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

#SeasonalSonnets 2017: 9th December

Hello my lovely readers

A late post tonight because I've just got back from the party of a primary school friend. That feels apt, though, as it's also the anniversary of another primary school friend - my dear Gemma Watson, who passed away sixteen years ago today.

Having mentioned in yesterday's post that my mental health hasn't been that stable, this #SeasonalSonnets entry gives you one of the reasons why. It's sadder, I suppose, than the others have been so far. Yet as much as it acknowledges the intensity of my emotions, I also want to say that there are many smiles - not least because, at Colin's party tonight, I was able to be carried in so that my chair could be lifted up the steps. That isn't something I'd have fathomed possible almost literally since primary school, so it feels fitting, and I like to think Gemma was with me.

Sadness can definitely coexist with joy - and Christmas can be painted on a bridge in summer, which is what she did in the picture below.

Love and spoons

Jx

9th December 2017

I’ve read that grief is love turned inside out –

if so, I guess my heart must be chock full.

Why do I sense, then, that I’ve lost my clout,

my arms and eyes are heavy; my head dull?

I want to mark your memory with smiles,

since you deserve them far more than my tears,

I’ve travelled solo, though, so many miles;

each day has seemed as long as sixteen years.

Surely this sense of numbness should have passed

and let me add your tunes to my own song,

but each new grief intensifies the last –

and fifteen others have now joined your throng.

I still hope, glibly, that soon time will heal

tho’ it does naught to stem the ache I feel.