Saturday, March 16, 2019

Now I Can See the Moon

Thoughts at 2am:

Sometimes, after reading about the 41 brave souls in England who volunteered to have catheters inserted in their brains so an experimental nerve cell growth factor could be tested or patients in Tasmania who are making and wearing buckets festooned with red LED lights on their head in the hopes that new cells will be nurtured...well, it hits me: this. is. really. happening. The curtain wavers a little and I glimpse the evil neurodegenerative wizard behind the scenes.

Years ago, deep in the base of my brain, critical nerve cells silently started dying. There were clues something was wrong but no obvious signposts to point doctors in the right direction. Mostly they just pointed at me: get mental therapy (for the depression & anxiety)...get physical therapy (for the rigidity & slowness)...take sleeping pills (for the insomnia)...take laxatives (for the constipation & digestive issues.) One determined internist put me through a battery of specialists and specialized tests only to finally say: "I know there is something wrong but I'm sorry that we won't know what that is until it gets worse." Ten years rolled by and it got worse. A finger began to twitch. Insidiously and over the course of another three years, that twitch spread to include my entire hand, my arm, my shoulder, down my leg. Finally, the enemy inside had pushed itself out into the open and like eagle-eyed bird watchers, the neurologists pointed at the tell-tale resting tremor and I got to add Young Onset Parkinson's Disease to my life list.

Most of the time, I feel detached from the reality of Parkinson's, from the fact that *my brain is dying.* I think we are *all* slightly detached from the fact that our brains are a part of our body. While housing the core of who we are and what we experience, the brain miraculously commands an unimaginably complex meat suit that propels us through life and living. I knew that brains could fail; my youngest brother's fatal cancer of the brain stem showed me that. But even as I flinched from the sight of a railroad of staples running across my brother's shaved, post-surgery head, I never once considered that someday, *my* brain might fail me. And then it did.

Oddly, the same brain that is failing inside me is also working to protect me from that fact. The feeling of disassociation keeps me from simply lying on the floor and screaming without end. It keeps me writing, painting, teaching, sweeping dog hair, petting cats, parenting, and smirking at the stupid jokes of coworkers while they try to help me cope. I marvel at the flash of ruby on a hummingbird's throat, the power of thunder to shake a house, and the fearlessness in a child's drawing. I stop now to appreciate such things. I am (finally) learning how to live while dying nerve cell by nerve cell and I suppose *that's* the blessing of all this...Reminds me of a favorite quote by Japanese poet Mizuta Masahide:

"Barn's burnt down --
Now
I can see the moon."

5 comments:

DianeH said...

Michelle, I was so glad to see your post. I have been thinking of you recently and praying that you were doing OK. I have missed your posts, the ideas and creativity that you convey. I like the freedom of your artwork and use your pieces as an inspiration. Hope the Parkinsons progression is slow so you can post when you feel up to it. I will keep you in my thoughts and prayers.

Ryusho said...

Great post and wonderful quote, I'll need to remember it. Thanks for taking the time and energy to share with us, those of us who care about you

Daisy Yellow said...

Thank you - for writing and sharing this with us - with the many people out in the world who love you and love the art that you create. Thank you for sharing your perspective about what is going on deep inside. Your words touched me today.

Marit said...

I haven't been to your blog in a long, long time (but I found your name in an old blogpost of mine again, and thought "is Michelle still blogging? Let's go over there and find out...) it's quite a 'heavy' post I find here, ohmy - I thought life threw me lemons over the past year but you are swimming in it... I admire the way you cope with your disease and how you write about it. Sending you a big, warm hug from the Netherlands!

Aine Scannell said...

Hi Michelle I live with horrible chronic pain condition that will only gradually get worse. Its so bloody hard isnt it - I appreciate you being up front about how things are for you. It was your self made foam stamps that brought me on here from Pinterest. Anyway I also have a blog if you would like to sign up. I did one of those abecedarian blog challenges this April and oMG it really was a challenge. It is more or less all that I di for that month. take care love your blog.....best wishes...Aine in the UK

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