Day #354: Hey, how’s the dying going?

My lovely Occupational Therapist (OT) came over for a visit yesterday.

She advises us on adaptations we need for our house, such as accessible bathrooms and ceiling mounted hoists that will help me flop gracefully between pieces of furniture in the future.

She’s moving on to a new role, so this would be the last time I’d see her.

We chatted about the new designs for our house and some respiratory tests I need to take in a few weeks. I have these tests every three months at my local hospital. They allow me to gleefully track the data points that describe the dastardly decline in my diaphragm (which, thankfully, is staying strong for now).

“Good luck with those breathing tests!” said my OT, as she was leaving.

“Thanks, you too.” I replied, instinctively.

Hmm. Bit of a brain-fart there. Perhaps she didn’t hear it.

After a brief awkward silence, she gracefully brushed it aside.

“Take care, Simon. Wishing you all the best. A new OT will be in touch with you shortly.”

”Great,” I said, “see you soon.”

No you won’t, Simon, you complete plonker.

At that point I hastily shut the door and decided it would be best if I stopped talking to people.

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I’m sure that many of you, like me, have performed some spectacular social bellyflops in the past.

Fist-biting embarrassments that kept you up at night thinking “how could I have been such an idiot?”, whilst everyone else involved had probably forgotten about it long ago.

The MND Association website doesn’t mention ‘awkward conversations’ under the list of effects that Motor Neurone Disease has on patients, but it should.

In fact, it affects everyone around the patient too. Have you ever wondered what to say to someone who has received some terrible news?

Well folks, due to the unfortunate experience of recent events, I’m now flush with knowledge on this subject! And I’m here to help.

May I present to you… the top three responses I’ve had after telling people about this little dance I’m doing with MND.

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1. The Wingman

“Oh God, I’m so sorry. That absolutely sucks – but stay strong man. We’ll fight this together. I’m in the trenches with you. Shoulder to shoulder, war-paint on, bayonets fixed. We’re going to give this disease an absolutely massive kick in the nuts for having chosen you. What can I do? Do you want a beer? Let’s go to the pub, I’m getting you a beer.”

This response tackles head-on one of the biggest struggles you face when getting diagnosed: the intense feeling of loneliness, of suddenly being transported to a different dimension without so much as a packed lunchbox. Condemned to rapidly decline whilst everyone else gets on with tying their shoelaces and doing up their buttons, like it’s the easiest thing in the world.

Acknowledging the horror, and then standing along side me to face it – hats off to all of you who did this.

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2. The Effing Jeffer

“No f***ing way! Holy f***ing s**t. That’s totally un-be-f***ing-lievable mate. I’m so, so sorry. You poor bastard. Jesus H Christ. You don’t deserve this mate, you’re a f***ing hero. I just can’t believe… f**k! Life is such an a**hole sometimes. Two large beers please, bartender.”

This one isn’t for everyone, but I love how raw and honest it is. We Brits can be so reserved, but a disease like MND gives us unrestricted permission to scream blue murder at the sky. It’s rather therapeutic.

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3. The ‘How Dare You!’ gambit

”Just got your message. You utter bastard. For years, I’ve been the sick one of the gang… and now off you go and contract a disease I can’t even pronounce properly. For the record, I’ve spent the last 20 years eating and drinking absolute garbage in the hope of contracting so many cancers that I become a medical marvel. Now you just ride in and pull this out of your hat! Well sir, I will not be outdone. I will return and reclaim my title of ‘The Ill One’. Now that I’ve got that off my chest – I want you to know I love you and will do everything I can to help. Cold beers are in the fridge, waiting for you.”

Only one friend was brave enough to try this gambit – you know who you are!

This was brilliant, as it was so true to the character of my friend, and made me laugh out loud in the middle of a miserable day spent contacting close friends and ruining their afternoons with my little black cloud of doom-news.

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I think we all worry too much about saying the wrong thing in these situations. We fret that perhaps people don’t want to talk about it. Or that perhaps they do, but you don’t know how to bring it up. I meet lots of people with MND these days, and I still worry about these things.

For me, I’d much rather hear a raw, unfiltered reaction than an artificial construct of what people think they should say. Most of us who are suddenly staring down the barrel of mortality will not be easy to offend. Plus, it’s nice to have some variety.

I’d like to clarify that simply saying “I’m so sorry, let me know if there’s anything I can do” is absolutely fine. Ignoring the news and pretending everything is normal – that’s okay too.

There are very few things that are not okay. In fact, there is only one response I’ve received that made me raise an eyebrow. An old colleague of mine messaged to say:

“Sorry to hear that Simon, hope you get well soon.”

This one gets a C+ for effort, but an F for research.

If only they had offered me a beer…