On the wrong path-ogen
Where Emma isn't feeling brave.
Hello, lovelies, Thank you for your sweet messages and virtual hugs ❤️ as our household tackles covid. Here’s a wee ramble I wrote that has been published in The Mighty, which has cheered me up this week!
Don’t worry this isn’t a woe-is-me-fest of a newsletter. Although for the record…woe is me! Let it be known I feel like shit but that's covid folks.
I was thinking through the fug of fever, about something that has been said to me a lot recently. Well, it’s quite a few things:
You are so upbeat, humourous, sweary, honest, brutal, brave etc about Parkinson’s.
Once I have swallowed the desire to yell ‘What fucking choice do I fucking well have?!!!’
I attempt to listen to a breakdown of how they couldn’t cope and be so positive (I think there is a subtle veiled criticism here; perhaps it’s not as bad as I make out?) At the conclusion of these self-absorbed moments, I find they have ordered their world and I am neatly packaged into a box. She’s so inspiring, so strong, brave and there (pat on head) there.
Am I being unfair? Isn’t this just folk trying to find the ‘right’ words, to support and not to get it wrong? It is that.
And it’s more.
It’s an unthinkingness. It’s a desire to have a quick definition so we can move past the uncomfortable step outside the normal and back into the mundane cookie-cutter people we are supposed to be. It may be conditioning. We don’t have enough of the language to allow free, funny, easy and frankly, brutal conversations about our wellbeing, bodies and mental states.
And I don’t mean that ‘well’ people need to speak ‘ill’ people’s language. I really don’t care if you know what dystonia/basal ganglia/dopamine means or not. What I’d like people to say when they hear you have a fill-in blank would be something like:
Aw man that sucks.
How is that for you?
Anything I/we/fluffy dog/chocolates can do?
Want to tell me about it?
I started writing this nonsense not because I was sure it would help anyone but more because I was frustrated at not finding much about chronic illness, having a good swear at it and just getting on with life.
So, what about the inspiring and/or brave label? Someone might feel inspired by something you have done by virtue of having a condition or disease. But that doesn’t make them necessarily ‘inspiring’. I’d like my sparkling conversation and sophisticated dress style (ahem) to be inspiring. Not whether I can be honest about how often Parkinson’s makes me need to pee.
Bravery? Every single person on this earth is brave by virtue of existing. Be that is a state of bliss, pain, or disease. Or wealthy, poor, happy, sad. Long-lived or short we are brave by being. It’s not something that can or should be measured. Why is one person braver than another? Our battles are relative.
I think you, my lovely readers, are the brave ones. You read week after week not knowing what tirade or fluffy clouds with rainbows you are going to get!
As ever share your thoughts in the comments, share this letter and I’ll love you forever!
Thanks for voicing my sentiments exactly! But do you know what....if you're not chronically ill, if you've never suffered much pain, if you've always been pretty healthy ........ then YOU HAVEN'T GOT A CLUE WHAT IT'S LIKE! People really cannot ...just cannot understand. Lucky bastards.
Get well soon dear!! Sending love ❤
You took the words out of my mouth ... I don't want to be packed away in an "inspiring" box. I want someone to give me a space to scream and rant in, not a place where I share my feelings and get told things like, "Oh, I know what you mean. I get really tired sometimes..." NO YOU FUCKING DON'T, NOT LIKE THIS!
I even had a carer say to me once, " Ooh, you are lucky - I wish I could stay in bed all day." A CARER.
Hope you kick Covid's bum soon!