Dear Fellow humans and other well-intentioned social media users,
We need to talk. Preferably in person, but video chats will suffice over distance or during the suffocating restrictions of a quarantine within a quarantine.
In normal circumstances a version of this to shall pass would suffice, but I’ve been rubbernecking during my recent whirl with screen addiction. I expect some criticism and unpleasant feedback from strangers trolling the nets, but no idea my snarky comedy could ruin anyone’s day.
Maintaining a public presence may elicit responses from anyone! Your friends’ grandma’s sister to That silent classmate from Science lab you have not seen since 1985 Because he lives in a place you can’t find on any map…or your ex …or a friend with a knife.
My work in Parkinson’s awareness is not to be confused with that of a mad passive aggressive diarist. Oh, I’m mad, but my fight or flight response will wane when I get better. Only I’m not getting better and the last thing any PwP (person with Parkinson’s) needs is an ableist armchair psychiatrist punishing us for medical symptoms and side effects.
In the interest of not wasting another minute on telephone or charades, I’ve created a disclaimer to avoid any confusion between a human being and an avatar.
Recalling Cheryl Strayed’s clever reply when an uptight suburbanite asking obnoxious questions (in 3rd person.)
In case you’ve not heard of Wild or Dear sugar, Imagine a lightning bolt of mythical proportion in possession of a microphone. Now imagine her calmly taking a breath before replying kindly. What could be more dangerous than a writer at the end of a tedious, exhaustive book tour whose tongue is all filled up with bitemarks.
“ I would invite her to keep her opinions to herself.”
So this one is dedicated to the brilliant, empathic work of Cheryl Strayed and her superhuman restraint.
So this is my attempt at Restraint in the form of a disclaimer, No matter how you use Social media And no matter where you go far and that live event, there are always one or two who exist to punch A public figure in the gut.
My content on Facebook Instagram Twitter, etc. is designed to help people with neurologic diseases feel less isolated. If you’ve seen a fight break out on Twitter you might not be surprised that even posts about Parkinson’s can cause a war.
— — — — —
For Cheryl Strayed, who knows.
“You can lead a horse to water, but you cannot make him drink.”
- 12th Century proverb
I am Heather Kennedy. I am living with Parkinson’s disease. I write creatively, and with bravery, humility and ruthless honesty about it on social media, under the nom de plume “Kathleen Kiddo.”
Just as I am not my disease, I am likewise not my Facebook status. It’s concerning to me that I have to point this out, but: Facebook and Twitter are not personal diaries, or cocktail parties. They are publishing platforms. Posts you read here are not going to give you valid information about the personal life of Heather Kennedy.
I need these pernicious, problematic platforms to do my advocacy and activism work around #Parkinson’s. I’m stuck with that reality just like I’m stuck with randomly having to call for help because I fall in the shower.
Falls are not uncommon for people living with motor symptom disorders- Like when the safety bar lost it’s suction again, leaving me nearly unconscious and bleeding. Suction cup support literally sucks- or it’s supposed to- but it will never suck as much as a wounded heart.
I must be a slow learner because this was not the first time I’ve reached out for support and got hurt instead.
I don’t need to remind any adult who writes in the form of narrator or in first person that it would be ridiculous to assume all writing is autobiographical.
Like any consumer of published content, you are welcome to read and comment. You are entirely welcome to share my writing, with appropriate attribution. All I ask is that you refrain from story lining over my stories.
If you have questions about content I’ve published here, or about me personally, you are warmly encouraged to reach out privately and directly. I’m curious and extroverted. I thrive on connection. I bask in expressions of support. Like everyone, my availability is not infinite, but in general, I will probably love talking with you. If you know me in real life, you know this. And hey, you probably have my phone number and maybe even my address!
Here’s what you don’t get to do.
You don’t get to plagiarize.
You don’t get to be verbally or otherwise abusive.
And you don’t get to use my posts as a springboard for conjecture, projection, mindreading, storylining, or inventing a narrative about how I’m actually writing about you, or even myself. For all you know, my assistant wrote what you’re reading. This is a work platform for me. Period. I live my real life in real life. You should try it: there’s chocolate ice cream and karaoke out here. And hugs and eye contact and stuff.
This platform is not a middle school game of Telephone, people. I spend so much time with my jaw hanging open over people’s behavior on this thing that it’s hard to chew my food. Please don’t peruse my feed, invent a subtext and come at me with your weird reaction to what you invented.
If you’re a real-life friend of mine and something in my feed has perturbed you for some reason, then act like the friend you are and just call me!
Personalizing or getting upset after scanning the published works of a friend you’ve known intimately (in person) is the equivalent of showing up in the middle of their TED talk to lob tomatoes at them. Why would you do that to a complete stranger, and my God, why on earth would you do it to a friend?
It may be unconventional to think of Parkinson’s as a disease of the heart, but it’s really taxing mine.
💔
Illustration by the author, with gratitude for smartphone photo apps and smart friends (both virtual and in the flesh.) The ones who know enough ask first, so they don’t shoot up their relationships later.
Giddyup!