When a Numb Lip Took Me Back: My Guillain-Barré Syndrome Story

Not too long ago, I was sitting quietly here at home when something odd happened.My lower lip went numb.Not entirely, but just enough to make me stop and think.Now, for most people, that might not mean much. Maybe just a fleeting reminder of a trip to the dentist. But for me, it took me straight back, nearly 40 years back, in fact, to a part of my life I rarely talk about.A chapter that began with a similar sensation… and ended with me learning to walk again.A Different Kind of JourneyBack in 1987, I was serving with the British Army in Germany. Life was, as it always seemed to be back then, busy, fast-paced, and full of uniformed routine.And then I noticed something strange. First, the tingling around my mouth. Then the pins and needles in my feet. I chalked it up to tight boots. Classic army thinking, really.But within days, my speech had started to slur. I was staggering, though I didn’t realise it at the time. My mates thought I’d been drinking. I hadn’t.Things escalated quickly. I was sent to the military hospital in Hannover, where the doctors were puzzled. Tests, theories, guesses. No answers.Within days, I was flown back to the UK, to the military hospital in Aldershot. And within hours of arriving, they had a diagnosis:Guillain-Barré Syndrome.What Is Guillain-Barré Syndrome?I’d never heard of it back then. Most people still haven’t.Guillain-Barré Syndrome (GBS) is a rare autoimmune disorder where the body’s immune system mistakenly attacks the peripheral nervous system. It can cause muscle weakness, numbness, and in more severe cases, like mine, paralysis.It affects about 1 in 100,000 people each year. So not common. But when it strikes, it can be devastating.There’s no known cause, though it’s often triggered by a viral or bacterial infection. And there’s no cure, only treatment and rehabilitation.In my case, I was paralysed from the chest down. By Christmas Eve 1987, I was in intensive care, unable to move and barely able to breathe after also contracting the flu. It wasn’t exactly the festive break I’d imagined.Thanks for reading Coffee and Rakija! This post is public so feel free to share it.The Long Way BackRecovery was slow. There’s no shortcut with GBS. It takes its time, and you just have to go along with it.After some time in a general ward, wheelchair-bound and struggling, I was sent to a place that would become central to my recovery: RAF Headley Court.Now, if you’ve never heard of it, Headley Court was a military rehabilitation centre in Surrey, housed in a beautiful old country manor. For decades, it helped wounded service personnel rebuild their lives, physically, mentally, and emotionally.Originally opened during WWII to treat RAF pilots with severe injuries, it became known for its cutting-edge rehabilitation programmes and holistic approach. Sadly, the Ministry of Defence closed it in 2018, moving rehabilitation services elsewhere, but back in the 80s and 90s, it was a beacon of recovery.And for me? It was where I learned to walk again. Literally.Climbing stairs, balancing on crutches, falling down and getting back up.There were days I thought I wouldn’t make it.But the staff there were extraordinary. Firm but fair. Encouraging without pity.Not Just PhysicalOne thing I hadn’t expected was the emotional toll.When you lose your independence, even temporarily, you realise just how much you take for granted.Simple things like walking to the bathroom. Signing your name. Holding a cup of tea.Everything had to be relearned.But slowly, with effort (and a bit of British stubbornness), I got there. And 18 months after that first numb lip, I was back in uniform. Not long after that, I was climbing volcanoes in the Ecuadorian Andes, just to prove to myself that I could.Coffee and Rakija is a reader, listener, viewer-supported publication. To receive new posts and support my work, consider becoming a paid subscriber.Still With Me?I don’t tell this story very often. It’s not something that comes up in conversation here in the Balkans.But that lip? That tiny little sensation the other day?It reminded me that Guillain-Barré Syndrome never really leaves you.These days, I’m over 70 and still reasonably active, walking daily, exploring, creating, podcasting. But the fatigue that comes with GBS is something else. It’s not ordinary tiredness. It’s deeper. Heavier.Back in the day, I ignored it. I was told to rest when I felt exhausted. I didn’t. Army culture doesn’t make room for naps.But now? I listen to my body. I rest when I need to. And I don’t feel guilty about it anymore.Why I’m Sharing ThisI’m sharing this not because I want sympathy or attention, but because maybe, just maybe, someone else out there is struggling with strange symptoms, exhaustion, or the slow road to recovery.If that’s you, you’re not weak. You’re healing.And if, by chance, you’ve had Guillain-Barré Syndrome too… get in touch. There aren’t many of us, and it’s always good to swap stories from the other side.Until Next TimeNext post, I promise, we’ll be back to rivers and rakija.But every now and then, it’s good to remember where we’ve come from.And if your lip ever goes numb… maybe don’t just blame the coffee.Stay curious. Stay kind. And rest when you need to.More From Me This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit coffeeandrakija.substack.com/subscribe