Creative living with chronic pain & disability

Shape-shifting, many tongues and extra bones.

Mixed-media project in progress. Easy on the hands and arms.

Over the last few months I’ve been experiencing an acute relapse of a mash-up of chronic left hand, arm and shoulder issues. The type of relapse that requires me to extremely limit any aggravating activities - writing, typing, repetitive and prolonged makings, stitching, heavy lifting, weeding/allotmenting, chopping food. This kind of relapse-aggravation may take months to heal before I can do all the stuff that will flare it up again, eventually.

This time my relapse was activated by too much stitching, too much non-creative typing, too much scrolling (triggered by gently stepping into instagram world to share practices), too much time holding poor postural positions. When I was struggling to find words to express my current thinkings-feelings, I veered towards the language of stitching to articulate my viscera-held stories and to breathe through the magnitude of the genocide of beautiful Palestinian people.

Stitching projects.

Finding solace in my unruly stitch methodology, I also began to feel the emotional angst and anticipatory grief as my fingers and arms started aching, the familiar knowing that I wouldn’t be able to sustain this practice to the level I’d love to or for much longer. I’d learned decades earlier that I’d never be able to be a knitter, the repetitive action causing chronic pain. Stitching felt profoundly healing to my spirit-soul, I felt like I was stitching with all my ancestral women, a legacy practice and alternative mother-tongue to my very limited Punjabi. A stitchythready tongue that I intuitively felt and understood.

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In my early twenties I developed chronic pain in both my hands, especially my left hand. I was working nightshifts in a BT call centre as a directory enquiries operator, tapping into keyboards the whole shift. Back then my pain was dismissed by doctors (as women’s pain often is) and I struggled to get any kind of diagnosis other than repetitive strain injury with no treatment options or guidance offered at the time.

Decades later, I discovered that I was born with two extra ribs at the top of my rib cage - cervical ribs - which cause a raft of symptoms from pins and needles, pain, nerve compression, fatigue and temperature changes. These symptoms usually start when you’re in your mid-twenties. I’ve been managing these spare ribs and RSI ever since and often, not managing very well at all. I’ve spent thousands of pounds on osteopathy, massage and physio - a hefty disability tax. A friend once said to me that I was born with these extra ribs to protect my heart.

Adding to the mix of spare ribs and RSI, repeated whiplash and injuries to my neck and left shoulder, right now I’m feeling the perfect storm of chronic pain and necessary prolonged deep arm rest. Which means most creative activities are on hold. The timing feels ironic as my brain now feels mostly back to some-kind-of-weird-usual-me after my traumatic brain injury almost three years ago. I’m feeling ready to go and also held back. This flare up feels like one of the worst ever. I feel a little bit scared.

Not creating or making is not an option. I love working with my hands. I go nuts if I’m not creating-making. It’s the balm that soothes. I’ve always been otherwired, mind firing off in multiple simultaneous directions. I feel as if I’ve squished several brains into one skull. It can feel dizzying, disorientating, tangental, wildly creative, fun, exhausting, fracturing, exhilarating and and and.

Being brain-injured actually provided a couple of years of relief, being too concussed to be anything other than slow my mind was only able to hold one train of thought at a time. At first I missed my many-brainedness-bonkersness and abandoned projects until I settled in to the quiet-slow of prolonged recovery, learning how to shape-shift my creative practices in to brain-injured-friendly practices. Making objects or slow handwriting – journals, visual poems, zines, handmade papers, inks, anything other than prolonged computer work or deep concentration or reading or long-form writing which hurt my head – became my creative healing practices.

I know I overuse, misuse and push my body at times when I’m in creative flow. The internal desire to create is so strong, I’m almost in a trance that even though I hear the pains, I’m often unable to activate a healfull response.

This is how and why I’ve learned (almost) to become a creative shape-shifter. A creative hustler during periods of chronic pain. If I can’t stitch or spend too much time at a keyboard because my arms ache and my brain is too knackered to dictate words I can stick and paste my stories instead. I’ve learned to become a many-tongued story-teller that’s learned to flex and flow with this skin-bound unruly beingness I inhabit. Or which inhabits me.

Mixed-media tongue is generous, giving deep buzz, gently brain-unravelling workouts, sticky glue and paint stained fingers, endless rearrangements, offering imagination wild roaming. Quiet and easeful on my body. Slow and sometimes fast. Gratifying. I can tell stories otherwise.

As my body (s)ages, hair starts glowing in the dark, I wonder about my physical abilities in years to come? I know my body is this amazing self-healing phenomenon, I do my best to look after it these days. My body has been through a lot and I’ve put my body through a lot. Still we rise! I know I’ll always have limitations. Because of this my creative practice is consistently inconsistent. Or inconsistently consistent. Ever evolving.

This is the power of creative shape-shifting ~ to work in alliance with possibilities and epiphanies, to grieve limitations and losses, to speak imagination and creative sparks through the language of many-tongues and extra bones.