Bedtime Stories for the Living

September 05, 2022

Bedtime Stories for the Living

byJay Armstrong

GENRE: Non-fiction/Memoir

Diagnosed with a progressive brain disease, a young father is determined to teach his children the importance of pursuing their dreams.

A cell phone’s ring interrupts the silence as Jay Armstrong sits in his high school classroom preparing for the year ahead. Something about the ring makes his stomach drop. It’s his doctor.

The words, “diffuse cerebellar atrophy, a rare, degenerative brain disease” float through the speaker. All of Jay’s youthful dreams of being a writer rush back, flooding the twenty years he has spent teaching students how to appreciate novels, memoirs, and poetry. The care he put into teaching them how to write with clarity, insight, and humor, and how to dance at the prom. The bedtime stories he never told his children spin in his imagination. It will all die when he dies.

Jay chooses to experience his condition as an inspiration here to teach him to appreciate the time he still has. He writes letters and stories to his three children about his failing voice, his impaired motor skills, and falling down on Christmas morning. Writing helps him cope with the illness and its symptoms. And so, he accepts the mission of writing more stories for them: the difference his father’s wink made at a critical moment of a baseball game, why they should take walks even in cruddy weather, and how he avoided having to explain what semen is for.

As his condition worsens, Jay’s faith in the power of storytelling deepens. His daily life is wildly different than he foresaw, and possibly shorter, but he can leave his children a legacy more valuable than any financial inheritance. He writes "Bedtime Stories for the Living", an episodic memoir to show his children how to accept their limitations and find joy. The collection of tender, witty stories about fatherhood, persevering despite illness, and pursuing your dreams, demonstrates how love gives us the strength to face heartache with bravery and grace.

Excerpt:

Don’t Give Up

Eight years after the phone call that revealed I had cerebellar atrophy, I saw a new neurologist—on a friend’s recommendation—who specialized in complicated neurological diseases. (It’s safe to say all neurological diseases are complicated). The neurologist was cool. He wore a bowtie, asked a lot of questions, took handwritten notes, and made lighthearted neurological disease jokes. He suggested I have a spinal tap to see if my spinal fluid was carrying disease like a roofer up a ladder and into my brain.

White Ladder was the title of David Gray’s 1998 best-selling album. I spent many a college night listening to Mr. Gray as I tried to untangle whatever juvenile nonsense I had knotted myself up in. I often think about that eighteen-year-old kid trying to make sense of himself and the world, only to conclude I’m not so different now. Yes, some things are different. I’ve put on a few pounds. Strobe lights give me headaches. I’ve replaced cheap light beer with filtered water. But I’m still listening to “Babylon” on repeat. Still struggling to keep going. I’m still soothed by the music of my youth.

The doctor had straightened his bowtie, scanned his handwritten notes, looked up, and said, “What do we have to lose?”

“I guess nothing,” I said. “But does it hurt?”

“Not really.”

“Have you had one?”

“A spinal tap? No.”

I’m pretty sure in 1998 I spent all of my energy avoiding pain. And when life hurt, I cured myself with cheap light beer and David Gray. Little did I know then, pain is elemental. As long as we’re alive, we will never be short on suffering.

My friend Jesse Jackson, Texan host of the Bruce Springsteen podcast Set Lusting Bruce, is recording new episodes while he battles his second serious bout with cancer. Trevor, who, like me, has cerebellar atrophy, recently reached out from San Diego, California to send positive West Coast vibes to the East Coast. A few weeks ago I got an email from a mother in Ohio whose son had recently been diagnosed with a rare, degenerative neurological disorder. She said she found my blog and thanked me for sharing my story. She said my writing helps her son find hope in a seemingly hopeless time. The nice lady at the end of my street, who waves to me and our dog Maggie on our morning walks, just had to put down her fourteen-year-old dog.

No matter your affliction, your confusion, your heartache, or your pain, life is hard. Life is really hard. And sometimes I want to quit. Sometimes I want to self-indulge. Sometimes I want pity. Sometimes I don’t want to write on. Sometimes I don’t want to fight on.

A former student emailed me after a horrible family tragedy to say their life is really hard right now. A lot of tears. A lot of loneliness. A lot of sadness. And then, in the last paragraph, they thanked me for always writing.

Yesterday, I received a message from the cool neurologist regarding my spinal tap. No viruses or stale beer from 1998 had been found in my spinal fluid. The blood tests conducted to find some evidence of why I might have a hole in my brain also came back negative. The neurologist concluded that after eight years of endless and expensive medical tests, the evidence remained unclear. He was still uncertain as to why I have a hole in my brain and, if or when, my condition will worsen.

Let me be clear: I don’t want to live like this. I want my balance and vision and speech to return. As much as I love him, I would gladly lean Clark Able in a closest corner forever. I want to ride a bike and run and jump once more. I don’t enjoy suffering. I’m not a sadist. I don’t enjoy uncertainty. I’m not a Buddhist monk. I’m just a suburban dad who knows my present choices will ripple far into my kids’ future lives.Their choices will be, in some way, influenced by my actions. I want them to know, right now, I’m trying my best. I want them to know I endure for them. Because I know one day, when they’re struggling in their adult lives, they may ask themselves, “What would Dad do?”

I discover again and again that I'm stronger than my pain. I want you to remember you're stronger than you realize, too.

Don’t give up.

Keep going.

What do you have to lose?

About the Author:

In 2013, Jay Armstrong was diagnosed with diffuse cerebellar atrophy. A condition that causes dysfunctional motor skills, speech and vision impairments, and balance deficiencies. At the time of diagnosis, he was establishing himself as an endeared high school English teacher, a varsity soccer coach, and an above average dancer. However, the progressive disorder forced Jay to reevaluate his life.

Supported by his high school sweetheart turned wife (Cindy) and their three children (Haley, Chase, Dylan), Jay retired from teaching in 2021 to pursue his dream of becoming an author.

Jay believes in the power of storytelling. He also believes in dad jokes, laughter, and the unrelenting pursuit of dreams. Jay’s debut book, Bedtime Stories for the Living, is an episodic memoir in which Jay shows his children how to accept their limitations and find joy. The collection of tender, witty stories about fatherhood, persevering despite illness, and pursuing your dreams, demonstrates how love gives us the strength to face heartache with bravery, humor, and grace.

Born in Philadelphia, Pennsylvania, Jay is passionate about Philly sports, soft pretzels, and Rocky Balboa.

Q&A With the Author

What did you enjoy most about writing this book?

A major dream in my life was to write a book. Period. And as corny as it sounds, as I was writing the "Bedtime Stories for the Living.” I often whispered to myself, “You’re actually doing it!”

As Tony Robbinsish as this sounds, I really enjoyed the thrill of achieving a dream. Yes, it was daunting at times. And yes, I spent a lot of nights eating Peanut M&Ms and doubting myself. But holding my book in my hands was like holding one of my children. Minus the crying and sudden bowel movements. A moment of absolute love and pride and wonder. A moment of being alive.

Do you have any other books you are working on that you can tell us about?

Yes, I do. I think my first book was really about acceptance. I wanted to write a book composed of small, everyday moments experienced with my children and family–my daughter writing poetry, my son learning the “F” word–that provided me the courage to accept my disease. A book that announced to my kids, “Your dad has a degenerative brain disease and he’s doing the best he can.”

However, the next book is about creating lasting change. The life expectancy of a US male is 80 years-old. Which means at 42 years-old, when I started the book, I’m closer to death than birth. This terrifies and thrills me. There’s a real urgency to life now I realize I need to pivot. And as strange as this sounds, my disease is helping me change. My disease has forced me to reevaluate my life and do the most difficult of human things…change.

I think the older you get, the harder it is to change. Yet learning to change is necessary for survival. I see a lot of middle-aged people that are reluctant to change, which ultimately leads to unhappiness. And I don’t want to be unhappy.

Can you tell us about what you have planned for the future?

Well, my plan is to keep writing my Friday post on my blog, writeonfighton.org, until the internet goes out of style and to finish my second book.

I also plan to listen to my children laugh and cry, tussle their hair, ask them questions, tell them stories, and witness them wrestle with the heavy, moral dilemmas of adolescence.

Oh, and I also plan to take naps on the couch.

How long have you been writing?

I’ve been writing off and on since high school. But back then I lacked the confidence and courage to make something of my writing. I kept my writing buried in a desk drawer for fear of criticism and rejection. I feared that people would question my “weird” urge to write. I was a kid. I was impressionable and desperately wanted to fit in. And plus, back then talking to girls was way more important than writing.

Sadly, I didn’t get serious about writing until life got serious. I’m 42 years-old now and I started really writing at 33 when I was diagnosed with a degenerative brain condition. It’s funny, bad news can be a hell of a motivator.

Anything more you would like to say to your readers and fans?

It’s weird to hear “fans.” Beyoncé, Brad Pitt, and SpongeBob have fans.

I buy my sushi from the supermarket. I wait in lines at the post office. I drive a Hyundai.

But I would like to thank everyone who has supported my writing over the years. Thank you for buying my book, visiting my blog, and telling other people about my writing. I hope my stories have provided you with comfort, courage, and companionship. Because your messages, your support have done the same for me.

Be well,

Jay

Bedtime Stories for the Living is available at the following:

The book will be $0.99.

Amazon https://www.amazon.com/Jay-Armstrong/e/B09LF9HN51

Lulu https://www.lulu.com/shop/jay-armstrong/bedtime-stories-for-the-living/paperback/product-y67dzn.html

Kobo https://www.kobo.com/us/en/ebook/bedtime-stories-for-the-living

Vivlio https://shop.vivlio.com/product/9798985214314_9798985214314_10020

Barnes and Noble https://www.barnesandnoble.com/w/bedtime-stories-for-the-living-jay-armstrong/1140591539?ean=2940165155536

Apple https://books.apple.com/us/book/id1598611714

Websites:

writeonfighton.org