Guillain Barre Syndrome.
The three French words that changed my life.
And no doubt yours, too, or someone very close to you, given you are reading this article.
I vividly remember the moment I realised something was seriously wrong inside my body.
November 11, 2005. Remembrance Day.
24 years old.
I was out for dinner with friends when I suddenly started slurring my speech. Many people wouldn’t find this unusual for a Friday night on the town.
Except I’d been drinking soda water all evening. Blood alcohol reading of zero.
As I stared at my reflection in the bathroom mirror, eyes streaming, vision alternating between double and blurred, struggling to get my mouth to obey my brain’s commands, I tried to quell the rapidly rising feeling of panic.
It all went downhill from there.
Within three days I went from being a carefree twenty-four-year-old to a critically ill twenty-four-year-old, jumping into the record books with one of the worst cases of Guillain-Barré Syndrome my treating hospital had seen in 10 years, my body systematically shutting down.
Seemingly not content with getting ‘mainstream’ Guillain-Barré Syndrome, I went for its rare cousin, the Miller Fisher Variant, aka ‘Upside Down Guillain-Barré Syndrome.’
I experienced full-body paralysis.
My optic nerve was damaged. I had light sensitivity and double vision in both eyes. My blink reflex stopped working so my eyes had to be taped shut at night to prevent them from drying out.
I was fed using a nasogastric tube. And let me just say, the formula they feed you is NASTY! Worst. Gas. Ever!
I slurred my speech, making it very difficult to understand me.
There was the night where I thought I was going to drown in my own saliva because I couldn’t swallow or spit properly.
I was in an incredible amount of pain, barely able to stand a sheet covering my body.
There were days, which morphed into weeks, of uncertainty.
I had no control over what was happening. I had to trust that these doctors, these people whom I had only just met and yet essentially held my life in their hands, knew what they were doing.
I had to trust that this would all play out as they said (hoped!) it would.
I had to trust that I would eventually regain function in my body, to move again, to speak properly again.
That kind of trust, that level of reliance on another person(s) with your own life…that’s one of the scariest things you can ever experience.
And this was just the acute, critical illness stage, never mind the recovery stage, which I daresay like myself, you are finding even more challenging.
Guillain-Barrè Syndrome. Getting. Better. Slowly.