Part Seven: Reassess
(How I Got There, Not What It Means)
Is
data collection futile when you measure without a comparable standard? Perhaps.
Is
it wise to adjust inputs before you develop a defined end-state? Again,
perhaps.
Sometimes,
you can form the right QUESTION only after understanding the concept of ANSWER.
***
“Not
until October 29, 2020, did I realized my objective of Day #1.” Kevin went on
to explain his epiphany. It was similar to the first time he started to keep a
daily record of his life.
(Blog
post, Monday, July 7, 2014, Tracking my MS)
April
8, 2013
That
was the day something dawned on me: I’m slipping and my MS is getting
worse. What I couldn’t tell you was how
it was getting worse, what was changing, or what I am doing to
cause/prevent/manage those changes. It
was a little more than five months since my last release from the
hospital. Meningitis had been the latest
twist, a reaction from my then-newest medication, Gilenya. After 12 years of ‘stable’ treatment on
Avonex, I was riding the medication merry-go-round. In two years, I went from Avonex (leg
infections), to Tysabri (anaphylactic shock), to Gilenya (meningitis), and
finally, Rebif. My body was rejecting
all medications available in the most imaginative ways possible! Maybe I was still reeling from the effects of
meningitis, maybe I was experiencing a new exacerbation, or maybe something
else was going on. Maybe was my new
default diagnosis. I had no control.
Everyone
with MS has those moments when you feel you have no control in this at
all. I didn’t like that, nor did I
tolerate it well (I never do). I started
to push back for answers. To get answers,
I needed data to ask the right questions.
That was the path to control, so the first step was to collect
data. I have over 2,700 pages of medical
history from the Army and the VA Hospital.
That’s a lot of medical testing, evaluations, treatments, prescriptions,
summaries, and appointments. Over 2,700
pages were of zero value to me at the time.
I needed to know details, the smallest details of every day.
April
8, 2013, was Day #1. I started tracking
every aspect of my life. Sleep,
exercise, activities, and diet were all logged in detail. Even mediations, treatments, and the weather
were logged! I graded myself every day
with a subjective score, a comparison to a set point in time when I was
“100%”. On August 4, 2012, I rode strong
with Team Amulet for Bike MS. After
recovery from my broken leg the year before, being able to ride 82 miles in 103⁰ heat was a signal that my body was back. I had MS, but I was strong; I was winning the
fight! Ever since, I have never felt as
strong as I did that day….
Control
– it was the same word Kevin used when he finally discovered why he started the
most recent attempt to “fix” everything. Metabolic reactions incited by abrupt
changes in physical or dietary patterns can often create false impressions
concerning the efficacy of a health and fitness regimen. The long-term
viability of those limited programs is rarely successful. Perhaps the intensity
in one area is too much to maintain; the body may grow weary, or the mind starts
to wander. A focus that addresses only a portion of Kevin’s body while failing
to care for his entire person (body, heart, mind, soul) will never be a
permanent solution.
***
“I
did not invent penicillin. Nature did that. I only discovered it by accident.” (1)
In
1922, Alexander Fleming discovered lysozyme, the precursor to his revolutionary
penicillin discovery. Lysozyme was not an enzyme he diligently pursued until
its finding, but rather a discovery in several of his discarded failed
experiments.
“If
I had not failed when comparing my year to every measurable standard,” Kevin
reflected, “I don’t think I would have found the true cause-and-effect of my
success.
“There
was no sticker shock as the 12-month period ended. I had been following the
numbers and the status of every objective. I also knew how I ‘felt’ overall.”
He explains how the only anxiety came from discrepancies in the actual versus
target numbers of his data tracking. The result was a cascading succession of
realizations:
“If
I closed my eyes and thought about it, I was better in every sense. When I
looked at my output, my results – physical performance, mental clarity, peace
of mind – I was in much better standing than 12 months prior. I looked at my
writings, both published and unpublished, and saw the gradual changes that led
to a leap in my self-vision. Then I looked back at the one number going in the
wrong direction – my weight.”
Kevin
spent quite a bit of time articulating his fears. Stories of his past are rife
with perceptions of danger. Many would consider his perception irrational. We
will revisit some in this book, but Kevin repeatedly makes the same argument.
“Even when everything seems great, darkness strikes if I am unprepared. That is
why I measure my progress; to forecast where I will go. Data takes precedence
over impression.”
But how can everything feel great if nothing is good? We sat down together and talked through scenarios, bullet points, and possibilities to explore. In no particular order:
- Maybe Kevin was measuring something wrong (we reviewed his processes, there were no errors).
- Maybe something was inflating Kevin’s assessments (there was no euphoric interference).
- Maybe specific targets were not set correctly.
- Maybe the timing was not adequately established.
- Maybe the data was irrelevant.
- Maybe there should be more.
- Maybe there should be less.
How
can everything feel great if nothing is good? We began with a search for
balance – physical, mental, and emotional balance. Our results encapsulated the
concepts under wellness; a deeper dive uncovered the Dimensions of Wellness.
“God,
I love the Internet,” Kevin chuckled.
The
search within ‘dimensions of wellness’ uncovered the Seven Dimensions of
Wellness; then the Eight Dimensions of Wellness; then Nine, Twelve, Seven, Six…
“God,
I hate the Internet,” Kevin chuckled.
Based
on the general concept, Kevin was sure the answer was within the Dimensions of
Wellness, so we kept working within the construct. As our background writing
would take some time, we needed to figure what was were trying to say.
“On October
26, I found my answer.” Kevin’s comfort level settled on Eight Dimensions of
Wellness tied to an article written by Debbie L. Stoewen, titled, Dimensions
of wellness: Change your habits, change your life. From the first sentence,
“People often think about wellness in terms of physical health — nutrition,
exercise, weight management, etc., but it is so much more,” Kevin
connected. Through the last, “Don’t
worry about getting it perfect; just get it going, and become the best kind
of person you can be” (2), the article frequently defined his yearnings
and will continue to challenge him for our foreseeable future.
With
a glorious smile, Kevin boasted, “Now I get to work!”
(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520913/
(2) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5508938/
***
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.blogspot.com
Never Stop…
Never Quit…
Reg. U.S. Pat. & Tm. Off.
