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: https://drive.google.com/drive/folders/1E4cNpkFBU4qf3zYDIqZ5Nw72DzhGe88r?usp=sharing
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
https://mssociety.donordrive.com/participant/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.
