Year 9: Why I Still Celebrate My Worst Day
I never thought a picture could change my life.
But on September 4, 2013, an MRI picture showed that my cerebellum was rotting like an old peach. A few days later, a neurologist who looked a lot like musician Paul Simon studied the photo and diagnosed me with cerebellar degeneration.
A disease, Pat in my support group, described as the, “casserole of brain diseases. With a pinch of ALS, a hint of Parkinson’s, a sprig of MS, and a dash of dementia.”
After Pat said this, the meeting fell silent as I–and maybe everyone else attending the meeting–considered the realities of our future lives.
Then Pat clucked his tongue and said, “Well, now I’m hungry.”
People laughed and began to talk about food because changing the subject, when the subject is difficult, is something humans do exceptionally well.
I dumped the chocolate cake mix into a tan ceramic bowl. I turned to the refrigerator to retrieve three eggs when Dylan entered the kitchen, “Dad, what are you making?”
Before I could explain to my youngest son that I make a cake every year to celebrate my worst day, Haley entered the kitchen and said, “Because dad always makes a cake to celebrate his worst day.”
Haley opened the refrigerator, grabbed a water bottle, shut the door, and spun out of the kitchen.
“Dad, why do you make a cake on your worst day?”
I cracked an egg into the chocolate mix and thought about all the things I wanted to tell my nine-year old son about how hard it is to live with an incurable disease. The stress and anxiety it causes. The swells of uncertainty. Or the sadness that sags my heart when I think about never having rode an ocean wave with him. I don’t tell him I yearn to teach him what I know about books and soccer, girls and gratitude. Or that I yearn to witness him grow into a man. To watch him achieve his dreams. I don’t tell him that one day I hope to hug his children.
The kitchen, like my support group, falls silent.
Dylan looks up at me waiting for an answer.
But all I say is, “Because today I can either cry or eat cake. What should I do?”
Dylan smiled, “I can always eat cake.”
There are nine candles on the cake. They are in the shape of a 9. The plan was to light them all. However our lone lighter died after we lit one candle.
This week, on my virtual book tour, I was asked, “What is my favorite scene in “Bedtime Stories for the Living?”
My book’s scenes are like my kids. It’s impossible and unfair to pick a favorite. I love them all. They are all fun and flawed in their own unique way.
However, I think my favorite scene to write was the first scene, “The Phone Call,” when I was diagnosed with cerebellar degeneration.
This scene taught me how to write about a personally difficult subject in a way that didn’t sound whiny or self-indulgent. It taught me how to mix hard truth with humor and emanate a tone of hopefulness even when it seems all hope is gone. This was a big moment for me as a writer. It also established the tone of the entire book but helped me discover my voice as a writer.
Writing about my incurable brain disease is not necessarily fun. However, my disease is my material and if I can present my material in a way that’s honest and engaging and relatable to the reader–who may not have a brain disease–but certainly is enduring their own suffering, than I’ve succeeded as a writer.
Despite it’s subject, the first scene contains moments of absurdity. My neurologist looked like the musician Paul Simon. And as he was describing the diagnosis and all it’s awfulness and as my mom, who was with me, was biting her bottom lip, I missed some of the doctor’s details because I was brainstorming Paul Simon songs that seemed appropriate for the moment:
“A Bridge Over Troubled Water”
“The Sound of Silence”
So when I wrote that scene, I incorporated my neurologist–the Paul Simon doppelganger, and his song titles into the chapter. I wanted to blend emotions for the reader. I wanted to let the reader know it’s okay to laugh. For me, the scene validated humor as a survival skill. It also made me realize, both as a writer and a human, that I was the flawed yet funny hero my story needed.
Nine years later, my worst day is a source of strength.
I celebrate the MRI, the diagnosis, and Paul Simon because those things changed the trajectory of my life in deep, profound ways.
Yes, as eloquently as I can put it, my worst day sucked. And yes, I now realize a picture can change your life. I also realize if we embrace our worst day, we can learn from it. Appreciate it. Instead of dreading it’s arrival, look forward to it. And if we could celebrate our worst day, the rest of our days will be, well, cake.
My worst day gifted me strength and perspective I didn’t know I possessed. How it gave me the courage and urgency needed to write. To be the flawed yet funny hero in my own story.
Plus, my worst day has given me a good reason to eat cake.
What has your worst day taught you?
Celebrating my worst day with you has become a tradition around here. One of my favorite Write on Fight on moments was when my friend and fellow writer Deb Dauer, who at the time was battling ALS ,read my 2016 post, Happy Diagnosis-versary, which inspired her to write about her diagnosis-versary and make the greatest cake I’ve ever seen.
Meg McNally, like me, was a high school English teacher before she was diagnosed with an aggressive brain disease, Spinocerebellar Ataxia–Type 1. A mother of three children, Meg now writes a successful blog, eSCApingtype1.com, about her experiences in her new life.
As part of my current virtual-book tour, check out my recent interview with Literary Gold. And while you’re there, enter for a chance to win a $10 Amazon Gift Card!
A few months ago, with low expectations, I 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!
The award ceremony is in November and is at Hilton Blue Lagoon in Miami, Florida.
It was totally unexpected. I’m totally honored. And I totally can’t wait for my kids to question my parenting skills so that I can gently remind them I wrote a Gold Medal winning parenting book.
Last Week’s Post: “I don’t want to be unhappy.”: An Interview with Jay Armstrong
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 I believe, ultimately leads to unhappiness. And I don’t want to be unhappy.
Quote of the Week:
If you would like to share something with others (a photo, a poem, a song, a quote, etc.) that tosses some positive vibes into the world, please send your suggestions to me at firstname.lastname@example.org. Thanks!
Are you a reader? Looking for your next good book to read or listen to? Check out my new page “Jay’s Book Shelf” for some book recommendations.
Here’s what I’m currently reading: Teacher Man by Frank McCourt
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Jay Armstrong is a writer, speaker, former high school English teacher, 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