Image of an old sailing ship at sea waiting for the light to break through a heavily clouded sunrise.

Waiting For The Light

My husband tells me it’s light outside as he hands me a cup of tea. Gingerly, I begin to pull the debris of my being together in preparation for a post-surgical ophthalmology appointment, but it isn’t easy. Parts of my psyche are strewn like discarded clothes from a lovers tryst all over the artificially darkened bedroom, and I’m struggling to collect them.

My husband administers another round of post-operative eye drops. He carefully helps me into the shower and gently washes my hair, because I literally can’t figure out what steps are involved. How do I do this? I don’t even understand the question, if it is indeed a question. Maybe it’s more of a concept.

Whatever it is, I cannot comprehend the unidentifiable, unnameable fragments of those somethings floating across the astronomy of my mind. It’s as if I’ve forgotten how to do anything, or worse, never known in the first place. Forgetting would simply mean there’s a polar opposite in play, and surely this is a skill I could learn.

Even trying to think about it makes my brain physically hurt. I have to hold my head, as if that will somehow stop the slew of meaningless, random, nonsensical words cutting through my insides. They’re words I no longer place as belonging to anything. Why do they sequence, what do they want and where do they go? Am I supposed to put them somewhere?

Occasionally I catch a thread of familiarity and a vague recollection, but it dissolves before I can put it all together. It’s as if the memory belongs to someone else. The chatter seems somehow separate from me, and I cannot reconcile it in my body. It is asking the impossible. It’s like the wires within my brain have been cut, and my neurological pathways are chaotically bumping up against the now dead ends of previous functioning patterns.

Will I ever see again? The doctor’s seem confident, but really, really will I see again?

Let me explain. I have a congenital eye condition that not only has me well within the bounds of legal blindness, but has been considered inoperable for as long as I can remember. Over the years, my vision quietly deteriorated into darkness without my permission or comprehension, leaving a trail of questions, confusion and chaos in its wake. However, just under a week ago, I had surgery in a bid to bring some of it back.

I am precariously clinging to the day after my operation when I saw our daughter’s bright orange pants scamper across the floor. However, I have not seen them since. I haven’t seen anything really. At least my brain knows how to see, I think. Surely that has to mean something. Please, please, please may it mean something.

Is it just a matter of time? I don’t care how much time, but hope it truly is just a matter of time nonetheless, because I’m not sure what I’m going to do if it goes the other way. The thought terrifies me actually, because now the surgery is a memory, and not a maybe, there’s no possibility in play. There’s nothing but an as yet unknown, unrealised and unclaimed outcome.

My thoughts are more of a constant prayer than anything else. But will they be enough? The last week has been one of the most harrowing of my life. Since the cataract 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 my husband where we are, even though a second previously I know we are in the lounge room, the kitchen, our daughter’s bedroom or the yard. However, what continues to trip me up is the space between the piano and my husband’s study area. I don’t know what it is about that corner, but it’s so confusing.

As I wait for the light, I can’t help but notice how physically healthier and unburdened I feel since the operation. This surely has to mean something, right? I liken it to a toothache that has since been repaired, and decide that the cataract had been making me sick, sapping my energy, snatching my will and stealing my worth for as long as I can remember.

I have to hand it to the doctors. There’s something about my general thought processes that seem happier and more buoyant despite the membrane of fear encapsulating my world at the moment. The only explanation I can come up with regarding the congenital beast is it was in fact 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 it’s a maybe.

The sunlight is blinding as we step out the front door. Even with sunglasses on, it almost hurts with its intensity. How do people do this, I gasp, covering my eyes with both hands in an attempt to stop the stabbing, piercing bright. 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.

Gosh, was that only a week ago, I think. Everything is divided now. There’s a big, fat, unforgettable line firmly drawn down the middle of my life between the before and after. Every thought is laced with a comparison, a question, a dangerous, double edge and an anxiety about what is going to happen.

My husband firmly holds my hand in his, because without it, I won’t find the front gate, let alone make it up the road, over the station and across to the ophthalmology practice. The fact we live within walking distance of one of the most talented and skilled eye specialists for my condition in the country is phenomenal. And to think I’d been concerned when our local GP casually referred us seemingly based more on convenience than any hard knowledge.

Is this a zebra crossing, I ask as we cross the road, trying to figure out whether I’d seen that the last time we walked this way, which was an emergency trip to the eye hospital five days earlier. I wonder whether it’s more blurry now, or less. Was I seeing it at all? Maybe my question was more of a statement based on recollection, I think as I stumble over nothing.

What if this is as good as it gets? Blinding daylight, 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 keeping track of it while we walk is stretching my cognitive capacity to the limit. It physically hurts to think about it. Every step jars my body, jams my nerves and jilts my soul.

I am so confused, and still so scared. And worst of all, still so unable to navigate or orientate. It’s over here, I say to my husband, 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’ve 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 what I can only presume is a corner, but what would I know. I can’t even walk in a straight line by myself, or so I am told. No, no, no, I protest, why are we going this way?

It turns out of course he was right, and I cannot understand how I am wrong. Well, I sort of can, because I cannot be trusted to find my own feet, let alone anything more complex. How am I ever going to do this without him, I wonder for the gazillionth time, already trying to strategise my freedom if indeed this is all I am to have. I wonder how I’m 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 my daughter to the park, and how will I ever live the ultimate dream of easily finding my current favourite coffee shop?

How had I not known where we were, I asked myself. We’d done this so many times. Where had I gone wrong in my carefully choreographed mental map? Where was the disconnect between the previously planned, plotted, practiced and perfected placement of my perception, and the you are here pointer in my mind? Because that was the thing. Nothing was the same, be it in my head or in the external environment. Nothing makes sense.

It’s as if since the operation I’ve fallen down the rabbit hole and am in a wonderland full of white rabbits, mad hatters and Cheshire cats. Nothing feels permanent or stable. Objects seem to disappear at my touch, or appear out of nowhere, or at least I think they do. Everything seems so gossamer like and surreal in its immersion. Nothing is truly distinguishable and the rules keep changing. I am big, I am small, I am here, and I am not.

Good God, it’s dark in here, I say to my husband as we walk into the clinic. I am desperate for it to be different, but it’s the same as previously. The receptionists are the same; not seeming to recognise us. The lighting is the same, the sounds, the atmosphere, and the everything. It’s all the same.

I’m disappointed. I’d hoped that because we were coming back to somewhere I’d become familiar with, 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 if that is even possible. I sit in the waiting room in my now usual seat. My flipping and flopping is exhausting. Back and forth and back and forth my mind goes between the yes I can and 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 where I know the standard black patient chair in the corner resides. At least we don’t have to suffer through the usual ritual of the how many fingers am I holding up test administered by the ophthalmist, I think as I make my way across the hard surface of my ophthalmologist’s office.

How are you, asks my eye specialist as he enters. I’m well, I say automatically. My husband and daughter loiter in their customary corner. The three of us wonder what would happen next. What would the doctor say? Was everything okay? Was this normal? Would we have to go back in and correct anything?

Routinely, we go through the slit-lamp examination. The doctor writes on my record as usual, then holds up some lenses to my eye for us to try. We’re going to see if these improve your vision, he says in a matter of fact manner.

Why are we doing that, I wonder. Isn’t it too soon? Aren’t we waiting to see how things heel? Things don’t feel much heeled. Everything aches, burns and feels inflamed. My head is on fire with the effort of seeing and not seeing. That’s all normal, he says when I mention my symptoms.

How am I supposed to know, I wonder. I mean, of course I just had an operation, and yes, they had been scraping my eyeball with a very, very sharp knife and all sorts of surgical eye instruments I try not to think about, but is this normal?

I swear to God, there needs to be more specific literature on what to expect post-surgery, because those check boxes they gave us aren’t very informative. The literature was great for beforehand. It put my mind at ease and gave me some indication of what to look for, but if they were going to drip feed me information, there should be something more comprehensive issued afterward when there’s no escape from the pain.

Then it occurs to me. How could they have provided me anything more when none of us knew what to expect from the ordeal? As it was, the procedure was an act of desperation on my part, and a calculated risk courtesy of a team of generous, brilliant and extremely innovative ophthalmologists.

One lens, another lens, then another, followed by the first lens again. Do any of these improve your vision, my specialist asks. Nope, I say almost frustrated with him for trying. My head aches. The looking aches. The not looking aches. The wanting it to be different aches. I try to imagine the light, but my need for somewhere dark and quiet is overwhelming.

I’m distracted and having trouble following the protocol. Why are we here? I know it’s important. Is this a milestone? The phrases waft through my mind of their own accord, tugging me away from the conversation. My specialist is using big words, little words and middle sized words which I know I’m supposed to know, but their foreignness holds little sway in comparison to the exhaustion. One more second, one more sound, one more stimulus and I think my brain might explode all over this room.

Why are you doing this, I wonder. It’s 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 lenses are supposed to help, and they aren’t, then what hope is there for me? Maybe we had failed. Maybe the surgery hadn’t worked after all.

Yes, there was some bleeding and swelling which needed to stop, but hadn’t it been almost a week? Aren’t we supposed to know by now what I was likely to get? I have to remind myself this is an extraordinary set of circumstances, so maybe the rules aren’t applicable.

It’s early days yet, he says as we walk out. We’ll try the lenses again another day. I’ll see you at the end of the week.

I leave the ophthalmologist’s rooms confused, disorientated and cranky. Since the surgery, I feel as though my sense of self has been taken along with the cataract. None of this feels safe, and I need to feel safe. I feel raw and exposed. The vulnerability, the question and the unknown of it all grates on every fibre of my person. What if, what if, what if? My mind whirs. What if it hasn’t worked? What if I never feel any better? What if the excruciating, unavoidable, relentless, pin pricking, pulsing, punching me in the head pain never leaves?

All I can do for now is hold my darling husband’s hand as he walks us home. There I will drop into the safety of our family, the safety of our house, and the safety of my husband’s arms. I know he will hold the light, just as he has always done, while we wait for mine to appear.

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