With all due respect, honey, you really should slow down. my husband says after we nearly collide with a well-dressed gentleman in a black suit cutting across our path.
I am pushing Emily in her new trike across the station concourse.
It is so much easier than the pram in terms that it allows me to use my cane as well.
On the one hand, the three-weal configuration makes her so zippy and flexible to push around, which is a beautiful and freeing feeling. However, on the same token, that same zippiness causes a degree of instability.
Sometimes that front wheel has a mind of its own.
Well, between it and Emily also having input as to where and when we steer, it can make for some narrow escapes.
We have had our fair share of being up on one or two wheels.
But the speed, oh gosh the speed is phenomenal.
I love it!
For it reminds me of when things were easier, and I travelled faster.
I miss that.
Oh how I miss that…
It is early, which means the sun is behind me, and on any other day…
By this of course what I really mean any other day in the part of my past I like to remember, it should be ideal for seeing where I am going.
But today it is not.
So I am already on edge.
This sucks, I think privately as I peer at the grey maybe there maybe there not obstacle before me.
Well, it could be grey, or it could be green. Who knows.
Step back, Michael says gently, as we approach the lift.
The lady who exits in front of us touches Emily on the head as she passes.
I am mortified at the action.
I become the mama who tells my husband to go and slap her for it.
The gesture may have been made out of love, but she is a stranger, and it is far more personally violating than anything she could have done to me.
I feel as though some part of my soul has been tampered with.
It is as though a part of me, a deep deep precious part of me has been irrevocably changed.
I am almost bowled over.
With all due respect, honey… my husband tries again, obviously unaware as to the cosmic shift, which has just taken place within me, you really should slow down.
Speed is not the culprit here, I retort, defending my point of view with an unjustifiable vehemence.
I wonder why I have to be right on this one.
What has he awoken that I don’t want to recognise.
It will give people a better chance to see you, and for you to see them, he continues.
If people opened their eyes, I think, they would have plenty of fucking time to see me.
Honey, it isn’t going to matter how slow I go, I say allowed, I am not going to see anything until I am on top of it.
My cheeks burn with shame as I say this, because I really don’t want him to know just how bad things have become in that respect.
He did not marry a blind woman, I tell myself as our wedding day flashes across my mind’s eye in a series of snapshots.
His handsome face, a black shirt, the sparkle of our rings in the sunshine, my pregnant belly, the sound of my dress swishing as I waddled, the feel of his hand in the small of my back, our two closest friends, the taste of champagne, our unbridled happiness, the vows we made…
Followed by a brief history of our courtship.
The long phone calls, butterflies at the thought of him, sweet sensual kisses, shared secrets, stolen moments, silly emails, laughter, culinary competitions, deep discussions, and oh the anticipation of everything.
Because I had known long before him that, we would end up as we are.
I just didn’t know it would be this good.
A minor detail of which I am forever grateful.
I love you so much honey.
It is as if my mind is rewinding back to the day we met in a bid to change history but to no avail.
Stop that, I scold inwardly.
Stop that, I say as the love emanates from him like a burning fire, even in my memory.
He has not signed up for this, I think as a pang of guilt shoots through me like a lightning bolt, jolting me back to the present.
I keep trying to reboot, but it is as if some part of my brain, which controls the protein growth on my lenses, keeps shutting down.
Well then, people will see you, he says.
No no no no no, I scream in my head.
Again I wonder what nerve has he touched.
Why or why am I defending myself?
I know he is right.
Ok, I say, trying to appease him. Trying to appease myself.
We both know by my tone I don’t mean it, but at least I am trying.
I will slow down, I promise, with the same cheap tinny hollowness ringing through my words as so often happens when I am not being honest.
If there is one thing I cannot hide from him, it is the truth; my tone always gives me away. And if not my tone, I know it will be written across my expression.
It will just make it easier for others, he says.
Why should I make it easier for them, I wonder. Surely if they use their eyes, they would see me coming.
I don’t even realise how big the chip on my shoulder has become.
I am aware of my environment, so imagine how much more aware I would be if I could see it, I muse.
How could people not be aware, I continue down the linky clinky chain of my thought.
It occurs to me that I have this idea of what having vision is really like, and that even though I like to think I can see, I really cannot.
So how would I know?
This is like trying to imagine what it is like to have children when one does not, I think as baby girl reaches around and tugs on my finger.
Because before having her, I had no idea.
I thought I did, I theorised I did, I imagined I did, but oh how I did not.
This is so much bigger, better, bolder, and busier than I could ever have conjured up in my tiny mind.
Surely having sight is the same, I ask the invisibility.
But it hurts me to imagine.
Because if I brew on it for too long, and by too long I mean any more than half a milli-second, it is as if all my limitations come into sharper contrast, and hem me in even more tightly.
So it is easier not to think about it.
It is safer to sit in the discomfort of denial, because at least there, I can get more done than I otherwise might if I understood the truth of things.
I look up, as in really look up.
Michael is standing less than a metre from me, and I cannot make him out.
I can barely make the outline of a figure, let alone the contrast between his grey jumper, and his handsome ruddy face.
Fuck! I think. Why can’t I see my husband’s face? I used to be able to see it when we stood here like this.
The thought scares me.
I have been in a world of pain lately in terms of everything being so shadowy and dim.
It is as if I live in the river Stix.
Everything echoes around me, but I cannot put a body to the noise.
I am exhausted.
Not just mama exhausted, but exhausted exhausted from trying to see.
Which is a whole other type of exhausted in and of itself.
So add the two together, and it is pretty fucking exhausted.
Honey, but I don’t go as quickly as I would if I could see, I say, again trying to defend myself.
But it comes out as dejected more than anything.
What I mean is, I used to walk much more quickly when I saw more, and now I feel so dithery fithery and incompetent.
As it was, last night I walked home in the dark and ran into three trees, one fence, and somebody else’s driveway, before finally finding my barings. And even after that, I turned too soon and hit the front wall of our property when my husband called me from the front gate.
It is not like me to be that disorientated.
If anything, I pride myself on my excellent orientation skills, and the ability to always know which direction I am facing and where I am in relation to everything else, be it big, small, or otherwise.
So what the fuck was that?
I have walked that route thousands of times.
As in yes, literally thousands of times before.
Every time a car approached from the opposite direction, it was literally blinding. But the same happens when I go from sunshine to shade and back again.
So on those beautiful sunny days when the light is dappled, it is like walking with a strobe light in my eyes.
I cannot cope.
No part of me can do this.
I do not tell my husband any of these things.
Not because I wish to keep secrets, but because I am afraid. I am so afraid.
I am afraid for myself, I am afraid for Emily, and I am afraid for him.
What if he leaves me.
What if Emily doesn’t love me anymore.
What if the world goes dark.
I will be so alone.
My crackling insecurities open up within me like craters to reveal bottomless pits of despair.
As it is, sometimes when we are out admiring a view, and I cannot see it, I wonder what the point is of my being there.
What kind of a life will I have if I cannot see?
A nothing life, I think sadly.
What kind of a life do I have now.
I am angry all the time.
I am angry and I don’t know how to articulate my feelings.
I try to contain it, but it seeps out of me like a black film, which covers everything with its filth and stench.
Everything is just such hard work.
Which means I am such hard work.
Our house has grown steadily darker over the years we have lived there.
Sometimes I find myself yelling at the crappy light fittings for being too well too shitty.
I hate the white light bulbs as they are too white. But I hate the yellow bulbs for being just too yellow.
The florescent stripe in our kitchen used to be my favourite brightest place, but now it is my least favourite.
My least favourite besides the lounge room, the bathroom, or under my treasured standy uppy lamp.
I am just trying to help honey, my husband interrupts my thinking.
I know you are, I respond flatly.
He kisses me ever so softly on the lips in a gesture of love, one which is so familiar to me that my heart aches with its power, to give me a clear indication of where he is coming from regarding this conversation.
I cannot deny his insight and wisdom.
I have to give it to the man, he really does know me well.
What he doesn’t realise is that when I am with him, of course I speed up.
I speed up because it is safe.
He is there to look after us.
He is there as my eyes.
He is an extra pair of ears.
He is the one who clears the path. And if he cannot clear it, he commentates about it.
Therefore, I speed up because it is one of the few moments during my day I get to feel semi-normal.
But again, I do not think to say any of this to him before my train arrives. Because I am too stuck in the fear of it all.
I am trapped in my thoughts, and the psychology of what is to come.
I am already going through the million micro decisions I have to make in order to get on the train and find my way to work.
Have a good day, I say as I lean up to kiss him good-bye.
Have a happy day Little, I say as I lean down to kiss her on the top of her head.
Mummy’s turn I ask as I take my cane from her left hand.
She is obsessed with sticks.
So much so, that we have organised a special cane for her to carry when we are out, so that I can have mine back.
She has taken to holding mine at every opportunity.
It is rather sweet actually.
There is a seat for you on the far side, my husband says as he steers me toward the train doors, and at the last second hands, me my favourite travel mug filled with piping hot happiness.
Thanks honey, I say almost unconsciously as I step into the vestibule.
When what I really want to do is, turn around, wrap myself around him like a blanket, and have him carry me home.
I need to feel the solidity of his body.
It takes my eyes a couple of seconds to adjust.
I cannot focus on the special red seat theoretically placed nearest to the door for either the elderly, parents with prams, or people like me, until I am almost across the carriage.
There is a large berley bloke sitting in the seat immediately next to it, but he doesn’t make a move to give me any more space.
He is practically taking up one and a half chairs, which only serves to piss me off.
Carefully I balance my coffee, my phone, and my cane while I peel off my backpack in the opposite direction of where he is seated.
However, the action rips through my shoulder causing me to wince with the pain.
I am aware of the torn tendon in my right shoulder, and am trying to be mindful of its recovery, but movements like this do not help matters.
If anything, it causes more distress.
I am already self-conscious.
I don’t want to bump the man regardless of how oblivious he may be.
After I settle in, I call my friend Liz to tell her about not being able to see my husband’s handsome profile.
However, our conversation does not reach that far.
She is heading to Canada next week, and I doubt we will have a chance for a proper chat before she leaves.
Clickity clack, clickity clack, the train jostles along.
Almost on impulse, I call Emma, my orientation and mobility instructor.
Hello, she says in her usual cheerful tone.
Hi Emma, it’s Meg, I say just as cheerfully.
Oh, what can I do for you this morning, she says with slight surprised edge to her voice.
After all, we had only spoken a few days ago, and it isn’t like me to get in contact.
Normally she has to chase me down in order for us to make an appointment.
I carry the idea that I can manage without her, even when going to new places. Therefore it is only when I am truly desperate or in need of some how else am I going to get there guidance do I correspond.
Either that, or when someone has broken my cane and I need a new one.
Truthfully, I hadn’t expected her to pick the phone up, and was hoping to buy a little more time.
Umm, we need to have the conversation I don’t want to have, I say trying to keep the emotion from my words.
What conversation is that, she asks with a million things going through her mind.
The guide dog conversation, I respond with a slight tremble.
I am trying not to cry as I continue.
Is this because of the pram, she asks.
Why would it be because of the pram I wonder. I love that thing. It makes such a cool cane. How could a dog make that any easier, I question as I process her assumption.
Where on earth did you come up with that, I ask myself as I wrap my head around the possibility of pushing a pram and holding a dog harness.
I almost shake my head in disbelief, and to rid myself of the awkwardness I envisage.
Nope, this is because everything is so dark lately, I say, a tear rolling down my cheek.
We had discussed the possibility of my needing a dog when I was pregnant with Little.
I had fiercely rejected the idea, and have always done so.
However, it has been the elephant slowly moving into my consciousness over the last twelve to eighteen months.
Inch by inch, bit by bit, until it is so imbedded, that it has crowded out almost everything else out in a bid for my attention.
Its huge wrinkly arse blocking my once positive view to the pretty world beyond.
But still I wondered why were we having this conversation now.
What part of me is so desperate for a solution that I am willing to at least partake in an information session.
Inwardly I am screaming a blood-curdling scream of sadness, frustration, and lamentation.
I know with every fibre of my soul this is not going to work.
But I am also acutely aware I am not the first, nor will I be the last blindy to say so.
And it is that which scares me the most.
Because I really am not prepared to change my mind on this.
As it is, I feel forced into examining the option.
However the truest most intuitive part of me knows, even if I were to play the game, and go along with getting a dog, it would not bode well.
Robo dog, yes. Human dog, no.
I do not want to be the quintessential blindy.
I see the hassles my friend Liz has with having Poppi.
In particular the unwanted attention by people who think, they have the right to violate her space, or worse, the space of Poppi’s.
Good God, I don’t play well with people as it is, let alone if they were to pay me any more notice
The fact that I cannot simply mind my own business the way a sighty can, causes me no end of anguish.
Put it this way, I do not need any other reason to talk to people, or to give them a reason to think they can talk to me.
This is not to say having a guide dog doesn’t work for her, because it absolutely does.
The confidence it has afforded her is phenomenal. And I would never take that away from her.
But as with every choice in life, there are advantages and disadvantages to each.
Just as there is no blanket diagnosis or interpretation of blindness, there too is no one size fits all approach to living with it.
So what I am saying is, a guide dog is not for everyone.
There are a myriad of degrees of blindness, along with a myriad of unique factors including lifestyle, personality, and personal choice, which come along for the ride.
And in spite of a rather naive but no less persistent public perception of afore mentioned disability, or apparent super powers of a dog, a guide dog cannot do or be the alfa and omega of everything.
And no, I don’t need it to love me or be my friend.
And I certainly am not swayed by the assurances that I will indeed come to adore it, and it will become part of the family.
What I need is a way to navigate my environment safely, confidently, and with dignity that I myself can live with.
What I don’t need is the emotionality and sentimentality of others telling me what I should do. Especially when they do not have to live in my once sparkly stilettos.
Oh how I miss those babies.
I wonder if I will ever find my trademark resilience and zest for all things quirky, impossible, and adventurous again.
I am so sick of being this shadowy version of myself.
I used to be fun, I think wistfully.
But she’s so far out of reach now.
I wonder if anyone else has noticed her disappearance, I continue to muse distractedly.
I know the limitations of a dog.
They are not nearly as flexible or lightweight as a cane. And oh God the maintenance…
This is not a price I am willing to pay for what could be considered as a tiny piece of independence.
And I know that.
Or is it?
However somehow I feel I have to apologise to all the dog lovers for my view.
I am all for blindies finding empowerment, in fact I am quite passionate about that.
I mean isn’t that what my plans for world domination are based upon?
Blindies kicking arse, any which way they want!
In fact it pisses me off that I need to explicitly say, I don’t write this to alienate anyone, because I can’t help but think, if I were standing at the opposite end of the guide dog rainbow, my opinion would be far more acceptable.
Dogs aren’t my thing.
Don’t get me wrong, I absolutely love that many of my friends and acquaintances have found their power, and freedom through having a guide dog.
But I know, or at least I think I know, it is not where mine will come from.
I need to find another way.
Surely, this cannot be it for me.
I do not look forward to the day I have a faithful four-legged firry friend by my side, with its wet nose, big eyes, and waggly tail.
If anything, I dread it.
I dread it like taxes, and dental work.
Oh, God how I cringe, squirm, and squeal at that being my future.
Again, why oh why are we having this conversation, I wonder as my mouth opens of its own accord.
We are having this conversation I inwardly counteract because the enormity of what may lay ahead of me is constricting my heart, my mind, my very physicality like a giant cold blooded snake with its creepy long muscular body and intricate diamond pattern not as rough as you might think reptilian skin is slowly squeezing the breath from my body and the will from my being.
I am in so much trouble!
It is almost surreal as to just how scary this is.
This is just like a horror movie, I tell myself. The blood is fake, and the pit in my stomach is not real.
But I can barely breathe, the lump in my throat is so big.
And the blood coursing through my body is way way too real.
Doom doom doom doom, thumps the oaf in my head, almost drowning Emma’s voice out with its big thumping footsteps.
That must be really scary for you, she says with her professional empathy.
Emma knows me as strong, decided, and independent.
Therefore, it must be strange for her to see me as small and vulnerable like I am right now.
I wonder if she has secretly seen this coming.
Probably, I think as we continue our conversation.
But in true Emma tact, she hasn’t said anything.
Although I know that after this is said and done, and there is enough distance between it and us, I will get a non-judgemental I told you so, and we will both laugh about it.
However right now, there is no light, humour, or optimism I can see within the situation.
Right now, I am frightened. SO very very frightened as the vines of pending fully-fledged blindyhood and all the worst thing that means wind their spiky tendrals around my ankles, my knees, my hips, my belly…
Trapping me like an cruel and unjust jailor within their bars.
But I don’t like the dark, I think as my inner child curls more tightly into a ball and begins to weep hopelessly on the inside.
Yep, I say, desperately desperately trying not to burst into tears.
Ok, Emma says, breathing in as she prepares to outline the process.
Yes, she’s definitely been pre-empting this for a while, I think as I listen to her list the various protocol off without hesitation.
Firstly, I will need to go through an information session with a guide dog specialist, who will go through the pros and cons of responsibilities of having an animal.
Then if I decide this is an option, we put the application form in, and wait.
When she informs me of the possible waiting time, I flinch in response.
That is too soon, I think as I struggle to absorb the information.
Again, I wonder why we are having this conversation.
I don’t want to have this conversation a part of me yells rebelliously at the top of its voice.
Inwardly I am banging my fists and kicking my feet furiously.
This is a conversation only for other people
This is a conversation for blind people.
I am not one of those people, I think as she confirms the details of our next meeting.
I am not helpless or hopeless or socially inept.
I am not struggling.
I will myself to fight.
For in my mind, and only my mind, and only equating to me and nobody else, a dog is a sign of weakness.
Utter failure actually.
A double standard may be, but a double standard I hold dear.,
Because surely I can navigate something as simple as a city street, a bathroom, or a supermarket without assistance.
Even though we all know, I cannot.
Because sure confidently being able to identify two sets of toilets in the entire CBD is satisfactory, right?
It is always those last few metres, which completely unglue all my determined work.
Why oh why does it have to be this way?
My vision is supposed to be stable.
This is bullshit, I think bitterly.
By this time, I am almost to my destination, so I have to virtually hang up on her without thanking her properly for her time, and saying good-bye.
I have to go, I say rapidly.
I will need two hands to hop off the train, I continue almost panicked.
Ok, see you later, she says.
My heart thuds loudly with the shock of what I have just done.
It is just a conversation I tell myself.
We are just having a conversation.
This is not like conceiving a baby.
I can still take it back, I think as I unapologetically rush up the stairs, not moving for anyone who might be coming in the opposite direction.
I can still take it back, right?
I have a week to cancel the information session. That is plenty of time, I think as I hasten through the ticketing barriers so I can call my husband and confess my sins.
Hi honey, I say as he picks up the other end.
Ummm, I just spoke to Emma, and she is coming over next week and we are having an information session regarding the possibility of getting a guide dog, I blurt out.
I know this has taken him by surprise, as is evident by the slight hesitation on the end of the line as his brain processes the information before he simply says ok.
I can’t do this anymore, I say, the tears filling my eyes as the dulcet tones of the Queen Victoria Building race past me.
I can’t do it. Everything hurts. I can’t see anything, I say without taking a breath. This time unable to hold the tremor in my voice as I begin to cry.
I am so sad.
So very very sad as I continue on my way to work.
It is almost as though I need the buffer of kilometres between us in order to ensure I won’t fall apart into literally a thousand pieces. Because if he is close, then that is exactly what will happen.
I will break apart completely, and I cannot afford to do that.
So it is while he cannot scoop me into his strong arms, and tell me how much he loves me, and how everything will be ok, that I share my secrets and shame.
What else can he say apart from ok though.
I have given him no choice but to be supportive, and I feel terrible about it.
This only causes me to cry harder as I tip tap along.
Weeping in public is not something I had intended, but nor is it something I am completely adverse to either. Lord knows I have done it often enough over the years.
We can hand it back, right? He asks, the panic rising in his voice.
I can tell he is beginning to run through what this might mean.
Yes my love. if for any reason it doesn’t work out, we can hand it back. But for right now, we are just having a conversation. Nothing is set in stone. Let’s just get it over and done with. It is an option we have to consider, because I am not coping as things are, I say trying to reassure him.
Ok, he says clearly relieved.
Ok, let’s just have the conversation, and we’ll go from there, he says quietly.
I am sorry honey, I wanted to tell you when I got home, but I am just so scared, I say sinking down into the depths of my private pain.
I feel as though my entire being has been ripped open and the world can see the true extent of my frailty.
It is horrible. Utterly horrible.
And for right now, there is nothing I can do about it apart from breathe.
I just have to remember to breathe.
It is just a conversation.
All we are having is a conversation…
But I am afraid.
I am deeply madly sadly afraid that I am out of options, and this is all that is left.
God help me I don’t want a dog.
I am not a dog person.
I don’t think they’re cute.
I think they are work.
What am I going to do?
Oh, what am I going to do?
Swoosh swoosh swoosh swoosh is all I can hear and feel as the blood pumps rapidly through my heavy aching head.
The rest of my body has gone numb.
I cannot articulate anything other than a led pencil outline of where I am in regards to this.
My lack of words only serving to create an even bigger chasm between us.
I want to give him the details of it all, but I am lost.
Lost in my own vulnerability.
Lost in my fear, my grief, my lack of knowing.
Lost in the very real threat of I might faint any second now.
I am lost in the underworld of despair and desperation.
I want him to rescue me, but I have set this up so he cannot.
The guilt eats away at me like a nest of hungry termites, as I say nothing.
No words people, I have no words.
All he can do is sit on the other end of the line and hold the space for me, which he does beautifully.
SO After a long silence, and knowing that I have a long day ahead, I tell my husband I have to go.
Because if I don’t go now, then I am just as likely to turn around and hightail it back to the warmth and safety of his hand around mine, and the sound of his lovely heart against my ear as I lean into the broadness of his chest and cry my eyes out.
Just as with Emma, I know I am cutting the conversation too short.
I am sorry honey, I say. I am so sorry…. I whisper hoarsely as I push the end button on our call.
I know he will be worried all day about my state of being, but I promise myself I will call him later and reassure him everything is all right.
After all, all we are having is a conversation, right?
This isn’t cancer, it is just a conversation, I try and reassure myself as I wipe my wet cheeks.
But why does the world have to be so upside down, I ask allowed as I walk along the busy city street.
This isn’t how I meant it to be…