Hello lovelies! Here is the new format1…I hope you enjoy :) For those of you interested I have a creative Parkinson’s group/community via WhatsApp where we hang out and support each other’s creative stuff, there are some tips & ideas to enjoy as well :) All welcome.
Tuesday – 3:03am – The Political Situation, Revisited
Woke up gasping from another bloody erotic dream.
Not Jason Momoa. Not Pedro Pascal. No.
Michael. Fucking. Hestletine2.
I mean, what even is that? Have I run out of viable fantasy men? Am I now being handed the political leftovers because dopamine’s on strike?
He was very polite in the dream. Took his shoes off at the door. Called me “madam”. Made tea before the... Still. No.
Thursday – Morning
The judgy dog has decided I’m not walking well enough to deserve affection. She’s taken to sighing at me. Actually sighing. Loudly. While lying just out of reach like some furry Greek chorus of disapproval.
Made coffee. Spilled half of it. Made a new cup. Left the milk in the cupboard and the sugar in the fridge.
At this point I’m just grateful I didn’t end up drinking shampoo again.
Saturday – 5pm – The Invisible Olympics
Youngest had a meltdown over the wrong jumper. I tried to help but my brain had left the chat. Couldn’t find the words. Just sat there, blinking, as she raged and cried.
I finally got out: “I’m sorry, love. My brain's gone spaghetti again.”
She softened. Came and sat next to me. Said, “I know, Mum. I just hate that it’s like this.”
Same, babe. Same.
I'm competing in an invisible Olympics every day – slalom between symptoms, marathon of fatigue, synchronised falling. No medals, though.
Monday – The Cat is Back
Imaginary cat has returned. Today she’s orange, smug and called Maureen. She follows me around and judges my outfit choices. I think she and the dog are in cahoots.
I asked Maureen if I should go to the art opening I was invited to. She knocked a mental glass off a shelf in my mind palace.
Fair. I think I’ll rest instead.3
Wednesday – 4pm
Something weird happened today.
I was walking (read: lurching) around in the studio when one of the other artists offered to help me. I declined. Then I accepted. Then I hated myself for needing help. Then I thanked her so profusely I probably traumatised her.
The rest of the day I felt... off.
Like I'd overdosed on someone else's goodness and now I was crashing.
The independence I used to have, the fire and swagger, have been chipped away. And sometimes, even when people are lovely, I grieve what I’ve lost so much it makes me feel like a cracked vase pretending to hold water.
Later the eldest texted me: “Proud of you for getting to the studio”
Yeah. I'm still here, kid. Even if I'm glue and willpower some days.
Friday – 11:47am
Made toast. Dropped toast.
Dog tried to eat toast. Dropped self trying to beat dog to toast.
Now we’re both sitting in shame, me with a bruised bum and her with crumbs in her beard, pretending nothing happened.
Sunday – Screaming Into the Laundry
Sometimes it just builds.
The rage, the grief, the exhausted fury of having a disease that makes your brain eat itself backwards. I tried folding towels but ended up crying into a hoodie while the dog licked my foot like she was trying to perform an exorcism.
Middle of the day. Sun shining. And I’m crumpled in a pile of laundry asking the universe why it picked me.
But then the youngest walked in. Sat next to me. Said, “Shall I do the rest of it, Mum?”
And that’s the thing, isn't it?
Parkinson’s has stolen a lot. But it hasn’t stolen them. My girls are fierce, flawed, funny and somehow still willing to sit with me in the dark until the light comes back.
Tuesday – Pre-Wine
The real battle of the day wasn’t existential dread or existential diarrhoea (don’t ask). It was brushing my hair.
My arm wouldn’t lift properly. My fingers wouldn’t grip. I tried using a round brush and almost garrotted myself. Eventually did it with a fork. Am now halfway to a Little Mermaid cosplay but at least I’m no longer feral.
Small wins.
Thursday – 9am – Dopamine Desert
Woke up feeling flatter than a pancake under a bus. No dopamine, no juice, no spark. Just meh.
Tried dancing to music. Dog left the room. Maureen rolled her imaginary eyes.
Sometimes the best I can do is not lie face-down on the carpet all day. So I sat up, drank some water, and pretended I wasn’t thinking about chocolate digestives every three seconds.
Saturday – Noon – When the Pain Hits
The pain today is like a drunk gremlin with a grudge, punching its way around my joints.
I googled to see if it could be anything else. Even the search results were smirking like I was a moron. I am a moron. I just want a different answer.
I want something fixable.
Monday – 10:30am – Workshop Wonders
People keep asking if I run workshops. Bless. It’s flattering.
But also terrifying. Do I let 12 strangers see me shake and stall and forget words mid-sentence? Do I tell them I may need a lie-down halfway through?
Then again, I know what it feels like to be left out. So maybe yes. But we do it my way: with cushions, tea, and absolutely no icebreakers.
Wednesday – 6:12pm – Maths, Parkinson’s Edition
If one shower = 3 units of energy
and cooking dinner = 4 units
but brushing teeth = 2 units
And I only have 5 units for the day...
That’s right. Dry shampoo for the win. Takeaway. Mouthwash. Parkinson’s Maths.
Thursday – 1am – Fear and Furniture
Fell again. Not bad. Just enough to scare the dog and bruise my ego. Landed against the sofa like it owed me money.
Afterwards I lay on the floor and wondered what the hell happens in ten years. Twenty. What kind of mother will I be when I can't get off the floor?
Then the cat (Maureen) lay on my chest. And I remembered: I’m still here.
Friday – Morning
Youngest said the thing again: “But you don’t look like you have Parkinson’s.”
It hurts, even when I know it comes from fear. Her Google search turned up the usual: old men, hunched backs, slow walkers.
We sat down. I showed her videos of younger women, creatives, dancers with PD. We talked. We cried. She said, “Maybe you should be one of those people who changes what people think Parkinson’s looks like.”
Maybe I already am.
Sunday
Today I just breathed. Slowly. On purpose.
No striving. No proving. No performing.
Just breath and birdsong and the occasional whine from the neurotic collie.
This too is resistance.
Monday – Afternoon – My Girls
They’re 17 and 21. And they are, without doubt, the greatest joy I’ve ever known.
They fight like banshees and text me funny memes and help me reach things and tell me when I’m being weird. They remember the things I can’t. They pretend they didn’t notice I put my clothes on backwards. They are young women shaped by love, rage, and an involuntary education in neurology.
This is not the life I wanted for them.
Tuesday – 9:45am – Still Here
That’s the thing, isn’t it?
You fall. You cry. You shake. You joke. You rage. You ache. You love.
You write it all down. You get up again. You go to sleep hoping for dreams without politicians.
Still here.
With love,
Exx
P.S. You know the drill: I am pathetically grateful for sharing, commenting and/or wine.
Old school UK Conservative...possibly deceased.
The hallucinations are getting more and more bizarre.
HESELTINE?? Oh, Emma, things are worse than I thought….xx
Your girls are wonderful. As is my son. And no, we didn’t want this for any of them, but here we are. I wish we were both well again. I’m with you in spirit, at least.
Oh Emma, you are a magician with words. You describe precisely the trials, tribulations, fears and occasional laughter that come with Parkinson’s. I read your post with tears in my eyes. Thank you.