Phoenix Gray recalls a typical day and their efforts to frame lived experience of impairments within the context of creative self-care.
Is a poem a prayer? For me it might just be. It feels like a commitment to write ourselves and our intentions into existence through faith in the words we form. I wonder too whether there really is a difference between the writing I make public and the note I made on the back of a receipt that not even I read again. I kept it for 12 months, pressed between a sachet wet wipe and a fiver, only to scrunch it up during a purse clear-out because I’m forgetful and memory-laden all at once. My coins and brain need space.
What about the writing on the back of my front door? Paper square after square of instructions for a brain wired in a way that causes its connections to drop out and-slash-or explode.
My reminders are read by torchlight when the smell of a burning plug socket followed by the fuse box continually tripping summons an electrician and his expertise. He underestimated me at first but a glance around and he realises that I’ve already done the basics. With newfound respect he tells me that he likes how I have decorated the place and asks me what I do for a living.
What 29 year old person capable of living on their own needs continuous reminders to drink water and use the toilet? This one. Do I feel embarrassment about this? No, not anymore. (There are actually quite a few of us.) Alarms are reminders with a melody – ‘take your meds!’ my phone screen reads as it sings me to an awareness of my pharmacy-prepped dosette box. I check if I’ve popped out the relevant day and time already – or at least I’m meant to, but things often distract me.
I hate this question, especially as it’s not long since the hospital discharged me.
“Between 2 and 4am I stare blurrily at the shadows that flit around my night terrors and night sweats. At about 5am, damp and overheated, I flop out of bed and crawl to the bathroom on my bone-diseased knees, trying not to tic-yell something random and loud. I doze fretfully through the late morning to early afternoon. At 1pm I awake and I eat food that has been prepared by others because I cannot trust my self-injurious hands to feed me,” I want to say.
Instead I say the magic words – words that make no sense when you consider how much time I actually spend doing the thing – that make me whole: “I write,” I continue, unconfidently: “well, I’m working on a poetry collection. I have a few novels on the go. I might go back to studying next year. After – well, after I have received treatment for my brain.”
I realise too late that the carpenter who fixes my front door after the police break it down during a welfare check can also see these mini poems to myself, my words scrawled in capitals and stuck on the back of my door with polka dot washi-tape.
I wonder briefly if the carpenter knows that I am mad, recall the tragic note-to-self of “have you packed sedatives?” and conclude that between that and the broken door he probably knows that my brain’s not like most people’s.
Tragic. Magic. It’s a kind of magic that makes the words I type, scrawl or memorise heal me. To write and read is to heal and to heal is, for me, to read and write. I get it from a run of click-clack clacking on the laptop for a 10 minute stint between flashbacks. I might fling the laptop off me and go into the backyard, plant some seeds and acquire soil stained fingers. I whisper encouragement to my little babies, and then get right back to typing.
Returning to my novels isn’t bothersome or vexing, it’s like cliffdiving over and over again and discovering new parts of the ocean; the tangy salt is clarifying, the bright coral shells invigorating. It’s the communion of words and space and pages with as much or as little on them as I choose. During my writing phases I am still disabled, but I don’t experience many of the barriers that an inaccessible world creates for me. Being able to be me – to fully bring my bat shit crazy, my flashbacks, paranoia, mania, depression, isolation and pain – and be met by an unprejudiced blank page is soul-forming.
I want to introduce you to my walking sticks – they all have names: greygory, flora, silver, eala, night. Naming them, selecting their pronouns, giving them some kind of fictive personhood meant acknowledging their presence and support in my life; naming them felt like naming me. In a similar fashion I feel I owe it to my disabilities to name them as parts of my identity; disabled, mentally ill, autistic, a touretter. Identity first language is important to me. It is healing.
Now I want to introduce you to my tics – the ones that wound, howl, and giggle. I am a touretter, which means that I experience motor (physical) and phonic (verbal) tics – I make neurologically uncontrollable sounds and movements. I tic in the little British Sign Language I know; I tic, I’m told, in a Yorkshire accent (I’ve never been to Yorkshire). Saying uncontrollable things on a daily basis provides a kind of fertile farmland for me; I field my tics for writing material and prompts. The most recent tic that I did this with was the question I started with – ‘is a poem a prayer?’.
If a poem was a prayer I’d call this one self-love. The clasping of my hands is no longer around a rosary but a pen. The ways in which I write about and alongside my disability is the healing.
 Identity first language: ‘autistic person’. Person first language: person with autism. The latter isn’t right for me, or many of us in the autistic community, because we don’t carry our autism around with us separately; it’s part of the fabric of our being.