My Body is a Banner!
There have been an awful lot of awareness months lately!
Last month was Autism awareness month and this month is EDS awareness month and I am reckoning with all of this awareness!! This is maybe a bit more of a personal essay but I will also include a poem and a book recommendation below if it’s too much!
It’s been a while since I wrote for you all here, and I have found myself thinking often of the ways in which my brain and body prevent me from the regularity of life that people outside this foggy world of physical disability and neurodivergence seem to be able to experience. I wish I had written more- I couldn’t. I want to feel guilt about it- I shouldn’t. My ever growing trail of conditions is starting to make me sound like a highly decorated soldier - Lydia Morrow hEDS, PCOS, POTS, ADHD, ASD, but it’s a special kind of horror to be at war with your own body. Right now I am in bed, I have lugged myself into a sort of semi-upright position. My head is just high enough to enable me to type with my laptop balanced on one knee, and this is almost too much for me today.
The reality for so many of us is that we weave for ourselves a tiny mist around the knowledge of our brains and bodies. Where they fall short, we apply a bit of blur and think about other things. For me, a smudge starts around my mouth and works its way downward over my body. Inside my head it starts around my needs and stretches itself over my desires. Desire is painful and confusing, need is distorted by ache and fatigue. Awareness times are painful, a reminder that not everyone exists as a vapour like I do. I used to want to fight for recognition, the powerful drive of the recently diagnosed. When you are freshly, finally, officially ‘disabled’ there is so much anger and relief. There is so much to process. I wanted to become a teacher, an advocate, and in many ways I have done those things, but now I feel quite lost in the mourning.
I didn’t know it was EDS awareness month until it jumped out at me from a viral Guardian Article by Daisy Lafarge. After reading the first few paragraphs I had to stop because it was too much for me to face another version of my experience. My weeks, for the most part, are repetitive. Over the years, I have pulled a life for myself out of the corners and cuttings of the life I wanted. It’s good, I am creative, I am joyful, I have friends I love, I am usually able to avoid meltdowns and flares, and my bed is nearly always in the next room. But I still find myself shutting down- loneliness and jealousy are impractical emotions. Anger too, can only be turned towards my own body- foggy down below my eyeline - so I turn it off too. I don’t want to be aware! I am busy being ignorant, ignorant of a body and brain that still so desperately need to be loved and cared for.
In the midst of this, a question from my therapist:
’and what does your body want to do in this moment?’
It throws me for a loop. For a week I am more depressed than I have been in years, I am a gaping abyss of what my body wants to do in this moment. I get addicted to my phone. I fold myself back into the blanket of my mist. I try to make more friends, I feel like I have to explain my conditions to every new person.
I want to be fought for, I do, I want awareness. I want to be held, protected, for space to be made. Disabled bodyminds deserve the world, we do. But it is too much for me to hold. My life has always been characterised by me being ‘too much’ for others, and my reality is too much for me. It’s hard to think of actions, it’s hard to imagine what we need, when we are already folding ourselves away into tiny existences. When I write about disability I am afraid it is limiting, that my feelings will act as a confirmation for those who see us only as recipients of charity, pitiable. So many of us feel the pressure to turn it around and speak about the good bits, of course empowerment is important! But disability, as with any other experience is life, a fullness. How can we hope in one month to create ‘awareness’? We are so vast, so disparate. On some days we are despair, some elation, sometimes it is certainly just a normal day and it passes and we have bodies like everyone else does.
I work for love. For the ridged, loose skin of my belly and my underarms, weak collagen stretching until it is ‘anatomically improbable’ (in the words of my doctor.) For the soft curved hillock at the base of my neck, formed by a lifetime of joints too painful for good posture. For the stern pangs of a subluxed spine, the arm joints popped out by too-heavy bags, the weight of exhaustion, the sun allergy, the alcohol allergy, the grass allergy, the mystery allergy. For the bleeding that lasts for years. For the voice that is too loud and the thoughts that are too many. I can settle for awareness.
The quote on my new tattoo is one I misremembered from the Song of Solomon, an ancient love poem that is included in the Bible. It has stayed with me for over a decade, through the painful untangling that came from divesting from the religion I was born into, the birth of my child, and the discovery of my many diagnoses. I think a lot of things through those words- it changes for me in different phases. Right now at the time of tattooing, an awareness month, it has a special meaning. I think about my body as a protest, the body as a banner.
I think about existence in a marginalised body as an act of resistance. Revolt against systems of oppression is an act of love, we feel this. I find it hard to live in myself and so I choose to be a banner, I hold myself up. Be aware! Disabled lives are an act of love! Awareness months are too much for me and yet I demand it, I holler across the ache and mist, I clamour - be aware!
And now a poem I wrote in York:
The King’s Book of York Heroes
(War Memorial at the York Minster)
Behind and below those names
Of men war-dead
‘AS DYING AND BEHOLD WE LIVE’
Wooden cupboards
I count maybe 5 in the shadow
Name-lined with
Gilded names
Dark, quiet wood with rows of
Women’s names
Of women war-dead.
As dying and behold they die
I guess?
I wrote it down.
Where her sisters, two of them (dead)
Pointed window-ward
(dead, war-dead?)
With urgency to fix this- the bride
Of Christ (dead)
Stained glass as tall as the armpit
Of the Statue of Liberty
‘One for the Americans ha ha’
‘Ha ha yes’
I shoot a wry smile at the ghosts.
‘The sister’s window for the sisters’
She said
I wrote it down.
He called them the most important
Cupboards in the UK
(They are screens)
(Wood screens)
They are hard to see but
When I look
I feel like I am Helen Little
Needing my sisters (dead)
(just dead)
Kid-sisters- I was just a kid.
Lots of Scottish Women
Were doctors
I wrote it down.
For Helen, hard amber of grief
(war-dead)
Translucent panes (like amber) so
The sun has to
Squeeze through tiny gaps
Ghost dance
White cassocks whirling
In the cupboards which are for
War-dead women
And girls, just dead.
This place is heaven he said
The light
I wrote it down.
And now a book recommendation:
My Work by Olga Ravn is essential reading, I think, for anyone who is ever considering having children. More wholly, however, it could be essential reading for anyone who knows people who have had children, or who know parents, or even who have parents! If you, like me, experienced postnatal depression or any other parental mental health issues, it is a painful but incredibly validating read, I felt so so much less alone after reading it. Beautiful, scattered poetry and prose make for easy and entertaining reading, regardless of your interest level in parenting. She brings all the dark unreality of her earlier work The Employees to this supposedly commonplace experience with a generosity, honesty, and art that is exciting to experience. I hope to see more from her soon!
Alrighty, that’s all folks!
I forgot to write anything at all about business so… here’s a reminder that I have a website full of beautiful knitting patterns that you can purchase, or you can find me on ravelry!
Love
From
Lydia
I see this, I hear this, I feel this.
My body is such a difficult, sometimes painful, sometimes disconnected, sometimes agitated, sometimes fear-filled, sometimes confusing place to be, and yet it is the only place I can be. And I find more and more that the path to being in my body in a pleasurable, connected way is through all that, improbably, impossibly through.
And there are days I don’t know if I can hold that.
And so sometimes I don’t. I dip in and out of awareness of my physical form, and in a way that’s our bodies’ wisdom - that blurring, that cloudiness - to try and protect us from what seems too much.
These feelings are sometimes too much to hold. And yet we are never too much.
This banner over all of us is love is love is love - thank you for that beautiful reminder.