Saturday, April 24, 2021

Reconstructing and Defining Kevin Part Seven: Reassess

 

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 103 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.com

www.neverstopneverquit.blogspot.com

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


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