Sitting Room Only

The latest "cartoon" in the new WED series NightWalker comes from the problems we face with people just not understanding what thi...

The latest "cartoon" in the new WED series NightWalker comes from the problems we face with people just not understanding what this disease is all about.  The urge to stand or move is so compelling to us but is simply not something most others can comprehend.

There truly are "no standing" policies in many theaters and almost all airlines.  Many people with WED are upset at not being able to watch an entire movie because they either fall asleep from medication or because they just can't sit still. Trying to explain this problem to an usher can be frustrating to say the least.  A good friend of mine had to leave the movie theater after they refused to let him stand in the back for the rest of the movie.  Airlines have strict rules about standing or walking for safety reasons.  If you explain the situation before boarding the plane, you can sometimes get an aisle or emergency row seat which at least gives you a little more wiggle room.  If you are very fortunate, you might find a flight attendant that has had experience with WED and will fudge the rules for you!

Office settings are a different matter.  When possible, explain to your supervisor or manager just what WED is and the need sometimes to be able to stand. Try to do so in an inconspicuous manner and for as short a period as possible.  Because, let's face it, moving around during a meeting can be disruptive--despite the fact that we can't help it.

I think the most heart-breaking situation though is not listed on a cartoon panel.  That's when friends and family just don't get it.  We try so hard to explain, teach and share what living with WED is like.  We educate ourselves so we can educate others.  We try hard to sit still, pay attention, listen closely but finally we have to get up, stand, walk around.  There are a few who understand yet there are also others who give you that look and you just have to sigh, explain again, or just do what you have to do and endure.  My husband and I were recently at a card party with several neighbors and friends.  There was an uneven number of players so I said I would sit out.  Some people insisted that I at least sit and keep score.  Some thought I was being antisocial.  Only two asked, "Do you need to move around?"  It wasn't that the others didn't care--they just did not get it.  They all know I have WED; they just don't understand it.

Our culture is getting better helping the handicapped get along in society, although there is still much work to be done.  We have "no smoking" areas in many restaurants and public areas--many towns are becoming non-smoking towns.  Maybe we need to be more assertive. Being militant or accusing will not work. That generally causes people to become defensive.  Maybe we need to stand together (pun intended) a little more and insist that the "no standing" rules and ideas need to be changed. Maybe we need to find creative ways to get our point across, like sharing this cartoon.  Humor might help.  Who is willing to stand with me?  Maybe we can organize some stand-ins (instead of sit-ins) or stand-up comedians who will laugh WITH us and not at us.  I, for one, will not take this lying down!!

Seriously, we just need to keep at it--explaining and educating.  One step and stand at a time.

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