Out in the Dark and the Light

July Substack

Dear friends,

I will always be sad that wavering health hinders how often I would love to share news with you. There’s also the inevitable challenge of balance. Writing is my everything, more than ever, and it must have the love of priority.

Health & Hassles – personal updates

Health remains a challenge. August sees the second anniversary of my brain traumas that have left inevitable changes to my well being. Seizures can be troublesome, because they are random and my overall mobility has never recovered. A recent and rather long cognitive/memory assessment (three hours plus) showed I have no sign of conditions such as dementia (hurrah!), but I do have a complex array of damage in short term memory recall and beyond. I can forget a thought in the act of thinking it, and anything maths based. More hurrah – I never liked maths anyhow! Sometimes, and randomly, words will not be glibly willed into speech. Writing/typing has remained quite sparky, though. More on this in a minute.

Maintaining stability is my aim and sometimes that requires sacrifice, which is unsettling – though as someone who survived the worst prognosis, these days, I do have a strong sense of glass half full. Each day is a thing to navigate gently - but also one to relish.

And I’ll always love to celebrate and share what I’ve been up to.

Out in the Dark and the Light

Managing my personal wellness has led to the opportunity to do spoken word gigs, working with some magnificent local poets and all round lovely people. First, in chilly February, was at the established Hastings live poetry event, Flight Feathers, in a snug little cafe venue in town. Presented in the capable hands of Lucas, The Peaceful Poet, with super pal writer Jake as my official page wrangler. The venue was rammed with so many friends! Thank you, I was blown away, and deeply emotional – my first full performance since I was ill. I also sold a goodly pile of books.

Fatigue demanded payment, naturally, and I was guilty and upset that I could not last beyond the first break to hear such excellent performers, including Oli Spleen, who was a joy to meet properly at last.

Next, as the year really shoved off winter, was a slot at Stretched Lips Punk Poets night. Organised by playwright Dean Stalham, I had the excitement of being offered the headline slot at 9pm. I also wrote a teasy new poem for the event, Piss and Pity, an anthem to the excruciating lack of truly accessible toilets for all disabled people.

Let me piss, kick back your pity

Give me toilets, there’s the real nitty gritty

Bog standards, fighting farts goes on

Everyone dumps, so hear my shit song

Finally there was an invite to perform at a fundraiser gig for Hastings Refugee Buddy Project on 19th June, by none other than delicious local talent gone rightfully international super writer, Salena Godden. Look at me, honoured face! Salena and the producers were super supportive and took on my access rider (a newish and much needed thing in the creative industries).

I did learn hard lessons from the previous two performances. I’m not strong enough for late live slots. I still need to go to bed around 9pm. When I don’t, I’m ill quickly. Even my epilepsy is merciless, and the following days I’m wrecked physically, cascading into mental distress that is tough to throw off.

So the HRBP team with Salena and Oli were the kindest. It was organised that I would be on first, sharing new WIP material, including I’m only a Kid.

I’m only a kid

But they shut us away

with the rats and diseases.

I’m only a kid

father’s best loved girl

yet other men took me.

The audience held me and took me high, reigniting so much within me that’s laid too low and lost for too, too long. Truly one of the best gigs of my life.

Even the scary ski-style ramp to the stage was not a discouragement – at least there was a ramp, and an accessible toilet! Jake did another sturdy turn as my trusted page turner (it looks much better than it sounds), and I know I slayed it.

Thank you each and every human being involved. Beaming the love. We raised £1,000 on the door for the HRBP. Hastings at its best.

These things keep me going when elsewhere work brings hate and division. I adore working for the mighty Byline Times but how dark I’ve needed to dive considering we have a government who encourages hatred for disabled people. My column was, for instance, called “work shy click bait” by some lowlife, and that's all I’m willing to share because I deal with it, and won’t give scum the satisfaction of seeing a fast reaction.

Proudly Sharing

Before I wind up this Substack, it’s always good to share what others are getting up to, and who I think my subscribers will enjoy.

Please give them big love and share on your own social media networks. And do sign up to my friend Theresa Hodge’s Substack, which looks at craft, disability and creativity with a refreshing approach. I promise you will learn a lot from her! And she is one of my besties ever, total bias – ha ha!

As for my other close friend Joanne Cox, I believe I've mentioned her before. She is a spectacularly talented cellist, cross genre with music that is both beautiful and darkly atmospheric. Her new single is out soon. Meanwhile, check out her website here.

Today in Hastings we have been in waves not just on the seafront but in the sky, dark clouds, fluffy clouds and then perfect blue as the weather changes minute by minute. It's a privilege to see it and definitely lifts my mood.

I do hope that something is lifting your own mood during these arduous and sometimes miserable times.

Until next time.

Stay well, keep the love,

P.s. launching a great offer – buy my signed memoir, First in the World Somewhere direct from me and for £1 donation to a local charity receive a rare limited edition of the original Desires (published 2003). Currently collection only, but open to postage if cost covered. Message me for details!