I am acutely aware that to have my vision restored is somewhat of a phenomenon. It’s the equivalent of finding diamonds in the bottom of my breakfast cereal. I can barely believe it myself. Could I have actually outrun the wolf? How do I form the words to express something so big and unexpected to the rest of the world? It’s a world far more accustomed to people losing their vision rather than gaining it back. A world of haughty assumptions and expectations.
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 my comprehension, leaving a trail of questions, confusion, and chaos in its wake. So in one oh so desperately desperate effort a little over a year ago, I sought a new ophthalmologist, hoping against hope that they could indeed give me back the blue sky I had long since lost.
I may not have the type of vision a sighted person would consider valuable, but the difference between what I had twelve months ago and what I have now is comparable to winning the lottery. However, I’ve loathed to speak, write, or revel about it, because I’ve been afraid of what people might think. As I bask in the warmth and light of an outcome dividing the what if and the what is, it seems ridiculous to be paralysed into silence by my own shadow and the imagined daggers of others.
Glimpsing The Wolf
I’ve been afraid to memorialise any part of my story in case Medusa caught it in her steely gaze and turned me to stone. Words have always been my building blocks to the world. They are what I use to give everything form, function, and focus. I would be lost without them. If I wrote it though, the wolf might be real. Not writing meant it wasn’t happening. And if it wasn’t happening, then surely there was still a way out of the nightmare. So I dared not risk picking up a pen, because what if it was really, really true, and not just a little bit true.
A little bit true was already impossible. Really really true might have sent me over the edge. So like a dear in the headlights, I just stopped. I froze and prayed the car would miss me. In fact I had already been run over, and was actually having an out-of-body experience as my brain scrambled to keep up.
I was going blind, but I hadn’t realised it at the time. How to process it was beyond me. Therefore, I had not been prepared for it. I mean, I knew it would happen. I hoped it would not, but I hadn’t banked on it actually happening. That was still a part of my future, not my present. Because the present was now, and now was too soon. Now wasn’t one day, one day far away. Now was now, and this couldn’t be happening now. Because now wasn’t here, was it? Nope, now was definitely somewhere else.
By the time I realised it was happening it was too late. Adjusting didn’t seem worth it, because in my denial, I thought it was only temporary, and surely things would get better. There was no need to learn to properly cope or put any long-term strategies in place. Long-term strategies would mean I was in this for the long haul, and to hell with that. I just needed to give up coffee, chocolate and hot chips. Of course giving up food that I loved was totally going to bring back the light, right? Surely by controlling my nutritional intake I could keep the wolf at bay.
If anything, adapting didn’t even feel like an option. I don’t think it even occurred to me. I was too busy fighting a fire I could not see, and could not stop from engulfing me whole. Processing takes time. And it wasn’t as if I could take time off from my life to make sense of it all. I had to keep a roof over our head, food on the table, and the falsehood of functioning alive.
The Wolf In A Different Light
I found myself thinking about the merits of the American based system where people are shipped off to schools for the blind for a while to learn how to live. Sure, it might be intense, but does it work better than simply muddling along in one’s everyday world with all the usual pressures? It’s a system I’ve traditionally rejected, because I think it breeds low expectations, learned helplessness, and a lack of self-confidence or social skills in the real world.
My reasoning behind this is based on the occasional school camps for people who are blind or have low vision I attended as a child. As therapeutic and personally valuable as they were, I always felt I came back from them with more blindisms than ever. It made adjusting back to the normal that I wanted to be seen and known for difficult. It was as though the reprieve from having to fit in with our sighted society was made even more harsh and jolting upon my return.
So rather like a hangover, which these days just isn’t worth that extra glass of red, I often felt that the reward didn’t outweigh the effort. It was as if being surrounded by a temporary community of sameness, where visuals didn’t matter, would make me forget how to behave in a sighted universe.
Sure, letting my guard down was lovely, like a cold drink of water after living in the desert, and I was ever so grateful for the opportunity. And the friends, oh my gosh the friends I made, some of which I still have, they are amazing! There is something grounding and comforting about occasionally running into someone I’ve known since I was twelve, even if we haven’t seen or spoken in twenty years. There’s a kinship of sorts that cannot be undone. There is a shared knowing, a shared struggle, a shared sense of humour, and a shared openness and intimacy that can only come from a shared history, no matter how sporadic.
However, readjusting from those momentary hiatuses took time, and fortitude I didn’t always have or want to use, because what if I needed that courage for something else? I always walked away feeling unprepared and ill-equipped for what the world threw at me.
Sure, my braille music literacy might be a little better, and nobody laughed as I bumped into that pole, but that was probably because they hadn’t seen it, or had already done it themselves. But the fairy floss wasn’t sustainable. I had to be hard and stay hard, otherwise, I would be eaten alive.
Running From The Wolf
I had always been told that this would never happen to me. Going blind wasn’t really on the cards. Accept that it was. It was a probability, but nothing to worry about. So I held on to that last one, and put it out of my mind. Nothing to worry about!
Occasionally I would google my disease, more out of idle curiosity or as a means to procrastinate than anything more serious or thought-provoking, and would be mortified at the high rate of adult onset blindness. They had never spoken about this with me as a child. Why didn’t I know?
Had I put it out of my mind so far that I could deny it had ever been spoken of? Or had it simply not been spoken? I searched and searched and searched my mind. Surely I would remember if someone said to me: honey, you’re going to go blind one day.
I would’ve remembered that, right? Because that is big! That is not something a girl forgets. That is one of those holy shit life-changing conversations that changes the course of history. So why hadn’t I ever had one of those, if this was likely to be the outcome?
Is it better to know, or not know? Now that is the question. Would knowing have hurt more, or helped? Nobody can answer that. And that is the problem with such a big philosophical pondering. There is no good answer. There is no right answer. There’s no easy outcome. And there we have it. Knowing, not knowing, preparing, not preparing – none of it changes the end result.
But that doesn’t stop a girl running from it anyway. Running faster and faster as the panic rises in her chest. Over tree roots, under branches, around boulders, along unforgiving, unpredictable and unacknowledged terrain, her feet barely touching the ground, not because she is majestic and graceful like a dear, but because if they do, the wolf could pounce. This might mean something significant, something that suggests she is anything but a ghost, something she doesn’t want to know.
She prays to a God that may or may not exist, and may or may not be listening. She prays that the hungry, snarling wolf rapidly gaining ground will not catch her, even though eventually it must. Her only option is to push on, willing herself to keep hoping against all evidence to the contrary that none of this is actually happening, and that soon, very soon, she will awaken and find herself warm, safe, and in an alternate reality. Because surely she can outsmart, outwit and outrun it if she simply keeps moving and doesn’t fall.
Please don’t let her fall. Please hide her, help her, or take her out. She is not strong enough for this, she thinks. Don’t let the darkness close in too soon. Don’t let it close in at all. Bring back the sun and the fun and the freedom, she pleads. Running, running, always running. She whispers to the wind as she searches the wilderness – the wolf pursuing her in the shadows.
Fighting The Wolf Within
I was painfully aware that I should have been documenting the daily struggle, because of course, it would be valuable in the future. Maybe not to anyone else, but it would’ve been valuable for me. For months my writer’s voice has been crying to be heard. And although I have sat down to type this narrative a dozen times, I’ve been crippled by the potential reactions to my work. Not only from the sighted world, but also from the disabled community.
On the one hand, the blind community can be the most supportive, surprising, and fun-loving, but on the other, it can be a passive-aggressive, irritating, and volatile environment. Naturally, as a person who does not like confrontation, and would do almost anything to avoid it, it is the shadow self of the community that has me backing away instead of engaging. Personally, I find it all too intimidating, unfriendly, and dangerous, full of hostility, malice, and misery.
I pick my way carefully on the fringes, hoping not to be singled out for criticism, all the while knowing the erratic nature of the collective. There is no escaping the bullying, the harassment, the put downs, or the pain. From my limited observation, it’s a community that cannot seem to agree on anything. I guess it’s because all anyone really wants is to be heard and feel like they matter. Therefore they will defend their opinions to the death, and the more carnage they cause the happier they are.
They will argue for the sake of arguing, but not because they are interested in creating a healthy discussion, transforming the social landscape, furthering the inclusive cause, or bettering the world for all, but because they want to make the other party wrong so they can feel right. Oh, my god, the politicking, personal attacks, power playing, and prickliness is exhausting.
For example, the argument about which screen reader technology is better boarders on the ridiculous. Honestly, who gives a shit people? Just use what works for you and respect other people’s preferences. Then there’s the whole who has it worse, who does it harder, and whose circumstances suck more competition. It is a veritable minefield of emotional eggshells, angry outbursts, petty jealousies, and secret resentments.
A girl can often find herself unexpectedly ambushed for the most innocuous and neutral of comments. It is tight-knit, territorial, terrifying, and not easily, if ever, truly tamed. Now it should be understood, although I know it won’t, that of course not everyone is like that, and there are many amazing people and organisations doing great work. Some I know, yet of course so many more I am still yet to have the privilege. But denying the darker, edgier, more hidden parts of the community doesn’t do justice to anyone no matter which side of the looking glass you sit.
I have spent a lifetime avoiding it because I haven’t wanted to be linked by association to such derision, or be caught in the crossfire. I’ve misidentified myself with any other sub-culture accept the one I actually belong. I’ve had a gazillion different personas in a bid to find my place, but none of them ever really fit, be it career wise, religious affiliation, sexual dalliance, or hobby. I haven’t been able to find myself, because I’ve been too busy being everybody else, trying to live anybody else’s life than my own. I’ve been too frightened and confronted about what being myself might actually entail. What if after all my ducking and dodging and weaving and seething, I am the one who turned out to be the wolf?
Finding The Wolf
It wasn’t until I had my daughter that I finally began to find my place within the tribe courtesy of a blog of all things. Calling it Blind Mama was probably the bravest, most open choice and admission I had ever made regarding my disability. However, sometimes I wonder if by calling it that, I summoned my blindness into existence like a witch’s incantation. Did I make this so? Maybe I ought to have called it something else. But what else is a girl to do when it lands on the page in front of her while she is mindlessly trying to get through Julia Cameron’s The Artist’s Way, and failing for the sixty millionth time? I swear to God, one day I will get to the end of that twelve-week program.
But seriously, was it my finally owning the blind part of Blind Mama that made me go blind? I’m not kidding. The amount of times I’ve asked myself this is embarrassing. My alternative reasoning is that maybe I went blind because my best friend was doing it, and I love her so much that I want to be like her. Could that have done it? Oh yeah, I went there as well. Because surely there must be a reasonable, sensible, logical explanation for what was happening to me. And this is what I came up with. It was either the title of my blog, or the awesome that is my bestie. Nothing to do with the secondary condition of my primary condition, right? That makes no sense.
But through my words, and the words of others, I finally began to feel like there was actually a place I fit, within the niche of the niche, and there were people I could relate to, not because we were blind, but because we were people. Although admittedly, the blind factor helped. Actually, it helped a lot. But it was so much more than that. I’ve found people from all around the world who possess similar values, views, experiences, attitudes, and adversities. As it turns out, I am not the only one who runs with wolves.
Admittedly, it is pretty good to belong to a society that can understand Siri at full speed from fifty paces, or be able to identify anything from within a lucky dip bag by feel alone, or sniff out a bakery, butcher, bar, optometrist, or shoe shop from obscurity, hear a doorway based on a stranger’s heels who in their own self-importance hasn’t realised how helpful they’ve been, or laugh when we’re the ones who give the best and most accurate directions.
However, it seems when it comes to the blind community, it is a package deal. You take the good with the big, bad, and bitchy. I know my friends are happy with the outcome of my great gamble, but there are those who will probably not be as pleased for my good fortune.
Befriending The Wolf
The truth is I have been afraid of no longer belonging to a collective I simultaneously love and loathe. Because surely this will change the dynamic between us. And if I don’t fit here, within the blind community, then where do I fit? Because I sure don’t feel like I fit anywhere else. Losing sight is one thing, but getting it back? How do I even begin to explain?
I’m afraid of being rejected based on the selectivity of my miracle. I’m afraid people will think I can no longer relate to their struggle. I feel I don’t have the right to talk about adapting to my new circumstances with anyone. Because how will they understand. How can they? God knows that if I weren’t in this exact situation I would clamber to keep up. I’d have too many ideas about how easy it would be, how utterly grateful I would be, and how I wouldn’t complain about anything. Then to hear someone in the exact situation I longed for say it is more difficult than expected would be hard to comprehend.
Given my history with the blind community in particular, chances are there will be those who are going to see it as an affront against blindness, which of course means it is a personal attack toward them. I haven’t been willing to handle the veiled accusations, which are almost certain to be furiously hurled my way. I know all too well that I too will take it personally, rather than seeing it for what it is. It’s a cry in frustration, helplessness, hopelessness, and wanting things to be different.
Doubtless, there are those who are going to wish it were them instead of me, and wonder why I get to be the lucky one. There are those who will try to punish me for it just so they can feel powerful about something, even if it is in their own victimhood, rather than see it as a sign of moving forward in the search for sight.
I’ve been reflecting on how I would feel about it. How would I feel if it were someone else in my shoes instead of me? Would I feel the force of the injustice of it all? Would I feel hurt, even just a little? Would it be like gold dust to an open wound that is destined never to truly heal? Would I use it as false hope, and then blame the other person when it didn’t work out? Would it have me examining my own identity as a blind person? Would it be something I would delight in, knowing that someone else was able to experience what the rest of us can only dream about? Perhaps it would be all these things, and more. Or perhaps it would be none. After all, the river of hypotheticals cannot ever truly be traced before they happen. So to map them ahead of time is a waste of time.
Meanwhile I am slowly learning to trust the wolf beside me, and absorb its teachings. A wolf does not worry about the future or regret the past. It uses everything it has to its advantage, and the advancement of the pack. A wolf is powerful, self-possessed, expressive, resilient, and resourceful. It is strong, brilliant, beautiful, and intelligent. It may be misunderstood, but a wolf is free to be itself, and it is this most sacred of gifts it offers us if we are brave enough to accept it.
So I write about running with the wolf not only as a means of discovering my own identity, but for anyone who has ever questioned who they are, what they’re doing, why this is happening, or where they belong.