brightrosefox: (Default)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: [livejournal.com profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.

*THAT* SHIT IS INSPIRATIONAL.

So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
*****
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.
brightrosefox: (Default)
I just recovered from a simple partial seizure. I would like to clarify some things if only as a record for myself.

This is not a panic attack
I just got asked again if my seizures might just be panic attacks and how could I tell the difference. I am starting to hate that question. I feel like sometimes people don't believe me. Yes, there are many striking similarities. But there is a big difference.
Most of us have had panic attacks. We know how scary those are. But they are of an extreme nature and do not have that dreamy, alternate reality sensation of a seizure. Panic attacks make you feel like you are dying. Seizures make you feel like your brain has traveled to another dimension.
Let's compare:
http://en.wikipedia.org/wiki/Panic_attack
http://en.wikipedia.org/wiki/Simple_partial_seizure
Voila.

But I often remember, thank you
What irritates me is the most people in the medical field researching epilepsy say with conviction, "People who have complex partial seizures do not remember what happened."
I feel freakish, then, because I usually do. So I set the record straight. Sometimes I remember all of it. Sometimes I don't remember what happened, only how I felt and maybe things I did or thought I did. Sometimes I only remember bits and pieces, not enough to get a whole idea. And, sometimes, I don't remember anything.

There we go.
brightrosefox: (Default)
I just recovered from a simple partial seizure. I would like to clarify some things if only as a record for myself.

This is not a panic attack
I just got asked again if my seizures might just be panic attacks and how could I tell the difference. I am starting to hate that question. I feel like sometimes people don't believe me. Yes, there are many striking similarities. But there is a big difference.
Most of us have had panic attacks. We know how scary those are. But they are of an extreme nature and do not have that dreamy, alternate reality sensation of a seizure. Panic attacks make you feel like you are dying. Seizures make you feel like your brain has traveled to another dimension.
Let's compare:
http://en.wikipedia.org/wiki/Panic_attack
http://en.wikipedia.org/wiki/Simple_partial_seizure
Voila.

But I often remember, thank you
What irritates me is the most people in the medical field researching epilepsy say with conviction, "People who have complex partial seizures do not remember what happened."
I feel freakish, then, because I usually do. So I set the record straight. Sometimes I remember all of it. Sometimes I don't remember what happened, only how I felt and maybe things I did or thought I did. Sometimes I only remember bits and pieces, not enough to get a whole idea. And, sometimes, I don't remember anything.

There we go.
brightrosefox: (Default)
I just recovered from a simple partial seizure. I would like to clarify some things if only as a record for myself.

This is not a panic attack
I just got asked again if my seizures might just be panic attacks and how could I tell the difference. I am starting to hate that question. I feel like sometimes people don't believe me. Yes, there are many striking similarities. But there is a big difference.
Most of us have had panic attacks. We know how scary those are. But they are of an extreme nature and do not have that dreamy, alternate reality sensation of a seizure. Panic attacks make you feel like you are dying. Seizures make you feel like your brain has traveled to another dimension.
Let's compare:
http://en.wikipedia.org/wiki/Panic_attack
http://en.wikipedia.org/wiki/Simple_partial_seizure
Voila.

But I often remember, thank you
What irritates me is the most people in the medical field researching epilepsy say with conviction, "People who have complex partial seizures do not remember what happened."
I feel freakish, then, because I usually do. So I set the record straight. Sometimes I remember all of it. Sometimes I don't remember what happened, only how I felt and maybe things I did or thought I did. Sometimes I only remember bits and pieces, not enough to get a whole idea. And, sometimes, I don't remember anything.

There we go.

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