I first wrote this piece in 2018 as a preface to explain the logic behind my collection, The Ramblings of a Condemned Man. Four years later, as a new world began to take shape, I decided to dust off these digital pages and revisit my rationale for using the word.
“Chaos” is not a perfect choice, but it is the best explanation I can supply when I address the inevitable question, “What are you thinking?”
My life has always been rife with chaos. Some of the turmoil was inflicted on me — I am merely a victim. Other times, I have been guilty of instigating disarray. Of course, chaos is often a simple fact of nature. My most memorable moments occurred when all three energies combined. As to the correct proportions of responsibility, prudence would expect me to split much of the blame between nature and others. However, I can’t fault the darkened skies of nature for somber winter moods any more than I can blame her absence for summer drought. And, though others have been witnesses, partners, even agitators to my stupidity, I cannot lay blame on them for the chaos my mind wrestles with. I take ownership of it all.
I don’t believe my body experiences a greater share of hardship when compared to others. My mind, however, finds it challenging to see beyond the chaos, many times to the detriment of peace and beauty around me. Looking back on my life, images that most often come to mind are the chaotic, the horrific, and the truly burdensome. At some point in the past, my brain let go of many great recollections for some unknown reason. The memories that remain often play second fiddle to my demons.
In and of itself, confronting chaos is not bad. You can achieve a great deal of satisfaction by solving impossible challenges, overcoming overwhelming odds, or righting the wrongs around you; it’s the calling of every superhero. But, when or where does it end? At what point will our hero look beyond today’s villain, stop reminiscing over yesterday’s evil, and forgo anticipation of tomorrow’s plight?
It must be nice, taking off the cape to enjoy the win and rejoice in today’s treasures. But unfortunately, this freedom is not afforded to condemned men. My sentence is the recurring vision of chaos. The reality of my multiple sclerosis (MS) antagonizes turmoil already deep inside me. Twenty-three years later, I remain fascinated by the continuous thrashing my body has undertaken since my diagnosis. My mind constantly rattles its dedicated response to every emotion and fear I possess: “What’s next?”
I am indeed a condemned man, but not for the reasons you might assume. The chaos of my MS falls mainly into the last category: it is a simple fact of nature. I’m not a victim of my disease; MS is just another obstacle in life. Compared to other forms, one powerful difference with the chaos of MS is that an answer exists to the question, “When does it end?”
Writing is my way of soothing all forms of chaos, easing the daily wounds they inflict on my mind and body. I began this adventure in 2008, writing stories meant only for our unborn daughter. Ailish never joined her mother and me in this world. Weighted by grief, we experienced an agony once unimaginable to me. I wasn’t yet mature enough to simplify this emotion as chaos, but I was drawn to continue writing my thoughts, hopes, and dreams about life to someday share with someone. On August 28, 2010, Eleanor was born. I remember thinking, “I already have so much to tell you.” Everything I write in those pages is for her to read when she receives my journal, and it becomes hers.
Later in 2010, writing became a response to the increasing chaos caused by my MS. The blogs I still write are my way of expressing hope that someday there will be an answer to “When does it end?” By exposing everything to my readers through my blog and confronting chaos, I raise awareness in our fight against the devastating effects of multiple sclerosis. More importantly, the more I write about the chaos of my MS and share it with others, the more my fears lessen. The semi-biographical character named Kevin Byrne now carries the weight, not Kevin Byrne, the author. In 2017, I published My MS and E, a children’s picture book version of a recent blog post. It tells the story of how Ellie beautifully navigated my world MS during one magical trip that created moments so wonderful. There is no chaos in the world that could ever dampen those memories.
If writing helps me cope with my MS, why not apply it to other aspects of my life?
As it turns out, I was already doing that exact thing. In 2014, while Ellie spent the week at OMSI camp (Oregon Museum of Science and Industry), I spent that time in an East Portland internet café drafting the novella …in abeyance.
So, I went back and finalized the story with this new outlet of expression. The main character, Christopher Baxter, is a personification of the chaos I carried with me for far too long. Chris is who I am, was, wanted to be, feared, struggled to overcome, and so much more, wrapped up and scripted into an entirely fictional persona who lives in a fictional world (with a heavy smattering of historical context in this alternate reality). Placing the turmoil onto Chris’ shoulders relieved the burden from my own.
I began to write stories overflowing with the anxieties of my unrest. Sometimes an entire saga addressed just one struggle I faced. My favorites are those based on the utter confusion in my head that I can’t quite accurately describe any other way. Some stories are dark and gruesome; others express a more thoughtful perspective. Alternate realities became a surrogate for the chaos I could not otherwise express.
Regardless of why I wrote the stories, sharing my chaos this way helped me sleep a bit better. Maybe it discounted my fears. Perhaps it validated them. However, I hoped that my therapeutic benefit from writing paled compared to the enjoyment you receive from reading my tales.
I gathered some of my favorite stories and, through the NEVER STOP NEVER QUIT private foundation, published The Ramblings of a Condemned Man in 2018. They were the words I wrote or revisited to help me battle a harsh struggle with MS and personal chaos that lasted nearly two years.
In the blink of an eye, it was 2022.
I got a call last month regarding the progress of my MS. It was from the insurance company that handles my long-term disability; one of their actuaries determined that my disease is now considered “total, permanent, and irreversible.” I asked them why they deemed it permanent AND irreversible, rather than just one or the other. He didn’t understand the question.
The insurance company was my final holdout, still tracking how I progressed, hoping I would get better. Now, it’s unanimous.
In the four years since I first shared “Chaos,” my body has weakened, my muscles have atrophied. I deal with the constant pain of chronic neuropathy, torn muscles and tendons, bladder diverticula, scoliosis, and a host of other symptoms. I guess permanent was not sufficient to describe just how fucked I am — my condition is permanent AND irreversible.
In the four years since I first shared “Chaos,” I am happier and more at peace with life than I have been for many, many years (my brain lost track of that last moment).
Writing became a release for so much chaos it quickly became my drug of choice. I published …in abeyance as a separate novella, followed by Annie Flynn – first row, second desk. My first novel, Moments, and a short story collection, Triune, soon followed. I was writing away the constant noise of my chaos as quickly as it built. I continued to write and share. I battled back against my physical decline by increasing my hours in the gym. I continued to reverse the effects of poor diet and nutrition by dropping the excess weight my body could no longer handle. I looked better, felt better, sounded better.
But, like any euphoric drug, addiction has a dark side. “Just to make the pain go away” became my reason for living. Healthy beneficial activities are neither healthy nor beneficial when they become an obsessive focus. My writing suffered; my body began to feel the pain of overexertion; my weight dipped far below a healthy target. I replaced one set of chaos for another — if I do that long enough, they will both rise up and crush me. As everything worked so much better on the outside, my thoughts focused on, “I don’t want to live like this.”
In October 2019, I stopped trying to fix the broken in favor of building my life. When I thought my 17-month journey was complete, I began to share “Reconstructing and Defining Kevin” with my readers. Over the next four months, the real work began. I exposed flaws in my effort to repair “something broken” in my life. I was still searching for resolution; I continued looking for closure. I found neither.
There will never be a lasting resolution of my priorities. Each concern I hold dear will require attention and care for the rest of my life, more on some days than others. Nevertheless, I embraced my discovery and their connection to the Seven Dimensions of Wellness.
But that’s another story…
What Does This Mean for My Chaos?
Though it is still there, chaos no longer controls my life. I recognize my memories, fears, and anxieties as subconscious responses to my surroundings, yet they no longer trigger. Only through my capacity to monitor then positively regulate those responses in each dimension of existence can I profoundly affect my wellness.
What Does This Mean for My Writing?
I want to breathe life into pages far beyond anything I have accomplished to date, telling tales conjured up by my constant noise. No longer will I look to put words down solely to ease my anxieties. Instead, I will write stories because sometimes I smile as my mind floods with the images I create. I may laugh, cry, or even nod my head in approval of the tale. On other occasions, the crafted images chill me to the core. I want to elicit a bounty of reactions as I breathe life into stories, narratives, reflections, and rantings.
Rebuilding and Rebranding
I have begun the process of removing my published works from distribution. After cleanup and revision, I’ll re-release my titles through these channels:
· Books: My MS and E, …in abeyance, Annie Flynn – first row, second desk, and Moments, will republish. Publishing and distribution channels are still in negotiation. 100% of all royalties received will continue to NEVER STOP NEVER QUIT in support of our fight against the damaging effects of multiple sclerosis.
· Short Stories: the remainder of The Ramblings of a Condemned Man and Triune will publish for free on my blog site, https://neverstopneverquit.blogspot.com. I just want to share; If you enjoy the stories, please consider a donation to NEVER STOP NEVER QUIT.
On the Horizon
After these changes, my focus will revert to the stories that flood my mind.
· My short stories will continue. I have been busy sharing tales over the last few months. I have no plan to slow down.
· Sensations, my next novel, is tentatively planned for the end of ’22 or early ’23. More to follow.
· My journey, documented in the raw blog series, “Reconstructing and Defining Kevin,” is currently under revision and will gain new life as a piece I hope will help others as much as it guided me on this journey.
· I will continue to blog, sharing sometimes-too-much detail on my journey. There is so much in motion now; the days are not nearly long enough.
To those who think my disability is permanent AND irreversible, you may be correct. However, the thought doesn’t scare me. My writing is no longer an exercise based on anxiety, fear, and resistance.
I choose to focus on what my writing is — what it is for myself and what I hope it brings to the hearts and minds of my readers.
This is not about what my life will be like when the fight is over.
I will never stop
I will never quit
This is my story
Never Stop… Never Quit…®