World Cerebral Palsy Day 2018

Hello my lovely readers

It's been a while, as you'll note from the change in font. (That happened some time ago, too, for accessibility purposes - but I had no energy to write a post then.) Contrary to my usual practice, though, I'm not going to apologise for that; because I took a break for self-care, and self-care is important. So much so that that's the subject of this returning post, which I'm writing for World Cerebral Palsy Day 2018. I have a historical habit of reappearing on this blog for World CP Day, but that feels apt, because I live with CP. So a day centred on awareness of it seems both suitable and sensible to document here.

Not least due to the fact that the majority of the time during my break from blogging has been taken up (alongside my PhD) with navigating my way through new understandings of what life with this condition means. The first year I wrote about today, I focussed on the things I've learnt from CP - I suppose, then, that this year's post deals with things I've learnt about CP. And, as a bridge between them, there is (helpfully) last year's post. In it, I set out some things I wanted to explore and hopefully achieve with my CP (all of which were from my 'Thirty Things Before Thirty' list). Because, reading back over that list this morning, I realised I've met each of the goals I wanted to in the last year, never mind before thirty; perhaps not in the way I might have expected, but things often happen like that.

They were: sit in a manual chair again, fly again, have one professional acting credit, and 'be emotionally and physically ready' for a relationship. 

I won't go into detail about each of them, because that's not the point of this post - but I draw attention to them in order to make that point.

For various reasons, and through help from a variety of sources, I've learnt in the year since the last World CP Day that it means I do things differently. That might seem obvious and, on one level, it always has been. I've always understood it. But I know now that that understanding was superficial, about practical things like needing help with dressing. What I didn't fully comprehend was the more nuanced ways in which my neurology impacted my engagement with the world - that, because CP results from a brain injury, I need to understand my brain if I want to make a difference to how I live in my body, both physically and emotionally.

Again, something I already knew in theory. I've probably even written about it on this blog before; but, when you spend a lot of time doing academic things and are visibly disabled, the refrain tends to be 'well, there's nothing wrong with your brain'. So reminding myself that I'm allowed to take time to work on that brain, and that that is necessary for my success rather than a sign of failure, can take some doing. Especially in the current climate of constant movement and productivity.

But it's working - and it's worth it - so I'm so glad I've been brave enough to give myself that space. It's helping me to be more at peace with my CP, along with many other things.

I hope you're all okay with me doing that, and I hope, too, that you are able to take similar space in the areas you need to do to be healthy (within the parameters of what that means for you). I haven't left this blog completely, and it means a lot that you're still reading.

Love and spoons until next time, and happy World CP Day!

Jx
 

Solace via Shakespeare in Gratitude for My Grandi

Hello my lovely readers

It's been a while (and it's likely to be a while again after this post) but I'm back briefly, having worked hard to find my words. And it feels apt that I'm back today, for two reasons. My last entry, on the last day of last year, was about being back in Canada to visit with my Grandi and Gramma and written, in large part, in gratitude for all the things I associate with both the country and them. This post finds me once again on the other side of the Atlantic, where this weekend we gathered as a family from across the globe to honour the memory of that wonderful man, father and grandfather.

So a sad but significant coincidence, and one which makes me smile. Not least because my contribution to the celebration of his life was a sonnet, and that leads to a further coincidence. Today is the first day I've felt confident enough to write this blog post - and it also happens to be Shakespeare's birthday. I guess it's apt, then, that I may combine in it a homage to two of my great loves, who have both taught me much I treasure. I'm grateful to the bard for giving me the structure (by way of Petrarch) in which I so often seek solace when struggling, and I'm forever grateful to my Grandi for so much of the wisdom which makes up my life's philosophy.

I'm not quite up to my usual standards again yet, so I'll sign off now, and leave poetry to plug the gaps of my prose. Here is my sonnet - a fusion of my three familial cultures (written in the style of a British playwright, about a man from South Africa who lived in Swaziland, and spoken in Canada) that pairs the old with the new and finds gratitude amidst grief:

This sonnet is an ode to dearest Grandi,

who guided my life from its youngest years

to adulthood (with whisky or a brandy)*

and held me when I laughed, or cried hot tears.

But what I feel most, now, is huge thanks,

for all the wondrous moments that we spent

that I may store, secured, in Memory’s banks;

a testament to just how much you meant.

I’m sorry that you never got to ride

your wish in later life (a chair like mine!)

but please know, as I zoom, you’re in my mind;

I promise to ‘keep smiling’, rain or shine.

I’m so sad I must tell you ‘hamba kahle’** –

I’ll try and live the lessons that you taught me.

*He was responsible for my love of

**Zulu for 'go well' - an affectionate goodbye