knitting through change

I’ve a wonderful guest post for you today, from writer and knitter, Lisa Payne. We all know how restorative knitting can be, but for Lisa, the craft became her lifeline through the experience of sudden, chronic illness and disability. What Lisa has to say about that experience, as well as about the embodied work of knitting in re-creating a sense of self, is both powerful and important. Here she is to share her story.

What is it about the gentle rhythm of needles, the turning of yarn into fabric and clothes that’s so compelling? For me it’s a kind of alchemy; turning time into something tangible, material, with your hands. I’ve knitted through so many occasions: births and deaths, traumas and triumphs, periods of growth and loss. I knit every day. Knitting is the fabric of my life.

My yarn stash, the oft times guilty secret of knitters, contains less yarn marked for future projects, and more remnants of this or that project, this or that time in my life. The baby cardigan I worked on while my grandmother was dying, and my nephew was being born. The first jumper I knitted for myself (owls, of course). A shawl for my mum, a jumper for my dad. Mittens and scarves for my sisters. And socks, lots of socks. 

Being “A Knitter” is a large part of my identity. I clung to it when in January 2013 at the age of 41 I experienced a sudden, catastrophic illness, that left me chronically ill and disabled. I’d left London to realise a long-held dream to run a four-acre organic market garden in Cheshire. I had no experience – I’d been doing freelance document design and bid production work for large corporate clients, and teaching knitting and craft workshops on the side. I learned to grow and sell vegetables from Mehr, the owner and founder of the market garden, who was in her eighties. I was happier than I’d ever been. 

I started to get odd body aches and muscle pains that I put down to having a physical job after years of desk work. My allergies were worse than ever being in the countryside. Towards the end of my second year these symptoms escalated to a debilitating extent. I saw a doctor who referred me to a rheumatologist. From there, things went bad, fast. By August 2015, I was no longer able to work and was in constant pain. I had to give up my job at the market garden, which meant I also lost my home, and I moved into a small flat in the centre of Chester.

I never imagined I’d go to bed one night and wake up disabled. Of all the possibilities I’d dreamed about for my future, this wasn’t one of them. But disability is a minority that anyone can enter, at any time. In October 2015, following months of chronic pain and loss of physical ability, I was diagnosed with a rare autoimmune disease called granulomatosis with polyangiitis (GPA). GPA is a type of vasculitis which only effects 500 people in the UK each year. Vasculitis is caused by inflammation of the blood vessels; the type of vasculitis is defined by which blood vessels are affected. In my case, it was the small blood vessels and capillaries.

In GPA, your immune system initially targets the sinuses, nerves, and joints, attacking and destroying them, causing systemic inflammation. Left unchecked it can then attack the kidneys, lungs, and heart. After that it’s ‘Game Over.’ 

My immune system attacked the radial and ulnar nerves in both arms and the peroneal nerve in my legs. I completely lost the use and sensation in my right hand and foot, and partially lost the use and sensation in my left hand and foot. This is known colloquially as wrist and foot drops, a form of temporary or permanent paralysis. The doctors didn’t know if the paralysis would get better, worse or stay the same.

That morning in October after I woke up with my right hand paralysed, I was rushed into hospital. My left hand became partially paralysed a day later, followed by my right foot then my left. Two days later, the bridge of my nose collapsed. I was in hospital for two weeks while the doctors tried to bring the disease under control with high dose steroids and chemotherapy. 

I had no movement in my right hand, limited movement in my left hand, and I couldn’t walk unaided. I had to wear splints on both wrists, with different ones for day and night. During the day I wore a beige pair which were fastened with Velcro straps. They reminded me of the wrist guards I used to wear when playing roller derby. I used my teeth to help pull the splints on and off. 

‘Jewels, not tools,’ my friend Fiona said when she saw me doing this. But my teeth have proved to be effective tools on many occasions since my wrist drops. 

At night I had to change my splints for long rigid plastic ones, moulded specifically for my hands. They prevented my fingers from curling too far in on themselves and getting used to that position. These splints were hard to manoeuvre and putting them both on was a trick which took several nights to master. 

Wearing my rigid night-time splints, I had no choice but to lie on my back with my hands crossed over my chest to try and sleep, like a corpse. I amused myself by pressing the controls with my elbow to raise the head of my hospital bed up from a flat position. I imagined rising in slow-motion like a vampire in a coffin, waking up from the dead.

Ever the optimist, as some slight movement came back in my right hand, I asked for my knitting to be brought in. I couldn’t knit. I was devastated. It was like trying to run before I could walk – an apt metaphor as I was also learning to walk again.

But I didn’t stop trying to regain my former knitting skills. I’d been knitting since I was five years old. I’d dropped it during my teenage years, only seriously taking it back up in my late twenties. During my thirties in London, I was part of the DIY craft scene, running craft nights, and teaching knitting and crochet workshops. 

Before I was admitted into hospital, I’d been working on my sisters’ Christmas presents. A pair of fairisle mittens for Michelle, from a pattern that was inspiration in a novel about three sisters, and a large, blanket shawl with a tasselled trim for Anne-Marie. I was in constant pain from what I now know was my immune system destroying my nerves, but I kept knitting. I completed Michelle’s mittens a week before I was rushed into hospital, but Anne-Marie’s shawl was only half-made. Thankfully Michelle stepped in and finished it for me, so Anne-Marie still got her Christmas present.

My knitting bag sat beside my hospital bed, unused. I couldn’t do daily care tasks by myself, like getting washed or going to the toilet, so I don’t know why I thought I might be able to knit. But I craved something familiar to anchor me in the middle of all this fear and change. I couldn’t even remember how to use a fork, and I would stare at people trying to work out the careful dance of balance and movement. I puzzled over what made movement: how did the thought to move this or that hand or finger translate into the muscles making the motion? It was such an instinctual action. I couldn’t fathom it out.

I was determined not to be defeated by this illness. I kept returning to my knitting over the following months. I went through a sequence of progressively more steampunk orthotic hand splints. I had regular hand therapy sessions and was diligent with doing my daily exercises. I included trying to knit and learning to write with a pen, as well as using a fork and other adapted cutlery, and putting on socks, as part of those exercises. With patience, and by adapting my knitting style from continental to throwing, I slowly started to knit again. I was thrilled. Now I had something to do while having chemotherapy, or during those long waits for appointments with various consultants, of which there were many.

By March 2016, I had regained enough movement in my hands, with the aid of my splints, to knit slowly but with increasing confidence. I came across Kate’s pattern for Buchanan, knit in my favourite colour teal, with a bold yellow and red yoke. I instantly fell in love and cast on. 

My hand therapist was amazed by my progress. She said that it was because of the muscle memory that I’d built up through my years of knitting, which was coming back with each stitch. My left hand has never fully recovered, even though it wasn’t as badly affected as the right. Seven years later, after another disease flare at the end of 2022, the ulnar nerve has been affected again. My left hand is curling into itself once more and I’m losing strength and manual dexterity.

One of the things I used to teach in knitting was the importance of using a lifeline, the running of a piece of spare yarn through your stitches. It acts as a point where you can safely unravel your stitches to if you make a mistake. Knitting has been a lifeline for me throughout my illness and recovery. It provided a place for me to come back to, connected me with my past self and identity, even when everything I’d previously used to identify myself with had changed so dramatically.

Recovery isn’t linear. I question whether to even use the word as it implies a return to the state you were before. In chronic illness and disability, that’s not the case. You learn to adapt, but there is a bigger issue about the role of design in reducing disability. You can be disabled by your environment, not just your ability. In my next post, I’ll discuss how different knitting and design techniques can help people with hand mobility issues and pain.

Much love and solidarity, Lisa! Looking forward to your next post.