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.

Effort 25.1 – Weighted by One Word

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 a revisit to Effort Number 25…

Doubt surrounds my decision to post this story. What remains unclear is my answer to the question, “Is this the appropriate setting to talk about my connection to that one word?” Maybe if my story contains ample beauty there will no longer be a need to long for it again.

I was headed into the gym this morning when a flood of memories overtook my thoughts. They were of every instance I have ever used that four-letter word – a word so compelling that it alone has sufficient power to subdue the constant noises I’ve tried to describe.

Not until I sat down to share my thoughts did the realization strike as to why I was thinking about the word at all…

It would be a laughable understatement to call myself naïve the first time I used that word. I was young and swept away with romantic images of instant remedies for the mind, heart, and body – truly the core of where my soul was supposed to exist. When the word failed to blossom, we parted ways and I never gave it another thought.

I have used that word so many times in my life, it is impossible to count individual instances. The context of each utterance, however, to whom and why I chose to use the word again, is clear. Ten unique times in my life has the situation called for cure; five times the word proved insufferable; there are four instances where the claim still reigns viable; for the final – I just don’t know. It’s doubtful I will ever find the truth.

I’m not afraid of the word cure. I love to use it freely in everyday conversation, as a joke with my friends or to lend help to a special cause. Only in the framework of those four, possibly five situations will I pause and think. I finally made my way over to my desk, the site where I reside in quiet solitude, trying to give voice to my thoughts. 219 other words into a story intended to describe my passions towards the term cure, I realized why it was on my mind. I wanted to use the word again but worried if my cries have been exhausted.

If cure becomes my wolf, I may never realize if it ever truly existed at all. What becomes of me if – through my own trials, abuses, and shortcomings – I realize the word exists but will never feel the embrace of her passionate grip for myself? What if cure never existed at all?

Only when I look into my daughter’s eyes do I realize it does not matter if the word cure contains substance in that fifth form. Nor does it matter if there will be more to follow. If my efforts fail to satisfy, I will still be in complete fulfillment of the man I hoped to be before I knew any significance to the word cure.

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 26 – Cessation of the Constant Noise

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 26…

I had a heated argument today. It went something like this:

I’m done.

[No, you’re not.]

I sent out my last fundraising email today.

[Do you mean your last annoying, badgering, nagging fundraising email?]

You’re an ass.

[That may be true, but you still not done yet.]

The annoying part is he was right. Well, I was right. He, meaning me, my inside voice, was, is — whatever…

With about a week left in our fundraising season, there is not much more direct outreach I can do. Between on- and off-line money received, we are sitting at about $32,000 for our bike MS campaign. That is an amazing number! Add the $15,000 donated by NEVER STOP NEVER QUIT to the MS Gala, and we’re looking at $47,000 so far.

So, yes, in a sense I am done. My direct email messages, social media outreaches, and personal pleas come to a halt — I’ve surely reached a thankful point for anyone who I’m connected to digitally. One Constant Noise comes to a rest, for now.

What can you do?

Three words: DONATE — SHARE — COMMENT

Donate:If you have not had a chance yet, this is my appeal to be part of the 2019 bike MS fundraising support. Incredible generosity got us this far.

• Average donation: $141

How far can we go if everyone I reach donated $141? Heck, $100, $50, $25, $10 – they’re all needed and cherished just as much. I sent signed copies of my books to each of our high-level donors (over $300), but every donation will receive a thank you from me. I do have some friends who keep of all the bike MS thank you cards on their fridge (http://neverstopneverquit.com/thanks/cards/). It really does warm my heart!

Share: I cannot do this myself, nor has that ever been the intent. Your generosity can have an exponential increase just by sharing my messages to ride your network of friends, family, and colleagues. Forwarding messages, sharing on Facebook or LinkedIn, or sending them one of my links. Every effort opens the floodgates that much more than they were before.

Comment: I’d love to hear from you. What do you like? What do you want to see more of from me? What can I do differently to gain and retain your support?

There is so much more we can do. Everything starts with those three words: DONATE — SHARE — COMMENT.

What’s next?

For me, my appeal continues through these Efforts. I committed at least four more, but it’s doubtful I’ll be able to stop there. I’ll wrap up the issues fundraising and then close it out with a barrage of answers to the “What’s next?” question I’ve been pondering for myself. So many changes in the next chapter, but we can’t get there until we close out this one.

The other next is the final push and focus on the MS Gala this Saturday, here in Portland. NEVER STOP NEVER QUIT has secured the best collection of wines in our 10 years of collecting wines for fundraising. 90 bottles and three tastings, custom crated with a retail value of over $5000, will be up for auction at the premier MS event put on by the Oregon Chapter of the National MS Society.

There are so many stories clamoring in my head, it’s difficult sometimes to focus on my priorities. This post is my attempt to do so.

• Priority 1: DONATE — SHARE — COMMENT
• Priority 2: 30 Efforts, and then some
• Priority 3: MS Gala
• Priority 4: What’s next?

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.