Locked-in syndrome is a rare condition. If you survive the event causing it, then your chances of dying in the first four months are 90%. I’m really, really sorry if that’s doomsday to anyone going through this. However, that’s what the doctors told my family. I’m just quoting the professionals. I wasn’t told anything. Having experienced a brainstem stroke resulting in Locked-In syndrome, I can understand why the doctors tell families this. It damages you’re ability to cough. So eating any kind of food is life threatening.
However, if you’re frantically looking for anything about locked-in syndrome, please know everyone has a different experience. These are a few books available. Click on the picture to follow the link to Amazon:
This is the leading account of Locked-In syndrome. I’ve tried to get a copy in Australia. I couldn’t. An American friend mailed me a copy. I can’t be sure which countries it’s available in, but it’s not available in Australia.
Kate is now a doctor, so this is an encouraging perspective.
This Kate still makes the journey between America and New Zealand.
Peter is now studying to become a speech pathologist.
Lastly, my own addition to this illustrious company:
I wish you the best.
Everyone shifts unconsciously in their sleep. Well, those without a disability. But for me? I’m fortunate to sleep in my own bed. No hospital bed. Yet, I have moments where my swallow doesn’t work properly and I wake coughing and spluttering – in the wee hours of the morning. Shane always rushes to sit me up. Oh, how I love waking him at that hour, especially when he has to be up at 6:30am. Not.
I lay on my right side. My kind of shifting involves trying to roll on my back. Even then, I can’t completely lie flat on my back because my butt is stuck in the position for lying on my side. So, lying on my back is often a twisted affair. I never fall asleep like this. For two reasons. 1. If I fall asleep on my back, I wake morbidly weak (even more than normal) and getting off my back requires mammoth effort. I grunt and snort and wake Shane. If you haven’t already guessed, I unintentionally wake him as much as a newborn babe. 2. My swallow can’t keep up with the saliva produced on my back. It’s too much of a choking risk. I only manage around 5 minutes.
Did you know, when you can’t shift your weight you get pressure marks or sores? My skin is soft. That’s lucky, you think. Well, no. It’s a curse. If I wear pyjamas or underwear, I get welts where the creases of clothing were. Itchy as hell. Just on my right side. Half the time, I can’t even reach to scratch. An taunting itch I can’t scratch? Let’s just say, I used to the torment. My saving Grace? They disappear throughout the day. In time to start all over again.
I worked hard over the course of my hospital stay to advance from a hospital bed to a normal bed. If you want to see how, check out my book here. It’s only $US0.99 for this week. The transition was fresh in my mind when I wrote the book, otherwise I’d share but I bound to forget details now.
A brush with death brings life into sharp perspective. We all know life is short but, for me, overnight (well, once I emerged from my coma) I appreciated everything more. Oh, sure, I appreciated and took time to drink in the kids as babies. No regrets there. I travelled, even lived in the UK. No regrets there. Been to Disneyland. Twice. No regrets there. Even made sure I visited Prince Edward Island in Canada (only Anne of Green Gables fans will understand my motivation for that trip).
However, the moments I savor now are even more basic. Time with family. Time with wonderful people, be they friends or amazing people. Having a conversation (I’ve waited five long years for that goal) with them. Basking in the sun. A sunset slashed with oranges, pink and night blue (when I can see it, hard to see over our fence from a wheelchair!).
Do what you love. Live your passion. I was torn pre-stroke. There was law – I loved helping people. Then there was hand-making cards – I loved the thought of bringing joy to someone else.
Writing ran last. I thought writing a personal passion. It didn’t involve anyone else. I hadn’t reached a level where I considered the most important part of writing. The reader. I didn’t see … it can touch someone too. The day I realised that… what a lightning strike. Writing escalated to first, for now I see. Now, I live it. I breath it. I love it.
My advice, should you choose to take on board my experience (for 90% of people die from a brainstem stroke), find what you love. Savor it for the short time we are here. Don’t wait. Otherwise, it may be too late. I know I’m not ready to waste a second.
For many of us, we can narrow it down to at least a few books. So, which book, for you, contained beautiful sentences – turns of phrase, fresh language – characters you loved, a plot that kept you guessing and a message you took on board?
I thought I had my two novels that fundamentally touched my core and that was that. Only this week, I’ve another to add to my collection. And this time it wasn’t fiction. Surprise, surprise. This time it was a book on writing. It only took me two nights to finish. Now, I’ve read some worthwhile writing books because hey, don’t judge, I want to write.
Well, I do write but I want to write fiction. Not like Dickens. No siree! I’ll never be that good! There’ll only ever be one Dickens or one Jane Austen. One Shakespeare. Yet I’d like to write well enough to entertain. A much smaller and, hopefully (one day), achievable goal. I’m in this for the long haul.
My first two books are something any reader will know, Jane Austen’s Pride and Prejudice (any Jane Austen will do though, Emma’s a close contender) and L.M. Montgomery’s Anne of Green Gable’s series (yes, all of them, for who can stop at one?). And the newest book to change my life?… Grant Hudson’s How Stories Really Work: Exploring the Physic of Fiction. If you write, or want to write, then do yourself a favour… READ THIS.
Leave a comment. What’s your favourite books or book?