I had never heard of Guillain-Barré Syndrome. I was 42; reasonably healthy, and life was bubbling along quite nicely. My partner and I had two children and two cats. All was ‘normal’. I was very active; going on several long walks a week, cycling, playing football, and playing with my children. And I took all this for granted. There was no reason to suggest the biggest change in my life was just around the corner.
One weekend I got a painful stomach bug, with strong leg pains,which laid me low for a few days. When I went to see the doctor, he told me to go to hospital.
For the next five days, I was a patient with a mystery illness. At first they wanted me to think this was just irritable bowels, but I knew it wasn’t. The aches in my legs were by far the worst symptom, and a tingling had begun in my left thigh.
With no answers, and hoping it would go away, I went home for the weekend. And the pains got worse. Even beer didn’t help.
Then, still in extreme pain, with both feet numb and tingling, and after collapsing several times, I was admitted to hospital, now with “something neurological”. As a 42 year old in a ward full of old men, I was left alone; experiencing a week of the most appalling and shocking neglect, as I rapidly lost the use of my legs, my bowels and bladder, then my hands. By the time Guillain-Barré Syndrome was diagnosed, much damage had been done. Within 24 hours it reached my lungs and I was suddenly an emergency. The deterioration in my breathing was so quick and so severe, I didn’t think I would survive the night, and tried to prepare myself to die. I woke up on a ventilator three days later in Intensive Care.
During the weeks of agony, discomfort and frustration in Intensive Care, I had vivid, extraordinary and ludicrous hallucinations. They were as real and believable as anything else I saw and heard.
Slowly I got the use of my hands back, and I began to draw. Once out of Intensive Care I made the first attempts to walk again, and after a week I was able, with the aid of a walking frame, to make my own way to a toilet. I was soon allowed home. But the pains and the stings remained.
As soon as I left hospital, I wrote detailed notes on my experience, both the real and the hallucinatory. From the awful neglect before my diagnosis, to the highly professional treatment in Intensive Care, a lot of crazy things happened. One night for instance, I had attempted to take part in a lavish New Romantic photo-shoot, another night I listened-in on nurses rehearsing a musical about the Cutty Sark. I also witnessed a wild party, a flood in the ward, and nearly got to the moon in a spinning rocket. At least I thought I did.
I wrote the book What the..? What Guillain-Barré Syndrome Did to Me as I thought I really ought to. I had an extraordinary story to tell. The book was well-received, and among the comments were suggestions that health professionals should read it. A BBC producer noticed it, and asked me to recount the story of my trip to the moon for an episode of Wireless Nights. The episode is still available on iPlayer: bbc.in/1DrVqgT
After initially recovering well, I then had two slow painful years where there was no longer any progress. I could walk, but I had the frailty and stamina of a 90 year old. A short walk once a week was enough to knock me out with exhaustion. The pains and discomfort were always there.
I then learnt something which changed a lot. After speaking to several other GBS survivors, I learnt that as my recovery had stopped for two years, it wasn’t going to start up again. Everything about my condition was most likely going to be permanent.
Rather than see this as bad news, it kickstarted a very positive phase in my life. I knew I had to get used to it, and get on with it. I had taken up writing and painting, initially as a pastime, and wrote three books, and I taught myself to paint again by going back to basics and starting from the beginning. I got better and better at it and eventually the paintings began to sell.
Unable to work in the conventional sense, I became a self-employed artist. I’m three years into this. There’s not a lot of money in it, but there’s a great deal of pride in having my art on other people’s walls. I spent so many unhappy years in office jobs, wondering what I should like to be doing instead. Being an artist is a bit of a dream come true, and yet it took a life-changing illness to make it happen.
My relationship with GBS is very strange. It was agony and frightful, it badly damaged my body and still affects every day life with its limitations, frustrations, aches and pains. And yet somehow, it’s made me a better person. I have positive energy bursting out of me. I’m a prolific painter, composer and songwriter. I’m a writer too and my new book will be on Amazon in a few weeks. My fourth book since my GBS. I’m creative, busy and fortunate, and attempt to be positive.
My family and friends were - and still are - superbly helpful and supportive. That’s helped a great deal.
It’s been over six years now. I’m permanently frail and always in pain, but I’ve learnt to get on with it. I’ve lost walking, running, football, dancing, and my independence. But most importantly of course, I survived. I’m still here, and very grateful for it.
Simon’s ebook:
What the..? What Guillain-Barré Syndrome Did to Me, by Simon N. Smith, is available on Amazon: for Kindle/I-phones/Smart phones etc. Link: www.tinyurl.com/nukv5sv
Simon’s artwork on Facebook; www.facebook.com/simonsartwork
Website: www.simonsartwork.co.uk
Twitter: www.twitter.com/simonsartwork
