Yep, it’s true. I wrote a book.
What? Like it’s hard? Lol! 😂
Seriously though, most of you know musical theatre has been my decades long career so why am I talking about being an author? Well, gather round gentle readers and I’ll share the story. It all began in the little town of Davenport…
Stomping Ground
It was an inevitable and accepted fact that one day my rare, incurable disease, CIDP, would take me down without remorse and make it impossible to walk, drive, dress or dance ever again.
However, from 2013 when it first presented itself through full diagnosis in 2015 until right before the COVID-19 pandemic in 2020, I fought against the rage that was slowly but consistently taking over my muscles, consuming my nerves, altering my speech, and dissolving my mental state of mind.
Even after I lost all the nerves and feeling in both my feet, resulting in drop feet, I learned how to ‘stomp’ the ground just to know where I was spatially. This stomping method allowed me to continue to teach dance and choreograph musicals for five more years after diagnosis. And sometimes look like a drunken orangutan!
Wake Up Call – Can You Hear Me Now?
The pandemic and the two years that followed put a crushing blow on my career and my entire life. When our country went into pandemic lock down and I paused all my work, I finally realized just how sick I really was. To add insult to injury, not one but two spinal reconstructions happened out of nowhere in 2021 and 2022, due to long-term use of Prednisone dissolving my actual spine. These immense and dangerous surgeries would finally shut the door and twist the key in the lock to end everything I loved about my life.
When you loose your life and everything you ever worked for in the way I did, the real tragedy is: you’re still alive. Now what?
Standing on the Corner of Fucked and Fucked
Good question. Now what? I won’t recount every last detail from 2021 to 2025 but suffice it to say, as the pandemic proceeded, I was sucked into a black storm of confusion and depression that bore down on me every day. If I wasn’t distracted by a long phone call from a loved one or spilling my beer on an ECV scooter at Universal Studios Orlando, the storm was there. It would surround everything I was trying to do to get rid of it, bashing my thoughts against the rocks, swallowing every effort down below its black waters.
Yes. I entered a period where suicide became a thought more than several times. I’m not proud of that. I was such a strong, resourceful man. Until I wasn’t. My neurologist finally intervened. Don’t ever be afraid to reach out.
988 – Suicide and Crisis Lifeline. Call or text.
Unseen Wisdom
So many levels of recovery must happen on the road to surviving a lifetime chronic disease. But the one that would not let go of me was purpose.
We all need a purpose in life to feel we are contributing to society, to our family, to ourselves. Having no purpose is like plunging down a pitch black, bottomless hole in the ground. You swear there must be rocky earth you’re about to slam into any minute. That actually would have been great, but fuck, no. Endless falling. And falling. And falling.
Supernova
Then in June 2022, through the physical destruction and mental exhaustion of the last three years, a beam of light exploded, rocking my entire being. A powerful epiphany I needed more than anything materialized out of nowhere:
“You are a born storyteller. You’ve told stories for decades on the stage. Why not the page?”
At first, I was frightened. The kind of in-the-pit-of your stomach-I’m-gonna-puke frightened as if I were at my first theatre audition. I couldn’t do this. What was I thinking? Then Abel, my partner, nailed it in for me with his simplistic words:
“If anyone can do this, you can.”
A man of few words but always powerful when he does pipe up. I suddenly was filled with a determination that got me happily out of bed every morning!
Commitment
Thus, on July 7, 2022, I proclaimed to myself, Abel and the Universe that I was going to be an author. Just like that, my feet hit the ground, the rain halted and the clouds began to part. I haven’t stopped writing since.
The road to becoming a writer, I learned, truly has no clear road map but I made one promise that I believe made all the difference: I would not put pen to my stories until I studied how to be a writer for six months.
I created a daily curriculum, 8am-4pm, five days a week and stuck to it. I mostly learned how to write from the many books on the subject by the incredible author, James Scott Bell. I credit him to this day for the skills and courage he taught me that would allow me to lay pen to paper with confidence.
I started by writing horror; one of my many obsessions. And I made a promise that I would do everything to not write the cookie cutter horror that has sadly permeated our entertainment industry today (Sorry. Truth.) I began with two separate novels but soon backed down to short stories. It was not so daunting and finishing a short story in a condensed time frame brought a sense of completion (until Abel started editing, lol!).
As I wrote the first three short stories, I realized each story was taking place on a holiday. Unintentional but so cool! I decided to outline an anthology of dark, twisted, seasonal holiday horror tales. Eight of twelve stories are now complete and three of those tales have been published online in literary magazines. My Christmas horror story even won “Best Long Fiction of 2023” with Alphelion Magazine! Who knew?
Hairpin Curve Ahead
So there I am, chugging along through the scary world of horror, when I heard it. Small, quiet but definitely there. An unexpected voice in my head.
It was telling me to write the survival story of the last twelve years of my life.
Oh, fuck, no!
This was 100% not what I wanted to use my storytelling for. Not only did this voice feel disruptive to the horror train I was plowing ahead with but I swore when all this author stuff started, I would not write about myself. Ever. With all due respect to other authors, writing about your life seemed so self-indulgent and egotistical to me. I wanted no part of it. I worked hard to shut down the tiny, annoying voice.
And the harder I tried, the more it kept showing up. Louder and Louder. Little snippets of medical moments, full scenes of chaotic confusion and then the thing that changed it all. A full-blown outline.
In theatre, I had several rules when directing a show. One of them was: don’t just work, stop to listen. Hear your inner voice when making choices. That voice will be right almost 99% of the time. Awww, dammit!
Down went the horror and I turned the page to spit out the outline in my head onto paper.
It may be one of the most important things I’ve ever done in my fifty-eight years of living.
Hot Mess
The outline flew onto the paper, almost as if it were already there and I just had to make the invisible ink appear by committing. Committing to writing the story of my life adventures that had turned my world upside down to this very day.
Just like the outline, the contents of each chapter splashed onto the page in way I almost couldn’t keep up with. It was exhilarating, exhausting and exponential. The more I wrote, the more kept coming. And stranger still – I realized I wanted people to read the story of my life.
There is power in telling a story like mine. I didn’t realize it until I released the book in its full draft manuscript to my first beta readers. Their responses to my story triggered healing conversations about their own stories!
Even though most of my beta readers did not have a rare, incurable disease like I did, they found that my words were gentle, transparent and, at times, raw enough that it resonated with their own issues on their journey through life. The book brought some of them clarity on their issues but for all the readers, they found the hidden joy in my adventures just as I experience every day.
Synopsis
It’s only fair at this point to share the title and what I hope will be the back cover of the book:
“Hot Mess: The Adventures of a CIDP Anomaly” is the touching, triumphant, and at times irreverent, true survival tale of Scott A. Cook and what happened to his life, his career and his purpose when a doctor sent him home to Google his rare, incurable neurological diagnosis of Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP).
Left standing on the corner of screwed and fucked, Scott begins his journey down the uncharted road of a rare, incurable disease, meeting friends along the winding path who help him in ways he never knew he needed. Armed with loving smiles and raw determination, they all learn life lessons only found in the misty mountains of the unknown as they search for a new normal that keeps changing from day to day.
Sometimes hysterical, sometimes poignant, always resilient, “Hot Mess: The Adventures of a CIDP Anomaly” is not only for all the CIDP Warriors out there kickin’ ass but for anyone who needs a good laugh, a moment of insight and a big shit shot of hope!
Non-Interview
My goal in writing this piece about my book was to not be a self-guided interview but some people do love a good back and forth so, without hesitation, here are six interview questions you might enjoy. You’re welcome!
What inspired you to write this particular book?
That fucking voice in my head that would not shut up!
What research did you conduct for this book?
My entire life, which by the way I promised to be transparent and honest about in the book. I believe I succeeded in that goal!
What was the most challenging scene or aspect of the book to write, and how did you overcome it?
The chapter about loosing long-time friends due to my disease. It was painful to have to revisit those moments but I realized lots of readers may be experiencing the same thing. I ultimately wanted them to know they weren’t alone.
What is your writing Kryptonite?
Music. Hands down. Movie scores. Inspirational background instrumentals. Anything that resonates with the emotions I am writing about at the moment.
What is your favorite childhood book?
“The Wizard of Oz”. Growing up on a farm, life was rather simple. Sometimes boring. “The Wizard of Oz” took me to another world with a character I connected with and opened my inner creativity a thousand fold. As a child, I read the first thirty books in the series, start to finish.
What do you hope readers will take away from your book?
Like the synopsis says: A good laugh, a moment of insight and a big shit shot of hope!
Full Steam Ahead
Thank you for caring enough to take a peek under the hood of my life and for following me down the road of authorship possibilities. My next step is to find a publisher, the right publisher, who will honor the story my book has to offer and find the joy in the tragedy that I continue to face every day. I’ve learned so much over the past two years since my pen hit the paper. I never knew this could all be possible but life is a never-ending smorgasbord of surprises. Never deny the feast. Especially if there is a fucking annoying voice telling you to eat!
PS: For more insight into the last twelve years of my life, please read my article I Didn’t Disappear – I Transformed.
Namaste,
Scott ❤️
