Dangerous Compassions

in which the pain of being misunderstood crushes me

I got angry today, fed up that I’m being constantly misunderstood.  People have a tiny range of experiences and can have zero belief that things they haven’t experienced are possible.  What a failure of imagination and compassion.

I’m having problems with low energy and temperature regulation.  People seem to think I’m lying, exaggerating, being high-maintenance, being ridiculous, being lazy…  Or it’s all because I’m fat, and of course, being fat is a problem I caused for myself, so I deserve no compassion or accomodation.

In fact, I was fat for many years and my health was good.  Two days ago I was at a warm restaurant, and a kind lady I love marveled that I could still be hot, seated next to the ac that was blowing right on me.  Why would I exaggerate?  It’s like they think I’m being intentionally wimpy.  Why would I do that?  Even smart people.  If they haven’t experienced it personally, it’s all a charade.

I remember years ago, our swami, a smart, kind person, telling Ming that his sleep problems are all because Ming doesn’t exercise enough.  He was invalidating Ming’s 35+ years of living with a disabling medical condition by applying his own life experiences to a problem he doesn’t have.

There’s science!  Some scientists say narcolepsy is an auto-immune disorder.  It’s an actual, studied thing.  When a person with narcolepsy sleeps, different things happen in their brain.  It can be measured!  Ming is considered by the government permanently disabled.  He’s not making narcolepsy up.

But according to Swami, if Ming just exercised more, he’d be fine.  And Swami is a nice, reasonable person, normally.

I got really hot, which feels like anger to begin with.  Then I was upset to be misseen and uncared for by so many people–actual people in my life, and culture in general.

Getting that angry, it felt like a bunch of pissed off yellow jackets were buzzing around inside my body.  I needed to move around and get feelings out, but I had no energy and was too hot to dance.  I talked to Ming and was finally able to cry some tears that I’d been needing to cry for a day.

Compromising for others, and they don’t even know if.  Pushing down needs no one can understand.  Disabilities that are invisible and totally dismissed.  I hear “be yourself,” but myself is too confusing.

I need weird things!  Just because they’re weird, doesn’t mean that’s not real.  A tv playing news at a high volume means I need to leave the room immediately.  It’s like the sound is going into my soul and killing me.  I’m not exaggerating or being fussy.

It’s a sensory issue, I guess, but who cares what I need.  Watching the news is normal, so that person’s need wins.  I feel he was self-medicating with news for three hours.  Whatever he needs to do, but I needed not to hear it.

I have other sensory issues too.  I have my diagnoses, but nothing really encapsulates it.  I struggle so much, at times I would like to give up.  But I get up the next day and do it all over.

It’s the middle of the night.  I’m sitting at the kitchen table of the people we’re housesitting for.  These huge windows that look out on the San Francisco Bay, there are no curtains.  So maybe someone’s looking at me?  People in glass houses shouldn’t walk around naked.  Or throw stones.

Oh God, please help me create a world where all of us can be who we are.

By Laura-Marie

Good at listening to the noise until it makes sense.

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