World Cerebral Palsy Day 2019

Hello my lovely readers

So, I've submitted my PhD, and had planned to be writing a poem a day from the beginning of this month. That hasn't happened yet...because I didn't bank on quite how exhausted I'd be. Not just intellectually but physically. I've therefore decided to postpone the start of the poetry project until December. I'll be writing Seasonal Sonnets then, anyway; albeit from a summery South Africa.

I would usually be sad about the delay - but this post is to convey the opposite emotion. Because today is World Cerebral Palsy Day. And, if there's one fundamental thing I learnt through all parts of my PhD process, it's that the effects of CP are often surprising. This is true even of my still-upcoming viva (where I have to defend my thesis), because that kind of oral exam is in some ways more accessible to me than six hours sitting beside a scribe. Although public speaking as myself remains terrifying, the energy required to have what is essentially an academic conversation is less than I personally need to maintain focus in a more traditional exam environment.

And that's the point of this post. For me, CP nominally and most obviously results in physical impairments like muscle spasms - but it also affects my sensory processing abilities, my energy, and my sense of self as I exist in the world. Literally. Sometimes it feels as though parts of my body have disappeared.

Whilst I was finishing off my thesis, the level of focus required meant that I locked away some of those other symptoms, causing them to manifest more in tightness of muscles and ligaments than fog or processing issues. Now it's done, I've regained some of the relaxation I've been aiming to maintain over the last few years - but the fog and difficulty with processing has seeped back. Because I'm tired.

But I'm proud, too. I PhDid it. And now I need some time to recuperate before embarking on another project which is similarly ambitious in both scope and length. But that's okay. It's life alongside CP. Without which I wouldn't have written my particular PhD, nor probably have developed such a love of poetry.

So, on that note, happy World CP Day, and love and spoons until December.

Jx

#WordyandWheelyWednesdays: Wheeling to the end (of study)

Hello my lovely readers

That plural 'readers' feels a bit presumptuous following such a long break from writing posts, but some habits are nice. Anyway, this won't take (that) long to read. It's just to say I'm back, because I've got a fortnight off before I get feedback on a thesis draft. Then I'll be back to regular posting fairly soon, too, after many, many months away. I submit my final thesis at the end of September, and my first plan once it's in (as a treat after four years of mostly academic writing) is a project where I write a poem each day for a year. Some short, some longer. Thirty-one of which will be sonnets, as part of the Seasonal Sonnets series I've had very varied success in keeping up with throughout December over the last two years. Some of the others might even be haiku, because I've fallen in love with that shorter form and the burst of disciplined creativity it offers since I've had to snatch moments between paragraphs of my PhD.

Either way, in order to have a place to put them, and to keep myself accountable about actually writing, I'm going to post the poems here. Possibly daily, possibly weekly - maybe as part of Wordy and Wheely Wednesdays. Who knows!? Much like the poems themselves, the structure of documenting the project is pretty nebulous. It has to be, until October, but I want to get excited about writing creatively again and poetry - my first, and favourite, form - seems a good place to start.

So if you'd like to read, it'd be great to have you along for the ride. (It wouldn't be a Wordy and Wheely post without some disability puns, would it, eh?)

Love and spoons 'til then.

Jx

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

On Grief, Growing Up and Gratitude: Thoughts for NYE 2017

Hello my lovely readers

I write this rare resurfacing of a blog entry not from the UK but from Canada, where Mama and I are staying with my grandparents in order to offer support to them whilst Grandi is in hospital. Having just returned from a visit with him, I'm now sitting in the lounge of their apartment, gazing out of the (triple-glazed) windows at the late-afternoon sunshine as it hits the snow. I did much the same this morning at sunrise, so I’ve made that the featured picture.

Why? 

It strikes the sentimental poet in me that this image is the perfect summary for the past 365 days of my life - a year in which I have learnt much about the necessary coexistence of apparent opposites. So today's post ponders on some of those, best summarised in the first half of its title: 'Grief, Growing Up, and Gratitude'.

This year, as I wrote when I last came back to the blogosphere for my birthday, and also in one of my summer posts about theatre, I have been repeatedly reminded that beauty can be found amidst (and alongside) bereavement. Saying goodbye to four more special souls, the most in any one of the last sixteen years, has been hard. Yet it was this which inspired me to take on perhaps my most significant challenge yet - walking 100m at Parallel London in September in memory of all the people I've "lost" - whilst still dealing with chronic pain as a result of my spasms. 
  

The intensity of the grief as an abstract concept as well as for individual people also prompted me to seek specific support. Through that work, I have found tools to tackle other traumas, and to begin talking about them. I won’t do so here, largely because I wasn’t the only one involved and they aren’t just my stories to tell, but they relate to the second part of this post’s title, ‘Growing Up’ – and offer me a link to the third, ‘Gratitude’.

The thing is, thanks to starting to talk (and tap!), I discovered that the spasms which have caused me so much physical and emotional pain over the last eleven years had a very specific source. I internalised (and physicalised) my response to events in my childhood, because we were actively discouraged from having discussions. That became clear only in October, when I talked, and the spasms went away. Since then, I’ve been tentatively exploring the physical possibilities of reclaiming my sense of self, and self-worth.

This is not, however, an overcoming narrative – not least because, in many ways, I am just at the beginning of my recovery, especially emotionally. As I wrote on social media, when I at last went climbing again a few weeks ago, I’m halfway up the wall. I know I still have a long way to go (particularly in processing the mental impact of those experiences now I no longer have the pain as their physical proxy) but I can also take stock of how far I have climbed – which brings me, and this post, full circle.

Those physical changes were what enabled me to fly again, and Mama and me to get to Canada when Gramma and Grandi need us. So, in celebrating that, I am acknowledging both gratitude and grief – as well as growing up, actually, because the country I find myself in as 2017 draws to a close was a huge part of my childhood. My feelings about being here are extremely mixed and muddled. That somehow seems apt, though, since (like the sunshine on the snow) those two adjectives capture the essence of my year. Consequently, I’m going to conclude by adding another ‘m’ to the list – ‘motivating’ – and thereby end this post with a triplet to match the title.

I’m not sure what 2018 will bring. It’ll most likely be as mixed as its predecessor; but I’m motivated to muddle through, inspired by gratitude for all the amazing people I have around me.

I hope you can find a way to do that too.

Love, strength, solidarity, and spoons, as always

Jx

Snowy sunrise