Saturday, March 13, 2021

Reconstructing and Defining Kevin Part Four: Reflect

Part Four: Reflect


In this backstory of Kevin Byrne’s life, I continue to struggle with the decision of how far back I want to go. While it can be mildly entertaining, maybe even cute, in a short blog to tell stories of little relevance, I doubt that readers would value them the same in this situation. I guess the answer is to write for now, filling these pages with stories possibly pertinent, and leave the editing worries for another day.

How much do we want to reveal is my other difficulty. For years, Kevin dreamed of sharing it is life story in a memoir, Never Stop… Never Quit…, but now might not be the time to venture so far. Is he ready and willing to share everything?

Kevin has already written much of our reflection. He shared some in his blogging and fundraising outreach messages, as well as a personal library filled with intimate secrets. The rest is data tracked, measured, quantified, then graded – everything in his life. Everything he considered important, of course. “I do little with the data at the time,” he says. “It is my crutch, keeping me busy and providing comfort as I obsess over organizing, updating, and calculating the same 35+ fields of input every day. My daily journals sure come in handy whenever I try to answer the questions, ‘What happened?’ and, ‘When did that happen?’”


October 6, 2019,  was Kevin’s 318th day of a self-described “autopilot” — he sat down and opened a Google Sheets document, MS Track, to review the data. It was Day #2,373 of tracking everything. He started tracking his MS on Monday, April 8, 2013.

(Blog post, Friday, April 5, 2013, Reality)

I am faced with some simple facts.


I am disabled, and that disability is worsening.  In the past, I would usually get by without “looking disabled” for whatever that is worth.  That’s not the case today.  The peaks and valleys are extreme.  On good days I can walk and talk with relative normalcy.  On bad days I can’t.  Brushing my teeth or getting out of a bathtub can become impossible tasks.  My slurring can be so bad I sound drunk at 10 in the morning.  My legs or arms will just stop working.  Those peaks and valleys can hit 5, 10, 15 times in a single day!  It can be exhausting to manage my limitations through prediction, preparing my surroundings, and explaining to others those awkward moments.


My medical treatment options have been nearly exhausted.  My body has rejected most active treatments to treat my MS and limit its progression.  I am on one remaining treatment currently on the market; the rest have led me to infections in my leg, kidneys, bladder, and spine as well as bouts of anaphylactic shock and meningitis.  Steroids no longer recover the increasing incremental damage done to my body.


This isn’t going away anytime soon, if ever.  It’s early April.  Normally I am starting my training cycle for the annual National MS Society BikeMS.  My focus is normally “how far can I push my body this year?”  This year my focus is on successfully walking, raising a glass to my lips, or picking my 3-year old daughter up.  I haven’t even started to grasp the issue of whether I can ride my trike, let alone how far.


I am faced with simple facts.  What comes next is neither easy nor clear.  How I move on from here will define everything that I am.


My life has been numb for the past several months, waiting for the resolution of “What’s Next?”

As we talked, Kevin laughed at the oversimplification. “There is no way I could’ve predicted the next six and a half years!

Here’s what happened leading up to that date.

“I remember November 22, 2018. Thanksgiving. Life could not get much better than on November 22, 2018. I had stumbled into a relationship once considered unimaginable. Fresh off yet another failed connection, our passion was unlike anything I ever experienced. It was so much more than the last passion, which was unlike anything… Well, you get the idea.”

Kevin’s mind was sharp, and his body was finally showing signs of much-needed strength and improvement. A new normal was paying off:

  • a healthy diet (dropping excess weight he had been chasing most of his life).
  • strong physical training (realizing performance levels lost for years).
  • still drinking a little too much (“but what the hell, everyone has a vice”).
  • a focused groove with his writing (we just started the first round of editing for Moments).

Then, 318 days of life happened.

“I always felt comfortable sharing anxieties, using my stories as examples of the devastating effects of multiple sclerosis. Blogging my dark secrets helped relieve my anxiety is a created link follow a sense of empathy with my readers.”

Putting the stories into words did relax his pain and fear. That false perception of relief, however, only lulled him into believing the exercise was a release from “my demons.” Merely a delaying factor, it was never quite as cathartic as he had hoped. Many of the scars formed were too much to overcome by simply posting words.

“In earlier relationships, I hid the truth about my demons because it was easier to set them aside without worry. Neither of us understood my struggles. In every relationship, I was unwilling to face them. By choosing to shelter those women from the truth, I doomed possibilities from the start.

“In later relationships, I shared myself in ways which were too embarrassing for them to be associated. My bravado contradicted rapidly diminishing physical, mental, and emotional strongholds.

“In this relationship, I shared realities too frightening for her to face. I was pointedly asked, ‘Promise me you’ll never think about suicide again.’ All I could say was, ‘That’s not a promise I can make.’ I was foolish and did not explain, nor did I seek to understand the gap in my response.”

(Blog post, Monday, August 26, 2019, Effort 1 – Suicide)

I told some of the story to a friend of mine recently. They asked me to say I would never do that, but it was a promise I could not make. That’s a vow I made to myself many years ago, when I was 43 years and 80 days old and staring into the face of my daughter. I made a promise to myself, and that’s where the conversation ended.

“My flippant attitude towards disability, loss, and drinking in excess was not a concern for me, but it was for her. All I offered was fun, nothing more. It would never be enough.”

  • That relationship failed.
  • Kevin found out the relationship was over.
  • A new relationship blossomed (“even more passion than the last”).
  • That relationship failed.
  • Kevin found out the relationship was over.

“My mind was beginning to dull. My new normal became a focused obsession. 4 to 6 hours a day in the gym because that was the only routine I had control over. 4 to 6 hours a night with a drink in front of me because there was nothing else to do. Maybe write a bit in the middle. Maybe eat something.”

There was no trigger to change. All the metrics Kevin had established were moving in the right direction. He looked great, smiled a lot more, even socialized just a bit. The new Kevin was doing well. He laughs and admits there was a sense of smug satisfaction when hearing comments like, “You look so skinny,” and, “You’re getting too thin!”

“I had never in my life had someone tell me I was too skinny. I’m pretty sure I never heard someone even tell me I was ever any version of skinny! I did not see it. For years, I wanted to lose weight, needed to lose weight, tried to lose weight. At 6’3”, I have always been a big guy – husky, big-boned, built, bulky, heavyset. It became a condition worsened by years of less than ideal diet and exercise. The lack of exercise and atrophy from my MS reduced muscle mass significantly, yet my weight continued to climb. At 255 pounds, I finally started to take control. Healthier meal choices, intense regular exercise, and disgust with the way I looked contributed to my changes. As I lost weight, I noticed the stark contrast between my left and right sides. The muscle loss and flabby skin only reinforced my efforts to work out more, push harder, and try to improve this fucking disastrous shape I was cursed with.”

NOTE TO EDITORS: somebody more competent than myself will need to dive into Kevin’s long list of issues peppering his story. Issue #1: Body Dysmorphia.

“On October 6, 2019, I stepped in front of the mirror while changing out of my sweaty workout clothes. The man standing before me was unrecognizable. I reached across my body with my right hand, grasping my upper left arm. My fingers wrapped around and nearly touched each other. I grabbed just under my left rib cage and was nearly able to reach completely behind the lower ribs. I stepped on the scale, then thought, ‘Maybe this is too thin.’ I had lost control; I really didn’t know what to do next.”

Revelations do not present themselves as a windfall, an avalanche of sudden knowledge. Valuable learnings often surface as a collection of short answers to simple curiosities. For Kevin, his curiosities began to boil on October 6, yet he was still ignorant of the underlying questions.

The date was not a coincidence; multiple sclerosis forced this issue 20 years prior. Retreating to this place of comfort, Kevin sat and wrote for his blog. Effort 31 – Purgatory shared the enormity of struggles on the 20th anniversary of his initial diagnosis with MS. He called it purgatory: a continual creation or refinement of distractions, searching for a state where such distractions no longer played a primary role in his life decisions.

(Blog post, Sunday, October 6, 2019, Effort 31 – Purgatory )

The evening of October 5, 1999, was my sixth in purgatory; I did not yet realize the man I was on September 29 had died.


To call that period in my life dark, the time between my first doctor’s appointment until I first heard the words multiple sclerosis, would be a gross mischaracterization. Darkness is only recognizable in the search for something – light, hope, knowledge, faith. I wasn’t looking. I didn’t know. Instead, the mistakes I learned all over those six days and nights helped carry me into a hole where years would pass before I realized how dark my world had become.


Purgatory was where I created or refined my distractions:

Work focus – not necessarily the “path to success” focus, but the areas I saw value for my soldiers and me

Vices – alcohol, sex, cigarettes (Army regulations prevented me from exploring more dangerous avenues)

Solitude – unless there was a need to satisfy the other two, I preferred nothing


I’m ashamed to admit how many years passed by before my distractions no longer played a primary role in my life decisions.

[That’s not true.]

You’re correct. That is not true.


I’m not ashamed to admit it; truthfully, I don’t know the proper time frame of each distraction. Cigarettes? 2004, with four distinct momentary lapses many years ago. Alcohol? 2019/2020, the jury is still out. Work focus, sex, solitude, even alcohol – is there a safe and healthy way to approach these distractions? If so, when did I reach that point? Did I reach that point yet? Will I ever reach that point?


I don’t blame any of my transgressions on multiple sclerosis. I alone am responsible for my actions. The only reason I share the story with you is to describe what became of my life the week after I died, yet before I realized it happened.


That was 20 years ago yesterday…


Instead of telling my story, I chose to spend the day with Eleanor. We spring-cleaned the house together. Yes, in October. We enjoyed breakfast and dinner at home, opting for our weekly meal out at lunchtime. We enjoyed our time together, and when bedtime came, I soothed my daughter to bed with our nightly ritual, “My Little Love."

20 years later. Everything is different, yet so much remains the same. The man I was indeed died on September 30. Part of me woke from purgatory on October 6, yet part of me is still there – the part that still does not understand what this disease is going to do to him. As for the rest? Take your pick: some version/circle of hell, damnation, redemption, salvation.


All of the above? None of the above? I don’t know. I’m no longer sure it matters. What I do know is that today is October 6 again. I’ve known I have multiple sclerosis for 20 years. After giving Ellie a hug and sending her off for the week with her mother, I burnt my body into the ground, for 2 1/2 hours, at the gym. After I post my story, I will fold some laundry, eat dinner, and get a good night’s rest. I will not stare at the wall all night. I will not surround myself with distractions. I will live with a hell of a lot more clarity and light then I did 20 years ago/10 years ago/5 years ago/yesterday. Tomorrow, I drive to the Portland VA hospital for my six-month Rituxan infusion and face whatever comes next.

“20 years separated, my life was upended one more time. I had no idea how to change, or what needed to change for that matter. I did my typical half-assed research and signed up for apps to track and monitor my diet and exercise.”


Sir William Osler - “The doctor who treats himself has a fool for a patient.”

Hippocrates - “If you are not your own doctor, you are a fool.”

Over 20-plus years, Kevin has developed hot/cold relationships with caregivers regarding his healthcare. Specialty clinics (physical therapists, dietitians, personal trainers, etc.) often have difficulty dealing with his considerations. “They will try to fit me into some cookie-cutter situation, pushing too hard or not enough, or just starting from scratch. I’ve had therapists tell me they don’t know how to treat my combination of ailments. One personal trainer even told me he could not build a better program than I created. It is often challenging to determine the best option for his unique set of criteria.

“Maybe I could find something more effective by blindly searching for months and months, but I had neither the time nor the patience for any of those options.” His stubborn personality usually resorts to falling back on the I can do it better myself mentality.

Fortunately, Kevin has a better relationship with his doctors. He trusts their medical opinion, which they rarely share without a healthy level of confidence. In turn, they trust his well-researched questions and preferences. Kevin has enjoyed many years of synchronicity with his medical team.

Problem-solving and decision-making methodologies typically begin with a clear definition or goal. Kevin had neither of those to use as a launch point. “To get better than I am is always my goal. To fix whatever’s broken was my objective. Beyond those lofty statements, I had no ultimate destination. I had no one to talk with since I was unable to articulate what I needed. Collecting more data was hopefully going to help. At a minimum, it was another distraction.” Kevin went to bed on October 6, 2019, with the most unusual feeling. Maybe it would be his Rituxan infusion. Perhaps his tracking would unearth something,  or his mountain of rituals already in place. Maybe something will work; maybe all of it; or, perhaps, a darkhorse not yet in the picture.

Kevin knew he was going to make something happen.

“I distinctly remember, and this part is true. I remember saying to myself, ‘I’ll give it a year.’”


The developing draft of my story will be shared on this secure drive location:


These are the thoughts going through my mind as I try to piece it all together…

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

100% of the royalties earned from my books go to the National MS Society, to support our fight:


Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

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


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