Tell me why …

Why ?

It’s a simple question really, an answer, a statement. I guess without the second part of the phrase everything has no meaning. Context gives clarity as does most things in life, along with perspective (too deep too soon?)

Well today I’m answering a personal question. Why do I do this, Why spam peoples in-box on a weekend? Why waste time sharing these little anecdotes?

The simplest answer is “because”!

It’s because for me it has meaning, a purpose. I shared a while ago that my passions were threefold, Psychology, Physics, Philosophy

If we expand on this a level higher we could start thinking of the bigger picture to those burning themes of “Why are we here”, “Why do we exist”, Why again indeed (still too deep?)

I do this for personal reasons, I believe that the sharing of our knowledge, experiences, viewpoint or ideals is instrumental in helping shape the next generation – it should be done without any expectations, no expectations on acceptance or accreditation only that the knowledge is shared. Much like our purpose as parents, to nature the next generation while protecting them until they are able to sustain themselves and initiate the next generation with the knowledge gleaned.

On a second personal level it allows me to gauge how much dexterity I have left and whether the rest of the day is going to be ok or OK.

With MS the decline is inevitable but totally unpredictable. Typing is not always easy, spellcheck smooths away the degradation I see from my own screen. The second element is the degradation of connections in the brain, again inevitable but constant.

This manifests itself in the digression from the topic at hand… squirrel!  (No really!, the resident squirrel is outside my window and Jake is losing his marbles !)

Seriously though part of the journey I am on is to witness first hand what it means to lose the protective membranes on my nerve clusters – that is what MS is. The protective myelin sheath around the nerve bundles is been eroded both in the cerebral cavity and along my spine. This causes the sporadic outbursts in mobility and dexterity where the lining is missing or damaged. It explains the burning feet, frozen hands, wobbly walk…all. Changes in temperature also affect the effectiveness of the sheath – which is why I live in an arctic zone….it just works for me! 11 degrees – perfect …15 degrees – paralyzed.

Digression.

I write/type because it gives me a measure of how I’m doing albeit for the day. It’s strange how all the little things matter once they are gone. Simple tasks like typing and texting are sometimes a real challenge – sure the voice recognition software will work but having tried it it seems to be on some sort of hallucinogenic drugs – it doesn’t get me and I end up frustrated fighting with a laptop that has no soul and no ears!

Digression again.

Part of the trial process I’m on necessitates a check – these days every 3 months but previously it was on a monthly and even initially weekly basis. Innocuous enough but quite confrontational. The assessment usually starts with a round of rhetorical questions – “How are you “being the most common. So far after 2 years lets just say …No.

I’m good! Let’s get this done !

The niceties over the next step is the mandatory Suicide evaluation call- I said it was confrontational !

This is a recorded call to assess one’s mental state via a series of questions. A No (I’ve asked) will result in the trial being suspended immediately and an appointment made with the Psychology department (the cynic in me has concluded this is to protect the trial owner!) as soon as the resident Psychologist signs off …trial (and medication) can resume. No is not a good answer … clearly

The other mandatory tests include the dexterity evaluation…pick up sticks in a nutshell. Or rather pick up sticks and stick them in holes on a board, take them all out one by one…repeat…repeat. My times are increasing which again is testament to the degradation at a neural level.

Another test is to measure cerebral or cognitive function. 10 symbols corresponding to 10 numbers, an A4 page of symbols stead ready go.

My times are increasing too although I’m always commended that I get them all correct.

Other tests along the way include walking – timed distance, walk till you fall, walk on tip toe and heel to toe…pass on all of those, why would I possibly want to fall down and make a fool of myself ?.

Why you may ask ?

Well, what you don’t understand … measure ! These values all go towards an EDSS score (Extended Disability Status Scale) again rather straightforward 1 is normal 10 is dead.

I’m a 5.5 and on a not great day a 6.

The debate is usually if I can walk 205 m without a cane or 195m…it affects the numbers ( doesn’t do anything for me though)

See the source image

So..getting back to the Why !.

Writing allows me to measure for myself how my dexterity is declining, but in a creative and emotional way, not a clinical calculation for a trial.

I hope the things I share and highlight have value for one of you (at least), No other expectations from my end.

For me its my own personal ‘stok achter de deur” , and no it doesn’t translate particularly well to English.

To end this Saturday reflection ,what better way than via Seth. ( I do follow several other bloggers but Seth has a way with words that I admire)

A word for the organization today.

Smooth water

Everything moves better in smooth water. Engineers spend a lot of time and energy to avoid cavitation, the often dangerous bubbles that are caused by pumps or propellers. And sailors and surfers prefer to do their thing without excess chop.

As we apply pressure to an organization, the same thing happens. At first, people engage with change as an opportunity, doing their best work in the face of small shifts. But once fear sets in, so does cavitation. The cavitation, the bubbling, the uncertainty, the expansion and collapse of bubbles of doubt and disagreement—this becomes the primary problem, more than the fear that originally caused the issue.

The challenge is to avoid this before it happens. To insert pressure relief valves, smooth out the bends, and give the energy a place to go.

The stories we tell each other will lead to the actions we take

Take care everyone , it seems as though Spring is here (was here !), may you all have some smooth water ahead

Published by Daniel Taylor

MS Warrior with an affinity for 80's New Wave music and deep philosophical ramblings...and coffee , definitely coffee

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