2499

Maybe people will remember what I started 475 years earlier.

The first draft of this story was a stomach-churning look at my pathetic attempts to reconnect with my past while coming to grips with the frightening range of scenarios I see coming whenever I ponder my future. After dropping the last word, I didn’t want to read that mound of trash. Paying homage to Ernest Hemingway and Dan Gleason (see my footnotes), I gathered up my favorite quips and clicked the rest into the recycle bin.

The problem starts with my past.

How can I reflect on my past when I don’t remember most of it? Boxes in my garage hold degrees, plaques, awards, and other recognitions that pay homage to at least three successful careers. I’m just a vagrant squatting in an empty home, afraid to look at most mementos because I don’t know their real story. One plastic bin filled with old photographs, marking the celebrations of special events and capturing the warmth of everyday moments. I’m in many of those pictures; I probably took most others. We no longer wait days or weeks to get film developed for the thrill of sorting through bad shots and blurry images to find the few stuck in a box filled with soon-to-be-old photographs. I remember that wave of excitement, but not the few cherished keepsakes. Now, my computer is the crumbling cardboard container of unfiltered scenes I can’t recall.

A recent visit with lifelong friends gave me the chance to reminisce over shared memories while hopefully scratching out a few more. The all-too-common phrase “I don’t remember that” hijacked conversations with its stabbing reminder: Those are stories of the life you will never recall. Stop trying.

I can’t help it; I still make the attempts. Whenever an inconspicuous memory surfaces, like the first Little League home run I hit for Century Mirror and Glass, I smirk while replaying the snapshot. Those gems are rare, a reminder that shatters my smile while I stare into their history. Do I remember those moments because my mind filled that void with a creative story built upon old pictures, something others remember and told me the story, or my desperate need to hold something from the past?

More than a few broken slabs reflect my past mistakes and shattered innocence. Despite their disturbing cue, I treasure how my mind dredges them up without warning–welcoming that feeling because they prove I once existed.

During my rewrite, I repeated the question, “How can I face looking back?” The answer came to me as 2499, a token shaped by wild stories and broken slabs.

Marking yesterday is not enough. Why struggle to embrace days gone by when I can hardly stomach the fact that they are all I am? Their power is inconsequential compared to the mental thrust my hyperactive mind creates when it looks forward.

Did I ever look forward to something with the same eagerness as Rogue on this past December 24, when she struggled to sleep as promises of Christmas led a parade of emotions back-and-forth across her frontal cortex? Back-and-forth and back-and-forth. Was there ever a time for me when tomorrow held that same promise of delight? Perhaps I just went through the motions because my mind echoed: This is important. All I remember is my stupidity of screaming through each day with wild abandon and disregard for a future where I could never see myself. When I consider what my future holds, anxiety and enthusiasm battle for control of my emotions.

I started to think my next story should be Pollyanna and the Naysayer. I abandoned that approach in favor of 2499.

2499 is the solution to uproot my irrational fears, the perfect remedy for my very realistic nightmares. Living in the moment will simultaneously celebrate my past and future. In 2024, this quarter century of living with multiple sclerosis, I will take you back to 1999. Electrifying stories of adventure, intrigue, sex, and danger will animate those months multiple sclerosis spent churning just below my surface, preparing to erupt and overwhelm everything in its path. The fact that my memory is shit will force me to retell history with creative expression of the facts I can still piece together.

A World Without MS is the National MS Society’s current theme; their initiatives and fundraising efforts are geared toward that future. By 2499, multiple sclerosis will join smallpox and rinderpest on the list of diseases declared eradicated by the World Health Organization. Stories of my fight will be footnotes archived in the history of Notable Authors and Their Visions of Tomorrow! In 2024, I’ll share visions with my readers, crafting fiction that will make you smile, laugh, and shudder in fear at the possibilities as I shatter your preconceptions of what our future holds in store for us.

Stories I write this year will show on my interpretation of the past, while others invite you into my visions of the future with tales of fiction set in the year 2499.

Make no mistake, everything I do under this umbrella of 2499 will be selfish. I will address my demons in a very public display in the hopes that it might help me heal. Silent suffering has been a colossal failure. If my writings give you comfort, that’s even better. If they entertain, great. If not, my apologies, but that won’t change a thing. Every flashback I write, every tale of fiction I create, will follow with the incessant pounding of my pleas for donations in support of our fight against the devastating effects of multiple sclerosis.

After telling stories, both about my life before multiple sclerosis nearly destroyed me and after science turned the tables, we will celebrate our victories. I have a little more than nine months to plan and organize the biggest party (to date) for NEVER STOP NEVER QUIT: the 25th anniversary of the day I first heard the term “다발성 경화증 가능성” (possible multiple sclerosis).

It starts today.

 

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Notes

Ernest Hemingway: “The first draft of anything is shit.”

Dan Gleason: “If this were my movie, as soon as this guy says that, the woman next to him pulls out a wet mackerel and slaps him with it.”

September 29, 1899 – first doctor’s appointment

October 6, 1999 – first MRI, “possible multiple sclerosis”

…therefore, I am

…therefore, I am

(a continuation of Act IV, Scene I)

In my life, the early stages of Act II and Act III comprised the dissolution of who I was before attempting any opportunity to become the person I was to be.

[Remember your promise: “Unlike before, I will not destroy the foundation already set – my efforts to thrive cannot abandon life I love and cherish.”]

Exactly.

The reason I shared that commitment a few weeks ago was to establish the constant reminder – a token I shall carry with me as I trek, stumble, and eventually progress through this journey of attainment. Who I become, the man I will embrace, cannot dismiss even the slightest bit of his past.

Who I was became the bedrock of my being, a stage set for the people in my life. They were the connections to every shared experience. My experiences were the bases for every grain of knowledge and understanding. Understanding drove every action, intentional or otherwise. Every action determined who I was; the sum of who I was is who I am today.

[Your bedrock?]

My bedrock.

Who am I?

I am a father, a son, a brother, an uncle, a cousin… I am a family.

I am a friend, a lover, a sidekick and companion.

I’m a veteran, holding his wings and crossed sabers close to heart.

I’m a Defender, a member of the Long Gray Line.

I am retired, but still a business professional, author, and a man searching for his next career.

I’m an advocate, a mentor, a philanthropist, a voice.

I am an athlete, striving for more, working with what I have and where I am limited (just like every other athlete).

I’m a hack cook, experimenting to find the best combinations to meet every tasty nutrition goal.

I am so much — I will be even more tomorrow.

My actions, understanding, knowledge, experiences, the people in my life made me who I am.

I am a man fighting multiple sclerosis, a disease that consistently attacks and jeopardizes absolutely every physical aspect of my being. My disability is an experience, one that drove people into (and out of) my life as it became a major part of my experiences, knowledge, understanding, and actions.

It will continue to do so.

Multiple sclerosis is not my bedrock.

It is not “who I am” in any way.

It’s high time I stop giving it credit. I choose to share my passions, challenges, and achievements sought because of who I am rather than focusing solely on one specific experience.

[Promise me you will move on from here and stop obsessing over this point.]

I’ll move on from here and stop obsessing over this point.

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

http://main.nationalmssociety.org/goto/eleanor

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…^®

Kevin Byrne

Portland, OR

www.neverstopneverquit.com

www.neverstopneverquit.blogspot.com

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.

45 is the New 0

I despise clichés. I see them as an inaccurate way to marginalize topics of greater importance; my response is normally one of scorn or mockery.

It's always darkest before dawn

No, before dawn is BMNT (look it up).

That which does not kill us, makes us stronger

Sorry, Nietzsche, what doesn’t kill you can weaken, cripple, bankrupt, depress, or worse.

Whatever happens is God's will

My initial response was vulgar. To put it in terms appropriate for Ellie: please don’t say that about my God.

There is no cliché appropriate for my current predicament. ​My body is under siege; daily struggles are taking their toll. To be honest, I wasn’t sure if my final blog post of 2016 (Bike MS 2016 - Last Dance) was indeed my last dance. I lost the taste for writing about MS, for documenting continual loss of the existence I will hold dear even after memories fade. This is not the life I’m willing, able, or strong enough to endure; I despise this disease for forcing a fight.

Quantifying Loss

Visually, my slide began around four years ago, after release from the hospital (meningitis, a reaction from medication #3).

On April 8, 2013, I started Tracking my MS. It is a completely non-scientific protocol that highlights one area perfectly: the downward trend. My decline, though not significant day-to-day, has proven crippling after four years.

There are moments when I sit back and think of what I have lost:

• I can’t run anymore; walking any distance is difficult
• I can’t type on a keyboard, instead awkwardly dictating through a voice to text application
• I’m left-handed but I cannot write, nor can I shave, eat, dress, or brush my teeth in the ways I learned over the first 44 years of my life
• I have complete feeling and sensation on my left side, I’m just losing the ability to move and coordinate
• I have complete ability to move and coordinate my right side, but I have already lost most feeling and sensation
• I cough and choke dozens of times every day, as small portions of everything I eat and drink go into my lungs
• I fall, leading to cuts, bruises, and cracked ribs
• My voice ranges from garbled and slurred to inaudible (voice-to-text aggravation)
• Pain, spasms, edema, and atrophy are part of every day

What do I miss most of all? My pincer grip. The simple ability to grasp something between my thumb and index finger; I could do that with my left hand since I was about seven months old. I really do miss my pincer grip, for its absence makes so many simple tasks… well, difficult or impossible.

This story of loss isn’t shared with you to elicit pity or sorrow. I'm describing my mindset. I finally feel disabled. After 18 years of battles, hope, and clichés, I am coming to grips with the fact that this is my MS. While we fight to drive change through advocacy, professional education, and providing services to empower people with MS, my struggles will continue. While we raise funds to support cutting-edge research, research that will someday lead to a cure, my MS will worsen. Since you last saw me, my condition is worse; when you see me again, it will be worse still. I have little hope of improvement. Next year, next week, I try to envision life…

So, now what will I do?

The first of many questions, ‘So now what?’ is an absolutely frightening beginning for a man in search of answers. How bad will this get? Do you have the money and insurance to care for yourself? How about your family? How long can you hold on? How long should you have to?

I never imagined feeling tired and scared like this again.

Darkness Visible

Years ago, a good friend of mine shared with me this memoir, written by William Clark Styron. They discovered the book when in a time of personal struggle; I first read it in during rising action of my own trials. While it may be easy to succumb to fear, depression, and anxiety (as I nearly did in 2003), understanding the existence of alternate paths is a value I am unable to quantify. Any disease, any disorder, is a gateway into despair.

There was no “cause” to my depression; my MS was merely one, albeit a significant, aggravating factor. Ultimately, the parallels of my struggle and Styron’s were remarkable:

• Those “who kept admonishing me that suicide was ‘unacceptable’”.¹
• The discussion of “early sorrow—the death or disappearance of a parent...before or during puberty”² (my father lost his own struggle with depression to suicide in my youthful days).
• Ultimately, I embraced the singular truth, “depression is not the soul’s annihilation; men and women who have recovered from the disease—and they are countless—bear witness to what is probably its only saving grace: it is conquerable”.³

So, why discuss this beast I conquered more than 14 years ago? Styron writes, “…depression has the habit of recurrence. But most victims live through even these relapses, often coping better because they have become psychologically tuned by past experience to deal with the ogre. It is of great importance that those who are suffering a siege, perhaps for the first time, be told - be convinced, rather - that the illness will run its course and that they will pull through.”⁴

Recurrence seemed inevitable a few weeks ago. The severity of my disability and, what I saw as, the futility of fighting was confirmed again and again: long-term disability transition from work, the VA’s 100% ‘total and permanent’ classification of my condition, and Social Security disability processing, on the first attempt without any questions, were just a few of those things that threaten depression. Adding to that, my body continues to fail. I’m quite aware of the danger confronting me.

Knowing depression will unexpectedly strike when you’re least prepared, I picked up William Styron’s memoir once again for reassurance I will pull through. His words helped me shape my fear into a recognizable form. In those pages, I sat with the author and commiserated. I listened to his deepest moments, then shared my own inner thoughts, both before and now. I continued to read as he told me his story of recovery from that depressive state. I shared my own account, my own physical and emotional recovery which would return me to this amazing life I hold dear. Styron and I worked out quite a bit in that time; collectively, we mapped my plan to start.

So, here’s what I will do

Unwilling to boil my efforts down to stereotypical catchphrases, I’ve chosen to not start anew or start over. I'll just start: each day, each effort, etc. Sure, maybe there is no time like the present, but that will always be the case.

I’ll forgo the cliché: when the going gets tough, the tough get going.

I prefer my mantra: Never Stop… Never Quit…

My focus on medical exams and evaluations, disability paperwork, and benefit transitions are coming to an end. While nagging physical issues, new appointments, and ongoing paperwork will always be part of my routine, they are no longer at the forefront as of today.

I don’t have a Bucket List but I will maintain a Rolling List of activities and adventures I need to experience, for the first time or yet again, this time as a new me or with my family. There are so many places to go and so many things to see. This list will never be complete. I’m renewing my passport; my goal is to fill it up before the time comes to renew again. Brie and I are excited to show Eleanor so much; we’re passionate about new adventures together.

I will not travel because of my MS, nor will our explorations be in spite of my MS. No, my MS will just be there, hanging over me, slowing me down and threatening activities. I will curse my MS, tell it to “piss off” as I forge ahead, and live life when I forget, if only for a moment, I'm not limited by my MS.

I will participate in the fights my MS started. In August, I ride again with Team Amulet for BikeMS (15 years and counting). On Friday, April 14, I undergo my 2nd treatment of medication #7. That Saturday, I walk in Walk MS. My reason for walking this year is simple: I may not be able to next year.

I will project my voice in our community. I hope my lessons, learnings, and fights will support the mission of the MS Society in my role as a board member of the Oregon Chapter. My love and faith will hopefully continue to shape the young souls I teach on Sundays at church.

I will celebrate with others on their journeys: birthdays, graduations, weddings, retirement, your fight for your cause. Life can't be all about me or all about MS.

Finally, I'll write. My writing can't be all about me, or all about MS. Last year, I published My MS and E. Soon you'll see:

●     My Puppy and E

●     My Family and E

●     Air Pressure and E

●     28 and E

●     Imagination and E

●     ...and many other magical children's tales about growing up as a this amazing little girl.

I'll introduce you to Dominic Bandall and Chris Baxter as they face their own fantastic trials forged in my imagination.

Yes, some of my writing will also be about this fight. I’ll need to raise awareness. I'll need to raise money to fund more research. I'll need to vent. Every year, my outreach has a theme. This year, my stories will be the roller coaster of emotions with which I struggle: horrors of disease progression, its loss, debilitation, and the unknown; sparks of hope, some dashed while others still show promise; tales of unending strength, compassion, and support; stories of my dreams and fantasies in this fight against MS. I'll share examples of the benefit your support has already realized, and tales of why we need to do more.

It starts today

I awoke the morning of March 14th, my first day of long-term disability, and told myself, “It starts today”. New life, new focus. I fell (figuratively and literally). My frustrations mounted quickly: ailments, pain, medications, health care benefits, insurance. Life. March 15 - “it starts today”. 16, 17, 18… There were ups, there were downs. Life. I soon realized every day will require the same level of passion and promise. Every day, for the rest of my life, it starts today.

Hope for the best. Expect the worst. Be prepared for both.

It starts today

I guess there are some clichés appropriate for my current predicament!

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…^®

walk, April 15: main.nationalmssociety.org/goto/KBwalk17

 bike, August 4 – 6: main.nationalmssociety.org/goto/embk

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

1 Styron, William C. (2010). Darkness Visible: A Memoir of Madness [Kindle version] (l. 708). New York: open Road Integrated Media

2 ibid. l. 728

3 ibid. l. 771

4 ibid. l. 698

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.