, the everything.
I was disappointed.
I had hoped that because we were coming back to somewhere I had become familiar, and it had been a while, that maybe I would have a measurable difference. But the universe gives me nothing.
Shit, maybe I can see even less, I think as I sit in the waiting room in my now usual seat. As if that is even possible. My flipping and flopping is exhausting. Back and forth and back and forth, my mind goes between the yes I can, no I can’t.
You can go on in now Megan says a disembodied voice from somewhere. So rather robotically and somewhat dejected I stand up and feel my way into the room toward the black chair in the corner. At least we don’t have to suffer through the ophthalist, I think as I make my way across the hard surface of Doctor John’s office.
How are you, asks Doctor John as he enters.
I’m well, I say automatically. Emily and Michael loiter in the opposite corner as usual. The three of us wondering what would happen next. What would doctor John say? Was everything ok? Was this normal? Would we have to go back in and correct anything?
After the routine resting my chin on the platform with lots of papers and pushing my forehead against the bar so the good doctor could see into my eye with the eye-seeing machine thingy, he writes on my record as usual, and then holds up some lens things to try.
We’re going to see if these improve your vision, he says matter of factly.
Why would we do that, I wonder. Isn’t it too soon? Weren’t we waiting to see how things would heel? Things don’t feel very heeled. Everything aches, burns, and feels inflamed.
That’s all normal; Doctor John says when I mention my symptoms.
How am I supposed to know, I wonder. I mean of course I had just had an operation, and yes they had been scraping my eyeball with a knife, but was this normal? I swear to God there needs to be more specific literature on what to expect post-surgery. Because those dot points they gave us weren’t very informative.
Sure they were great for beforehand, in terms of putting my mind at ease, and giving me some indication of what to look for, but if they were going to drip feed me information, then there should be something more comprehensive issued afterward when there is no escape from the journey back to good health.
One lens, another lens, and another lense, followed by the first one again. Do any of these improve your vision, doctor John asks? Nope, I say almost frustrated with him for trying. My head aches. The looking aches. I long for a dark and quiet room and a lay down.
Why are you doing this, I wonder. It is making me feel worse. In fact, I think I might throw up. But if I throw up, my eye might fall out. SO I can’t throw up. But oh God, what if I do? If these were supposed to help, and they weren’t, then what hope was there for me. Maybe we had failed. Maybe this hadn’t worked after all.
Yes there was some bleeding and swelling which needed to stop, but hadn’t it been almost a week? Weren’t we supposed to know by now where I was likely to get?
Oh God it hurt. The pain was almost back to being too much. My brain was beginning to sizzle. Maybe it will explode, I think.
This living with sight/no sight is exhausting.
It is early days yet, he says as we walk out. We’ll try the lense again another day. I’ll see you on Friday.
What will be different between now and then, I think miserably.
Of course I knew we were in the throes of recovery. And of course once the swelling went down, and the blood was absorbed we would know more. It wasn’t that I was impatient, because I knew this would be a slow process. But the pain is making me crazier than usual.
I cannot absorb the nuances of my situation. I am confused, disorientated, and feel as though somebody has cut into my brain and taken my sense of self. None of this feels safe. And I need to feel safe.
But All I can do for now is hold my darling husband’s hand, and drop into the safe.
His safe. Our safe. Because he’s got this. And he’ll make sure we’ve got this even though I cannot.
How will I ever tell my story, I wonder.
My writer’s voice screams and screams for a pen. But my body does not obey. I want to write, but I cannot physically do so. It is as if the typing thingy, yes , because that is what my brain calls it, the typing thingy that people do that thing on, has too many options for me to pick from, and I can’t remember what letters sit where. Even though I have been typing since I was seven years old. Which I know in this day and age is nothing, but back in the last quarter of the twentieth century, that was pretty unusual. Especially considering I learned on an old manual typewriter, which was so big and clunky, that I couldn’t put my fingers in the write place on the home row because the keys were too far apart for my miniature digits.
Although unlike sighted people who complain about not being able to touch type, as a blind kid, that was never a problem. So take that seeing universe! How you can’t do that as a matter of course, and make such a big drama out of it is beyond me. ASDF is not that hard to remember. Surely looking at it takes more energy than not, right.
But there are pressing questions, which I need to answer:
So who am I without a cateract?
Who am I if I am no longer blind?
What will my friends say?
What will my peers say?
How will I introduce myself?
How will I refer to myself?
How will I explain?
I know it is important to sort all this out on the page rather than anywhere else. Because yes, yes this is extraordinary. But I don’t understand. I can’t seem to settle into the being of it.
I always knew that if it were ever to happen, my brain would protect me, and only process as much as I could handle at a time. But trying to explain that to others who wish for me to see, be it out of a deep sense of their own fear of not seeing, or be it a bless their cotton socks good intention if not laced with an inference of my not being good enough as is, is utterly impossible. But it is ok I try to say. I don’t have to see. It doesn’t have to be easy. It can be what it is.
But Would I want to see? Now that was the big question.
If I had the opportunity would I want to see?
Was the only reason I didn’t want to see, because it wasn’t on the cards, and like so many things before it, that was just too far out of reach, and the hope would hurt rather than help me on my quest for something more than survival.
How much of my identity was vested in being a blindy? Again, who would I be without it?
Would the world be too much if I could see it?
Sometimes people would say to me that it was ok I couldn’t see. Because if I did, there would be nothing but ugliness and nastiness.
I often wondered what they meant by that. Considering these were often the same people who not one sentence before had been telling me how much better I would be if I could indeed see the world around me.
So which was it? Would I be better off, or would I not?
It seemed to me that people often want it both ways. Oh it is a shame you cannot see, but oh you’re so lucky… Really, really? I want to say in response. Lucky?
The only reason I am lucky with this is because I have made it so. The only reason I am lucky is because yes I have had to work twice as hard for half the result. The only reason I am lucky is because I have a support network, which is out of this world. The only reason I am lucky is because thank God my personality won’t have it any other way. I am lucky because the alternative is too terrifying to contemplate. I am lucky because there is no such thing as luck. I am simply doing the best I can with what I have, and let me assure you, that isn’t usually very much. And no, sometimes my best isn’t good enough. Sometimes my best isn’t even my best, but it is all I’ve got. Sometimes I fail. Sometimes I fight. Sometimes I don’t even try. . And sometimes, just sometimes, I totally rock this thing.
I use my senses in a different way, but only because I have to. The way you don’t get a choice of what you see, is the same way I don’t get a choice about what I don’t see. So yes, my ears do tend to pick up more. But that is only because I use them more often. My touch is more sensitive, but that only comes with practice. My smell is more honed, but how else is a girl to sniff out that cup of coffee?
Would all these things disappear if I could see?
Nobody really knows.
Which brings me back to the extraordinary position I find myself in. But how to explain it? And more importantly, how do I become comfortable with it, when it has taken me almost a lifetime to become comfortable with the opposite.
Who am I? How do I talk to my blind friends about this? How do I talk to the sighted contingent?
It is such a complex narrative, and I want to be able to manage it with respect, dignity, and power. I am determined not to be railroaded into something I am not, and this is not. But I cannot get my head around it, so how can I expect anyone else to?
Exhausted I collapse on the lounge.
The amount of television Little has gotten in over the last couple of months is ludicrous. But it is all that I can do.
We live on a diet of fish fingers and cheese triangles baked in the oven, because they are the only thing I can cook.
One hand to prepare, and one hand to eat. As in literally. I cannot cope with anything more. Even sweet chilli source is too hard because it takes some semblance of concentration and coordination.
I look toward the backdoor where the sunshine lives, and see nothing but white. I look into the house and see nothing but dark. And for days, this is how it goes.
Every night I sit in front of the television to bond over Master Chef with my husband even though the last thing I want is television with its awkward pace, thumpy music, and whatever those things are that my brain doesn’t yet understand…. and wonder if I can see anything.