Friday, October 10, 2014


My friend, Don, scolded me recently.  It had been quite a while since I had to sit through a stern lecture regarding the poor choices I was making.  The conversation went something like this:
Don: You've got to slow down, Kevin.  You’re doing too much and pushing too hard.
Me: I’m just doing what I can.  I can’t just sit still.
Don: If you do too much with your MS, you’re going to end up hurting yourself.
Me: But, Don, you do a lot.  You climbed up on your roof, cleaning moss off the other week.
Don: Yeah, but you've got to be careful about pushing your body too hard.
Me: But, Don…you’re completely blind!
Don: Yeah, but I’m not going to get any more blind.  You could really do some damage if you do too much.
Me: But, Don….never mind.

How difficult and challenging something is really does come from the unique perspective of each individual.  For me, Don’s my pillar of strength.  Although I like to imagine myself in the Daredevil superhero role, Don truly is "The Man Without Fear".  He’s the stereotypical blind lawyer turned superhero… the man who always seems to push too hard yet somehow manages to blow past the expectations and limitations anyone thought they had about him.  Don provides me valuable insight on perceptions and what to do about them.

I live in a strange world these days; a world where I struggle to bridge that gap between the perceptions that other people have about me and reality.  My MS creates perceptions in my family, friends, and everyone I interact with throughout the day. 

Sometimes I hear words like brave, inspiring, and motivating when others describe me.  Some people are impressed by what I have done in spite of what has happened to me.  Others admire my continued energy in spite of what is going to happen to me. 
…but that’s not reality

The reality is that I am scared, embarrassed, and disheartened when I try to describe myself.  I am continually critical of what I am doing; unsure of what I can or should do next.
…but maybe that’s my perception

My own perception is the most dangerous one of them all.  I get wrapped up in trying to predict or manage the image that others might have in me and my MS. 

If I push my body hard, against the limit of what my MS can do, will others see this as irresponsible and dangerous? 
The answer I found here is ‘sometimes’.

If I take it easier, resting early to conserving my energy, does that come across as lazy and taking advantage of my situation? 
The answer I found here is also ‘sometimes’.

How do I respond the next time I am confronted with these reactions (I experience them every day)?  Do I need to try and understand their perception?  Do I need to work to correct or adjust it? 
This is where Don comes in.

My talks with Don help me bridge the gap between all of these worlds.  He isn't overly-impressed by what I do (nor should he be).  Then again, he never takes pity on what is happening (nor should he).  He shows me the reality of my struggles through stories of his own past, before he had it all figured out (my words, not his!)

Don knows that there is something else. 

But what?  If the perception of others isn't reality and my reality is just another perception, then what is the real state of my MS? 
·         How am I handling everything? 
·         What am I doing right/wrong? 
·         What should I do more/less?

My energy usually goes into managing perceptions.  I feed off of the motivation that others see in me.  I push to do more to try and live up to their perception or overcome my own sense of reality!

Then there’s Don, pulling me from the extremes of every perception.  Don caught me off guard with his little lecture the other week, but I realize there was another plan.  I’ve been too wrapped up with what I have done and what’s right/wrong with my current focus.  I need to think about the future, the next steps to take.  If I don’t then I can really do some damage.  Worse than that, I might miss out on valuable time and opportunities with those I hold dear.

I got it, Don.  Your lecture and your example are clear.  Don’t do less…don’t hold back…but don’t go into anything unprepared!  Winter is coming; my historically tough season.  I can’t try and push my body through everything again.  I have proven that will not work.  This time I will focus and plan to:
·         Strengthen my body and mind to move along the ‘better’ path, in a way that’s faster, safer, and gets me where I need to go.
·         Guide my way around obstacles.
·         Prepare so that I can pull myself, and let others pull me when needed, through the toughest challenges.

What is the real state of my MS?  I don’t know if I will ever find the answers to all those questions I posed.  My guess is that complete answers really don’t matter.  I am entirely responsible for what I do with my MS, and I think that’s where perceptions will come in.  How I react to reality, rather than the nature of that reality itself, will form any impressions.

I’m not sure if I will ever change the whirlwind of perceptions about me and my MS, but I guess that's not so bad.  If someone considers me inspiring and motivating, that’s simply a reflection of how I've chosen to respond to reality. 

Besides, it’s good to feel like a superhero once in a while!  Wouldn't you agree, Don?

It will never stop…nor will we
It will never quit…nor will we
This is why we ride fight!

Kevin Byrne - Portland, OR