Tuesday, September 13, 2016

Shatter Me

I figured it out.

You know how a windshield for a car is made? It's a sheet of glass sandwiched between two pieces of very strong plastic. If a rock hits your windshield while you're going 80 mph, even if it punches through, the plastic will hold the shattered glass in place until you get it replaced. (Which you had better do soon if the rock actually made it through the windshield rather than just shattering the glass.)

This keeps the glass from flying inward, in deadly shards, at you. It keeps you safe.

But no matter what you do, you can't fix the glass afterwards. You have to replace it. If you keep driving with it (say it's only a star-pattern crack in the glass) the glass will continue to break. Worse, it'll wear at the plastic from the inside, scrape scrape scrape.

People aren't windshields. They're supposed to heal.

I don't know how.

Pippin's death shattered me. All through and through. But the "plastic" kept me looking mostly intact. I mean, people could tell I was hurting, but nobody could see just how bad the damage was. Nobody understood that only a thin shell kept me together.

Since then things just kept getting worse. Daddy had a seizure. Scary, terrifying, to see him in the hospital afterwards, unable to remember from moment to moment, and certainly not the strong, capable, emotion-rock of my life he had been.

One of my uncles died, rather unexpectedly. I really liked him, too. He was one of the ones that was "friends" with me (if you can call us friends when we didn't see each other for years at a time).

My company decides to sell my part of it to someone else. Now we're in the middle of the transition to the other company and everything's changing and nobody's communicating. (We found out the hard way that the new badges will only let you in the door during a certain time period around your "schedule." Luckily it wasn't me personally that got locked out, but I add this so you realize just how badly nobody's communicating.)

I develop a lovely eating disorder where I can't just eat more (because it's not anorexia) and I can't just eat normally (because I don't know--apparently, I've been doing a mild version of this eating disorder all along).

And I get "burning tongue syndrome" on top of it, a condition where they don't know what causes it, what makes it go away, or if it will ever go away short of my death. So I'm now in constant physical pain, too.

I think the plastic's wearing thin. I'm starting to feel the shards.

And I don't know how to heal. I don't know what I'm doing wrong that I'm not healing.

All I know how to do is put my head down and keep going forward, in the hopes that something, somewhere, will be better. Easier.

Thursday, September 8, 2016

Why Can't You Be Normal?

Bear with me, this is going to get long (I have a brevity deficit).

Let me tell you a story. So there's this woman in a wheelchair. She's paralyzed from the waist down. She's trying to go shopping and there's a big crowd of people and she's in the way. One of the people in the crowd says to her, "you look perfectly fine to me. Stop pretending you need that wheelchair and get up and walk properly."

She explains politely that she can't; she's paralyzed.

"Oh no, you look just fine. That person over there, with no legs? Now she needs a wheelchair. You're just being lazy. You just need to try harder."

It so happens that our girl has crutches slung over the back of her wheelchair to help with little short "jaunts" (like from the chair to the bed) and she gets these down and tries to walk with them. For a moment, she does just fine, but soon she gets tired and falls down.

People in the crowd mock her; some of them call encouragement to her. A chorus of "you can do it, just try harder," and "stop acting like that, you know you can walk just fine, you just need to stop being so entitled." "You look fine to us. Get up and walk."

And with all this coming on her, she convinces herself that there's nothing really wrong with her, and she could walk if she just tries hard enough. It would certainly make her life easier in many ways, so part of her even wants to believe.

She tries and she tries. She tries every way she can think of. She takes all the suggestions they can give her. But still, she can't walk like they can. She can only drag her paralyzed legs along for a few steps with the crutches before she falls. The wheelchair works better but gets in everyone's way.
Okay, by now I'm sure you've seen the point of the story, but let me ask you this: what do you think of the people in the crowd? Was it okay for them to tell her "you look fine, just try harder?" What about the ones that were genuinely trying to help, and be encouraging? Was that okay? Or is telling a paralyzed person that they aren't, that they can act perfectly normal if they want to -- is that wrong? Isn't that bullying?
Autistic people are like the woman in the wheelchair. Our brains are _different_. No amount of "trying" is going to change that. Now, just like the woman in the wheelchair, we can use "crutches"--which would be learning social behavior by rote (like memorizing a multiplication table)--for a while, but it's exhausting to do and eventually, leaves us on the ground in a heap if we don't take a break.

Oh, and the other woman, the one with no legs at all? She's like a person with Down Syndrome; someone who has neurological differences that are physically visible to "normal" people. Nobody tells her that she just needs to try harder, because it's obvious to them that she is different. But people with autism most of the time look just like the "normal" (neurotypical) people do. So they, _you_, get judged as if you are a "normal" person.

NT people have this social behavior they expect everyone to conform to, but very rarely will you find anyone who does. They are just as hard on each other as they are on you. The problem is, you're not doing what you do because you're choosing to break the rules. You can't learn the rules the way they do. Your brain is simply different than theirs.

Please, be kind to yourself and let yourself stop believing that "you should know how to behave around people" and "there's no excuse." Imagine what you would think of someone telling that paralyzed girl "you should know how to walk" and "there's no excuse for acting like you need a wheelchair."

(I initially wrote this in response to someone who said (online) the two initial quotes in the last paragraph. Unless she tells me differently, her identity will remain anonymous. I just didn't want to take credit for the words that inspired me to write this.)

The Wall at the Edge of Hell

The Wall at the Edge of Hell

I've been through hell 
These past few years 
I'm saving my strength 
To get out of here 

When I see that wall
Stretching up so high
I'll climb right on up 
Reaching for that blue sky 

Sh, I've a secret
Sh, don't you tell
You'll never get out
Of your personal hell

The ground: it's a quagmire
The wall: it's slick jade
The sky's pretty now
But soon it will fade.

Hush, it's all right now
Hush, don't you cry
There's no one to hear you
No one to care why.

Determined and ready
I will reach the top
And when I get out
I'm not going to stop

You mean you don't know?
You mean "ya dinna ken?"
At the top people wait
To shove you back in.

No one wants the reminder
That hell is so deep
That one could open up
Right under your feet

And so they pretend
That there is no night
And please don't remind them
It isn't polite.

<I wrote this a few days ago. Obviously I was not feeling particularly optimistic.>