A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Friday 6 May 2022

Do I wanna know?

A lot of MS is about what happens in your head.

For literal reasons - it's a disease that wreaks havoc on the brain.

And for more metaphorical ones - it's a disease that wreaks havoc on your mindset.

When the rot first set in, all those 18+ years ago, one of the first questions I had was what was going to happen to me?

Would I lose my eyesight? Would I need a wheelchair? Would I be able to have children? How bad would it get?

All understandable reactions to being told you have a progressive, incurable disease when you're in your mid-twenties. 

As time as progressed, the questions become less frequent and have shifted in focus, but are nevertheless, still there.

And occasionally, among the mayhem of everyday work and family life, I do stop to wonder again.

Wonder how much time I have left for reasonable health, how much working ability remains and how much we should do something now and not gamble on a later which may be fraught with far more difficulties.

These are sensible things to consider and it's possible that I really should take a step back and plan a bit more, rather than just being aware of them as vague concerns.

But to do so would risk upsetting the mental status quo I have (relatively) successfully achieved for quite a long time now.

If the choice was given to me to know just how and when things will get worse - would I want to know?

I'll be honest - the answer varies. 

There's something to be said for living in the moment and not spending too much time picking at scabs. It's quite freeing and probably better for my well-being.

But I am, at heart, a planner and certainly resonate with the sentiment of forewarned is forearmed. Even taking into account the self-knowledge of an extreme worrier.

So, on balance, yes, probably, I would want to know. But I very much see why others wouldn't.

However, until such time as medical crystal balls appear, we're all in the dark.

Looking for the occasional lightbulb moment and feeling our way through the best we can.

:: Do I wanna know? by Arctic Monkeys


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