Nobody Gets It, Not Even Me

Full-Time work with neurodegeneration and neurodiversity is a struggle

I meant to post more regularly, and as a year has gone by, you can see that I’ve failed. I originally wrote this and posted on Twitter as I couldn’t post from my phone on Substack. In reading through it I felt a small release of tears. I haven’t cried in years over this disease, this neurodiversity. But writing this was a bit of the release I needed. I since deleted it from Twitter, my ADHD is happy, all that excitement and the rush of the delete button, and so here I share it with you.

---

This past week has underscored how much Parkinson’s Disease has affected how I do my job and my ability to do my jobs. ADHD has a role to play too. I raised the issues I was having to my employer, and they were very understanding and they said I get it, etc.

I could not have asked for a more supportive response. The problem is that they don’t get it. The pervasive ways this disease affects my body, my mind, my emotions; how I struggle every day to perform and compete in a neurotypical healthy world.

How can I explain what I’m dealing with, the utter complexity and vastness of PD? Is that even necessary? How can I reassure them that I’m not slacking, I’m struggling, and I’m getting help, which will decrease my work efficacy but long-term will make me stronger?

I’m still trying to get it myself. The perfectionist in me is running amok because I’m not measuring up and performing as my pre-PD self. It insists that I should be able to. The kind mentor in me, if I can find her, encourages me to be kind and realistic and compassionate.

All the while I wonder if maybe I should request some time off just to rest and see doctors and heal. But really so I can drop the heavy tension that has been surrounding me since my symptoms got worse. So many conditions my body is juggling.

So many names that  my tongue struggles to pronounce. Dyskinesia. Dysarthria. Dysphasia, Depression Apathy, Anhedonia (the root origin being Greek, the opposite of hedonism, so apropos), and the list goes on. All these balls in the air I juggle with shaky, stiff hands. 

And the ball of performing at work bounces fiercely in causing disorder. Or is it the other way around? I’ve diagnosed for almost 10 years and the past few months is the first time I’ve truly struggled at work. The past 2-3 weeks even more so.

The underlying current of stress this creates is persistent, tenacious and exhausting. I feel too tired for all the therapies I need to get me back on track. Yet I have to. Dharma. I have a duty to my employer to finish what I’ve started.

I have a duty to myself to not let this disease, this neurodivergence take more than it has. Yet part of me wants to attain endless sleep. But only after my finances are in order, all debts paid, all images scanned, labeled and archived correctly (60+ years worth). 

All dishes washed, all camera gear organized, old toe nail polish disposed of correctly. What do I really want? Healing sleep. A healthy appetite. A keen and eager mind. The ability to rest in the moment. Relief from debilitating stress.

I want to do my employer and fellowship proud. Create work that I can stand by. And that has been incredibly tough these past few months. It is with my disturbed and different mind that I must pull myself out. Because while medication, therapy, community helps, and is necessary,

There is a kernel deep inside me that only I control, that only I can reach. For it is I that must reach for my medication; it is I that must find a way to get out of bed; it is I that must brush my teeth; it is I that must pick up that pen and camera as my sword.

It is I that must choose joy in this wasteland. I will fall off many more times. I am uncertain of how quickly I will get back on, but I will. The cycle will repeat over and over. I just hope a little magic comes my way; and a better understanding of the semicolon.