A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Monday 7 November 2016

Reward

I was on the train to work, half reading something to do with a celebrity I’d never heard of in Metro when I couldn’t help but overhear the phone conversation of the passenger behind me.

He was speaking in that exaggeratedly hushed tone people use on trains. A tone which tries to indicate that you realise it’s annoying to virtually everyone else nearby but you have to take this call as it’s really, really important.

Anyway, I don’t know what the bulk of it was about, but I did hear his report of a trip to the dentist – which was fine, in case you were worried - he needs to go back next August but he didn’t get a sticker.

And this made me smile.

We’re so used to this rewards-based recognition of dental appointments as children, that it’s almost a universally accepted trade-off.

It also remains an irrational but slight disappointment when you don’t get the same sticky well done as an adult.

So, with my annual neurology appointment looming in two days time, I’ve been considering what might be suitable rewards to receive at the end for those of us who are a bit more scrambled.

Obviously new brains and spinal cords, the ability to continually remylienate and genuinely feeling as well as we may look would be ideal.

But in the sad absence of those, here’s my thoughts:

1. A personalised hot water bottle/cool pack, which can be adjusted to suit your personal temperature preferences. And therefore prevent hands/legs/everything packing up on you when the outside environment gets just one degree too warm or too cool.

2. High heels with fancy microchips in the bottom that automatically balance you.
4. A flashing badge which has a slogan to represent your particular experience on any given day. Choose from: “TODAY I wet myself in public/said stupid stuff in a meeting because my brain won’t work/cried in the kitchen to hide it from my children/fell over outside a pub and had to explain the not-being-drunk thing for the 75th time/despaired at the benefits system/inwardly crumbled at a thoughtless comment BUT I AM STILL GOING.”

5. A machine which magically allows other people to experience all of your symptoms – both the Boo! Gotcha! Bam out the blue ones
and the constant, wearing, dragging ones, both emotional and physical. Admittedly it would only be for a short period (unless they’d really annoyed you), but it may help them to gain some insight into what it is you’re trying to explain.

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