Jason's Story | GBS

When you work with your hands for a living, what do you do when those hands stop working? Thank you to Jason Miles for sharing his GBS story in our pre-Christmas Newsletter. This is a powerful story touching on emotions around losing work and passion, over indulgence, and the importance of letting others help you.

Here's his story, IN his own words:

What do you do when a tradesman’s hands stop working? I’ve asked myself that question more times than I can over these last three years or so.

I wish I could remember what I ate, or if I just didn’t wash my hands properly. I’ve got a few suspects on the whodunnit list, but I’ll never know which one struck the near-fatal blow. For a while, I thought knowing might help. I was desperate for someone to blame, someone to shift the resentment and anger that was simmer under the surface on. But now it’s just curiosity.

It was the spring of 2022 and I was finishing a job in a customer’s home. I count myself lucky that I was given free rein of the top floor, permission to use the loo (it’s always polite to ask), and that the owner herself was out.

We were about ready to finish when I felt that unmistakeable rumble in my stomach. I’ll spare you the details of what happened between the rumble, me apologising to the guys for leaving them to finish up, and heading home. I thought that it was an early finish, and in a way it was. It was my last day at the job.

The next 48 hours were the classic food poisoning experience. If you know you know. Man on toilet. Bucket on lap. Dignity out the window. Eventually it passed, and I remember distinctly crawling into bed beside my wife looking forward to a proper nights sleep at last.

The next thing I distinctly remember is waking up the next morning, unable to move the left side of my body properly.

I could twitch my arm if I really tried, but only by centimetres, and even then it was more like a spasm than controlled movement. I could almost feel the border between numbness and sensation. It was like a thin line of pins and needles fencing off where my body had shut down.

My wife dialled 999, thinking I was having a stroke and I was blued and two-ed to hospital.

I underwent a series of tests but one of the junior doctors clocked onto what it was early. He’d recently read about footballers whose careers ended or changed early, featuring Morten Wieghorst, diagnosed with GBS in 2000. Professional curiosity had led him to read up on it, and suddenly, here I was, a real-life, half-living case study.

The next four months are blurred even now. I remember a lot of pain, dulled slightly by drugs. I remember nausea from the ventilator. I was cold, then hot, then cold again. I sometimes thought I was a boy again, at times I believed I was dead, or I was being held against my will. I’ve apologised more than once to every doctor, nurse, and visitor who had to put up with me.

Fast-forward through months of ICU, rehab, and top notch support and suddenly I was home, and I was lost. Not just lost, I felt like I’d suffered a loss, a family bereavement that I couldn’t mourn properly.

For 30 years I’d worked with my hands as a carpenter, but I’d dabbled elsewhere.

If I wasn’t earning a living working with wood, I was helping at the local Men’s Shed, or in the garage with a scrap of wood and an idea. My ideal gift was an off-cut of wood, I’d be Happy as Larry with that!

Now I was parked in my chair with my hands curled. Thanks to rehab, I could stand on my own, walk a bit unsupported, and move my arms, but my fingers refused to unbend.

I’d jab at the TV remote, my son did try a voice controlled remote, to this day it escapes me. I could clumsily turn the paper, dragging my hand across it. I could even make a brew, with minimal burns.

Let me pause here for a tip on independent living. Some pill organisers have space for a teaspoon of powder. My wife filled one with coffee at the start of the week, then if she was out I could hook my fingers under the containers, pop them open, and fill a mug. No need to grip a spoon or open a jar.

My hobby and career were gone though.

I was spending too much time and money in the pub, this was January last year. It was a weekday night, pint held in the “two-hand method,” when things changed.

A fellow from the Men’s Shed walked in and recognised me. He asked where I’d been and I gave him the story.

“Come to Shed tomorrow,” and cutting off a protest, “just come.”

Next day, a little worse for wear and a little curious, I went. And that’s when I met a new face, he introduced himself and I apologised for being unable to shake. He lifted an arm that ended at the elbow. “Same!”

He was building a basic bird box and ever the curious type, I had to ask about his process. He graciously endured my barrage of questions, and over the months that followed we became thick as thieves.

The practical tips he taught me were invaluable, but patience was the real gift. The early months were full of frustrations, from dropping tools to hacking up a good bit of wood because I couldn’t grip the tool properly.

In my “old life” I could finish a door or panel with hoops, loops, and floral patterns. Now I was back to struggling to create a circle. At first, devastating, but it’s part of the process.

In rehab I relearned to walk and now I was relearning to craft. I’ll probably never work on site again, but I can use fixed machines to enjoy the process of creation.

And a bonus, the more I use my hands, the less clawed they’ve become. I don’t know how much of that is just time, or what is neuroplasticity, but working with wood creatively feels like it’s sparking new connections.

Not too long ago I would have dictated this story. However, I wrote most of this, messily, myself. I’ve had to run it through various spelling and grammar aids when I’ve hit multiple keys at once. I had to draft my son in to tighten it all up, but I’m not too proud to accept a hand.

Being open to help took me out the pub and into Shed the next day. It got me back working with my hands, and from that I’ve got back some control of my hands.

My next plan is to start an apprenticeship programme. If I can’t build it myself, surely I can teach? I’m looking into Ltd’s. My life is different now, but the future is brighter.

If I can leave you with one bit of advice, it’s this. Find the closest thing to what GBS took from you, where possible, and throw yourself into it. Your brain will remember the feeling and emotions, and may just start rebuilding some patterns.