Pretty In Pink
As I sit with my coffee the following morning, armed with a pair of very dark sunglasses out in the garden, the sun behind me, I can’t help but reflect upon how much more mobile, and how much better I am feeling in comparison to the weekend before.
Come to think of it, there might even be a pudgy outline of a pink blob, otherwise known as Little if I really concentrated. Is that Little? I mean of course it is. But is it? Am I seeing that, or am I making that up?
I still wasn’t ready to leave the house to anywhere apart from a doctor’s appointment, and couldn’t imagine being so. But was the sun less blinding?
I can only sit there for five minutes, but at least it was a start.
Softly, slowly, gently, creepily creepily my faculties begin to respond. Thank God, they have a wisdom of their own, because I clearly do not. I have no idea about what I am doing, or how I am supposed to be doing it.
After another quiet weekend with plenty of rest, plenty of baby girl television, and plenty of tea served by my darling husband, we are back at Doctor Alex’s for another check-up.
Doctor Jenny had organised it on the previous Wednesday, and this was as soon as Alex could see us. It wasn’t originally in the schedule, but holy moly after the week before, we all thought it best to be safe rather than sorry.
Is that footpath pink, I wonder as Michael and I walk hand in hand from the car park to the surgery. If that is pink, and I am seeing it, then that is amazing. And that is definitely more than I was seeing before. My step had more of a spring in it at the realisation.
Yes yes, this was definitely more than before.
Oh thank God for sunglasses.
Oh thank God the sun is behind us.
Oh thank God!
Darling, is that pavement pink, I finally pluck up the courage to ask as I whirl along, faster than I have in who knew how long.
Oh my God, maybe I will be able to walk without a cane, I think, As I run into a pole. Or maybe not, I laugh.
No honey, it is orange. But I guess you might see it that way, he says.
I continue to hold his hand, but maybe I don’t need to. I hadn’t actually realised I had let go, so surely that is a good sign. As I had become so accustomed to clutching at it a little too desperately. Maybe I could navigate this by myself, I question. Maybe things were getting better.
It was hard not to skip.
Sure, the pavement might be pink, but I have to focus. But my head hurt. Everything still hurt.
I hadn’t wanted to take the car. I had wanted to go in the train. I prefer the train because it travels in relative straight lines while the car does not. The car curls and whirls and generally shits me with all that turning and stopping and starting and moving. But Michael had insisted on the car. He always thinks it is easier, even when it is not.
I had amused myself by guessing what colours the cars were that drove beside us.
He didn’t believe me. But I was sure I could see them. Couldn’t I? You’re just listening to them, he said as they whizzed past. Well, yes of course I am, I had responded. Was I seeing them? Was I seeing anything? This was definitely different, because my brain hurt in a whole new way. There was something. I knew it was sunny, surely that had to be something. It was sunny, wasn’t it? Oh God! Make the car stop there are too many things. Too many things… I thought my head would explode. What were those things. They were things things things. I didn’t have a word for them. Just things.Things was my word for almost everything. My mind couldn’t assign labels to things it did not understand. And as it did not understand most things, most things were just things. Apart from the lampshade in my room which was a square. Even though I knew it to be a lampshade my brain interpreted it as a square and gave it said label accordingly.
I got why toddlers were so cute with their sayings. Because yes, a square I knew, and my brain made it fit, regardless of the function. Visually that thing was a square, so a square it was regardless of what other people called it.,
By my calculations, I thought, if we had gotten the train, we wouldn’t have to walk as far. There wouldn’t be as many roads to cross, and it would take just as much, if not less time to hop on that silver bullet, than to hop into our own. So I was sort of mad at him for not understanding my needs.
How was the car easier when we had to walk up the middle of a lane way to get where we were going that other cars also used? It didn’t make me feel safe. And I wasn’t already feeling safe. SO this put me on edge. An unnecessary edge that could have been avoided.
But given the pavement is pink, and I hadn’t realised we were walking up said laneway in the middle of the road until after the fact, all I can do is live with it.
Yes yes, walking up these stairs is easier, I think as Emily and I carefully climb them. I was using what tiny vision I had in a passive way to help keep me upright, and it didn’t take up nearly as much energy as it had the time before when I saw nothing. Because although I cannot process what I am seeing as such in any conscious way, there must be some sort of landmark I am using to help me balance.
So yay me!
But still I don’t trust it. I Don’t trust it to stay like that. With every step, as in literally, I am expecting my eyeball to fall out. I am expecting the next jult to be the one when everything goes blank. What if all those fancy eye diseases happen? The one’s doctor Alex had mentioned at the eye hospital ten days previously. Surely, it is only a matter of time.
The thing with my condition is, they’ve since sort of found a way to prevent it in new borns, which means the research doesn’t really go into a cure for the adults who have the misfortune of being born at the wrong place in the wrong time so to speak. Whereas with other conditions that are either genetic, or age related, there are far more research dollars and emphasis put into them in the bid to find a cure or prevention. So what we had achieved, apart from being a miracle, isn’t necessarily the norm.
I was lucky. I was in the right place at the right time with the right people and the right conditions.
Hello Megan, the receptionist says, as I walk out from the lift, as though I am an old friend, and they have been expecting me.
Good morning ladies, I chirp. Check out my new peepers. I take my sunnies off, and am surprised I cannot see their faces.
Oh, you’re not there, I laugh sheepishly. But of course you are…
They laugh good naturedly, as we all know it hasn’t yet been two weeks, so what am I expecting.
But the pavement had been there, so why not the ladies, my brain argued. Where were they? Had the pavement been there? Oh shit. Maybe I had imagined it. Where are the ladies? No no, there had definitely been a pavement. I make a mental note to check on the way out.
Michael helps me find a chair, and we wait diligently for the ophthalmist
Honestly, I am surprised I can’t find it by myself. But not in that horrible bitchy judgy way I have trained myself into, but in a really, who knew, shruggy non-attached, non-judgemental light-hearted kind of way.
In other words, more like me. In fact it is so natural, I don’t even realise I’ve done it. If anything, I am miffed by it, but more because it feels comfortable within my belly, and not a knot of frustration, resentment, and inarticulate anger I cannot pin down, let alone accept. Because anger isn’t supposed to be a part of disability. Not according to an able bodied world anyway. If I’m angry, then I’ve got a chip on my shoulder. Anger can’t just be anger. It has to mean something more. Something wrong. Something problematic. Something whereby I am being uncooperative and difficult, and I should just get over myself and pretend it doesn’t exist. It is as if I have no right to be angry. Be it about my disability, or about anything else for that matter. Either way, I cannot win. Because if I happen to be angry about something else for example, usually related to my treatment as a person with a disability, then it is misassigned and misunderstood, and again put back on me as my problem. Nothing to do with society’s misappropriation of said projections, projectiles, or promises.
Society at large has a lot to answer for, but instead of listening and respecting me, it sticks its fingers in its ears, and insists on teaching me a level of learned helplessness that it then punishes me for.
Come on in Megan, a disembodied voice calls from the other side of the room.
I make her come fetch me, and lead me properly. I am in no mood for this shit.
So when she directs me to the black chair in the corner with a flourish of her hands and no specific verbal instructions, and then has the audacity to ask which eye we are dealing with, I nearly scream a blood-curdling scream of indignation. I have to sit on my hands so I literally won’t reach out and slap her.
We’re dealing with the right eye, I say rather too sternly.
Holy shit, it was right there on my form.
We continue to go through the motions, and again it is all I can do not to slap her when she asks me to read the eye chart.
What eye chart, I answer frustration oozing through my tone. I cannot see any chart. I can’t even see you. So no, don’t even go to the how many fingers thing I warned.
I have to admit she was pretty expert at putting the almost mandatory eye doctor pupal dilating drops in, but I glared after her none the less when she went to check on something with doctor Alex for me.
I am not sure who is more angry, me or Michael. As he too looks like he is about to blow his top, and God love him, makes it known rather too loudly as the woman exits.
I like Doctor Alex’s room, I think, as he beckons me in.
Michael had been explaining the different eye simulation charts on the wall opposite as we waited.
Doctor Alex’s room is dark the way Doctor Frank’s room had been when I was small.
If I could light my house like this, it is exactly how I would do it I think as I peer around, and try to make some semblance of a picture that will reconcile with my imagination.
Nice and dark, with yellow lights spot lighting everywhere that is important, which don’t include my black chair or me.
So a scary week last week, Alex says as he pulls the eye-seeing machine thingy across.
Obediently I put my chin on the platform with the lots of papers, and rest my forehead against the bar.
Shine shine shine shines the light.
Hmmm, still very bloody. But we don’t really know where that is coming from. We’re hoping it is just left over from the surgery, and your body will absorb it, but we’ll keep an eye on it none the less Alex says partly to me, partly to Michael, and somewhat to himself.
Doctor John had said he didn’t need to see me for three weeks, and I had practically jumped for joy. Because three weeks in specialist terms, especially after my unexpected complication, was like three years. SO surely things were on the up.
Alex was merely a double triple check-up check. Just to make sure.
Ok, so he wasn’t saying anything bad. He was just saying he couldn’t see much either at this point. But given the improvement in inter ocular pressure, and everything else, he is fairly confident things will improve. But as for what this means, we still don’t know.
When can I lift Little again, I ask, pointing to our bundle of joy that is playing with a script Alex had given her earlier.
Who knows, he replies.
Lifting weights had been off the cards until I heeled, but nobody knew how long it would take.
On the odd occasion I happened to try and pick her up now, my eye would ache and strain and become irritated where the stitches were, and I would be convinced it would fall out. But it was so hard not to throw her on my hip the way I always have.
Physical contact is important in our world. As touching her, or touching anyone actually, especially those I love, is my equivalent to eye contact. So although I make her crawl up on me, or I squat to her level, it isn’t the same. But a small price to pay for pink pavement I decide as Alex ushers us to the eye photo machine.
We’ll just grab one of these for your file, he said. Leaving us in the capable hands of one of the countless ophthalmists he had working there.
Well, hopefully I won’t see you again ladies, I smile as we exit the surgery, and we all laugh. Emily gets a sticker for the road, and we head back to the car.
My head is spinning, My brain has conked out, and I need to go home and sleep, I think as we make our way along the path. Everything feels really fragmented and patch worky like a television, which can’t be tuned. The signals are all mixed and muddled. Even the sounds are pinching me. Maybe if the cars stopped, I think, then maybe I will have a chance at deciphering the environment. Stop everything stop, I think as we stand at the traffic lights, waiting to cross the road.
Look, there’s a rocket park, Michael says as we drive along. And in accordance with the Darcy driving rules, if we see a park, we have to stop. So we do a u-turn, find a parking spot, and all pile out of the vehicle. Little racing ahead down the slope ahead of us.
As we wander slowly in and out of the play equipment, it occurs to me I am happy.
And in spite of myself, I am glad Michael has brought us. It is our first proper family adventure after the operation.
Sometimes I think he pushes me too hard, and sometimes I think he doesn’t push me hard enough. But in this case, a spontaneous milestone in the measurement of my recovery is perfectly timed, and perfectly executed.
What better way to celebrate our big win, than to head to a new park on a sunny day and play.
Thank you darling.