Out Of The Question
When it comes to the fiction of what would you do if… What would you do if you could have your vision back question; I have always maintained that it would depend on the risk. But risk is transient. Risk is a little shapeshifter, which can surprise you with her guises.
Surgery for me has always been out of the question. Medically speaking, it just hasn’t been possible. While personally speaking, it has been too risky. Why would I roll the dice like that? When I could still function relatively independently, or get myself safely, if not always successfully from one place to another. In other words, when I had some functional vision, I wasn’t prepared to gamble with said commodity unless there was an iron clad guarantee of something greater in return. But as there wasn’t, I simply had to continue on my someday I will figure this all out, and maybe even like myself merry way.
But what is a girl to do when she finds herself without sunlight, and nothing but misery for company?
In terms of my blind friends, I was too afraid to talk about any of it, be it the doctor appointments because that would open a can of wriggly sqriggly wormy questions I wasn’t ready to answer, the potential of such a radical option, the risks, the rewards, or let alone the surgery itself I mean beforehand, because rather like those gruesome urban myth birthing stories people like to tell you when you’re pregnant with your first born, I knew I wouldn’t be able to stomach any well guided, misguided, or otherwise misinformed horror about what I would could or should expect, or what happened to them, a friend, so and so’s third cousin twice removed, a stranger they once heard about, or an article they read.
I had enough of my own wild imaginings to contend with.
Not to mention their hope for me would be too cumbersome, and what if it didn’t work. Then I would feel like I was letting them all down. And I wasn’t sure I could cope with that on top of my own disappointment. Because not only did I want this to work for myself, but I wanted it to work for everyone else.
But on the same token, as much as I love a happy story, I was worried that one or two of them would find it confronting, and see it as something hurtful or as a betrayal of sorts. Especially if they were in a shitty place of their own.
And I couldn’t tell anyone who was sighted, partly because they tend to over simplify things, and put such unrealistic expectations on these types of situations based on their own unconscious and very valid fears of what blindness is, and isn’t.
I didn’t have the energy or willingness to explain that no, no this wasn’t going to be a black and white linear type miracle in their terms even if it did work. And no, no it wasn’t going to make them any more comfortable because as much as they wanted it, it wasn’t going to make me like them in the way that they needed. In other words, totally sighted.
Yep, I would still be too different And going from blind to partially sighted wasn’t a simple step up in the disability hierarchy. It wasn’t a case of being more disabled and then less disabled. Life doesn’t work like that. Disability doesn’t work like that. Life doesn’t work like that. .
I was already feeling small enough without the added pressure, intentional or not. But mostly because my hope, and the hope of my husband, family, and close friends was proving heavy enough.
I never knew that hope could be like that.
I knew it as something with sharp edges that could cut a girl if she let it. I knew it as an itch I couldn’t scratch. But mostly I always associated it with lightness, brightness and the ambivalence, of the star in Pandora’s chest. But this? Oh my goodness. This kind of hope was a led feeling weighing on my being. So in order to feel somewhat protected against the elements, I cocooned myself in relative silence, and hoped it would be enough to keep me warm and safe in the meantime.
The enormity of what lay ahead was making me feel vulnerable. Baring me naked as I relinquished the clothing of my identity.
I had to peel back layer upon layer of the narrative I had lived with for as long as I could remember until there was nothing left.
Who was I going to be?
What would I be?
And what was I going to do if this all went horribly wrong?
Because as sure as hell, I wasn’t doing this well right now, and I knew I couldn’t keep being this bitter, twisted, angry, scared, shrivelled version of myself.
So what was I so angry at?
I was angry at the brain washing of scudo spirituality, which suggests that if you’re grateful for something it will cultivate more of it. When I had always been grateful for my limited vision and the practical opportunities, it afforded me. Such as identifying a well-contrasted door, a pedestrian crossing, a streetlight at night, a red post box, green grass, and the outline of my husband. Yet that thankfulness had not protected me from this sense of loss.
Every time I saw a believe and you can achieve type post on social media, I was apt to scream.
Fuck off, I wanted to shout. This is not a mindset issue that can be fixed with such false platitudes.
No amount of believing I could see would bring my blue sky back. No vision board, no chakra spinning, no meditation of mindfulness was going to restore my sight. So why the fuck then, would I apply said principles to other aspects of my life. I felt so ripped off by the universe. And the salt from such simplistic ideals was grating to my core. I didn’t want to reframe this, I just wanted it to go away. And the pressure to be positive was crushing my spirit. I was being pulverised from all angles, and couldn’t find respite from the battle.
It had all happened so slowly but so fast. Or was it the other way around?
When was the last time I could remember seeing something. Really seeing something as opposed to thinking, I could see it. How did I know the difference? And how the fuck was that supposed to help me now when even making a cup of tea was difficult?
I either under filled the cup, over flowed the cup, or missed the cup entirely.
Oh, my God I was angry.
I was seething with rage, and didn’t know where to direct it
Maybe everything would have been ok, if I could take a break from it every now and then. But it just kept pushing and pushing and pushing me beyond the limits of my endurance. It never slept. It never took a day off. It never even blinked. What was a girl to do? With each new day came more pain.
Oh no no no, I was not adapting to my new reality with grace. I was doing it poorly, and being the worst possible example of what I imagine people expect me to be. Or what I expect of myself. As with my usual style, I was not prepared to roll over and take it for what it was. Because in my world, it was a horrible thing. And this particular brand of horrible wasn’t supposed to happen. I was supposed to be one of the lucky ones with a stable eye condition. I wasn’t supposed to understand what some of my friends have experienced, or are experiencing right now. I was supposed to be the supportive one on the sidelines, feeling helpless, inadequate, and slightly guilty. Because that kind of shit shouldn’t have to happen to anyone. But if it had to, then at least I could show you how to poor your wine without spilling it, and tell you dirty jokes until you laughed in spite of yourself…
Oh how the mighty have fallen, I would think when my best friend would find herself employing the very tactics I had used with her almost three years before on me now. But thank God, she did. Because without her getting down in the trenches with me, and flinging mud at my monsters while whispering inappropriate sweet nothings in my ear, and still managing to help me out with the practical stuff, I don’t know how I would have done it.
Liz, how can I ever thank you?
I had always wondered if there were any advantages in terms of skill sets to be gained from once having sight and then losing it, or if it was better never to have had it in the first place…
I have since decided that nope, I still don’t have an answer to that one. Because there is no answer. There is no easy way. Blindness is hard. Blindness is isolating. Blindness is so many things… But easy in a sighted world is not one of them
For example, I imagine the day one has to give up their driver’s licence, after having such freedom, would split them in two. meanwhile the day I couldn’t get mine in the first place was pretty heart wrenching in and of itself.
My point is, the journey to, or the journey through blindness, low vision, vision impaired, partially sighted, or whatever you want to call it, is fraught with horrible heartbreaking life defining moments that will send you on trajectories that you would rather not be on.
Yes, there are easy days, weeks, moments, months, and situations. But on the whole, it is a slog. An overwhelming time-consuming energy sapping, slog. And if a girl doesn’t keep a sense of humour in her handbag at all times, it could probably kill her.
Meanwhile, I didn’t have any of those blindy gadgets that measure the level of water, tell me the colours of my clothes, read the labels on a tin… I didn’t even have raised markings on the microwave. And I didn’t know whether or not I should invest in them, because who knew what was going to happen next. Besides, it wasn’t like we had the money for such frivolity. Surely, I could cope without that stuff. It hadn’t helped in the past, so why would it be any more so now? Or would it. How was a girl supposed to hold the kettle so she didn’t scald herself. I knew how to hear for the height of the water, but everything was so muddled. It was as if my brain couldn’t coordinate with my environment. Even though it had been managing quite well for years.
Good Lord, I could do anything in the dark, so why now couldn’t I complete the simplest of tasks?
This wasn’t about choosing my own reality. Nobody would choose this kind of hell, I thought with increasing worry.
I would pick up the shampoo bottle and be surprised that I couldn’t read the labels. Not that I had ever been able to read them, but at least I used to be able to pretend.
Everything had become like that now. Everything had become a violation to my identity.
I knew how to do low vision, but no vision? I couldn’t do that. How did anyone else do it?
My close friends would tell me it got easier, but my brain hadn’t given up on being able to see. It still truly thought I could, and would taunt me with that fact every single second of every waking moment.
Even in my dreams, I had lost my sight, so there was no reprieve from the unrelenting mind fuck there either.
I was lost even in my own backyard at times. Where had all Emily’s play equipment gone? Oh there it is, I would mumble as I stumbled over it
I felt so betrayed.
There was nothing for it but to go inward. But when I did that, I only found more darkness and discouragement. And when I looked outward for some sort of reassurance or instruction manual on how to walk this path, all I found were glossy rose coloured descriptions of how people had overcome their adversity. Nobody was talking about how much it hurt. Or how horribly afraid they were. Or how lost they felt. Nobody seemed to be saying that this was shit, and that is ok. Or if they were, the google Gods were withholding it from me. So as much as I wanted to scream and shout it from the rooftops, I swallowed my words of indignation, and simply shut up and shut myself off, and said nothing.
Sure, I told my husband, and my beautiful amazing crazy best friend, but what could they do?
The truth was, nobody could do anything.
I had to do this for myself.
I had to find a way to deal, and deal I would give enough time.
But for now, for now I was doing it badly.
And it wasn’t even as though I could revel in my misery. This was far too raw and real for such self-indulgence.
This was an existential crisis of epic proportions, and I had no control of the outcome.
So in order to survive, I needed to keep my cards close to my chest while I played this round.
The what ifs were enough to send a girl around the bend if she let them. I oscillated between hope and hopelessness for months before hand. And let us not discuss the weeks after. Holy shit they were some of the most harrowing of my life.
So by the time the day finally came, I had waited long enough, and made my peace with the worst.
If it didn’t work, I would find a way to maybe live with it. Although who knew how that would take shape.
If it didn’t work, then we had done everything we could. And I could no longer be distracted by the question.
. SO thank God the technology, the knowhow, and the willingness were all there. As it hadn’t always been this way. So at least in this respect I saw myself as lucky. Lucky to live in this day and this age, and this country of opportunity.
However if it didn’t go according to plan…
The amount of times I imagined how I would give my daughter to my husband and then divorce him, so they could have a better life without me doesn’t bare thinking about.
Sorry darling. But you know I did. You just don’t know how serious I was about it.
I would find a little flat somewhere and rot away, bored to death by daytime television. Yeah, so who else can imagine me doing that?
The last three months in the lead up had almost been like waiting for Emily to be born. I was just so ready, yet so ridiculously not ready. I knew we needed this time for everything to incubate and come to fruition properly, but it seemed to take an age. And just as with Little, the anticipation of what lay ahead was and is so unknown.
Michael was his steadfast self as always, and maintained the vidual of optimism when I could not. And for that, I am forever grateful.
Once again, proving he is the rock in this relationship, while I am the butterfly.
The days weeks and months dragged on forever. And I found it difficult not to talk about it openly with the entire world.
I either try now, or die wondering had become the motto of me, my darling husband, and my amazing team of specialist ophthalmologists as we all played our respective parts in this Elizabethenesc production. Although I don’t think, I still understand as to how close we cut it in terms of timing, as apparently my case was pushed through on an urgent basis and even moved to a different hospital as we couldn’t afford to wait.
Well I thought I was ready.
It turns out I was ready alright. Ready for anything.
Anything accept this!
I definitely wasn’t prepared for this.
I couldn’t prepare for this, because if I had, it would have distracted from what I needed to do in order to cope and adjust to the possibility of what I saw as for me, a absolutely devastating and life ending disaster.
But this is definitely different!