Being disabled gets to me sometimes.
Usually I can shake it off. When an unexpected loud noise causes me to suddenly shriek and collapse? Ahem. I'm fine. Moving on. A stranger in the street mocks me for my mask? Whatever, dude. I lose balance on the dance floor and it's sudden death grip on whatever poor soul I happen to be dancing with at the time? "Heh, sorry!"
Thing is, I've been doing this "out in the real world" thing for a couple years now, so I know approximately what to expect regarding my disabilities and how they interface with the general populace.
But sometimes the perfect storm collides with my reality and it unexpectedly throws me.
Like tonight I walk into a dance hall I've been at half a dozen times before, assuming most people there would be accustomed to the non-conventional sight of me by now. My guard was down, I guess. The cashier was first visibly startled by the sight of my mask, and then reacted with over-dramatic "AAAAUGH! Wow. Uhm. Okay then." completed by eye rolls and shaking his head to indicate just how weird he thought I was being. In the negative sense.
I ignored him. It's my default in dealing with such things. I put it out of mind and moved on.
But then later, on the dance floor, miscommunications due to my mask making it hard to be heard resulted in a dance with a new partner breaking contact frequently, which left me flailing and beginning to panic.
You see, nowadays when on the dance floor with a partner who keeps me close I can dance practically normal. This is a HUGE achievement for me, and I mentally buy into that image of normalcy. As long as someone's hanging onto me or I them, I'm good.
But without contact, I'm instantaneously handicapped again. All focus is diverted to remaining standing so that I don't fall over.
The transition is sudden and shocking.
In the blink of an eye I go from not a care in the world to suddenly terrified that I'm going to end up crawling off the massive dance floor on hands and knees. I go from able-bodied to being disabled in a sea of ignorance that would trip over and injure me.
It's been triggered worse than this before, like the time I had an emergency need for my medications but someone had moved my bag, and I couldn't walk any further. I remember scanning the room wide-eyed and trying not to panic but also plot some course of action before I collapsed non-communicative. I managed to grab someone and tell them to get staff, I need help. It was resolved barely in time.
Or, less dramatically, like the several times I have had to cancel or change plans because no parking was available close enough to my destination.
When it does hit me, when I'm unable to just roll with it, is when my world of "I can" is shattered into fragmented pieces spelling "I can't". I can't go out in public and expect to be treated normally and with decent respect to go about my day. I can't venture onto the dance floor without risking causing a scene and being a safety hazard to myself and others. I can't wander more than 10 feet away from my essential medications. I can't reliably make my voice heard. I can't independently drive wherever I want to go. Can't. Can't. Can't.
Each of these thoughts further collapses my relatively free world into one ruled by a fear of risk--risks most other people have never even had to think about.
What helps?
The only thing that stops these negative feedback loops for me is to retreat from anything that has a "can't" attached to it, into a bubble where I can gradually rebuild a world of "can's".
I can breathe safely around my boyfriend tonight. I can eat the fries from Dick's Diner without reacting. I can drive around okay (look, here's empty handicapped spots!) and I can laugh again.
Slowly, I feel myself coming back to life inside.
I'm still a little off, and probably will be until after I've slept on it. Then I'll probably be fine. Because tomorrow is another day full of possibilities, and chances are I'll feel up to living by those risks again with little thought.
Life is too short and too full of beauty to spend it sidelined.
But yeah, it kicks my ass every now and again.
Also published to my real blog, under construction...
Usually I can shake it off. When an unexpected loud noise causes me to suddenly shriek and collapse? Ahem. I'm fine. Moving on. A stranger in the street mocks me for my mask? Whatever, dude. I lose balance on the dance floor and it's sudden death grip on whatever poor soul I happen to be dancing with at the time? "Heh, sorry!"
Thing is, I've been doing this "out in the real world" thing for a couple years now, so I know approximately what to expect regarding my disabilities and how they interface with the general populace.
But sometimes the perfect storm collides with my reality and it unexpectedly throws me.
Like tonight I walk into a dance hall I've been at half a dozen times before, assuming most people there would be accustomed to the non-conventional sight of me by now. My guard was down, I guess. The cashier was first visibly startled by the sight of my mask, and then reacted with over-dramatic "AAAAUGH! Wow. Uhm. Okay then." completed by eye rolls and shaking his head to indicate just how weird he thought I was being. In the negative sense.
I ignored him. It's my default in dealing with such things. I put it out of mind and moved on.
But then later, on the dance floor, miscommunications due to my mask making it hard to be heard resulted in a dance with a new partner breaking contact frequently, which left me flailing and beginning to panic.
You see, nowadays when on the dance floor with a partner who keeps me close I can dance practically normal. This is a HUGE achievement for me, and I mentally buy into that image of normalcy. As long as someone's hanging onto me or I them, I'm good.
But without contact, I'm instantaneously handicapped again. All focus is diverted to remaining standing so that I don't fall over.
The transition is sudden and shocking.
In the blink of an eye I go from not a care in the world to suddenly terrified that I'm going to end up crawling off the massive dance floor on hands and knees. I go from able-bodied to being disabled in a sea of ignorance that would trip over and injure me.
It's been triggered worse than this before, like the time I had an emergency need for my medications but someone had moved my bag, and I couldn't walk any further. I remember scanning the room wide-eyed and trying not to panic but also plot some course of action before I collapsed non-communicative. I managed to grab someone and tell them to get staff, I need help. It was resolved barely in time.
Or, less dramatically, like the several times I have had to cancel or change plans because no parking was available close enough to my destination.
When it does hit me, when I'm unable to just roll with it, is when my world of "I can" is shattered into fragmented pieces spelling "I can't". I can't go out in public and expect to be treated normally and with decent respect to go about my day. I can't venture onto the dance floor without risking causing a scene and being a safety hazard to myself and others. I can't wander more than 10 feet away from my essential medications. I can't reliably make my voice heard. I can't independently drive wherever I want to go. Can't. Can't. Can't.
Each of these thoughts further collapses my relatively free world into one ruled by a fear of risk--risks most other people have never even had to think about.
What helps?
The only thing that stops these negative feedback loops for me is to retreat from anything that has a "can't" attached to it, into a bubble where I can gradually rebuild a world of "can's".
I can breathe safely around my boyfriend tonight. I can eat the fries from Dick's Diner without reacting. I can drive around okay (look, here's empty handicapped spots!) and I can laugh again.
Slowly, I feel myself coming back to life inside.
I'm still a little off, and probably will be until after I've slept on it. Then I'll probably be fine. Because tomorrow is another day full of possibilities, and chances are I'll feel up to living by those risks again with little thought.
Life is too short and too full of beauty to spend it sidelined.
But yeah, it kicks my ass every now and again.
Also published to my real blog, under construction...
