Why I Need to Celebrate My Worse Day

The other day while walking Maggie May, I crossed paths with a neighbor who was also walking his dog.

“Aw. What happened to Maggie?”

“She was spayed.”

“Poor puppy.”

“Yeah. Unfortunately, she can’t play today.”

“That’s okay,” my neighbor bends down and reaches inside the clear cone around Maggie’s neck that prevents her from scratching her wound and rubs her head, “Could you imagine if you woke with a cone on your head?”

“No,” I laugh, “I can’t.”

“Must be the worst day in their little lives.”

September 4, 2013, was the worst day of my little life. And for those new to Write on Fight on, I didn’t awake with a plastic cone around my head. Instead, an MRI found a hole in my brain. A condition which would later be identified as diffuse cerebellar atrophy.

In the first few years after my diagnosis, a simple question pestered me, “What the hell is going on?” As if I had woken up with a cone around my head. Like Maggie, I was scared, confused, and wanted nothing more than to have my old life back.

And then on September 4, 2017, I published a post called Why I Celebrated My Worst Day. It was the first time I celebrated the hole in my brain. I baked a cake, decorated it, and shared it with my family. It was a moment of clarity. That I need to learn not only to accept, but love my fate.

This picture was taken on September 1, 2021

One of my favorite things since I created this blog six years ago is my friend and fellow writer, Deb Duaer, who was battling ALS, read my 2017 post about celebrating my worst day, and decided to celebrate her diagnosis-versary with a cake of her own.

Deb has since passed. But her defiance, her fighting spirit sprouts goosebumps on my arm as I smooth the cake batter with a spatula. As I stand in the kitchen feeling that tingle of joy and sadness reserved for the living.

Hole-in-the-brain speaking, the past twelve-months were more difficult than any other year. I fell so hard I tore my left rotator cuff, my symptoms progressed so much I had to retire from teaching, and my speech declined to a point where I had to swallow my pride and attend speech therapy.

Yet on September 4, 2021, I will listen to “My Worst Day” playlist.* I will take a walk. I will read. I will write. I will hug Cindy. I will tell each of my kids I love them. And then we will eat cake.

I will do those things to protect me from scratching my wounds and feeling sorry for myself. I will do those things because they bring me comfort and joy. I will do those things because I’m alive and I need to.

I don’t know about you, but I pretend to be good at ignoring the bad stuff in my life. Out of sight, out of mind is my bumper sticker. But what if, instead of just ignoring the bad stuff, I became better at accepting and greeting the bad stuff?

Like my friend Mike, a former collegiate wrestler now living with a disease similar to mine, said I should be more like a wrestler. Face your opponent head on. Use your opponent’s weight, or in our case a rare brain disease’s weight, against itself. Use your leverage.

So eight years and counting, on September 4th, I will stare down my opponent, use my leverage, and accept my fate. I will eat cake, listen to “My Worst Day” playlist and do all the things on the day that almost broke me. Almost. But not quite. Not quite at all.

Be well,

Jay

*Here is “My Worst Day” playlist. Maybe some of these songs will comfort you the way they have comforted me throughout the years.

Badlands-Bruce Springsteen

Red at Night-The Gaslight Anthem

C’mon Kid-Dave Hause

Your Hand in Mine-Explosion in the Sky

Learning to Fly– Tom Petty and the Heartbreakers

Longest Days– John Mellencamp

Running on Empty-Jackson Browne

If I Ever Leave this World Alive– Flogging Molly

The Gambler-fun.