Honey, I am just not coping, I say to my husband one afternoon as I sit curled in the corner of the lounge. Astutely he says nothing, knowing I already have a solution in mind. Let’s go to the doctor and ask him for a referral to a new ophthalmologist, I push, trying to keep my tone neutral. The words are like cotton in my mouth, making me unsure if I should continue, because what if they turn out to be a noose? Losing what little sight I have, or think I have, is driving me out of my mind.
It had been several years since my last proper check-up, but I didn’t want to go back to my previous eye specialist for fear of what he might say. Sure, he was lovely enough, extremely professional, knowledgeable, and highly regarded in his field. However I always thought we hadn’t quite found our footing, and he wondered why I insisted on taking up his valuable time and resources when there was clearly nothing he could do to make my imaginary symptoms of visual disturbance and sight deterioration any better anyway. After all, the proof of stability was right there in front of him.
So what was I worried about? Why was I so concerned, and what did I expect him to say? Because based on his data, everything was fine, regardless of my protestations. Unless he had hard evidence to suggest otherwise, his hands were tied. Besides, even if my eyesight was changing like I claimed, the technology wasn’t available to halt it, so why were we even having the conversation? No, nothing was different, no new techniques had been developed for my particular congenital condition since the last time I asked, and no, he wasn’t prepared to cut into either of my eyeballs as a medical experiment.
I had no understanding of the personal consequences, ethical questions, medical limitations, or larger ramifications of my request. I was just looking for a straw to grasp. Anything to explain away my desperation as I slipped down a slope I could barely articulate, let alone possibly predict how, where, or when it would end. Of course, he was absolutely right to say no in response to my irrational pleas for medical intervention, but it didn’t make it any easier to hear.
The conversation was always the same with every appointment. I would beg him to do something and each time he would flatly refuse, seemingly not even entertaining the possibility even for a second. To my mind he seemed indifferent to my struggle, and his casual dismissal of my complaints left me feeling utterly invalidated, completely confused, and wondering if, or rather fearing I were indeed going crazy. Because this lack of what I deemed useful sight I was experiencing, and was convinced had been quietly ebbing away for years couldn’t be happening. And as one of the state’s best ophthalmologists, surely he would be the man to fix it.
I simply couldn’t reconcile his well-founded, medically grounded, expert opinion with my lived experience, so I just stopped going, hoping that if I ignored it long enough, my symptoms would disappear. After all, it was easy to blame the frequent headaches, eye-strain, brighter light bulbs, uselessness of my magnifying glass, avoidance of my mail, adjustment of my work hours to daylight, my preference for my own company, my sadness about being single, my increasing unreliability, bouts of insomnia, constant tiredness, feeble excuses, grating narrative, self-criticism, harsh judgements, and every other clue on anything other than my ailing, failing vision.
I knew I couldn’t re-enact the same dialogue again. Not with the same person anyway. Imagine the humiliation. Surely if I wanted a different outcome, it made sense to find a different specialist. If the new ophthalmologist said the same thing as the previous, and probably the one before him, then that would be the end of it. How many opinions could I get, or times would it take for me to be told before I gave up my castle in the clouds?
I’m not coping, I reiterate to my husband, rubbing my exhausted eyes with my finger tips for the thousandth time that day as if this time it will somehow solve the problem, and the moment I release the pressure, my sight will become clear, the heaviness will lift, and all will be well with the world. 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 monster in the sense that if you have anything, your brain will insist on using it no matter what, regardless of whether or not you are aware of the cognitive process. However, if there is nothing to see, your brain will simply fill in the blanks with its own fairy-tale stories of assumed contexts and hopeful continuities.
Your balance will go in an act of sympathy, and much of the time you won’t ever be quite sure of just which way is up. For without the subtle reassurance and reliability of a visual anchor, such as the outline of a floor, a door, a ceiling or the sky, your feet, your hands, your sense of smell, and your hearing will not be as easily trusted. There is no replacement for the light, just a series of strategies, compromises, and memories that may or may not be right, thereby rendering a girl a sobbing mess and completely overwhelmed, overloaded, and overcome.
I’m miserable, I’m making you miserable, and I’m making our daughter miserable, I say. The hard, unyielding truth of my words punches me in the chest, so much so I can barely bring myself to say them. I am desperate. Oh God, I am so desperate I can barely breathe.
Maybe there is something new they can do, I suggest, trailing off halfway through my sentence. The thought now having been spoken aloud somehow seeming so feeble. Maybe if I don’t finish the rest of it, I think, then the absurdity of what I am hoping for won’t seem so ridiculous. Maybe if I say nothing else the idea that seemed so reasonable and rational just seconds before can remain safely in the realm of hopeful but not impossible, thus rendering it more of an internal taunt rather than a universally agreed finality. Because what if the answer I seek is a no? Then what? Then how will I live? Is it worse to know, or to not know? I’m really not sure.
The problem is I can no longer endure the question marks of ignorance, assumption, and what history says. It tortures me to hear the same non-answers over and over again. Responses like we don’t know for sure, but what if, and maybe they can are no longer acceptable. I’m not sleeping, I’m not eating, and I’m not speaking because not knowing is eroding my sense of perspective and potential from the inside out, constantly gnawing at me regardless of my promises of disinterest and denial.
My weeks of extensive secret google searching and database trawling had come up with nothing. Nothing new. Nothing I didn’t already know. Nothing which suggested this could or had been done. I am usually so good at uncovering information, but my research simply kept missing the mark. I was going around in circles. The same articles, papers, posts, and narratives came up time and time again but with no substance. No matter how hard I searched, the answers taunted me with their elusiveness, vagary, and vantage point.
Things I can see, or think I saw a week previously, or the week before that, are no longer in visual existence, except when they are. Sometimes they are and sometimes they’re not, but surely they must be. Maybe if I rub my eyes again. They are, they aren’t, they are, they aren’t, but they must be. I can’t distinguish between what I remember and what I can see. My mind is constantly tormented by this. So it goes on and on and on. They are, they aren’t, they are, they aren’t, over and over again, day after day after day. It is literally driving me out of my mind.
I am so confused, rather like a dementia patient who gets upset every time she learns of her husband’s passing because she has no short-term memory. I close my eyes in a bid to find a reprieve from the brain strain of trying to see what clearly isn’t there, but is there because it has to be there. I don’t understand why it’s not there, because if it really is there, then surely I would be able to see it. I open my eyes again only to find the same nothing. It’s like a jolt of painful electricity bolts unbidden through my being, and I have to process the shock, disbelief, mortification, frustration, anger, and grief of the entire situation all over again, as if this were a brand new, never discovered before development.
It doesn’t matter if it’s once a day, twice a day, or ten times a minute. Each individual instance is the same horror, the same sickening feeling and the same sense of out of control. But still my mind constantly continues on as though none of this is actually real. Surely all I have to do is concentrate more, pay attention better, tune in, look, listen and feel.
I know the car is right there. I can hear my husband strap our daughter into her car seat. So why can’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? Am I in the right place? Am I imagining the whole thing? Am I going mad? I am awake, right? But it isn’t just the car. It is the butter, the milk, the baby, the bed and my hairbrush. It is almost every detail of my life.
I have tried to deny my life getting smaller and more regimented, but the truth is that it’s shrinking into itself, just as I am. One lift to work from my husband on a rainy day several months back has turned into a lift every day. One decline of a social invite has 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 my child, glob of toothpaste around my lip, and so many other seemingly insignificant incidents have turned into a regular occurrence.
The story I tell myself says it doesn’t matter, but my attitude, actions, and my avoidance tell a different story. They tell the truth, whereas I clearly do not. What the heck am I going to do when our toddler is out of nappies and needs the bathroom when we’re out? Not that we go out anymore, but what if we do? I want to take her out, but I’m afraid. I tell myself I’m tired. But really, really I am afraid of the types of scenarios that scamper like dirty little rodents through my mind.
I probably need to talk to my friends more, but I’m afraid of being ridiculed. No, ridiculed isn’t the right word. I am afraid of something far deeper. I am afraid of myself. I am afraid I cannot form my questions. What do I want to know how to do? I can’t even answer that. So how can I ask anyone else?
I keep wondering how others do it, 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 or what I want to ask, know, or say right now, so could you telepathically transmit everything you do, know, feel, or think? But preferably without words, tea, sympathy, or anything that might suggest you understand because that would be too hard to take. Understanding would mean you’ve walked this path before me, and if you’ve walked it, then it must be real, and this can’t be real because I won’t cope if it is real, so can we just not talk about it, or anything for that matter because I have nothing left, as in absolutely no capacity for anything. But please, please understand.
My fear about falling off a train platform in spite of the wayfinding markers is at an all-time high. I have no edge between me and the train tracks, and I am desperately afraid my skinny, inadequate, is this all I have between me and a potential cliff cane won’t pick them up given some of the rougher platform surfaces I frequent. I know it will, but what if it won’t?
I trusted it. Well, I used to, but clearly not enough now. One stick, one woman, and one big, bad-arse world? I am no longer sure the odds are in my favour. What am 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? Wasn’t that how it worked? If you appreciated, cherished, loved, and held something dear it would increase. But I’d done all that, and here I was. Here I was without colours and shapes and shiny objects to keep me company. Here I was in this no man’s land of sounds and smells that weren’t nearly enough for me to navigate.
Oh my God, trying to find the train doors when I could no longer identify the considerate coding of yellow had become a nightmare. Thank God they beep as well. But how do people do it in other places where they aren’t audible, aren’t contrasted, or aren’t automatic? Seriously, with one hand on my cane or a guide dog as the case may be, and the other full of shopping and/or a toddler, how is one supposed to open said door to embark or alight from the train? Do I give up the toddler, the guide dog, the shopping, my luggage, my coffee, or my cane? Oh, I know, I’m supposed to wait for a random stranger to open the door for me, or offer to carry my goods or take my child – because yes, that is dignified, and not at all dangerous. Why didn’t I think of that? That is a sure fire plan, because yes, there are always other people around to help someone with limited sight.
The groove in the couch where I curl up of an afternoon is becoming deeper. Our daughter knows exactly where she can find me most of the time. My need to physically, emotionally, and spiritually reach for my husband for reassurance has become more apparent. The simple truth is, if he wasn’t already the cook, cleaner, and primary care giver, he would have to become it. It isn’t that I’ve meant to disengage from the details, but rather I am increasingly distracted by my situation as my brain clambers to make sense of it all. Constantly my neurology is trying to travel the pathways it had always known, but they are blocked. Therefore it is thrown into catastrophe, and there is no room for anything else.
I am furious that playing with our beautiful daughter has become so tiresome, or rather that I have become so resentful, so ratty, so rattled, and so ruined. My limitations upset me. I am sad and shamed that my husband has to take care of us with such precision. Basically my lower brain thinks I’m under threat, and my higher brain has forgotten to reason or relate.
My little girl has stopped asking me for things and simply goes to her daddy. Even she knows something isn’t quite right. My heart breaks for her on a daily basis. The guilt causes me to clam up even further. My body is tight, my mind tormented, and my tirades, oh God, my tirades are terrible.
We play together, but it feels like there’s a pane of glass between us, and it’s as if I’m letting each of us down by my inability to smash through the lack of authenticity. I flounder under the toddler games of chasings, or puzzles, or push me on the tricycle. I am not proud of it by any means, but I try and avoid them or redirect her to something more stationary. Even drawing elephants and police cars on the chalkboard makes me feel like a failure. They never turn out the way I intend, and I know she struggles with identifying my scribbles. I feel like I’m letting her down with my inability to make a circle. How can I teach her if she cannot recognise the creatures she has asked me to portray?
I am afraid to move, as in literally afraid to put one foot in front of the other, stretch my arms, twist my torso, or even attempt to kick a ball. I no longer like swings or slippery dips, and the only reason I climb anything when we’re at the park is because I cannot let our bundle of joy see my anxiety manifest itself so absolutely. So I force myself against every fibre of my being to make it look easy, to make it look fun, and encourage her to follow suit. I want to be a good example, which is why I do it, but oh God, why does it feel like I am failing? Why do I get the feeling she can see right through my facade?
We all know I am better than this. We all know I want to be better than this, which is why I don’t know what I need, want, or wish, but I know I have to give the possibility of gaining my sight back, no matter the risk, or how limited the result may be, one last crack. Otherwise it is going to be impossible to move on, and one way or another, I have to move on.