Wednesday, June 22, 2016

Bike MS 2016 – Little Dreamer


I watch Eleanor and dream of running.  All I see is some figure poised at the ready.
I see visions of her sprinting as hard and as fast as one can. The only goal is more. Legs starting out crouched, muscles compressed as they wait to explode. There is that final moment when everything is calm. Quiet. Peaceful. Suddenly and violently, every muscle snaps in an organized fashion. One set of quadriceps extending, as the leg is brought forward into the air, then contracting, bringing its foot down to pavement, jettisoning my body forward even more. Every other muscle in the leg is working with one sole purpose: support that explosion. Toes and the ankle are constantly making minor adjustments to keep the body stable. Hamstrings and calves compress as an army of thigh muscles raise the leg in support of the quads’ next explosion.  Each set of muscles working opposite to the body’s other side, together in perfect unison with the frame. Left leg. Right leg. Left leg.

The rest of my muscles work towards the same goal of balancing and guiding, keeping this mass in sync with the rhythmic propulsion these legs are generating. The heart, diaphragm, and intercostal muscles all work together in their chest, pulling in oxygen to push the limits of every muscle.

Finally, she stops, but it will still be some time before the muscles can rest easy. Her heart still beats rapidly to feed the body more needed blood. Balance, guidance, and sync are still very much a priority. Long after all the other muscles calm, quadriceps still twitch. They’ll continue to do so until the whole body is finally at ease or until she gives them what they really want, which is to run again.

But she won’t do that now, nor will I, as there is nothing more left in us. At least not today.

I read somewhere that you are a writer if you can tell your story; you’re a good writer if you can tell someone else’s; a great writer can make the reader feel a story that never existed before. There is also the time those three worlds come together. The reader can’t tell whose reality this is. Neither can the writer.

As I watch Eleanor, I know this dream isn’t an image of her. She is an amazing little girl, but she is also just six years old. That fire, that focus, isn’t there yet. There’s still too much in the world to see to waste time with such a fixation.

Nor is this story mine. I don’t remember what it feels like to run. I’ve seen pictures and videos of me, but those images remain foreign. As I’m barely able to stand up straight and walk, I can’t remember what those muscles felt like during that contraction and explosion. With the constant numbness, tingling, and spasms, imagining those muscles twitching in anticipation of another round is beyond me.

I can only dream… and wait… and pray.

This scene I’m visioning belongs to no one in particular. My dream is someday Ellie and I will make this ours together. She’ll get there. Her gross motor function continues to develop at an alarming pace. If we are going to run together like that again, all the work is on me.

The last time Eleanor and I raced was March 1, 2014. We were on a trip to Disneyland with family friends. After a long, fun day in the park, we paused for a moment to rest our legs and refill our bellies. Everyone was in fine spirits as we walked back to the park entrance. Though already weakened by the onslaught of secondary progressive MS, my legs felt surprisingly good that afternoon. As we continued to walk, giggling and laughing, Ellie surprised me by blurting out, “ONE, TWO, THREE, GO!” She took off and, purely on instinct, I ran after her. The race only lasted about 50 feet, or so, but I’m proud to say I smoked that kid.  I probably beat her by at least two strides! Ellie doesn’t like to lose, especially to her Daddy on his lumbering legs. She broke down crying.  All I could say was, “Hey! It’s okay. Daddy just felt strong for a bit. That’s a good thing. Besides, I did look pretty good out there, huh? Right, Brie? Pre-tt-y darn good!” Ellie smiled and all was right in the world again.

Since that day, Eleanor has developed faster and stronger. I have grown slower and weaker. My mind still holds out for that day we race again.

For both Eleanor and me, that’s our dream.  I want to win.  She wants to see me try.

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…®
Kevin Byrne
Portland, OR
* Inspiration: Van Halen, “Little Dreamer”, Warner Bros., 1978

For the full selection of Ellie's 2016 BikeMS mix, go to:

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

Friday, June 10, 2016

Bike MS 2016 - Stand By You

“Did that hurt, Daddy?”
“Yeah, that one hurt a bit.”
I stated a fact there was no possibility of hiding, as I was already outed by the grimacing look on my face.

“I’m sorry” was Ellie’s subdued response as she slowly withdrew the syringe from my leg.
“It’s not your fault at all, Sweetie! Some just shots hurt more than others. It’s how the needle goes in through the skin, that’s all. What you did was perfect! You did another awesome job.”

“Cause I’m your little nursemaid!”

I watched how Ellie wanted to reach in for a hug so badly and I marveled at her restraint. She knows, no hugs yet, not until she’s finished. Clip and dispose of the needle. Put a bandage on my leg. Clean up all trash. Break down and put away the injector kit. One final sweep of the area. Wash hands. Then hugs!

My little nursemaid has assumed a new title in our home: caregiver.

Curiosity comes in steady streams for any six-year-old. Children of the chronically ill add another dimension to a world of already fascinating wonderments to see: medication. Early on, my goal was to relieve Ellie’s curiosity and subdue any impulse to explore my medications on her own. I welcomed her anytime I filled medicine bins or took my shots, explaining in as much detail as I could articulate and answering every question as honestly as possible.

“Why do you have so much medicine?”
“Well, I have a lot of different needs.”
I went on to explain the purpose of each medicine and supplement, the dosing differences, and the tracking I use throughout the day.

“Will they get you better?”
“Right now, there isn’t anything that will make me better. Some, like this one here, help ease my symptoms so I can walk and move a bit better. But, no, there’s yet nothing to completely heal me. That’s why Mommy and Daddy do all that stuff to support more research.”

“Like Bike MS?”
“That’s right, like Bike MS.”

“Will you die without your medicine?”
“I could get worse if I don’t take them, or if I take the wrong amounts. I need to be careful. That’s a big reason why you have your medicines and I have mine. We never take each other’s medicine, and we only take the amounts the doctor tells us to.”
Ellie remembers every lesson. She’s eager to ‘educate’ others with her vast knowledge of medicine’s efficacy and safety protocols.

My objective was successful: Ellie understands the diligence needed around medication. She’s not curious about touching or tasting any of them, and she knows the dangers associated with all drugs. Eleanor developed understanding and a strong respect for my medications.

But My Little Love soon developed an even greater quality: compassion.

She wanted to help me fill my pill dispensers, so we do it together. I count out the weekly dosing, Ellie fills the bins. Two of the big yellow pills in every bin; two of the little pink ones in the evenings; one of the little round ones in the mornings; and so on. Eventually, colors and shapes gave way to names and dosages.

“Why is the fish oil a 1,000 milligram pill but the Baclofen only 10 milligrams? They’re just about the same size?”
“The dosage just tells you how much medicine is in there. Some just have more filler, to help help you digest them easier.”

Curiosity was the precursor to her desire to “help make Daddy better”. We still do everything together, but her “helping me out” quickly gave way to actually helping me out! Her dexterous fingers work so much quicker than my numb,   feeble digits. With so many combinations of pills, two sets of eyes are always better than one. Every week, in every way, Ellie helps make me better.

I have been self-injecting medicines since my diagnosis in 1999, with my shot total now in the thousands. When I was first diagnosed, I was approved to remain stationed overseas in Korea. The Army ordered my medicine. When it arrived at the Yongsan Army Garrison hospital in Seoul, I took a 3-hour drive from my base camp. There, the medical team gave me a 6-month supply of Avonex and a videotape on how to inject myself. From Day 1 (December 3, 1999) until May 8, 2016 no one but me has ever given me one of my injections. Together, we slowly we broke that barrier.

Ellie started by watching my give my injection, always curious.

“Why do you wipe your leg like that?”
“It’s an antiseptic wipe, to clean any germs off my leg that could cause an infection.”

“What do you do with that thingy?”
“It’s an injector gun. It’s makes it easier and less painful to take the shot by pushing the needle in straight and swift. It still hurts, but not as much or for as long.”

 “Can I wipe your leg?”

After weeks of careful observation, Ellie jumped into the caregiver role. Over the next few injections, that role increased.

“Can I charge the gun?”

 “Do you always take the shot in your leg?”
“No. You just need to take it in a large muscle area. Sometimes I take it in my butt.”
“You said butt!”
We both chuckled a bit on that one. Butt.

Ellie’s diligence and care grew with every injection, taking on more and more responsibility with each new shot.

“Can I press the button (on the injector)?” ~May 8th

 “Can I clip the needle?”
For safety and convenience, my used needles are disposed of using a eedle lipping & storage device.

Eleanor is truly a caregiver in every sense of the term:
* From her tracking of my regimen: “Daddy, today is shot day.”
* To her management of my medicines: “Daddy, you are almost out of your Ampyra. You need to get more.”
* To her assistance: “Daddy, I can do that. Just let me get a band aid first, then I will clean it all up.”
* To her emotional support: “Daddy, I love you and I want you to get healthy. Thank you for taking your medicine!“

Caregivers play a role of immeasurable value, often at a personal cost best described as “not fair”. The VA healthcare system recognizes the value Family Caregivers provide to veterans (, compiling information on a variety of topics related to being a caregiver, as well the support and assistance they need to care for their loved one and themselves. I may have to push for an amendment there, as recognition and reward of the littlest caregivers desperately needs to be added to the list!

There are a lot of emotions surfacing as I write this story.  Thanks is at the forefront of them all. Thanks for having a daughter who holds such an amazing capacity for compassion, care, safety, and focus. I don’t know what Brie and I did to deserve such a treasure, but we sure do value our gift! Emotions of pride, wonderment, entertainment, and appreciation fill me every time we share our special moments.

My greatest moment of pride and appreciation came on a day when I did nothing at all.
“Daddy, is today shot day?”
“Yes, it is.”
“Can I get the shot for you?”
“Ellie, how about this. How about you do everything today?”
Eyes wide open, “Everything? Yeah. I can do that.”
“Daddy, I’m ready. Where are you taking the shot today?”
“In the butt”
“Hee Hee! You said ‘in the butt’!”

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…®
Kevin Byrne
Portland, OR
* Inspiration: Rachel Platten, “Stand By You”, Columbia, 2015
I'll be your eyes 'til yours can shine
And I'll be your arms, I'll be your steady satellite
And when you can't rise, well, I'll crawl with you on hands and knees
'Cause I... I'm gonna stand by you

For the full selection of Ellie's 2016 BikeMS mix, go to:

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

Sunday, June 5, 2016

Bike MS 2016 - Shut Up and Dance


This adorable six-year-old girl is the only reason I can possibly think of as to why I’d ever change my mantra. The simple truth is SHE is why I fight. More accurately stated, Eleanor is a constant reminder of everything I hold dear. Through my darkest days when, to borrow a phrase familiar to my West Point family, “hope becomes forlorn", Eleanor is my rallying point. She reminds me of what I need to do: fight.

Please accept my loving apologies, Brie.  In am sorry if this disappoints you, Mom.  Eleanor’s influence is more powerful than any other woman’s hold on me. She is beautifully comfortable in worlds where I am her Daddy and idol, where we struggle together through emotional growing pains, where she is my compassionate caregiver, and in the days where we are truly two peas in a pod!

As we move into this year’s Bike MS season, I’ll use my blog as a podium from which I will shout her praises, hopefully offering some insight into the impact My Little Love has on my survival.

As I did for the 2015 season, the themes of my stories come from the music chosen for my ride.  This year’s playlist belongs as much to Eleanor as it does me.  Every song is reviewed and enjoyed by us both yet approved solely by her. Some choices may be obvious; others have the most obscure rationale behind them.  My stories may help explain why you may hear me rock out on the road to Pitch Perfect’s “Run the World (Girls)” one mile, then abruptly mix into the 82nd Airborne Chorus’ “Blood Upon the Riser”.  Then again, they may not…

Please join me for this 2016 Bike MS adventure.  Listen along as our choices grow (the mix is a work in process).  Enjoy the sounds and emotions Eleanor and I celebrate with daily.

Without further ado, in tune with the ever-looming demand from Ellie, Shut Up and Dance!

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…®
Kevin Byrne
Portland, OR

* Inspiration: WALK THE MOON, "Shut Up And Dance", RCA, 2014
Ellie definitely take my arm and leads me through some tough struggles.  Listen to this song, every line and every emotion, and try to capture a glimpse of my adoration, infatuation, and love for this girl.

For the full selection of Ellie's 2016 BikeMS mix, go to:

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