Life is Change
Life is about to change.
As spring breezes in summer, my days of couch quietude will soon slam shut like a high school locker door.
The house will become an angsty auditorium of urgent adolescent phrases. “I’m bored,” “I’m hungry,” and “I’m bored and hungry.”
Both as a student, and then a teacher, I counted down those final days of the school year. Everyone did. The prospect of lazy days, untimed bathroom trips, swimming pools, daytime TV, and eating at the faintest stomach growl was appetizing.
As a student, I graduated. As a teacher, I retired. But I’m a writer now and as my son lovingly describes, “a home dad.”
I like my quiet schedule of dog walks, coffee, and spending afternoons trying to build cozy sentences for the homeless nouns and verbs that knock at my door.
If this “home dad” had his way, the school year would never end and summer would be a three-day weekend.
But I know, in my middle-aged fusspot heart, the school year always ends.
Summer always begins.
My only choice is: rail and resist against the inevitable or accept and adapt to the inevitable.
As you know, I’ve been working on my second book. A few months ago, I thought I had the book almost complete. It was simply a matter of dotting i’s and crossing t’s. And then, things changed. My editor offered some provocative suggestions. I fell and my knee popped. I fell again and my hand broke.
Living with a progressive brain disease, I frequently have to adapt to the physical and emotional changes that occur. As a writer, making changes–by way of editing and revising–are essential acts. As a dad of adolescent children, life develops at a dizzying and heartbreaking pace.
Life is a never-ending lesson of adaptation.
The following is an excerpt from my upcoming, untitled book.
The book recently became untitled after one of those provocative suggestions from my editor. A suggestion I initially resisted, but came to accept the editor’s reasons why the book deserves a new title.
Like the book’s title, the following excerpt saw considerable changes as well. It’s about how my illness forced unwanted changes upon me and how I’m learning to adapt to those changes. How illness challenges self-image. And how, illness or not, we’re all living with “a fire breathing dragon on our back.”
School ends, seasons change, kids grow, diseases progress, editors suggests and I can either rail and resist or accept and adapt. It’s that simple.
Life is change.
And no matter what occurs, no matter how hungry and bored I get, I always have to remember my adaptation is elemental for soothing my fusspot heart.
The Dragons We Slay
For my pending retirement, I had a doctor’s appointment at a medical office I’d described as merde, the French word for shit.
A few weeks later I returned to the same merdehole for a second medical evaluation.
Nothing had changed.
The plain walls and shiny, white tile floor remained. There had been no extreme medical office makeover since my last visit. No windows, skylights, or koi ponds were installed. No cheap art — A Bowl of Oranges, Beach Dunes at Sunrise, White Doves Gliding in a Blue Sky — was tacked on the wall. There was not even a house plant wilting in the waiting room corner. This place was, after a second inspection, still a sterile shithole.
A heavy wooden door creaks open, and a short, light-brown-skinned woman in scrubs holding a manila folder appears.
With help from my trusty cane, Clark Able, I pull myself up, take a breath, and wobble toward the voice.
As she leads me down a white hallway, I notice she is a head shorter than me. Even her hair, which is black and shiny, is short. On the nape of her neck is the scaly head of a dragon, breathing fire toward her right shoulder. The dragon’s head is attached to a thick, equally scaly neck that curves and disappears under the hem of her scrub collar.
Did this small nurse really have a full dragon tattoo on her body? Sure, you’d expect that body art on a bare-knuckle cage fighter, but a nurse? Was the American Nurses Association aware of this? Was her father?
She stops at a doorway, turns, points. “In here.”
Above her face mask are fierce brown eyes that would wobble the knees of even the bravest dragon-slayer.
Was this her lair? Is this where she devours mouse-men like me? And if she ate me, what would she do with Clark? Maybe use him as a toothpick to loosen my soft dad-flesh from her teeth?
Clark and I enter.
“You can sit in that chair. I’m going to take your vitals.”
The nurse with the dragon tattoo puts the manila folder on a small counter with a stainless-steel sink. She opens the folder, pulls a pen from her pants pocket, clicks the pen, jots down something, clicks the pen again, looks at me with those fierce brown eyes again and says, “That’s a cool cane.”
I raise my eyebrows and look at Clark. “Thanks.”
“I’ve never seen one like that. Why is it taller than a regular cane?”
“It’s a walking cane. The height helps me with balance.”
“Yeah, it’s very cool.”
As a middle-aged suburban man who reads literary criticisms for fun, owns three pairs of slip-on Sketchers, and enjoys falling asleep on the couch, “cool” is a word long gone from my vocabulary. Nowadays, I might call a sale on cantaloupes “cool” rather than think of myself or anything I own as “cool.”
She cuffs my right arm and takes my blood pressure, and I notice the dragon’s scaly tail sneaks from under her sleeve and curls to a stop on the back of her right hand.
I don’t have any tattoos. It’s not that I have anything against them. I wish I had the bravery and confidence to get one. Tattoos that are artfully done and symbolize or memorialize something or someone seem to age well. Tattoos that are products of teenage rebellion or hasty worship of a now-ex-lover tend to spoil quicker than those discounted cantaloupes.
In silence, we wait for my blood pressure results to flash on the digital face of the sphygmomanometer (blood pressure cuff).
I don’t tell her, but I haven’t felt very cool lately. Despite the cane, having a movement disorder is, from my experience, very uncool. The editor of my first book had called my writing “plucky.” And then she cleared her throat and asked if my condition ever sucks.
The truth is, my condition sucks all the time. For the last seven years and ten months it has sucked. The waiting rooms, the MRIs, the fear and frustration, the guilt and regret, the stumbles, the falls, the swollen joints, the 2 a.m. internet research, the troubles with speech, balance and vision, and the sudden end to my teaching career have all sucked in their own ways.
My condition has instigated my most piteous, whiny, and sullen self. My most uncool self. Yet ironically, my condition also has allowed me to find my best self. My most cool self. The self who takes tremendous joy in writing plucky stories. The self who is braver and smoother in wielding nouns and verbs than in real life. The self who finds perspective, a thimble of wisdom, and does the hard work of laughing at himself. The self that realizes all of us are trying to live the best we can with a fire-breathing dragon on our back. It’s those small victories we all have in overcoming our fears that build character. And maybe each dragon we slay makes us just a little bit cooler?
She peels off the Velcro of the blood pressure cuff, walks over to the counter, opens the manila folder, scratches something down, and says, “You have really great blood pressure.”
Is this how nurses flirt? Are my cane and my blood pressure too much for her blood pressure?
As cool as I can, I respond, “Thank you. I do what I can.”
“Great blood pressure and a cool cane. Maybe you’re the perfect man.”
But before I can respond, the nurse with the dragon tattoo opens the door, steps into the hallway, and vanishes from my life forever.
Greetings to everyone who found me on the University of Pennsylvania’s Ataxia Clinic’s website! Thanks for stopping by. Though I’m not a doctor, I hope my words comfort, encourage, empower, and serve as good company on your journey.
You miss 100% of the shots you don’t take…
A few months ago, with low expectations, I took a shot and entered “Bedtime Stories for the Living” in the highly regarded, highly competitive international book contest presented by Readers’ Favorite. Readers’ Favorite is an established force in the publishing industry. They have worked with Penguin Random House, Simon & Schuster, and Harper Collins, and have received the “Best Websites for Authors” and “Honoring Excellence” awards from the Association of Independent Authors.
Anyway, just before I was about to take a midday nap, I was informed that this suburban dad had won…
First Prize, the Gold Medal, in the Non-Fiction/Parenting genre!
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Jay Armstrong is a speaker and an award-winning author. Despite being diagnosed with a rare neurological disease, that impairs his movement, balance, eyesight, and speech–Jay presses on. The leader of the Philadelphia Ataxia Support Group, he hopes to help you find joy, peace, and meaning in life.
For Jay, a good day consists of 5 things:
4. Hearing his three children laugh
5. Hugging his wife
(Bonus points for a dinner with his parents or a drink with his friends)
Jay hasn’t had a bad day in quite a long time.
You can also visit Jay at jayarmstrongwrites.com