#SeasonalSonnets 2019: 3rd December

Hello my lovely readers

This third entry is simultaneously just as personal as the previous two in this series and a little more general. It marks the UN's International Disabled People's Day (officially the International Day of Persons with Disabilities, and language is a complex issue in the community, but either way around uses the same acronym - IDPD).

It also happens to be the day that we are making some modifications to help me access our surrounding area a bit more simply. Thus far on our trip, I've been staying in Jenny's garage, which has an accessible bedroom, bathroom and shower. To get inside the main house, I've had to be carried, then plonked in my not so comfy (albeit serviceable) manual chair and propped up with pillows. So, now we're back from McGregor, we're testing out ways to get my powered chair inside.

A ramp is being built. It combines an actual metal ramp borrowed from a friend with an old door to make the gradient manageable. It's not perfect, or pretty, and requires some wheelchair parkour on my part - but it works. And it can be moved so I can access anywhere in the house. As the theme for IDPD 2019 is 'participation',  that seemed an apt subject for a sonnet.

Below the poem is a collage of two photos of me trying out the first stage of the ramp. One is taken from the top of the inital step and pointing downwards into the front yard, where I sit waiting in my chair at the bottom. The other is taken from behind me and shows the upward incline of the ramp into a patch of earth. That will soon have a platform over it.

3rd December 2019

Today it is IDPD '19

(about which I have written here before)

and this year I am pond'ring what it means

when access lit'rally depends on doors.

We all refer to them as something figurative,

imbued with such potential when they're open,

but closing them can really be restrictive

and exclude some from dreaming (even hoping).

How funny, then, that, when there's nothing else

around to help me make my way inside,

we've found a fix within a door itself

which lets me join the fun instead of hide.

It shows solutions need not be elusive

in efforts to make our world more inclusive.

#SeasonalSonnets 2019: 2nd December

Hello my lovely readers

With gratitude for the kind responses to yesterday's entry, today's continues the theme of the past emerging in (and merging into) the present. It is about one of the people, beyond my immediate family, who was crucial to my childhood development and remains important now - my godmother Jenny.

We are staying with her in Cape Town, to where we've just returned after a long drive from McGregor. So I apologise (both to her and to you) if this isn't my finest example of a poem. But I didn't want to miss a day so soon into this series; nor a chance to cherish this awesome feminist activist who is so kindly opening up her home for the majority of our time in South Africa. Below the poem is a selfie she took of us in the sunshine outside Pony Cottage, where we stayed this weekend.

2nd December 2019

Today I write an ode to my dear Jenny
who has, since my young years, been an example.
It's nigh impossible to list how many
things she has taught me - and yet the number's ample.
I learnt from her to love Joan Armatrading
and how to navigate the world online.
She showed me ways to begin arbitrating
between opinions and start forming mine.
She even offers space for us to argue,
by teasing out exactly what we mean,
and (though, sometimes, we might find it quite hard to!)
a kindred spirit she has always been.
For, above all, we share a sense of humour
and her laugh's cheekier than any rumour.

#SeasonalSonnets 2019: 1st December

Hello my lovely readers

Now that it is the start of December, we're also at the beginning of this year's Seasonal Sonnets series, which is in turn the first part of the project I have planned - to write a poem for the next 365 days.

This opening entry, and indeed this year's entire series, might be perceived by some as decidedly unseasonable. I'm writing it from South Africa, where it's summer. However, as I spent my earliest childhood over here, to me it seems exactly the right way around. That sentiment is the substance of this sonnet, since we're staying with old friends in the mountainous Western Cape village of McGregor. Last night we went to a gig by yet more old friends, the awesome Edi Niederlander Trio, and today we're just chilling in nature (in the shade). Below the poem is a picture of the surrounding countryside.

1st December 2019

This year's a homage to much younger me,
who finds relief and safety in warm weather
and really thinks festivity should be
in summer, like Christmases she remembers.
I'm thrilled now we have made it home at last
and grateful that my body lets me travel.
Revisiting some places from my past
is helping me catch threads which have unravelled.
Shy hopes are building for my future too,
inspired by the chance to be in nature
which is at once familiar and new -
I feel that 'young me' may now mature.
For scenes to mark the start of this December,
I'm glad to have the beauty of McGregor.

Children's Grief Awareness Day 2019

Hello my lovely readers

This post is perhaps earlier than expected. It is neither December, nor the start of my Seasonal Sonnets series, and it isn't the beginning of my poem a day project.

It is, however, a poem. Today is the global Children's Grief Awareness Day, and the end of Children's Grief Awareness Week in the UK. The theme this year is 'Lost for words'. That struck a chord with me. Not only did I find it difficult to talk about my grief growing up, but I used poetry as a private and more abstract outlet. And those of you who have been reading this blog a while might remember how scared I was when that coping mechanism, which I've used since I was very young, seemed to disappear entirely in the summer of 2017. Along with all other creative writing forms.

But, thanks to a combination of factors, from therapy sessions to the support of the bereavement buddies I've met through groups like Let's Talk About Loss and The Grief Network, my young adult self is finally getting brave enough to process my experiences properly. And, with that talking, my writing seems to have reappeared as well. So I wrote this poem last week, in honour of my child selves, and in solidarity with kids who are going through grief. I'm rather terrified about posting, but if it helps one other child (or adult), then it's worth it. Please know you aren't alone, and your feelings are okay and allowed.

Here, shared with love, is my perspective:

This is a note for little me

in plural; who wrote poetry,

at ten, eleven, twelve, fourteen,

and all the ages after then.

We wrote to cope in 2001

when Gemma, first, was suddenly gone

and kept it up throughout our teens

‘til five in a year made seventeen.

It was easier to write than talk

for otherwise our brains would baulk

and shout the screams inside our heads

when yet another friend was dead.

But, with five almost at once,

we could not find the write response

nor could we find the words to say

and so our minds were shut away.

I felt lost for what to do

but now I know that’s okay too.

Sometimes words just won’t describe

the feelings that we hold inside.

And sometimes, though aged twenty-seven,

we need rhymes that sound like we’re eleven

or younger even, perhaps ten,

since that’s the age we ‘lost’ dear Gem.

And that’s the age I revert to,

when there’s the news of someone new,

transported, body, mind and soul;

fresh grief reminds me I’m not whole.

And then I’m sliced in two once more

as teenage me lets out a roar;

an ever present adolescent,

lip wobbling after younger precedent.

These foundations were what built my twenties

as the numbers grew aplenty

and piled up the paradox

that, needing them, my words were lost.

My mind became not one but many:

I had no proper hold on any.

But, though I have felt split apart,

my nearly thirty-year-old heart

is learning to connect the halves

that make up all my little selves.

Voicing, together, that we grieve,

we’re finding some mutual relief.

Tasks of talking through our pain

have sparked our writing up again.

Though I still reel from the hurt,

I’m glad to put it into words.

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