Effort 32 – One Final Look Back

I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly.  How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.

This is Effort Number 32…

I spent a lot of time over this series of efforts looking into the past. It’s something I don’t want to do anymore, at least not now. I want to talk about how I am shaping the next act in the tale, Never Stop… Never Quit… – The Story of One Man’s Fight.

[Catchy.]

Thanks.

As a necessary evil, I will capitulate one last look back before focus shifts towards my future.

$54,500.71 is our 2019 total, a combination of Eleanor’s Bike MS fundraising efforts and money donated/raised directly by NEVER STOP NEVER QUIT for the MS Gala. Combine those numbers with the 15 other riders on Team Amulet, and our grand total raised for the National MS Society’s Oregon Chapter in 2019 was $83,608.71! The MS Society’s fiscal year ended on September 30 — those numbers are the final tally of an incredible year. My heartfelt thanks go out to every donor, supporter, and volunteer who helped make our success unforgettable.

I will spend more time thanking everyone over the next few months. Your efforts are making a difference. Directly, the money you helped raise is contributing to advancements in research and development of more effective MS treatments, improved care management for those fighting the disease, and bettered our work as we aim to move forward towards a world free of MS.

The “official” numbers have not yet been posted, but ours will not change. I wanted to grasp this opportunity to brag about our success and say thank you. The wins recorded are doing more than benefiting the over 9400 people in Oregon and Southwest Washington fighting MS (nearly 1 million across the US and more than 2.3 million worldwide). Your support has directly aided my treatment, physically, mentally, and emotionally. Thank you.

I will continue to say thanks; I’ll draft and send out our annual thank you cards; I’ll send more books as a sign of appreciation. I remain weighted, however, by The Constant Noise of My Future I shared with you back in the Effort 18. I still firmly believe, “My future is unclear and unwritten. That’s OK.” The burning desire to share facets gaining clarity is too much to hold between only myself and my Inside Voice.

[It’s like you need to share things before their reality becomes apparent.]

I need to share things before their reality becomes apparent.

[It’s like you can’t plan anymore. It’s time to act.]

I can’t plan anymore. It’s time to act.

[It’s like you’re going to go insane if you keep on talking to yourself.]

Stop it!

[Sorry…]

Effort 33 and beyond is my future, sharpened by everything that happened to me, everything I experienced, everyone who shaped me. I want to talk about my plans, successes, and struggles – both now and tomorrow – yesterday is only a measuring stick.

What are the constant noises I hear today regarding my future? Suspense and uncertainty may make for great plot development in my next book, but it surely won’t work well if I try to talk about my life. Some of the areas they intend to cover in my next series of efforts include:

• The end of Team Amulet: after 18 years, with over $750,000 raised, I am folding the flag on Team Amulet. Next year, we ride with our new family – Team Road Kill!
• I’ll share my 2020 physical rehabilitation and development goals, including Angel’s Rest, Cycling, Tunnel2Towers, and so much more.
• My newest struggle – one I never saw coming.
• Wine, Beer, and bike MS will return in 2020, bigger and better than we have ever seen.
• If all goes well, I’ll be back in school this time next year. That, in itself, may make a great story.
• more…

Nothing changes, yet everything is different.

[Everything changes.]

True, that is the one unvarying constant.

[Stop it!]

Sorry…

I hope these stories will inspire you to join my fight to 2020.

Because it is a fight.

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 ride!

Please donate today: 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.

Effort 31 – Purgatory

I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly.  How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.

This is Effort Number 31…

The evening of October 5, 1999, was my sixth in purgatory; I did not yet realize the man I was on September 29th 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." https://drive.google.com/file/d/1LoNQlJXtNvZ9xnmaPnavcbIW6xU4zawl/view?usp=sharing

I’m proud to say this is the man I have become.

I already told you my story in “Effort 1 – Suicide.” October 6: I had my first MRI at a Korean hospital. The Army didn’t have much of a need for those facilities in-country. I was handed the results to bring back to my doctor at Seoul (2 1/2 hours from where I was based). As my driver was taking me to our camp, I read the dual Korean/English results, where the findings were “possible multiple sclerosis.” I was 27 years old, in command of an air cavalry troop overseas, all alone, and had absolutely no idea what multiple sclerosis was. It took six days to receive a diagnosis that for many MS patients often takes years. I was numb. I went back to our base at Camp Eagle and stared at the wall all night. The next day I drove to Seoul to meet with my neurologist.

20 years later. Everything is different, yet so much remains the same. The man I was indeed died on September 30th. Part of me woke from purgatory on October 6th, 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 6th 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.

[That’s a great story, Kevin, but you told everyone yesterday that October 7, 1999, is the date you first heard the words “multiple sclerosis.”]

I was wrong. I went back and read my file.

[Were you wrong then, or are you wrong now?]

Just give me this moment, will you please?

[Sure.]

Asshole.

I hope the stories will inspire your donation to my fight.

Because it is a fight.

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 ride!

Please donate today: 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.

Effort 30 – …the Storm

I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly.  How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.

This is Effort Number 30…

September 30, 1999.

It was a Thursday.

My first storm formed.

After quite a bit of deliberation with my not-quite-yet-formed inside voice, I decided to go to see my flight surgeon. I was a US Army Captain, in command of 135 soldiers in D Troop, 1/6 Cavalry Squadron (Camp Eagle, Wonju, South Korea). I was a pilot, flying the AH-64 Apache attack helicopter. I didn’t have time for this shit.

For a few months, I had had this tingling sensation in my fingertips and toes. It was kind of annoying, but I chose to ignore it since there seemed to be no effect at all. After a while, the tingling went up my right arm, up my neck, and into my head (literally and figuratively). I no longer felt comfortable flying — I had canceled my flight scheduled two days before. Even though I was sure to be grounded from flying for a few days, I had no other choice.

I went to see my doctor.

My medical records from that date noted a “complaint of ‘tingling in the hands and toes’ and feeling ‘like having a head rush’ which he finds difficult to describe in other words.” I’ve had that feeling for 20 years now – I know how to describe it. Did you ever lay on your arm uncomfortably, and remain in that position while it “fell asleep” on you? Back in 1999, if I were to pull my hand free just as the sensation came on, I would expect to feel a slight tingling. That’s what it felt like. (FYI: in 2019, you must keep your arm pinned until it is completely numb. The aftereffect, the sharp stinging you feel when finally moving the hand is what I feel every day.)

The conversation between two medical professionals did not go the way I wanted.

[You’re not a medical professional.]

That’s why I lost the argument.

After a review of my complaint, my medical records, and a physical exam, Seth sat down with me and talked about what he wanted to do next. In his opinion, I needed to go to Seoul and see one of the neurologists there. I thought the 2 1/2-hour trip was unnecessary; this was a circulation issue, not a nerve thing.

“Go see a neurologist. We can talk after that.”

“No.”

“Go see the neurologist.”

“No.”

I knew Seth even before he was my flight surgeon in Korea. We’re in the same company at West Point. I graduated a year ahead of him, so, of course, I knew more than he did – medical school or no medical school. Extend the conversation for a while, toss in a little Air Cav vocabulary, and you pretty much get the gist.

I was pissed off beyond belief that I had no control over what happens next.

Before my appointment early the next week, I would spend every day seething in frustration.

1: I was grounded now

2: I never got whatever medication I would need to fix my circulation issue

3: I had to drive into Seoul and meet with another doctor who is going to waste my time

It wouldn’t take very long for me to lose faith in the belief I had any control over my future at all – quite some time before I would fight to take my life back.

I hope the stories will inspire your donation to my fight.

Because it is a fight.

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 ride!

Please donate today: 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.

Effort 29 – The Calm…

I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly.  How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.

This is Effort Number 29…

Everyone with a chronic illness understands an experience I can only describe as “The Calm” in the course of their disease progression.

It’s that momentary pause before the elusive something happens. For just a moment, there is no more worsening of your condition; you may even feel a slight uptick over the last day/week/month; more often than not, there is nothing. In hindsight, it’s a serenity that frightens you to the core, for you know what comes next…

I recognize my Calm when all my constant noises quiet themselves. Not like my Cessation of the Constant Noise at the end of fundraising season, it’s when they all stop: The Loo, My Future, Profanity, Food, Moments, Song, and all the others I have not yet explored with you. Nothing floods my mind. Even when I recognize my current state, there’s nothing I can do to animate my thoughts. Sometimes, I fear what’s next, but that’s a passing effort. I don’t enjoy the moment. I’m not grateful for having time away from the noise — noise would have to exist, you’d have to acknowledge its absence, to feel the relief it is gone. It is indeed the most unusual sensation.

It was 20 years ago today when I first experienced my Calm. September 29, 1999. There was nothing for me to do that they except do nothing. I was in command of my air cavalry troop in Korea, but I don’t think my absence was noted. Our troop First Sergeant single-handedly managed all matters for our soldiers. Our Production Control Officer orchestrated all necessary aircraft maintenance tasks. I’m sure they were both relieved I stayed out of their business! I canceled my flight the day before, a byproduct of the worsening sensations I was experiencing, so there was no need for me to follow up and study for my readiness level progression.

September 29, 1999, is etched in my brain, but the only thing I can distinctly remember doing is a FOD Walk: Foreign Object Damage – you simply walk the flight line looking for and picking up anything (pebbles, screws, etc.) that could possibly be kicked up and strike an aircraft, or get sucked into its engines. I walk up and down the flight line dozens of times, roamed through the hangar, then back to my office. I was neither agitated nor at peace. I was calm.

It was a Wednesday.

My first storm formed the next day.

…to be continued.

I hope the stories will inspire your donation to my fight.

Because it is a fight.

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 ride!

Please donate today: 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.

Effort 28 – 28: A Dirty Little Secret

I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly.  How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.

This is Effort Number 28…

It did not take 27 stories to get to this point. In truth, it took 20 years.

Actually, the story began 47 years and 9 months ago. December 28 was the day I was born.

April 28 is the day Eleanor was born.

October 28 was the day we celebrated the birth of Monte!, our fearsome Jack Russell. Yes, his name does have an exclamation point at the end of it.

June 28 was the day I reported to West Point.

For so many other reasons, number 28 holds close to my heart. Tonight, September 28, is the 2019 Portland MS Gala. NEVER STOP NEVER QUIT is the advocate sponsor for the event. For all intents and purposes, my foundation is investing money in my sanity – desperate hopes to create another reason to hold the number 28 close.

September 28, 1999, I pulled myself off the flight schedule. The numbness and tingling were too intense and starting to affect my vision. I did not feel it was safe to pilot a helicopter. As the commander of an air cavalry troop station in South Korea, I had plenty to keep my mind occupied.

“If I don’t feel better in a couple of days,” I told myself, “I’ll go see the flight surgeon.”

It was a Tuesday.

Like I did back then, I hope to distract myself tonight.

…to be continued.

Listen, my friend, and I'll tell you a tale

of excitement and wonder that's sure not to fail

to amaze all the children, the big and the small.

It's the tale of the greatest number of all.

If you ask Eleanor, “What's the greatest of great?”,

her reply might surprise. She’ll reply: 28.

So why, you might ask, wouldn't it be

an easier number, like 1, 2, or 3?

Sure, they are faster to write, I'd agree.

28 is the sum of those numbers plus more,

adding 7 and 6, a 5, and a 4.

Even a zero can add to the plate

of the digits you’ll use and amass 28.

Maybe you'll say, “Well, an 8 or a 9

don't have a complaint, they should be just fine.

That crazy idea is yours, it's not mine.

“Such a number!”, you say, “Now how can that be?”

“Well, the story is rather complex now, you see.

It started way back, a long, long time ago

before I was born, before any would know

twenty-eight is a number with a tale like no other.

It's the birthday of Eleanor’s dad and her mother!

They are in different seasons but, just to be clear,

28 is our favorite time of the year!

I hope the stories will inspire your donation to my fight.

Because it is a fight.

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 ride!

Please donate today: 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.

Effort 27 – Just as Bad as I Expected

I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

I require more than 30 Efforts, less would create an unsubstantial portrait of the man who needs your support. 30 days is an unrealistic timeline — once discovered, neither accurate words nor the courage to write them, develop so quickly.  How many efforts will this take, and how much time will require to share them? I don’t know the answer, so I will just continue writing.

This is Effort Number 27…

I knew it was coming. According to my tracking, I was late by a few weeks. A normal assumption would be that I am getting better. My MS, however, is way too predictable. I recognized the ramp-up, starting a few days prior. There are a few preparations I can make, but nothing to hold onto or brace myself with.

It doesn't scare me anymore – I’m not surprised by its onset or overwhelmed by the rush. It just is…

Yesterday was a bad day.

I saw it coming.

Everyone with MS recognizes the precursors to their own symptoms. Mine are obvious.

[Obvious to you, that is.]

Yes. Obvious to me. I don’t think anyone noticed the changes.

Over the last week, I started to sleep just a little bit more…

Over the last week, my workout intensity was just a little bit less…

Over the last week, my appetite increased just a little bit more…

Looking back at my MS tracking, I can see the changes. The chart was unnecessary, however, for I already knew what was coming. I liken the scenario to cooking or preparing food. Since we’ve become close friends over the last 26 efforts, I’ll be frank. I liken the scenario to preparing a big shit sandwich I know I am going to have to eat soon. Everything just gets shittier and shittier, which is apropos for my pending sandwich.

Everything starts to slip, usually when I am at a peak point. I was this time, setting new high marks in my physical routine and starting my regimen with a personal trainer. Like I said before, I saw it coming.

I recognized the pattern even before signs first start to show. Three steps forward, one step back. Six steps forward, one step back. I think this time I was more like 10 steps forward, one step back. I attribute that to a strong diet and exercise program, a full plate of activities that challenge my mental acuity, and incredible connections with family and friends – decreasing my stress while strengthening my soul. Any doctor will tell me, “those are some of the key ingredients to a healthy, normal lifestyle.” MS just makes those ingredients more important — I guess you can say it makes the inevitable shit sandwich a little bit tastier!

I was happy to recognize how everything I have done prolonged my uptime or delayed my downtime – depending on how you want to look at it. I used to consider my condition kind of like the rolling tide: ebbs and flows at varying intensities but rather predictable intervals. My “ebbs” now are stronger than my “flows” tend to be, the duration until my body pulls back extended.

I was even able to delay my bad day just a bit longer when that pullback/slip/shit show first began. While the body is indeed a powerful mechanism, it hardly compares to the strength a sound mind and heart can have. A close bond, an intimate and personal connection, aided my body when I was not quite ready to have a bad day. “It’s coming and there’s nothing I can do about it,” I thought, “but just not yet.” We got to enjoy our moment.

Inevitably, misfortune arrives.

This is where “the fight is not over and it won’t be over until a cure is found” comes to play. I will continue to fight, and I will continue to demonstrate improvement. My MS will not quit, it will not stop. My reminder came yesterday when I was served my sandwich.

How did I react? Just as I prepared. I canceled my planned workout, ‘dialed in’ a really lazy blog post (was anyone really fooled by Effort 25.1?), stole some of Eleanor’s almond-crusted ice cream bars from the freezer (I replaced them), and treated myself to a fancy leftover dinner and some beer. I’m not sure what the best method is, but that was just about all I could do yesterday. I was in bed by 8:45.

My recovery was scheduled accordingly.

I know my MS. I can predict the pattern of my bad days: the ramp-up, onset, and the duration. The best part about almost 20 years of knowledge is the fact that I know what my body is capable of on bad day +1. I was not 100% today; I did take a big step back, but it’s still only one step. After about nine hours of sleep, I was raring to go. House chores (cleaning up all the mess I left from yesterday), writeups for Saturday’s Gala MS event, and intense session with my personal trainer, another random doctor’s appointment, crating of our UNBELIEVABLE WINE COLLECTION for auction at the Gala MS event on Saturday, writing-writing-writing, then lending my hand for some IT support. Throw in breakfast, lunch, and dinner and my day is back to normal.

No, my bad days no longer frighten me. The anxiety I hold onto is my realization that someday, for some as-yet-unexperienced reason, an unexpected bad day will scare the hell out of me.

I hope the stories will inspire your donation to my fight.

Because it is a fight.

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 ride!

Please donate today: 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.