ilikebeingsickanddisabled

t h e w o r l d o f i n v i s i b l e i l l n e s s

“I WON’T DANCE, DON’T ASK ME. I WON’T DANCE, HOW COULD I?”

I wish it was as easy as having a better hair day.  Or a closer shave.  A change of clothes or a change of scene.  But my body won’t let me do things I want to do.
I don’t know that I’ve ever wished I didn’t have multiple sclerosis; it’s what goes along with it I don’t much like.  Forget the notion that we need to have disease in our lives so we can be grateful for good health.  And I don’t for a minute hold to the idea that I “created my own m.s.” (being told that is a good example of the importance of choosing a therapist carefully).
I envy people who can walk across the street; I marvel at what’s so simple and yet so hard.  And I’ve wondered if my husband doesn’t do more outdoorsy things like hiking or biking because I don’t.  I know, I know, there are modifications that are enriching, like my 3-wheeled bike, or the rollator I couldn’t get through an airport without.
I remember going to Arches National Park and not getting too much past the beginning of the trail.  The only arches I saw were on a postcard.  Going to Dillard’s Department Store and having to wait for someone to come along to open the door and let me in.
My life is not pitiable; I don’t even pity it.  But I do hate being reminded of those simple “I can’t’s” when it’s because someone’s taken for granted simple things like opening a door or walking down steps.
All the better to taunt you with, my pretty.   Keep it invisible.  Say nothing because that’s easier than explaining.  Act weird or do without.  Say nothing.  That’s easiest.  Yeah, that’s easiest — not best, easiest.  Being an activist just by saying something to, let’s say, the manager of Dillard’s, really does seem like wasted energy.  Go ahead and throw rotten eggs at me for saying that!

Categories: Effect of invisible (hidden) disability on relationship

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