There Are Limited Words

I’ve been struggling with writing recently. In part because I am so very tired, but also because I don’t have the vocabulary to express exactly how I feel. I am in a non-verbal space, struggling to cross over into language. If I were still able to dance, that is the medium I would choose right now, because it would allow me to be exactly as I am, a tad jumbled, disconnected and yet cohesive in a brand new way I cannot quite fathom. Yes, dancing would most definitely be my go to. It always was but it can no longer be.

The body always finds a way to express what language cannot touch often in an excruciatingly beautiful way. There’s a place where pain and beauty meet and it’s actually more comforting, more fulfilling than you could possibly imagine.

Surgery and big health battles mark you. There are physical scars that you confront every day. Little mirror reminders that on a good day you can play about with…..Why look! It’s a battle scar, it’s what you have to remind you of the time you soared with the eagles looking down upon this island. Remember how good that was? It’s the mark of your clan, your sisters and brothers have it too, it’s a mark of inclusion don’t you know!

And yes, some days, it’s just a plain old ugly scar…. But who’s to say you can’t live happily enough with ugly?

If I am honest I am struggling to live, as I was in this world. The person that I was in the hours before surgery, I am no more. I am most definitely finding new ways to be and I am in the early-learning stage of experiencing them and putting them to the test.

I am pre-language. Yes, that is where I am. I am also learning who I am from the things I am not and the things I can no longer be or do. It’s a good-enough way of working out who you are. I’ve used it in the past. By eliminating possibilities you open yourself up to new challenges, new ways of being.

But there is expectation. Always there is expectation from others that you will just slot nicely back into the life you had and the person you were before the surgery. That can’t happen because it doesn’t allow for me to be congruent. It doesn’t allow for me to breathe.

I cannot rid myself of a very strong image of walking through a graveyard and wondering whether I might find myself there soon enough. What words would I want on my headstone and how would they reflect the life I’d lived to date? How would I fit in there and how would that space become mine forever?

I can hold that memory with a very small degree of fondness now but it’s taken a while to get to that place.

I still live….

I think it’s important to acknowledge that.

I am still overground.

But I cannot wear the same clothes I used to wear because they feel differently against my skin, because the weight is wrong, the patterns are headache-inducing bold. I need texture. I need darker colours that pull me closer to nature. I need colours that feed me, nothing too floral. I crave simplicity and freedom.

I cannot currently read anything but books from my childhood. I crave a certain degree of simplicity in literature and plot so that I can build myself up sinew by sinew.

I need to sing the same song over and over until it becomes part of who I am. And so that is what I do. Those song words are building blocks and the vibrations hit me where I need it most, in the muscles of my heart.

When I walk outside, the ground feels different beneath my feet. I want to own it because it is my earth as much as it is yours, but it feels softer and yet strangely more resilient. And the sky feels taller and less infinite. Perhaps I am a little like Alice when she fell down the rabbit hole. I didn’t ask to fall, but when do any of us ask to topple down something so dark and unfamiliar?

In the absence of words I often close my eyes and hum. And then I feel. And through feeling and humming I see colour, small faraway pin-dot shots and then huge waves of colour that come right to my fingertips. And I let the colour wash over me and for a while it makes me smile.

And how do I cope with the people relating to me in the way that they always have done? Because it is proving quite problematic.

I want to say to them that yes, I may look the same but I am so very changed that I cannot yet find words to demonstrate that change, and if you hold on for a while, if you’re a little bit patient, then I will find them. But what I can do right now is talk about colour and texture and proximity to what is really real to me in that moment in time, and what really matters.

I haven’t done any of that kind of talking yet…..

Always I am asked how I am doing. I am constantly asked to explain the surgery and the procedures I went through and what my doctors think of my progress. I can no longer do this. I cannot wade through tarnished ground. I cannot speak of myself as a ghost, for who I was then is a shadow self of who I am now. I ask you to respect that, to relate to the person you see before you right now.

I am enough.

It’s a privilege to grow old. Many folk do not make it. I am considerably less scared now at the prospect of ageing. Think how much a soul accumulates during a lifetime! It’s a beautiful thing. The slow disintegration of the body; the aches, the pains, well thanks to ME I already have those. I just want this body of mine to last out as long as it can.

Transition is never easy. It’s an upside down dark space. It’s a well of nothingness with no new horizons in sight.

When I am less physically exhausted, I will return to the words. I hope they will still be there for me, albeit shaped and served up slightly differently. Transition is possible, however painful it is, however broken-down you become, you can build and rebuild from the smallest, the shakiest of materials and that still gives you a good enough chance of succeeding, of living as you need to live. You just require one thing to hold onto. One thing that will pull you through.

I actually have two things right now, so I consider myself blessed. I have music and colour, or colourful music, however you choose to look at it. I’m holding onto both of them super tight.

I haven’t spoken directly of the fear that pervades everything, every test, every surgical procedure and that weaves its way throughout this blog, because I think you can sense it, you can probably feel it. I hope it doesn’t curtail you in any way. I often ride on the edge of that fear, so it doesn’t take me down. Acknowledging it somehow lessens its overall power. Fear is fear and I am myself.

I have a real need to celebrate. I considered having a second birthday this year. Why the hell not? But it’s not quite the degree of celebration I want. I’m still working on it. I want a celebration that fits the circumstance. I want a celebration that honours the struggle in a slightly irreverent manner.

When I’ve figured that one out, I’ll get back to you.


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