one year in days, weeks and months

Day #365: One Year Down

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Well, I made it.

I’m officially in the top 66% of survival stats for people with Motor Neurone Disease, having conspicuously not died during the first year.

I wonder if the King will send me a badge? I might order this one just in case he’s too busy fighting his own life threatening illness.

I’d love to say I’m feeling good and ready to tackle the next 365 days with gusto. The reality is the first chapter of this MND book wasn’t much fun to read and I’m not looking forward to the next one. In fact, the whole book seems a bit small and flimsy to me.

Yet the hands of Fate turn the pages for me, forcing me onwards.

Well, one of its hands is. The other has me in tight headlock, keeping my nose firmly pointed at the text so that I can’t wander off to eat Wotsits and read Asterix comics instead.

So, how did year one shape up? Time for a quick check in.

The Crappy News Sandwich

There’s a great technique for delivering bad news, which I learned through years of running doomed projects within the corporate world. It’s called the Hug-Punch-Hug technique.

First, you start with something positive. The warm, comforting hug in a verbal form. An uplifting intro, settling your audience into a false sense of optimism. For example:

“Our outsouring project in India is going tremendously well. All milestones have been met and all performance indicators are green…”

Then, whist maintaining a fixed smile and with a gentle lilt in your voice, you deliver a bone-shattering uppercut:

“… only one minor thing, tiny really. Someone forgot to change the currency in our spreadsheet from Rupees to Pounds. So we’ve overspent by a smidge over 105 times our original budget…”

Just as they’re reeling from that – trying to figure out how things could have flopped so spectacularly since your last Hug-Punch-Hug presentation two weeks ago – you scoop them off the floor with another lovely hug:

“…but the CEO is busy dealing with suspicious irregularities in the Pension Fund, so they won’t notice. And did I mention how lovely your ears look today, Penelope?”

No-one can get angry with you after such a lovely, warm hug. That would just be mean.

Simon Status Report

And so it is with my year one status report.

First, a hug.

I’m still walking and talking. I’m still eating. In fact, I need a new verb that goes beyond ‘eating’, having put on 2 stone over the last 12 months with astonishing ease. Mmmm, bacon.

My mental health is far, far better than it was last summer. Granted, rolling around on the floor wailing “nooooooooo” and creating little trails of snot was a low starting point – but any rolling these days is mostly restricted to my ever expanding layers of belly flub.

Lastly, my MND is progressing more slowly than many (probably most) other patients, which I’m deeply thankful for. I also started this blog, which I love to write.

Ready for the punch?

My left arm is nearly useless. I can’t use cutlery or do buttons up. Sometimes I wake up screaming in pain due to muscle cramps. I’ve started feeling breathless, and have little energy. I have to ration my talking to avoid tiring out my tongue.

The muscles in my forearm have wasted away, leaving frightening dents. By the time I’ve put my socks on in the morning, it’s time to go to bed.

You know that eye twitch you get when you’re stressed? Annoying isn’t it. I get that twitch in every muscle across my arms, shoulders and chest – all day and night, no breaks. Occasionally it’s in my tongue. How shit is that.

The strength of my right hand has now started going downhill too, leaving me with the prospect of being unable to use either hand within 12-18 months, unless something drastic happens.


Can you imagine not being able to use either of your hands? Knowing it only gets worse from there? Quite a punch.

But here’s the thing. As terrifying as this monster is, it cannot compare to the powerful halo of care and compassion that now surrounds me.

A diagnosis like MND sends you tumbling down a dark hole, but then a thousand strong arms reach down to hold you – to stop you from hitting the bottom.

When extraordinary people around you are willing to give everything, you can put up with anything.

And that, right there, is one hell of a hug.

34 thoughts on “Day #365: One Year Down”

  1. This single blog put me through more of an emotional rollercoaster than the best books I’ve ever read.
    Strong arms unite!
    Your de-bro. 🥹

    Reply

  3. Wish we could remove the shit but we’re committed to being part of the bread in the shit sandwich! Love you! x

    Reply

  4. I love reading these. As Paul said, all the emotions in just a few minutes. There is a book in you I’m sure 😉 Always here to help pull you out of any kind of hole! Lots of love x x

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  5. Simon you are so clever and funny. From the first time I met you in Sydney and we went with Dan and Irene on that weekend trip and you assured me you ‘spoke fluent chicken’ when we had to feed the chickens at the Airbnb.

    I’m in Bristol till the end of this week and then again end of July and would love to pop by and see you and Rhea and your little one (who is probably big now!). I wouldn’t stay long but I’d love to give you both a hug and won’t expect you to tire out your tongue with talking.
    If you’d rather not see friends random mothers I will of course totally understand that too.

    Sending much love to you and Rhea and Luel.

    Hugs
    Christine (Dans Mum)

    Reply

    • Bwark bwark bwaaaaark! Flap flap, peck peck.

      Roughly translates to: thank you for complimenting me on my Chickenese! Definitely sounds like something daft I would say.

      Would love to meet you at the end of July, if we can get the dates to work! Let me know your email address and will sort something out.

      Reply

  6. A truly honest humbling blog Simon, I think you are so strong. I hope sometimes the shit sandwich gives you a couple of days occasionally of nice filling! The relentlessness of chronic pain must be exhausting. I am not sure what to say but thanks for sharing your story! X x

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  7. You are becoming more of a rockstar blogger with every post.
    The shit is so shit!! But you have lots of slices of bread in all of us, we’re there with you every step, Si. Can’t wait for 2.5 weeks time xxx

    Reply

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