body betrayal

living with chronic illness and disability is living with a body that is constantly betraying you.

i only speak from my own experience, which is that of someone who went from relatively healthy with a few weird but livable issues, to disabled, in constant pain, always fighting the truth of my own flesh.

because of it i’m stranded in between believing fully in the social model of disability and knowing that no matter how much we improve society, i’m still going to hate being this way. it will always suck for me.

there are people for whom the social model of disability fits completely, and that’s fine. but for those of us for whom it’s only a factor — well, it gets frustrating talking about it. because it seems like you’re saying nothing matters, we shouldn’t fix anything, things will always suck. or that you’re saying disability means being inherently broken or having something wrong with you.

when the reality is, you’re only speaking for yourself. and while no, being disabled doesn’t mean there’s anything morally wrong with me (something i still struggle to believe because of that great protestant work ethic hammering away at my psyche), the fact remains: i am broken.

Continue reading body betrayal

Hope in the face of numbness

This post was originally published on my Medium profile on January 6, 2016.


My left pinky has become permanently numb.

I don’t know when this started. Every day I press it, hard, to the palm of my hand, in the hopes that that feeling, that pins and needles, that signal to my brain that something is wrong with the flesh — in the hopes that will disappear. It never does.

My pinky has become permanently numb.

Continue reading Hope in the face of numbness

On Podcasts and disability

This should be said. I know that some of you are aware that I don’t listen to podcasts, but I’m thinking of doing one regardless.

I feel I should be clear on this. I have an auditory processing deficit. This doesn’t mean I can’t hear — my physical ears work fine. It does mean that what I do hear may or may not actually make it to my working memory, and from there on to my long-term memory.

So when you tell me something, I may not “hear” it. It doesn’t mean I’m not listening — I’m actually very good at listening, because I have to be — it just means my brain didn’t parse whatever you said well enough to store it for any length of time beyond a few minutes.

This is especially true when I’m stressed, when I’m tired, when I’m trying to multi-task, or when I’m not actually looking at the speaker/fully engaged in a conversation.

I hate phone conversations with people I don’t know, because if I don’t know you I can’t possibly visualize your face and how you would say the words you’re saying to me (yes, that is how I get through most phone conversations). Classroom situations can become stressful when the teacher talks too fast and refuses to slow down because I’m “not listening” well enough and I “shouldn’t have to take notes” (generally speaking my teachers are awesome about this sort of thing, but I’ve had one or two bad experiences). If I listen to a new piece of music, I can’t be doing anything else mentally engaging at the same time or I’ll have a small freak-out at not being able to concentrate on either thing.

A picture may be forming here, and I hope it lets you know why, generally speaking, I don’t listen to podcasts.

This does not mean I have never listened to a podcast or will never listen to a podcast — I have, and I’m sure in the future I’ll be able to sit down and hear one or two on subjects that interest me a great deal and talked about by a speaker who can fully engage my attention. But because listening to a podcast takes so much of my energy and time, as I can’t actually do anything else while listening to said podcast (not even ride transit), and I have precious little energy and time as it is (as should be obvious by how sporadically I post in my blogs), I can’t — in good conscience — dedicate said time to podcasts.

I realize it is a bit hypocritical to start up a podcast when one doesn’t listen to them hirself, but I’m okay with being a hypocrite if it keeps my mental health more or less on the level (you know, aside from the chronic depression and anxiety issues). I’m not writing this blog post to beg you to not see me as a hypocrite; you can see me that way and I really don’t care, because I admit to it freely and I’ve made my peace with it. I’m writing this blog post because I don’t think I’ve actually talked about my disabilities here (or in any other blog, really) and I felt it was time.

Why haven’t I talked about my disabilities in other venues before now?

Quite simply: lack of spoons and sporks. Spoons are units of energy; the term was coined in an article about spoon theory by Christine Miserandino regarding chronic illness. Forks are give-a-fucks, or units of caring. And sporks are a unit sort of in between forks and spoons. They’re when you give a fuck, but you don’t have the spoons to actually give a fuck because you know if you spend that one fork explaining, you’ll be out of spoons for a week or so dealing with the fall-out.

Part of me would really like people in my life to be aware of my difficulties so they can be prepared for my oddball behavior, but another — unfortunately large — part of me doesn’t want to be a burden on anyone, and doesn’t want to be seen as if I’m parading my disability around to try and get special treatment.

And then there’s the treatment I actually do get if I tell people I have issues (and not just of the auditory processing kind, either).

It goes one of two ways, generally. Either people are pitying or they’re complete and utter assholes.

I don’t tell teachers that I have issues because — generally — it’s not necessary to have a learning disability to ask the teacher to slow down when speaking or to repeat something so I can write it down. Able-minded people do this all the time in class, so why should I trot out my disability to ask for the same concession that any non-disabled person would get? Especially when it gets me a reaction of either “Oh, the poor dear, it must be so hard for her to even live in such a world, of course! Can we get you anything while we’re down here kissing your ass?” which is obviously borne of fear of a lawsuit and a complete disconnect from the fact that disabled people are, you know, people, or even worse (0r better, can’t decide) I get laughter, derision, or complete disbelief that I actually have a disability because I’m not whipping out a mountain of paperwork right there.

Well, again, I don’t go to disability services on campus because I can’t stand the pitying look I get from people, like I should be limping in there and making big doe eyes and talking about how hard life is but how I soldier on so they can look up to me for being so brave and bold and blah blah blaaaaaaah. Also, what’s the fucking point, when the only concession I could possibly need is for a teacher to talk like a human being and not a godsdamned Cylon hybrid. Not to mention — and here’s the kicker — my documentation isn’t from a doctor, so it would probably be seen as fake (even though it’s perfectly real and from an actual educational institution).

Outside of class, I deal with the same attitudes, except people don’t have to worry about getting fired so I get a lot more of the explicit “You’re faking it!” attitude, with people telling me to “Suck it up” because “Everyone has it hard.”

Yeah, fuck you buddy. I’m pretty aware that everyone has it hard — I’m part of everyone, remember? — and “suck it up”? What do you think I’ve been doing for the past five years? After being in Special Education for four years in High School I was so tired of being treated like I was abnormal by the system that I wanted to prove that I could do things like a normal student. I didn’t tell anyone at college that I have disabilities and it’s taken me this long to admit to myself that I can’t handle things like a normal student, that I need help.

And there is no shame in not being able to do things by yourself, there is no shame in needing to ask for help from other people. But you know what, tell that to the subconscious part of my brain, the part that has been conditioned by what we believe as a capitalist, consumer, individualist culture that believes in the North American Dream and pulling oneself up by one’s bootstraps and the “Self Made Man” and all that fucking bullshit.

Do you know how much shame I am feeling right now posting this? How much shame I feel whenever I ask for more time on an assignment? When I’m late with an assignment? When I can’t complete a test?

Do you know how many nightmares I have about getting bad grades? They’re right up there at the top of the list of Katje’s Brain’s Nightmare Favorites, along with murder, alien invasions, being abandoned, and sexual abuse.

I have had nervous breakdowns about tests. I have left class crying because I felt I couldn’t get something done. I have felt stupid, for no reason other than I am not as fast as some of the other students and I am constantly reminded of that.

And all these factors make me terrified to ask for help. Terrified of going to my teacher and saying “I am having trouble. I need more time.”

In the past I have skipped class because I got behind, and was ashamed to show my face, and ashamed to talk to my teacher about that, and once I started skipping class I got too ashamed to show up again because I hadn’t gone in weeks.

Sometimes when I wake up I lie in bed and cry for twenty minutes or so because I can’t shake the nightmare, the inner voice saying You’re such a stupid lazy bitch, you don’t deserve to live, you are so stupid, you’re dumb, you can’t handle simple courses, how do you ever expect to succeed at your dream job, how do you expect to graduate, no wonder it’s taken you seven years and you’re still not done, you stupid whore, over and over again until I really do want to die.

So, you know, when I talk about having disabilities and I am met with scorn and derision and the surety of neurotypical, able-minded people that I must be faking it to get sympathy, it really doesn’t fucking help with that whole shame complex thing.

Bottom line: believe whatever you like about the veracity of my disabilities. But keep it to your fucking self. I need your pity or your dickheadedness like I need a hole in my head — actually a hole in my head might be more beneficial, as it would indicate brain surgery and hells that might fix some shit who knows. Everyday I am facing depression, social anxiety, and not remembering what my partner or my best friend or my parents may say to me because my brain just can’t parse it all (and always manages to remember the most useless fucking shit I swear to gods I don’t know what the hell it is thinking) and sometimes it’s important, and I miss it, and I feel like a shitty human being because I should be more on top of this stuff, I should be able to be there for people I care about and remember shit they say.

So if you’re so convinced that I’m just whining for attention, or that I must be faking because I haven’t “proved” it to school that I have a disability and who in their right mind would do that (hint: I’m not in my right mind, that was sort of the fucking point here), or any other reason that I’m sure makes a lot of sense in the world of an able-minded person, please don’t tell me. Don’t let it show on your face or in your voice. Just accept that it’s my reality and move on.

Because if you were close enough to me that I would accept that kind of garbage from you, you wouldn’t be saying it because you would know it wasn’t true.

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This turned into a rather large rant, and it should be said that all instances of the word “you” are meant in a general sense and not aimed towards any one individual or, indeed, the general audienceship of this blog. “You” just seems to be the easiest audience to speak to when one is ranting.

So yes, I am probably going to be doing a podcast, and I am aware that this makes me a hypocrite and I am fine with that, and I am fine with you seeing me as a hypocrite, if you do.

The rest of the rant was said because…well, a dam burst and it got said. Mind the waters, and keep your lifejackets handy. There’s lots of anger around these here parts. Easy to drown in it.

-Katje