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back from the brink part 2

 

Writing The Wolf

 

This is the series  I have been loathed to write. Because I have been afraid of what people might think. Which now I sit here with the winter sun on my back, it seems absolutely ridiculous that I would be paralysed with fear by my own shadow, and the daggers of others.

But I was afraid to memorialise any part of this in case it was caught by Medusa, and turned to stone. And what if I couldn’t undo it?

What if my writing made it so

I tried to tell myself the black ink meant nothing. Nothing at all. But here’s the thing, to me it absolutely does.

If I wrote it, it meant the wolf would be real. So not writing about it made sense, right?

Not writing meant it wasn’t happening. And if it wasn’t happening, then there was still a way out of the nightmare. Or was there?

But what if there wasn’t? Then what?

I now realise with the benefit of hindsight, the reason I stopped blind mama blogging, wasn’t because it was no longer fun, but because I was no longer fun.

Putting it down on the page had just become far too confronting. Because as we all know, the page has a way of drawing the deepest of truths from my being. Which on the one hand is why I love, want, and need it so much, but on the other, oh God it leaves me nowhere to hide. All that unrelenting white space just keeps going and going until it has what we both know I came for in the first place. So I could not pick 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. Not realising that I had in fact 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. I didn’t know how to process it. 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 actually happening. That was still a part of my future. Not of 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, as in my creative way of denial, I was in the this is only temporary, surely, things will get better… I just need to give up coffee, chocolate, or hot chips type thing. Because of course, giving up food that I loved was totally going to bring back the light, right.

Actually adapting didn’t even feel like an option.

I don’t think it 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, and food on the table. And that was pressure enough.

How my husband has put up with me I will never know.

It isn’t as though I have been myself of late.

I have found myself thinking about the merits of the American based system where people are shipped off to blind school 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 is a system I have 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 blindies 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. And 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 sighty society was made even more harsh and jolting upon my return. So rather like a hangover, which these days just aren’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 all those other blindies, where visuals didn’t matter, I would 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. Now they were and are amazing! There is something grounding and comforting about occasionally running into someone I have known since I was twelve, even if we haven’t seen or spoken in twenty years. There is 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 a fortitude I didn’t always have or want to use because what if I needed them for something else. And 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 – probably because they had either not seen it, or 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.

I had always been told that on the one hand, this would never happen to me.

Or rather, that 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, 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 as ever having been spoken of? Or had it simply not been spoken.

I searched and searched and searched my mind. Surely, I would have remembered if someone had said to me, Megs, honey, you’re going to go blind one day.

I would have remembered that, right.

Because that is big! That is not something a girl forgets. That is one of those holy fuck 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?

Would it have been better to have known, or not known? Now that is the question. Would have it hurt more, or helped? Nobody can answer that. And that is the problem with so many of these big philosophical ponderings. There is no good answer. There is no right answer. There is no easy outcome. And there we have it. Knowing, not knowing, preparing, not preparing, none of it changes the end result.

I was acutely 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 have been valuable for me. Just as all those blind mama posts before them are proving to be.

Sometimes when I happen upon one, I can’t believe I wrote it. But I am so glad I did. As they hold so many details, I have since forgotten.

For weeks, my writer’s voice has been crying to be heard. And although I have sat down to pen this post a dozen times, I have been crippled by the potential reactions to my work.

Yeah, as a blogger I understand that it is part of the territory, which is probably why I keep this thing low key.

However if there is one thing I have experienced, it is the blind community can be the most supportive, surprising, and fun loving, but also the most passive aggressive, toxic,  and volatile of environments. And naturally, as a person who does not like confrontation, and would do almost anything to avoid it, it is the latter I have been most frightened of.

I find Blindy town to be an intimidating and unfriendly place. It can be hostile, malicious, and infuriating.

I pick my way carefully on the fringes, hoping not to be singled out for criticism.

Oh, how’s that working, you ask. It isn’t.

From my limited observation, It is a community that cannot seem to agree on anything. Which I guess is 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, but because they want to make the other party wrong so they can feel right. So umm yeah, it can be pretty demoralising.

And the politicking. Oh my god the politicking. It is exhausting.

For example, the arguments about which screen reader technology is better boarder on the ridiculous.

Honestly, who gives a shit people. Just use what works for you, and respect other people’s preferences.

Then there is the whole who has it worse, who does it harder, and whose circumstances suck more competition… I know, right? As in yes, seriously.

It is a veritable mind field of emotional eggshells, angry outbursts, petty jealousies, and secret resentments. Therefore, a girl can quite often find herself unexpectedly ambushed, or suddenly missing a leg for the most innocuous and neutral of comments.

Now it should be understood, although I know it won’t, that of course, not everyone is like that, and there are some great people doing some great work. Some I know, and some I am still yet to have the privilege. But it cannot be denied, there is a less savoury side to the situation.

Therefore After a lifetime of purposely avoiding the community, because I didn’t want to be linked by association to such derisiveness, or be caught in the crossfire. And misidentifying myself with any other sub-culture, accept the one I actually belong to, which is a personal revelation in itself. Given the gazillion different personas, I have tried on and then discarded. Be it career wise, religious affiliation, sexual dalliance, or hobby – No wonder I haven’t been able to find myself, when I have been too busy being everybody else. Trying to live anybody else’s life than my own. Because I had been too frightened and confronted about what that might actually entail. Because what if I turned out to be pathetic?

Well that, and I was convinced I would never actually receive what I most wanted. Which of course was a group of beautiful likeminded peers to laugh, love, and lament with. Not to mention an amazing husband, the cutest daughter, a better relationship with my family, the awsomest pair of red shoes, a coffee machine, and a treadmill… Now if only I could get the prosperity thing happening. Either through a kick arse public speaking gig, or a book, or a fashion label, or as a professional fun runner, or or or… Or to own my own house? Or how about all of the above, and so much more. Because why not aim for the moon, right? After all, if I miss, I will end up in the stars.

It wasn’t until I had baby girl , that I finally began to find my tribe with this blog of all things. And 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 cantation. 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 have asked myself this is embarrassing

I told you I believe the word has power.

Or 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 and sensible logic 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.

I had never been courageous enough to blog, as I assumed I had nothing to say. Even though I had always wanted to be a writer.

Again, it came back to being worried about how people would receive me.

I put far too much stock in that.

But through my words, 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 blindy factor helped. Actually, it helped a lot. But it was so much more than that. I found people from all around the world who had similar values, views, experiences, and attitudes. We could celebrate the triumphs, and rail against the struggles. All the while being able to laugh, and be completely candid. Even our disagreements are not deal breakers, as we are all mature enough to realise they are merely differences which add flavour to any encounter. So thank you everyone. You know who you are. And your warmth, kindness, and supportiveness is cherished, reciprocated, and soul affirming. Not to mention all the awesome advice regarding how to do or in some cases not do stuff.

. And yes, yes there have been times when I wish we weren’t blindies, if for no other reason than it would make it easier to meet up. In a low down logistical sense, if nothing else.

Now if only there were a way I could travel around the world and meet each of you in person. That would be fabulous.

I have to admit, it is pretty good to belong to a secret society that can understand Siri at full speed from 50 paces, or be able to identify anything from within a lucky dip bag by feel alone, or sniff out a bakery, butchers, 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 have been, or laugh when we’re the ones who give the best and most accurate directions.

However it seems when it comes to the blindy community, it is a package deal. You take the good with the big, bad, and bitchy. So although I have come to realise my friends are going to be happy with the outcome of my great gamble, there are those who will probably not be as pleased for my good fortune.

The question is why do I let it get to me so much?

Could it be because I am afraid of no longer belonging? Because surely this will change the dynamic between us. And if I don’t fit here, then where do I fit?

I am afraid of being rejected based on my little miracle. I am afraid people will think I can no longer relate to their struggle. I am afraid of leaving my friends behind. What if they don’t like me anymore? What if in spite of what I thought, our friendship really was based on a primary commonality of disability first and person second, rather than the other way around? I am so uncomfortable with even talking about the recent events in my life with anyone. The story is so big that the words get stuck in my mouth like a wad of bubble gum blocking my airway. And yes of course I know given this should be a no brainer, it is surprisingly fraught with subtle contradictions. Yes, no yes no yes no yes…

Given my previous experiences with the blind community in particular, chances are there will be those who are going to see it as an affront against blindity, which of course means it is a personal attack toward them, yes. and I’m not sure whether I can cope with the veiled accusations, which are sure to be directed my way.

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.

Of course, I have 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 salt 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?

Or 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.

So many difficult questions. But just because they are hard, doesn’t mean they shouldn’t be asked, or answered for that matter.

Lord knows if it were a friend I would be demanding a tell all. Tell me about the headaches, the overwhelm, the crazy good, the blue sky, the ease and unexpectedness of everything. How are you adjusting?

So be warned kids, if this is you, I will be asking questions.

And if it weren’t anyone I knew, then I would simply read the story with interest, and wish them the best. Sure, I would wonder what I would do if I were in their shoes, and be curious about the back-story, and probably discuss it with my friends to get their take on it.     But unfortunately, not everyone is like that. So this could get ugly.

Let’s be honest, Being blind in a sighted world, doesn’t help to cultivate kindness, as often the fight to be heard, recognised, understood, or validated as anything other than a dreg of, or drain on society, is unrelenting. and it can be hard to remember that not everything is or has to be  a fight.

Although at least for me, it is almost impossible to soften toward others when the world finds ever more subtle ways to invalidate me.

A condescending tone, an inappropriate question, taking a photo of my child without permission, refusing to label a button on an app, ignoring me if I ask for directions, not handing me my take away coffee when I have specifically asked, running into me and not apologising…

 

 

Published inAdventures With EmilyBlind Is The New BlakMarried LifeMotherhood

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