My boss looked into the camera on a team Zoom call today and said “I see you’ve launched a newsletter.”
I paused mid breath, unsure what to say.
“It seems you have a lot of time on your hands,” she continued.
She didn’t see the expression on my face. My camera was turned off. Even if it was on she wouldn’t have seen anything other than fatigue and frozenness.
Historically I never turned on video because I loathed and abhorred being on camera. Who wants to look at themselves and spend time cataloguing wrinkles and sagging skin? Not I. But the real reason is I am often unable to look interested or attentive for extended periods of time. Thank you ADHD. You make my life easy.
Now the camera is off because my face is often frozen, or I haven’t showered by the late morning unless I have a photo assignment. Trust me, no one wants to see me un-showered. Those romantic ideals of a woman waking up looking gorgeously rumpled applied to me never. Although there was one week in college during my junior year, of which I have photo proof, leading me to believe it was possible. But now, it’s a horror show.
In those seconds after her comment, I wondered how she knew.
I didn’t think she followed me on Twitter. While I’m very open about my Parkinson’s and travails on that platform I often forget that it is a public forum and just because someone doesn’t like, comment or retweet something I wrote doesn’t mean that they didn't see it.
My openness will not change, unless it ceases being helpful to others; unless it prevents from connecting and building community.
I was very upfront about my advocacy and social media usage before taking on this photojournalism fellowship. While my job comes first, advocacy comes a smidge higher on the priority list.
Because advocacy is what is saving my life. Without it, I would not be able to do my job. Advocacy gives me a reason to breathe and not want to think about the end.
And so I told her, I only sleep a few hours a night, 3-4.
“That’s not good,” she says. “It’s normal for Parkinson’s,” I respond.
“There must be different types of Parkinson’s,” she replies, referring to someone she knows who had the disease.
Friends, let me tell you, I did not want to touch that comment with a 10 foot shaky and bradykinetic pole. When the scientists figure it out I’ll blow my horn and do aerial cartwheels to share the news.
The end result of all this is, I sleep so little so I get more done. That is what I said.
One hundred percent #fakenews - and yes I just used that hashtag.
I get things done because my ADHD, as damaging as it as been in so any aspects of my life, comes in handy with hyperfocus, or so I thought until I listened to Dr. Russell Barkley. I’m still processing his views. My takeaway is I guess I’m just a gifted and talented gal. But going into how PD and ADHD and all those gifts interact within me is too complex for even the most eager sycophant.
What is clear is sometimes I get things done and sometimes I fade into an apathetic and inattentive state looking like a reject from The Walking Dead.
Very few understand what that mental and physical state is like. People with Parkinson’s understand the apathy. People with ADHD understand the inattentiveness. But both, together? It’s a new type of Molotov cocktail, with some spicy garam masala powder on the glass rim. Finding energy in that state is like a 90 pound 18 year old trying to carry an injured 220 lb soldier up a flight of stairs.
Movement does not happen.
Force of will does not work. Thought does not work. Anxiety about job loss or redundancy has no effect. Prayer, nyet, nope, nada, zilch. So what does work? I don’t know. To this day I do not know how I manage to get up and work. But I am thankful that I do, whether it’s at 3:00 am after a turbulent 4 hours of sleep or at 10:00 am as I force myself to shower.
There are no quiet nights for me when my mind can rest and heal. There are moments. And I am thankful for those. Particularly when eating my newly discovered cereal combination, it’s mind blowing I tell you.
But to get that delicious detail, you’ll need to wait until the next post. This one is too bloody long as it is, and not what I intended to write at all.
But thank you for staying with me through it and being my test group.
I’ll see some of you at three hours past midnight.
Ahh those ‘extra hours’ Parkinson’s so kindly offer us, over flowing with apathy and nightmares! Great post x
Love your first post Sree. Looking forward to the next one