Wednesday, May 31, 2017

World MS Day 2017

In my previous careers, friends and colleagues often remarked on the perpetual smile I wore each and every day.  Morning or night, Monday or Friday, wherever I went, my smile seemed to follow.

Sometimes, I worried my penchant for smiling might actually work against me…perhaps my grin meant I wasn’t that serious about my job, or worse, I was hiding something behind my Nixonesque smirk.

The truth is, I was just happy.  No ulterior motives.  Even in my final year of active employment, when I instituted what I considered “smoke and mirrors” (i.e., doing whatever was required to survive in Corporate America while managing an aggressively spreading chronic disease), I still couldn’t wipe that smile from my face.  To borrow from Popeye, “I yam what I yam!”

That’s not to say I didn’t have my not-so-sunny moments.  Those usually centered on my daily commute…but I do remember one particular office politics pet peeve that always got the best of my spirits --- the “brainstorming meeting”.

I get irritated even writing about it now.   “Brainstorming” and “meeting” are two words that should NEVER be used in the same sentence.  You don’t schedule ideas.  No.  No.  No, no, no.  If I could avoid those meetings, I would.  Sometimes, I would just do my best Don Draper impersonation and just get up and walk out (and yes, I did it with a smile on my face!).

Having a brainstorming session sounds great, but here’s the reality:  No new ground is covered.  Ever.  Employees say what they think management wants to hear thereby checking the proverbial boxes of “contributing”, “adding value” and “collaborating”.  Added bonus if they achieve all three competencies and create no additional work for themselves.

The best idea will never occur while 10 people are sitting around a table talking about what the best idea should be.  There is no magic in that.  It’s like warming up some store bought “Chips Ahoy” and calling them fresh, out of the oven, home-made cookies.  No!

This brings me to what I’m writing about - “World MS Day”.  That’s today, May 31, 2017. And I’ll be honest, I don’t know how I feel about it.

Do I like that there is a worldwide day dedicated to raising awareness of multiple sclerosis?  I guess so…I certainly appreciate the sentiment. 

On the other hand, May 23rd is “World Turtle Day”, May 25th is “Geek Pride Day” and clear your calendars now because June 21st is “International Yoga Day”.

I have no qualms with geeks or yoga and root for that tortoise every time to take down that obnoxious hare but at what point – when seemingly any and everything has its own “day” - do these 24 hour commemorative periods cease to have any true meaning?

What does “World MS Day” even mean?  I’m pretty sure it’s not a celebration for those of us with MS.  And I had MS yesterday and will still have it tomorrow.  According to the “World MS” website, it is a day to “bring the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.”

As with my riff on “brainstorming meetings”, I just don’t see the magic.  I have a hard time writing a meaningful story about living with MS just because there is a specific day dedicated to that.  I know, I’m being obtuse….a lot of people worked hard to create this day for those of us with MS and for that, I am thankful.

And I’m hopeful that, with the help of today, additional money will go to MS research – every dollar matters – and for that, I’m forever indebted.

But to borrow from another cultural reference, “Nobody puts MS <Baby> in the corner”…and I know it’s not intended to be that way, but it kind of feels like it.

I don’t speak for the MS community, just for myself.  But I don’t want a day, a week or even a month.  A ground-breaking idea doesn’t occur at work because you schedule a meeting to discover one.  And I don’t think somebody’s awareness of multiple sclerosis is increased, just because they are told that today it should be.

Read my previous entries.  Keep following my blog, check out what I’m writing for The National MS Society or…forward and share with others.  Ask me questions, anything and anytime.  I’ll be happy to answer.

No store bought cookies from me, just the real thing.

Tuesday, May 30, 2017

Law & Order: Multiple Sclerosis Victims Unit

In the multiple sclerosis system, a chronic disease affects two separate yet equally important groups: the brain and the spinal cord. Because of this, often it’s hard to tell the difference between MS and non-MS-related events. These are those stories.

Dun dun!

Check out my latest story, posted at The Mighty!

Saturday, May 13, 2017

9 Year Diagnosisversary™

Nine years ago today, I was in beautiful Rochester, Minnesota. 

I'd spent a few days during the previous week undergoing several tests at The Mayo Clinic.  They quickly determined I did not have Crohn's Disease - which I was originally misdiagnosed with in Texas...until my GI doctor, discouraged by the extent of my symptoms, referred me to the Mayo Clinic for a second opinion .

But, if it wasn't Crohn's, what was the answer?

As we waited for test results, my wife and I spent the weekend in nearby Minneapolis. 

We enjoyed the company of my Aunt and wife took in the Mall of America while my Uncle took me fishing in Wisconsin (Fishing, post-spinal tap, probably not one of my wisest decisions...but one I stand proudly behind.  I was not going to sulk in my pain after that invasive procedure, instead I chose to spend it enjoying life.)

So then on the following Tuesday, May 13th, the grand mystery that led us on this medical "vacation" finally came to an end with a clear diagnosis: Multiple Sclerosis.

They also determined some other oddities about my health:  my stomach processes food faster than 99% of the general population (which was probably the red herring that caused my Crohn's misdiagnosis).

Since they viewed my stomach as so unique, The Mayo Clinic doctors requested I stay a few extra days to have more tests done and be part of a study.

We had already been there more than a week...

I politely declined.  I was "tested" out and just wanted to get back home.

I wrote about how and why I recognize my Diagnosisversary™  here, if you'd like to check it out.

Nine years.  Wow.  Carpe diem, because time flies, even more so when you are living with multiple sclerosis!
In all my post-spinal tap glory...

Thursday, May 11, 2017

76 Things #29: Uncomfortably Numb

Over the past few days, the lyrics to “Comfortably Numb” have routinely been playing in my head, particularly this part of the song:
My hands felt just like two balloons
Now I've got that feeling once again
I can't explain you would not understand
This is not how I am

I woke up Sunday morning with a tingling sensation in my left fingertips. 
It’s an irritating sensation, one that has previously traveled up and down my right arm (the feeling still faintly resides in my right forearm).

Unfortunately, when you have MS, waking up with new or odd sensations/symptoms, is a common occurrence.  Life goes on.  And so it did.
It was a beautiful day that our family enjoyed together, tingles or not.

On Monday, I woke up and the feeling had spread beyond my fingertips to encapsulate my entire digits from pinky to thumb.
As of this morning, it’s now my entire left hand, forearm and shoulder.

You know that feeling you get when you wake up and your “arm is asleep”?  That’s probably the best way to describe it.  Except, much to my dismay, my hand and arm continue to hit the snooze button and still haven’t woke up.
Or, to borrow from Pink Floyd, the upper part of my left body is resting (un)comfortably numb.

Trying to open a jar, crack open pistachios or button a shirt is comedy gold.  Holding anything with my left hand is problematic. 

Can I pick up a cup or book with my left hand?  Sure, after just a few seconds of holding it, my hand and arm start to shake – it’s almost as if the MS is saying, “Nope, not going to happen…nice try!”
And much like when your arm or leg “feels asleep”, my left hand and arm feel very heavy to maneuver around.

Adapt.  Adjust.  Abide.
That’s my motto and I’m sticking to it.

When my daughter comes home from school, races over to hug me…and I have to pause and ask her kindly to grab only my right arm – well, I kind of want to take that motto and throw it through a window.
But like any new MS wrinkle, it’s part of my new normal.  Maybe for a few more days, months…who knows. 

It’s also the #29 thing you might not know about my MS.

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