If you saw my last video, you may remember how I forgot to thank the many wonderful people in my life who have helped me through the course of this crappy disease.
Well, it turns out that a lot of you have been rather fantastic, so I’m still working on that post! I’d like to make sure I don’t miss anyone out.
Whilst I inch through this task, here is a wee distraction.
May I present 5 darkly humorous things that have happened since I was diagnosed with motor neurone disease…
1. Apple dictate fails
With my hands now having the strength of two over-ripe bananas, I rely on the iPad’s dictate function most of the time to write messages (including this post), as I can’t type with my fingers.
As impressive as this technology has become over the years, it is far from infallible and has produced some amusing results:
”Can you please cook that delicious beef bourguignon tonight?”
turned into
“Can you please cook that delicious beef boring Nun tonight?”
We’ve called it Boring Nun ever since.
2. Maximum recline
For nearly 40 years I have lent back on dining chairs, balancing them on two legs, in full knowledge that this is a terrible idea.
When I was about five years old, I fell backwards onto the floor for this very reason. I was so excited about the Heinz Beans and Burger Bites that were about to be served up for lunch, that I rocked myself off balance, mid-rendition of the song that advertised this highly processed (but rather delicious) 80s snack.
🎶 Heinz Beans and BuuuuuUUURRRrraaagghhh …. Bites. Ow. 🎶
A few weeks ago, after having just told-off by seven-year-old son for leaning back on his chair, I of course did exactly the same thing. Old habits die hard.
For a brief nanosecond, at the apex of balance, I realised I had over-committed myself to this maneuver. With eyes now widened in panic, I slowly toppled backwards like a fat tree being felled onto a carpet-y forest floor.
Having arms made out of spaghetti, I have no means of breaking such a fall. So I landed in an undignified flump followed by a stunned silence. One bruised shoulder and one bruised ego.
The next five minutes were spent trying to figure out how to get me up again, whilst I stared at the ceiling, contemplating my life choices.
3. Manic cry-laughing episodes
MND is really weird. A particularly strange symptom that affects many of us is called pseudo bulbar affect (PBA).
People with PBA get uncontrollable laughing or crying fits which either exaggerate, or don’t even correlate, with how they actually feel inside.
From the outside, you look terribly upset or fantastically amused but you may actually be feeling neither, or the polar opposite, on the inside.
During a recent counselling session, I allowed myself a bit of manly blubbing. Good to let it all out, as they say. Particularly when a paid professional can’t stop you.
Except, this time it was different. Rather than just my normal snotty wailing, I started cackling with laughter at the same time. One of those wheezing guffaws that was so strong, I could barely breathe.
I had no control over this – but boy was it intense, and not a little hilarious. So much so, that everyone else in the room started laughing too. I think that helped a bit.
4. The Hand Hamburgerler
Lots of kind hearted people have visited us over the summer to enjoy a barbecue in the garden.
The weather has been so stifling recently, that relaxing next to those white-hot coals to cool oneself down was quite a treat.
Being an obvious fan of hamburgers (refer to weight-gain data from previous video), my wonderful friends prepared a delicious one for me a couple of weeks ago, alongside the obligatory cider-with-straw combo.
Now, I should explain that my brain has not caught up with the fact my hands flop about like empty gloves.
Gleefully, I picked up the burger with my wobbly right hand, only to see its entire contents slip out the back of the bun, skittering cross the table top.
I simply didn’t have the strength to hold a beef patty, cheese and lettuce stack within one bready package.
The now largely empty ketchup sandwich I was left holding was disappointing – but mildly amusing.
5. Window shopping for tree graves
I’ve decided I’m going to be a tree.
Once my ride on this dark horse ends, I’d like my spirit to fly off to become a Robin and my handsome left-overs to nourish the roots of a beautiful tree somewhere – perhaps one that might feed said Robin with its berries.
I’ve always liked Robins. Christmas cards are perhaps to blame for that. I was so unspeakably excited about Christmas every year when I was young, that I probably unconsciously associated Robins with sheer joy.
However, to become a tree, you have to find a burial ground willing to stick you under one. Cue lots of internet searching, odd phone calls and trips to serene but slightly morbid natural burial grounds, dragging my bewildered wife along with me.
One second you’re set on a wild cherry tree, with its beautiful blossoms in spring. The next you realise that almost every other bugger has chosen the same thing on that site, which leaves you feeling a bit miffed about whether to choose something more unique!
Burial tree window shopping for oneself… pretty bizarre. I highly recommend it if you love a good ol’ dark humour chuckle.
Those all sound like exactly the sort of things I’d do bro. 😁 Except I’d go for getting buried under some Japanese Knot Weed. No chance anyone’s getting rid of me! 😎
Your blogs ALWAYS make me smile and chuckle Si – thank you. You’re an inspiration- that word is used too much but very much true about you x
Brilliant humour, thanks for sharing Simon.
Being based in Australia, my choice of tree would be a native Lillypilly which produces berries for bird life.
You have the makings of a book here Sime xx
Simon, I have laughed (in a PBA style) at every single example.
Dark humour is the only way to go.
Keep writing x
Hi Simon, I’m not entirely sure where I came across the link to your blog posts (Facebook perhaps?) or even if you remember me – Claire Challis, from the EP days, although now married so Claire Churchill. I knew very little about MND before reading these posts and I’m truly sorry you are going through this. It does sound like you are surrounded by lots of love at this time and you’ve definitely kept a sense of humour! I’m loving your updates in the blog and hope to read many more. Thinking of you. Claire x