World CP Day 2023

Hullo my lovely readers

You may have thought I'd skipped posting this week, as there was no Wednesday update - but fear not! That was deliberate, because today is World Cerebral Palsy Day. And it would be remiss of me not to mark that now I'm blogging again.

It feels especially important after a few (and a bit) years away, actually. The last time I posted for World CP Day was in October 2019. I hadn't even had my Viva. And the initial impetus for starting Wordy and Wheely was as a place to piece together the different parts of, and processes involved in, my PhD. As well as things that were either tangentially, or directly, related - from thoughts on theatre and poetry to progress updates from physio sessions. So my post-PhD plans for this blog (some of which had already begun, like my poetry posts from early 2020) were to continue to use it to puzzle out the ways my life and work experiences intersect.  

Then the pandemic happened, and it turned out I had to navigate that puzzle on some very practical levels. Like everyone, to a degree, of course. I'm not pretending I was alone in that. But the weird thing was that whilst some aspects of the various lockdown measures and similar necessary responses felt as though the world had slowed to my - and other disabled, chronically ill and otherwise vulnerable people's - pace, a great many of its aspects did the opposite. 

They made me question my value. 

And questioning my value meant I questioned the value, and validity, of my perspective.

To an at times exhausting extent. 

Internalised disableism and ableism that I'd worked really hard to work through caught me in their clutches as securely as if they'd never even started to let go.

That made it really hard to write this blog, because who would want to read it?

Those sorts of queries continue to confound me now, as they have done in different ways at different stages of the pandemic's progression. (And throughout my life.) But the other big, if not so weird, thing is that a time where there has been more time - and when health has been a more obvious, and permissible, priority - has allowed me to focus on physio. In physio, I've learnt that my struggles to connect fully with what it means to be in the world, in space, arise from a fundamental lack of self-reference. I've also learnt that that lack of self-reference - of a sense of who and where I am, without prompts from the external world that surrounds me - is the result of my particular kind of brain injury.

And, consequently, the particular kind of CP that comes from it.

So, in physio, we've been putting together those pieces.

Filling in the gaps of the jigsaw which mean, among other things, that I feel like I've been jolted into a different dimension when I move, or when there's a sudden sound.

It's a long process. But I remembered recently that the primary reason I write is precisely to puzzle through processes. 

And processing.

And progress.

Something it seems my mind, brain and body are all finally ready to let me do.

So I have. I've been wary about it, particularly so publicly. I still am. But, last week, a schoolfriend who also has CP sent me an extremely generous message to say how glad they are that I'm blogging again. And this week, not only is it World CP Day, but my family collectively finished an actual rather than metaphorical jigsaw puzzle. The combination of those two things, plus some exciting work developments, made it seem like the perfect theme for this post. 

Image description: A wooden table which has a completed 1000 piece jigsaw puzzle on it. The puzzle has a mottled cream background, and the foreground is covered with illustrations of assorted multicoloured feathers.

Because I'm still putting pieces together.

But some have fallen into place. 

So I'm making progress.

And, when I can't trust my internal references, I'll have this blog to remind me of that.

On this World CP Day, that's a very real relief.

Love and solidarity until next week,

Jx