You Community At Me?
You Community At Me?
Where Emma discusses community.
Hi, thank you so much for the comments and shares for the new series! Love you all xxx
Having joined Facebook1 earlier today I wanted to chat about community.
When I was first diagnosed, I resisted being part of something I had prejudicially dismissed. I thought I’d rather watch paint dry than hang out with a bunch of folk moaning about an incurable disease. The groups I saw available were far older than I was, and I genuinely didn't think chair exercises were quite what I needed.
It’s one of the reasons I started writing this…I wanted wine-swilling, gallows humour and significant swearing. I wasn’t ready to accept the other version. (I’m still not)
I needed to know there were other women juggling hellish parent’s evenings and cleaning up dog pooh from an overly anxious collie. I wanted to make silly, rude jokes with blokes who can’t quite manage their tremors when their football team misses a goal. I wanted to laugh about the little (and big) things that make Parkinson’s simultaneously hilarious and tragic. And I absolutely wanted to help anyone not feel so bloody alone. Because one of the truths is: it’s a damn lonely business living with this.
I have realised it doesn’t have to be. Many of us can log on to a social platform at 3 am when insomnia/restless legs/dystonia/nightmare/anxiety/rigidity has become too much and someone will be there. A virtual hug and commiseration can make all the difference. The tips and tricks shared even if they just keep your sanity intact for a few more hours are lifesaving.
I joined Twitter on the 1st Sept 2021! And since that day I have had so many brilliant interactions. Every day brings a laugh, a virtual hug and I learn something new about this disease. I’m not exaggerating and I haven’t been imbibing too much wine…yet.
The community that continues to grow around me is glorious. I love the comments and thoughts you all share. Every Friday I receive 100 or so emails. This isn’t bad as my list is just over 130 folks now! (I do try to get back to you all ❤️)
Sadly, I probably won’t meet many (if any) of you in person. Unless we get so big and create a Who Stole Our Dopamine? meet up!
Thank you, lovely community. My Parkinson’s life would be less joyful without you.
With love
Emma xxx
I deleted it…it was horrid! (updated 2023)
Hi Emma. You're right...it is all about community. And not just sharing the latest life hacks. If one good thing has come out of my diagnosis it's the people I've met. We've commiserated together, eaten and drank together, participated in fundraisers and social events. Sure there are a few Debbie Downers, but for the most part, everyone has been a blessing since I can just be myself as can they. We truly are in this together if we want to be. Keep up the good work!
Hiya Emma - thank you for this. I soooo agree with what you say about community. It’s given me far far more than expected through reading, writing and sharing. Sad, and limiting though that health professionals I come in (real life) contact with are nearly always negative about it, warning me how dangerous it can be. They miss the point! x