janesy bells palsy

How sewing helped my Bell’s Palsy

Crikey! Since I wrote that piece for Bored Panda about how my Bell’s Palsy inspired me to start stitching anatomical embroidery, you lot have asked so much about it! Well, it’s made me think hard about the link between the two and I’ve realised something: that sewing slouch bags and car buckets has changed how I live with my Bell’s Palsy. Let me explain.

My Bell’s Palsy paralyses the left side of my face. In short, I look as if I’ve had a mahoosive stroke. I had my first surgery to correct it four years ago with the sheath of the sural nerve from my right leg being grafted into the right side of my face to redirect my facial nerves to the left. After a year of this I had the pectoralis minor of my left chest inserted into the left side of my face and hooked up to the new nerves and blood supply. The surgery failed, I caught an infection and a week later had it all removed.

A year after that, though, we took fascia from my left thigh, inserting this into my left cheek to create a sling to support my paralysed muscles. I’m still not symmetrical when I smile but I largely am when I’m shouting at the radio and that’s the main thing, right?

Now, the problem with Bell’s Palsy is that it is written all over my face. Pre-surgery it was enough to grab the attention of strangers who, come the revolution, will be first against my sewing shed wall. At best I would be stared/ gasped/ pointed at in the street. At worst, strangers would actively comment. One man shouted across a petrol station forecourt, “Whoa! Were you born like that?” while another said, “Are you married? Not many men would want a woman who looks like you.”

Now all of this had a mental impact as well as a physical one. Even the most basic tasks of, say, picking up milk meant being stared at. Worse, the selfie obsessed world reminds sufferers that we don’t fit in. It’s a short step to not going for that evening walk or shuffling out of family photos because it spares you their attendant horrors.

And it’s here that my sewing became a silver lining above and beyond it being the gateway to hand embroidering human organs.

I’d gotten to the point of fretting over those evening walks at the same as wanting to make spoof magazine covers as an antidote to crafting mags, the ones where every woman pictured was pretty and perfectly lit. I went through every cover idea until it struck me: if I wanted something not pretty or well lit the ideal cover star would be me.

The first was a punt as I pulled a face at a pair of scissors. I have no idea what possessed me to put it online. But you all loved it and, even better, no one hit a comment box with, “WHY DOES YOUR FACE LOOK LIKE ROADKILL?”.

So I did a cover every month for a year and, even though for every decent pic I wailed at the dozens of twisted ones, each made it slightly easier, especially when swathed in ric-rac or pom poms. More than that, I started to realise that my face fits my Kraken Kreations contrariness. My Facebook page is where I spout honesty and the kindness, acceptance and humour of my customers has reminded me that none of us feels ‘normal’ anyway. Four years after the first surgery, and several hoops of hearts, cochleas, hands and reproductive systems later, it’s no longer such a giant leap to just show my face. So here it is:

This was taken two days ago and my wonkiness increasingly feels like individuality. It has to be better than having off-the-shelf eyebrows and Kardashian contouring which is what Kraken Kreations has raged against from the start.  And if I’m that enraged about sexism to start a business that challenges it, then the least I can do is put my challenging face out there too.

And that’s how my sewing helped me get my head around, well, my head. Whether it’s the surgical sewing of my maxilla facial consultant or the way I sew the seams of a tote, it’s all helped me get a grip of my Bell’s Palsy. My face might be paralysed that doesn’t apply to the rest of me.  Now, if we can just put sewing on prescription…