keeping secrets is my superpower, but I don’t want it anymore #disabilities #ableism #writing

Last weekend, after I published a rant about inspiration porn, I received several responses from able people suggesting I shouldn’t be angry because their intentions are good.

It sounded an awful lot like that fateful workshop in my MFA program when a “critique” of my essay about epilepsy consisted of classmates lecturing me about my “unfair” emotional responses to spoons getting crammed between my clenched teeth, strangers petting my hair, and unnecessary ambulances. I know people’s intentions are good, but that’s their subjective reality–not mine. My subjective reality is cracked teeth, astronomical emergency room bills, ER doctors treating me like a drug addict, and a lingering sense that my body doesn’t deserve boundaries.

Simply by sharing my subjective reality, I was “hurting their feelings.” Never mind how their reactions hurt me.

Looking back, I don’t think my classmates were reacting to my anger, though. I suspect they were reacting to statements like this:

Order is unhealthy. Order is a disorder.

It makes able people uncomfortable when they realize I have no interest in being neurotypical. It upsets the status quo because it means they are not superior beings with superior brains. After all, that’s the assumption underlying gaslighting: We know better than you do. 

The word "nope" appears on a black background.

I call that workshop “fateful” because that’s when I realized nonfiction (as a publishing enterprise, anyway) isn’t actually about telling the truth. It’s about conforming facts to a reality that bears no resemblance to mine. For a long, long time, I stopped portraying my subjective reality around disabilities. The funny thing is, the more I essentially “lied” (by omission), the more people saw my work as “true.”

Now, the same-old stuff is playing out in reactions to my essay, Strange Flowers, which recently acquired new readers thanks to being a Notable in Best American Essays 2015. Several readers demanded to know whether the piece is “fiction.” Others were curious if it represented some kind of amalgamation or composite, rather than straight-up memoir. Most didn’t seem to question the facts–that I had been sexually abused–but they most definitely questioned the way I processed those facts.

Strange Flowers is almost like a “coming out” piece in representing how my mind works. This is literally how I process memories, emotions, sickness, grief, and trauma. It’s how my brain works. Plain and simple. I knew when I wrote it that people might find it a little “weird.” I didn’t realize how weird.

Who is to say seizure auras, manic episodes, PTSD flashbacks, and dissociation aren’t every bit as “real” as any other experience, though? To me, they absolutely are. Frankly, what many people describe as “normal” cognition sounds alien and bizarre to me. When people ask me to critique their work, I sometimes get the urge to “magic” it up. But I recognize it’s my subjective bias doing it, and I tell my inner self to shut the hell up. I know other people experience the world differently, and I accept it. I take their work on its own terms.

The funny thing is, people will tell me the bipolar and epilepsy make my work what it is, that somehow it magically pops out in this quirky structure, but that is so far from the truth.

Right now, as I work on the book-in-progress, I am ribcage-deep in notebooks filled with unintelligible scrawl like this:

notebook page with my handwriting; words are scattered all over and mostly illegible

I filled those notebooks during a manic state so intense that I often describe myself then as an “alter ego.”

And yet, my alter ego is still Karrie Higgins. I am still her. I have to spell it out for people because do you know what happens when I admit to friends and fellow writers about these “altered states?” They rob me of credit for my skill and hard work. They say, “OH WOW, I wish I had that!” or “No wonder!”

The thing is, I could leave the notebooks a big, fat mess. I don’t, because I am a writer, and I know how to fucking write. I took Strange Flowers through at least 50 hardcore structural revisions. I did that in what I call my “wind tunnel” state, which is how I generally write: zero emotions, an empty feeling in body and mind. That’s when my writing gets done.

And the truth is, I am terrified to admit any of what I just said.

You know the old trope about how people with disabilities adapt by developing superpower senses? I developed the superpower of keeping secrets. I did it because people were always grooming me for their personal agendas.

My medical chart is a wasteland of notes from neurologists who claim I was not “appropriately” upset about seizures, therefore placing me under suspicion of conversion disorder or malingering to get attention. Want to know why I appeared calm and unruffled? Because when I did express my true emotions, I got pathologized for them, too. My mother and my doctors saw me as unreliable, depressed, potentially insane. It’s why I didn’t even know about my Chiari until I was 39 and all my epilepsy prescriptions got revoked (until recently). All my neurological symptoms got written off.

Not only that, but the doctors never actually asked how I felt. They observed my behavior and assumed.

Grooming. I used that word on purpose. I wanted the connotation of abuse. I mastered the art of suppressing my feelings as a child growing up physically, sexually, and emotionally abused. Because guess who else told me it would “hurt them” if I spoke up? That it was “wrong” to get angry?” That, in fact, I wasn’t being harmed at all because nobody intended any harm? That nobody is going to listen to some weird, fucked-up, angry girl? Yep. Abusers.

I figured out quickly that my expert emotional cloaking skills came in handy facing neurologists, bosses, friends, teachers, child abuse investigators, coaches, and the like, too. When people tell me I “shouldn’t” be angry, it feels awfully damn familiar.

But here’s the kicker: People pathologize me when I’m not angry, too. I frequently receive comments to the tune of, “It makes me very uncomfortable how you aren’t angry at your brother.” Never mind it has to do with my dissociation and de-realization. Never mind I have the right to feel about him how I fucking want to feel about him.

I can’t win.

Why should I have to keep secrets to maintain able people’s comfort? So many people told me I made them uncomfortable by ranting about inspiration porn. No matter that after one of my toughest weeks of symptoms in awhile, when I was at my lowest, inspiration porn plummeted me into a pit of depression. It actually made me question the point of going on.

Instead of harming myself, I decided to write something. To speak up. I did it during a time when it was fucking hard to find words, and I wrote from pure emotion (a rare state for me), without worrying too much about precision, because at that moment, precision was sending me into a spiral of word-finding hell. I was my true self, and for me, that’s something. That’s a big fucking something. I wasn’t going to write cheerfully about shit that made me want to die. OK?

What I’m saying here is, telling the truth is healthy. Telling the truth saves my life.

Remember in my previous post how I mentioned having a seizure on the track, and my coach scolded me, told me to “Have some pride?” That happened within the same 24-hour period as me getting questioned about a black eye that my father gave me and lying about it … just as I was groomed to do. I was a stone-cold, expert faker of emotion that day, and it worked. My father was off the hook.

It was also the same 24-hour period I tried to kill myself.

I don’t remember the events in such a neat, logical timeline, but it makes sense to me looking back: Keeping secrets is deadly.

And that’s exactly what people who tell me I shouldn’t be angry (or fill-in-the-blank-here) are suggesting I do: keep secrets.

Secrets might be my superpower, but the thing about taking off my mask is that I can’t put it back on.

6 thoughts on “keeping secrets is my superpower, but I don’t want it anymore #disabilities #ableism #writing

  1. Many people are made “uncomfortable” by my blunt truths as well. The whole world just wants you to put on a happy face and pretend, so they can feel better about their lives and not think about the ugliness of truth. I’ve lost many friends this way, and no longer bother telling most people my truth. This is why I write. I admire your courage, your process, your truth and honesty. And I understand how and why it saves your life. The “able” people will rarely take the time to understand or care, continue doing it for you.
    All the best…

  2. I read this piece. Then I read “Strange Flowers”. After reading what you said about inspiration porn, I hope this doesn’t come out wrong, but I have to say both of these pieces were inspiring.
    Maybe I’m neurotypical. Maybe I’m not. I’m certainly able, so as a relatively “normal” or “able” person (who is often not seen as one by actual normal people, if there really is such a thing) I will say this: Neither your words, nor my understanding of the cognition processes that went into them make me uncomfortable.
    I’m just a stranger on the internet, so you certainly don’t need any kind of validation from me. (Nor do I assume you need me to remind you of that.) But as a stranger on the internet I just want to say that after reading your words, I accept you. You are valid, legitimate, and have every right to exist as you desire or are at least capable of.
    If anything I put in this comment offends or hurts you, then allow me to apologize in advance but know that no offense or hurt was intended. Otherwise, feel free to ignore me.
    Either way, your words are worth reading. Surf Wisely.

  3. Yes, yes, and yes! I didn’t learn about my Chiari until I was nearly 46. I’ve had temporal lobe seizures all my life but nobody knew about them until I had a grand mal at 21 because of the way I had been forced to keep secrets when I was young. You describe so beautifully and so succinctly here how difficult it can be to navigate the world when you are in some way viewed as (and when you process things around and in yourself as) different from the accepted norm. I really love how you talk about this. People who dissociate, for example, *do* see and experience the world around them in a different way, but who is to say that is “wrong”? Who is to say that the voices aren’t real?

    Telling the truth is definitely healthy. People sure make it hard, though.

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