I don't like stairs.
Now, I know many, many people are not big fans of stairs - especially when carrying things like groceries or baby strollers. But I see stairs and I just groan - I always have.
There is a very entertaining thread on the EDS Message Boards called "For FUN! "You might have EDS if..." We all like threads where we can have a sense of humor about this thing we all share different versions of. One of the ones I added was "You might have EDS if you fall UPstairs as well as down!"
I've always done that - all through school, tripping and falling up and down stairs. And my mom says that when I was around 3, the neighbor whose house I'd been playing at told her I fell straight down their stairs like they weren't even there - I just kinda dropped (she apparently found it amusing. I never really liked her a whole lot - guess it must've been mutual!). I've been told that when I fall, it doesn't look like a normal human falling - I look like a marionette whose strings have been suddenly cut. Picture it. <floop!> Must be odd to see.
SO I don't like climbing stairs a) because I have exercise intolerance (that sounds like a high school gym class joke excuse, but it's an actual real medical thing - still, I wish I'd known that phrase in Junior High!) and b) my left knee has an unrepaired torn mensicus - my right knee has had multiple surgeries, but it's holding up better than the left. But, as I've said, lots of people hate going up stairs.
But unlike most people, going DOWNstairs is worse for me, because of the mentioned-in-a-previous-post lack of proprioception - I don't know where my joints are in space. And, even braced, they're weak. And my bones move. And people don't have ANY way of knowing this as they push past me and I vividly picture falling forward and kissing the cold, disgusting subway steps. It just scares the crap outta me (and not just cos "ew! subway steps!", but that's almost enough.)
NYC is a city FULL of stairs.
Subway stairs, jerry-rigged and seldom-repaired backstage stairs, old steep stairs with rickety handrails in ancient buildings (especially scary to climb down after I'm shaky from my Pilates class), stairs up to stores, stairs down to offices. My apartment building has an elevator, but you have to go up a flight of "stoop" stairs before you can get to it! Only some of the subway stops have elevators or escalators and they are frequently being repaired - there's nothing quite like the thrill of getting off your train and seeing the boarded up and padlocked "Excuse Our Mess While We Improve Your MTA Service For You" signage that you know is hiding a dead escalator. (I was told they die frequently because people - and by that I mean almost exclusively male people - pee on them. STOP doing that!)
I've been asked to participate in the next "Argument Sessions" - it's a one-night presentation of a theatre workshop using actual Supreme Court transcripts and I loved doing the first one! It's one of those projects that requires a few short bursts of rehearsal and then we do it, and my body can mostly handle that. But the place it's done is by a subway stop with a broken escalator. The last time I did it, that stop AND the connecting stop I needed BOTH had broken escalators. I had pain all over the next day. I felt it was worth it.
I mean, I can't not do some creative work - stopping everything you love because you've become disabled leads to depression pretty damn quick. And this is an insanely interesting project - I have some damn talented friends and Ilana Becker, who created this, is one of the most fun to work with!
But I also know that the stairs are coming.
The stairs are coming.
The stairs are coming...