For 30 days, 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.
This is Effort Number 16…
There are very few things I do
solely because I was diagnosed with multiple sclerosis, even fewer are deeds I
am proud to claim as accomplishments.
If not for my multiple
sclerosis, I would never have become a writer. For that fact, I would like to
send my sincere thanks to MS.
***
[You are very welcome.]
You are not MS, Inside Voice.
You’re my inside voice.
[Sorry. I was just playing my
part. My ying to your yang.]
It’s not your part. You’re not
my ying…
[I’ll just shut up and let you
tell a story.]
Thanks.
***
I was originally going to
title this blog post “The Constant Noise of Words” or “the Constant Noise of
Stories” — the tales written, blogs published, and drafts not quite yet put
into final form pale in comparison to the stories actively scrambling through
my mind whenever I’m awake. Fortunately, I sleep well and don’t have constant
noise in my dreams. That’s a very good thing, for when they do appear, the
noises are unsufferable streams of chaos. That is never a good thing.
Much like my chaos, this
constant noise of words and stories I am talking about is not something I
attribute to my MS. I’ve had a close relationship with the noise in my mind for
as long as I can remember. I created worlds for my mind to thrive in, imagining
scenes that were far different from the one my body resided in at the time; my
escape from a world with which I often had trouble connecting. I never made the
critical discovery as a child, understanding how writing down my constant noise
and releasing the words had a far greater effect than merely as stories for
others to enjoy. The act was more than sharing my burden, I released it — I
turned my own anxieties into a permanent release of serenity and ecstasy!
No, it will be years before I
discovered that trick. Until the day arrived, my noise, and words, and stories,
and chaos, all remained inside.
(FYI – this is not where I
thought this blog post was going. As I describe the younger me, sharing details
about myself I’ve never expressed to anyone before, I’m writing discoveries I
never made before – connections I never realize existed. It’s quite unsettling,
so let’s please keep everything just between you and me for now, OK? Thanks.)
I have a lot of keepsakes from
my childhood. Collections of school achievements and certificates; mementos and
keepsakes I held onto for some reason; a large collection of “stuff” my mother
kept as her baby boy grew up, until the day she turned it over to me. I’ve
forgotten about most, some do not even bring back the faintest recollection
when I retrieve the relic from my younger days. There are three I treasure:
- My second-grade story of “The Man with the Golden Arm,” written and illustrated by yours truly. I dug through boxes this morning, trying to find the picture book, but had to call off my search before I wasted too much time going down the rabbit hole. I’ll find it soon. It’s the only story I remember writing as a child; it has provided me over 40 years of comfort and smiles. Maybe one day, I will publish this next to Eleanor’s “The Three Little Squirrels and the Big Bad Dog.”
- A journal from my high school senior year religion class. Brother George DiCarluccio was my teacher. That was the first time I truly opened up and shared my thoughts. There was a lot of turmoil in the transition of that year (my father’s suicide, my first love, my acceptance into West Point). Brother Dicarluccio’s words and the peace I felt every time I reread the pages inspired me to write again 20 years later, a journal to the first child were expecting. Sadly, Ailish never lived to read my words, but my writing continued. When Eleanor is older, she will be the proud recipient of 2,500+ pages (and growing) of my rambling!
- A cadet evaluation from my Literature instructor at West Point. Mandatory Literature at West Point, back when I was there, was much as you would expect for a military institution. I did what was required to complete the class, but not much more. I had zero interest in English, Literature, writing, reading, or any other ‘flaky’ stuff like that, instead focused on math and computer science. 1’s and 0’s were so much more personable. My effort reflected my desire; my evaluation reflected my effort. I’m curious to see how my instructor will evaluate my ability to “get the job done, but without energy or enthusiasm.” Strangely enough, this was the only student evaluation I held on to…
My life before multiple
sclerosis shied away from writing. The few times I was drawn towards
storytelling, I created passions treasured every day of my life. I wonder what
creations would have come from the eight-year-old child, the 16-year-old
teenager, or the 20-something-year-old kid had he realized the power simple
words and complex sentences held. Instead, my chaos continued to rage inside.
I’ve done a lot of stupid
things in my life, actions I thought would make me feel better or relieve that thing
inside me I could not describe (btw, it was chaos). Maybe I would’ve continued
that way for a long time — many people live their whole life between the
extreme highs and lows of stupid things. Perhaps it would have caught up with
me in a grand way (grand good or grand bad, you decide). I never got the
chance.
On October 7, 1999, I first
read the words “possible multiple sclerosis” on a piece of paper, and my steady
stream of chaos turned into a full-on avalanche. Years would go by before I
started to rein in my chaos. Constant moves, poor decisions, work/life imbalance,
toxic relationships, police reports, alcohol, and excess everything were the
only outward expressions of my inner turmoil. The only time I seemed to feel at
ease was in my drawn-out fundraising email messages of those early years, but I
still never made the connection. It started to come to a head on May 1, 2008.
My
Little Love,
I
am going to use these pages to tell you about your Daddy and his life. I want to try to give you the chance to know
about the events, people & thoughts that made me….well, me, as I start to
write this journal.
I
will write when I can. Maybe I will
develop some kind of regular pattern to this.
Maybe not. Who knows, but I want
to take the time and put as much as I can down in writing. I’ll start on the things that got me to this
point in May of 2008. There’s lots of
stories to tell and things to share.
There’s also the present – and all the excitement Mom & I have in
our lives. As time goes, all new stories
& feelings will come to me. I’ll
write this too.
I’m
not sure when I will share this with you.
But when I do, it is yours.
These
pages are a sign of my love for you. My
experiences, thoughts, feelings and actions all make up who I am, who I was and
who I will be. I hope that the insight
into me that you gain will help you understand the man I have become – and I
hope you are proud of me!
Take
these. If they prove valuable, pass them
on to the next generation. Add to these
pages if you want to & adopt them as a part of your legacy.
I
love you with all my heart,
Daddy
As I did every day after that,
I stepped away from my world, organized my anxieties, and described the chaos
inside. I wrote in my journal. I created new stories just to have stories I
could tell my unborn child. When Ailish decided this world would not be for
her, I put away those pages, but the fire had already been lit. I created
stories about worlds that should have been unfamiliar to me; I wrote stories
about my life, my loves, my fears; I wrote stories about multiple sclerosis. I
discovered I liked to create stories. Who knew?
Apparently, I knew. Digging
through folders on my computer, both at work and home, I found scattered writings.
One paragraph bursts of emotion, 5 to 10 pages of thoughts that were scrambling
through my mind at random times. I’ve been doing it for years… Huh! By the time
news of Eleanor came along on August 20, 2009, I was loaded with a treasure
trove of stories to tell. Many of them had to wait for a while, as new stories
pushed to their need to present themselves immediately. I never slowed down.
On April 15, 2010, less than
two weeks before Ellie would come into the world, I shared my first story with
the VA MS Center of Excellence: Living
with Injections. Blogging for the VA turned into my own site. Today’s entry
is blog number 123.
Not all my blogs are about
multiple sclerosis. Not all the tales I share with Eleanor are about my
struggles with the disease. I told stories for the simple fact that I always
like to tell stories and found it very difficult to stop. Not until I drafted “Chaos”
for my collection “The Ramblings of a Condemned Man” did I put 2+2 together,
much like how the discovery of younger me did not occur until I wrote “Effort
16 – My Sincere Thanks to MS.”
I still like to tell stories
just the purpose of telling stories. Sometimes, I need to do this because the
chaos of those words cannot remain inside of me. Other times, my blogs are the
wonderful therapy of a rash decision to spend 30 days telling everyone intimate
details of my relationship with multiple sclerosis. Not the most
well-thought-out idea, but definitely the healthiest release of that constant
noise.
So, thank you, multiple
sclerosis. In being the most debilitating and destructive experience of my life,
you have become the catalyst of a wonderful, life-saving experience.
I still hate you and hope the
stories will inspire my readers, leading to their 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
Never Stop…
Never Quit…
Reg. U.S. Pat. & Tm. Off.
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