Neurodivergence, Poetry and Me

or: A Trip to the Forwards with Kim Moore.

Glimmers are the opposite of triggers: they are “tiny micro moments of joy—fleeting, everyday moments that elicit a rush of happiness, gratitude, calm, peace, safety, or goodwill”. Like a squirrel storing nuts in the autumn, I am saving up glimmers in my mind, a bulwark against winter and its darkness. I find them in nature; in my teenager, Niamh; in language; in teaching.  Yesterday’s glimmer happened at a group I facilitate for writers who are seeking refuge – we meet weekly at St Augustine’s Community Centre, Halifax. Exploring the impact of translation, each writer in the group spoke about the Centre - first in English, and then in their mother tongue.  The glimmer was not just in hearing about the love, warmth and acceptance they find at St Augustine’s; it was also in the fascination of feeling the different languages in my body – English in my chest; Setswana and Creole, in my guts; Romanian, in the centre of my shoulders …. In the joy of hearing writers I’ve known for a year speaking from a deeper part of themselves; of feeling a stream of words become a river.

I love running workshops. When I’m teaching, my voice is steady; I’m calm and comfortable. I know what my role is; I know what to say and do. I know exactly where the boundaries lie; what’s going to happen and when; where the exit is. When I’m attend a workshop as a participant, my heart races; I’m hypersensitive to every sound and smell; every movement. The anxiety is painfully acute. But on the stage, I know the script. And when I’m alone and writing, or with trusted friends, I have all the words I want to say, all the time and space to say them. In the rest of the world, I am often at sea.

Anxiety is so much part of me – a sort of emotional skeleton – that I don’t notice it until I’m overwhelmed. Sweat runs from me; I fidget and twitch and tic. I’m swept by surges of nervous energy, fiery and stinging and forceful. Every inch of me is hyperalert, filled with an intolerable electric static. I’ve made no secret of my psychiatric history, which involved spending years in hospital, and decades in therapy. I’ve attracted the predictable diagnoses – Generalised Anxiety Disorder, Clinical Depression and Borderline Personality Disorder, which could be more helpfully re-framed as Complex Post Traumatic Stress Disorder. More recently, I have joined the four-year waiting list for an ADHD assessment.

I’m fifty-one years old and I’ve lived with this all of my adult life. I’ve created a good life, full of wonder and love. I am very lucky. I have a lovely home in a beautiful place; a healthy, wonderful kid; the best of friends. I love my job; my work is full of purpose, meaning and pleasure.  I have safety and choices and opportunities; I’m cared for and loved.  But still, I struggle; at times, intensely.

I started writing this article on the train home from the Forward Prizes for Poetry Ceremony, partly, as a way of making sense of the shame and failure I feel after too many social events, how ill and exhausted I am. But also because this about community - about what we expect from each other, how we understand each other, how we are different and the same; how we might be kinder; how we can take care of ourselves and each other.

Despite working hard to create accessible events, it's only in the last three years that I’ve acknowledged my own access needs. The turning point was an experience of being singled out for public criticism by a presenter at a conference - for fidgeting and appearing not to listen to her. Ironically, I was actually fascinated by what she was saying, and what she saw was the manifestation of my – sometimes uncontainable and physically painful – excitement. These days, I wear my sunflower lanyard, and I ask organisers for a quiet space, a seat near the exit, and for a general awareness about tics and involuntary vocalisations. As well as having an Access Needs Statement, I manage my own care more attentively – managing blood sugar and tiredness; turning down work opportunities which are too demanding or over-stimulating; checking in with myself.

I’m also supported by Access to Work, a government scheme which funds several hours admin and communication support every work. I’ll write more about executive dysfunction in a future substack – but in short, I’m now supported with tasks like invoices – and  with the toxic shame which filled the distance between my ability to write and teach – and my inability to make a phone call or manage my own admin.

Now, when I travel to work or events like the Forwards, I take my loop headphones to cope with sounds which stress or overwhelm me. I request a quiet hotel room; in venues, I book a seat at near the exit. I carry snacks because hunger makes anxiety worse. I burn off excess energy by walking, I spend time on my own, I carry medication. It’s not a magic wand. Walking into the Forwards and its crowd of familiar faces, I moved rapidly from delight to overwhelm.  I fidgeted through the extraordinary poetry. In the after-party, I watched with amazement at how so many people moved around the room chatting with each other. In crowds, I swing without pleasure or control between clown and introvert. Instead, I found my own beautiful trio of overwhelmed friends, stayed beyond my limits, left with a migraine. Spent the next day aching and sad. 

I am aware of my privilege: I’m relatively well-known poet at the Forward Prizes with my famous friends and acquaintances. But sometimes we have to allow ourselves to notice what is lost, what hurts. I’m aware that being able to circulate and network is an important part of every career, including poetry. I am sad that hanging out at social events can cause me intense discomfort. I’m sad about the missed opportunities, the people I don’t get to connect with. I’m sad about judgement and criticism, especially my own. The shame. I’m sad about how many days I lose to exhaustion and illness. 

There’s no magic wand. Life isn’t fair. We live in an unequal society and there are lots of people who cannot access poetry events. But perhaps we can create a more inclusive poetic community. Some of it starts with awareness, and kindness, and there was plenty of that in the company of people like Dan Sluman, Jo Clement and Sanah Ahsan. Organisationally and culturally, there have been shifts – for example, the birth of the ‘relaxed venue movement’, which you can check out at https://bac.org.uk/relaxed-venue/. But there’s a very long way to go – and just like learning to be kinder to myself and more aware of my own limits – the process has to be driven by intention and determined effort.

And along with the challenges, there were glimmers. The first glimpse of Durham Cathedral. Pamela Robertson Pearce in her bright red coat. The fluid genius of Ella Frears. The way Kim Moore and I can move in a microsecond from wild laughter to in-depth discussions about grammar. How, when Tife Kusoro read, everything slotted into place. How the energies and hypersensitivities which cause me such pain can be the source of such depth fulfillment. How you can find life and safety in another person’s voice: how you can lose or find yourself there.  How Victoria Chang was a quiet river; the gut punch of Charlotte Shevchenko Knight. Running across roads with Kim, laughing like teenagers. The easy company of a friend who matches my intensity, who doesn’t notice my awkwardness, who will always dance with me, who embraces my fidgeting as excitement. A well-poured pint of Guinness.  Niamh texting me about the Northern Lights.