On: The Price of the Struggle

I wake up still ill. I have had this mad infection for weeks, I worried it might be tonsillitis, but it’s not. It never is, it’s stress and a gaping PA schedule. One shift here and one shift there.
My parents come to see me. Have you been living like this, my mother shouts. I explain, when I only have one shift a day or can’t be in the house for my shift cleaning is not a priority. My mother understands but is furious. She cleans and cleans and cleans. And we talk of class and matriarchy and love, a little new born baby. My cousin’s little son keeps me up.
I play her a new song I managed to find on Spotify:

“Hiya, here is Sally a wrench, an urchin from the street
Don’t come talk to me about misery
If you knew what I knew, if you had seen what I had seen
My goodness you would weep”

Structure hogties me. My father returns with a new kettle. The old one broke ages ago. I had a crying fit from it, the smallest thing, the cheapest thing. But so much of a hustle, I can’t both cook, clean and by a kettle.
He is calm and assertive, like me. Angry internally and not in the feisty way of my mother, and he says: They profit from you!
Profit, they earn money on me and then they don’t do their job. I think of Oslo, such struggles, such sorrow. I see myself weeping in her strong arms in the hotel room.

I get back on my feet. I compensate, I make a schedule for my PA’s I shouldn’t have to make. My sweet and funny and very gay friend calls me, we talk about taking good care of each other. I send him my draft for the Queer Mass prayer. Later that evening I have to txt him, saying I can’t go.
I try to be okay with that but I am not, I feel sad and worried, both let down by my body and the stress of malfunctioning structures (not bodies mind you) and like I am letting them down. I post about it on Facebook, and get the sweetest replies.

Yesterday morning I wake up still ill. Still, even though I felt better the other day. It’s a trope. I should stop but I push it. I tend to my impersonal hygiene. Someone helps me get dressed. I get going in a pricey cab, since taxi service just isn’t to trust.

We get there sickly early. I ask my PA to get me a coffee from the place next door, the caffeine rushes through my veins, ticks my heart into speed. Enhances twitching nerves and vocal chords.

We are supposed to be at the venue now, I try to take the lift upstairs. But it doesn’t work. Finally we meet a janitor who explains to us that the lifts don’t open on that floor until my talk is scheduled to start. I laugh at it then but inside something turns a switch.

And then I talk and talk and talk. Medical model. Bodies. My body. Other bodies. Her body. Power. Powerless. Cripplets. Sex. Desire. And it comes closer and closer and closer and in the end I am so tired of it. So infuriated and ill, my throat is heated and my skin is buzzing.
But you can’t tell, she swears. No one but her can tell.

The anger in my last talk is visible though, I fairly scream at the audience. I won’t put up with this. I won’t put up with inaccessible venues, crip-phobic attitudes, the feeling of being undesired.
We wrap up and I tell her as we leave: Yes I am going to go to that club now, but I will pay a price tomorrow.
And then we leave.

I feel okay when we go there, we speak of nail polish, how our brains are wired, what we do and don’t. And then we talk about going out for food first and I hear the tire in my own voice as I say, I don’t feel like walking those stairs more than twice.
It’s so inaccessible I weep inside, all the time. And I swore, in that talk with those crips I swore I wouldn’t put up with it. And look at me now. My mantra all the way down and in to the office backstage is it’s okay, it’s okay, it’s okay. I feel tired and ill but food helps. I get changed, or undressed, but I can’t help but think of my crooked legs. My tensed arms as they hold my weight up on my walker. And to be fair my tits aren’t that fabulous anyway.

We walk out of the office, I spot her almost immediately.
She spots my tits, and then my smile.
We hug, firmly.
I move on.

It gets crowded. I get in the way, my wheels take up space. People trip and don’t say sorry. I am too short; they don’t see me as they walk by. Legs like pillars, high heels, no crooked feet.

And then I spot it. The rush, the clattering of heels and boots. They run. They put one foot ahead of the other quickly and they run. The hunt, the escape, the catch and the wrestle. Able. Able to run. I look at my hands around my walker handles. My feet. Invisibly marked - no running. And the switch turns squeeking inside my chest. I walk around even more restless, I get tired, unfocused, even sadder for “no reason”.

I spot her again. She spots me as well, and not only my chest, and not only my walker.
How are you doing?
Not so well. I am tired, I need closeness.
We cuddle. And even more. She takes me backstage to a crazy concrete stair. It’s cool and silent, just us. I get to sit with her and be just the way I am. But it sticks with me. Able. Disabled.

When we get out of there it is even more crowded, she has to go work. I find them, the runners. They have stopped running now and they are sweet and kind. I try to engage in conversation but the dam the switch has broken keeps flooding it all out.

I walk backstage when she is done. The other runner has gone home now and we sit opposite each other. I weep. People come and go into the office and I don’t care. I speak of all, but the image of them running. It’s not okay, I can’t be this trigged by other peoples physical abilities. It’s weird, I am mad.

She asks me if I want go, and I say no. Throughout that night I lie. No it’s okay, I can stay. I am alright yeah, sure.
I say I am tired and it’s been a rough day, that’s true. No I don’t feel up to do what I normally do. Yes I desperately want power and authority and strength, that’s all I want right now but I can’t bring myself to do it. I am too tired. Please don’t assume it’s because I want the opposite. I would say if I did.

We finally go home. I curse the stairs on the way up. Yeah, they say. It’s not okay, it isn’t.
And then we walk and walk and every step is a knife in my chest. I can talk because it is too hard to even breath. I am too rough and I am too jealous. I am jealous of you running, chasing, escaping.
If I could I would ask, what’s it like, running?

I have to take several stops on the way to the cab rank just to breath. I don’t say anything. She says little. We find a cab, I get in and stutter my address to the driver. I cry as silently as I can, clasp her hand in the dark. I am mad, I am mad, this is dirty, this is too rough, I can’t be jealous. I can’t desire normality; it’s not good for the fight. I have said. I weep at the fact that I feel like such a fake, here have been telling people we shouldn’t compensate. Then what do I do? We shouldn’t expose ourselves to emotional pain, what do I do?

I am inconsolable when I finally get into the apartment. I lose it already in the corridor, big tears roll. I shiver. She says I am tired, she says I have had a lot of work put onto. I think of the fact that tomorrow consists of two uncovered shifts in my PA schedule. Isolation, inability and loneliness. And you can choose I think, you make choices all the time. And right now I can make none.
At the cusp of morning I tell, she urges me firmly and I do. I focus my gaze on my feet and I say. I felt so disabled. I felt so in the way and stuck in that space. And then I saw you run, you ran and she ran after you and I can never give you that. I am not that good.

It’s all full of the medical model bullshit I have slaughtered all that day and that is what sickens me the most, even I don’t get away.

She says it’s normal, I weep, she comforts me, she leaves.
When she’s gone I can’t sleep. I still haven’t slept, thirty-five hours later. Oh, so many thoughts, why didn’t I tell? Why is there so much shame? Why is there still that assumption between ability and power and why does it affect me even with people who know me the best? Why do I make such bad choices?

We talk of choice during mid-day: No but you have to understand I say, in situations like this I don’t have any choice, and perhaps I chose to do less productive things because at least that is a choice I have. And I think she gets it.
But is it this harsh not having PA-care because you are extra rough now? She asks.
No, I say. It is always this rough. But I cover it up, I can push through a day of isolation and no independence every now and then. I shut my mouth and plough through. But now I can’t.

But why? She asks me. Why!?
I don’t want to be a bother, I say.

We hang up and I call my mother. A mother of a daughter stuck between a rock and hard place. A mother of a minority member. A mother of one of those discriminated against. We talk about our common worry of becoming bitter. Sometimes people don’t understand she says, and I don’t want to tell them all, and all, and all of the time. And I agree.

Her understanding is comfort. After a while we move on to talking about patriarchy and capitalism. The price of the struggle.

On: Honestly…

I realized I haven't blogged in here in more than six months. I guess life has been intense, relationships crashing, being picked up, deepening. Me learning a lot of my own mechanisms trying new things, getting lovely offers, learning, despairing, crying and then all over again.

I have been pretty shook about recently – structural discrimination tripped me and let me fall face down into the dirty. I have struggled hard for my basic needs, and I haven't felt rough like this for years. Anxiety has still to wear off but I won, I fell, got up and won in no less than a week. But in between I revisited some very dark places, and I cried like I have never cried before.
But I do think I rode on something bigger than myself too, a wave built up by a true sense of community, family. Now I am trying my best, knowing everything is safe, to get back to what used to be mundane and usual. I am having a hard time feeling motivated about my studies and spring always make me want to leave. Just run, no looking back.
I think that has been one of the hardest things in these last weeks, I have had to e brutally honest, humiliatingly so, about my physically limitations, my feelings and my worries. I felt have like an open book. Transparent. As if my throbbing blood would show under my thin skin. Like there was nothing left that was personal and just me. Like there was nothing that was just mine, that wasn't public. Anxiety makes me feel that way too. Unworthy, a fake and a fraud, someone who anyone could find out. Bust. Like there has been no one there, I have just been faking it. But never making it. And it makes me want to run. Just run, no looking back.
Of course I know logically that is not true, I know a lot of things logically because I am smart, they say. And I know what I am. Of course I know what I am. But in these testing times I lose the map.

I lay, a mess, crying in my bed. I am not wearing any skirt, just panties and a top and she lies next to me on top of the covers. We quarreled because I didn't want to eat. She said I had to, I said fuck you, then I ate. We laughed about it – but still. I cry and cry and cry; I close my eyes and turn my head from her. She is too close and I have never felt so humiliated and scared, scared to the bone, terrified. This process is too much. The rug is pulled away from under my feet; it is not just an expression.

I am no good for you, I say. Yes you are she says, and she is not lying, I know that. Still I turn my head.
I get my head up in days to come. I do believe her when she says I am still what I used to be, I get angry more often than sad at all the mess and I find I have good friends.

Then it comes, like a strong punch, a fist to the face. My welfare officer, the man who raped my mind, and forced me to feel like a soggy lump of meat, that they could measure and pass around as they liked and decline the most basic help, he calls me. I see his number on the screen and I don't pick up. His voice on my voice mail sends my anxiety level through the roof. I know I have the upper hand on all this now; we have come that far in just a few days. My army, my generals in fitted skirts and all done up blouses and me, still I fall.

I send her a txt, it's short and précis – Hi, can you get me food. Something easy like soup, am in the pit…
She brings me tomato soup, bread and candy. I tear the bread up and dip in like a starving person in the silky red liquid. I feel hollow, carved out by sharp claws. I have fits of despair, I cry and cry and cry and the bread swells in my mouth.

You must leave, I say. I need to be alone.
She goes, without a word of fuss she leaves me. When she comes back she tells me she knew I had to make a decision. And I did.
I wail when she has left. I wail and hold myself up physically, I wrap my arms around myself and I hold myself tight. The way I used to when I was a kid and nothing helped, nothing but…
I look at the steal, it's slender and sharp and I stare at it mesmerized. But then I pull it back in and put it down. I didn't need to, I made the choice not to cut but now I am angry again. Furious at how far this has made me go, how anxious and terrified they have made me. To push me so close to the edge. I haven't cut in almost ten years and before then not since I was just a girl.
She comes back and we talk, I tell her and she says I was strong; I am strong, for doing what I just did. I didn't believe her then but I do now. I do know what I am. We write up the most horrendous medical model list of what my body cannot do. Humiliations lick the cavities inside my chest and she types and types and types. Seven whole pages.
That night I cannot rest. I dream he is in my apartment, that has been let in and no one has told me. In my dream I scream at those who have let them in, I tell them off like there is no tomorrow. And I wake up at 4.30 am and can't go back to sleep.
Before my reassessment with him I dress up, pencil skirt, stockings, short sleeveed bowtie blouse, sharp blue jacket, all my classy jewelry. I dress to find a power that has crawled back into the back of my bone, forced into hiding. Just moments before seeing him again I feel nauseous but breathe in and out firmly. Convincing myself he has seen nothing yet.
I reach my hand out before his when we greet, a sign of power I have been told. I use his name and I say, hello again S. He shivers, he really does and he looks at me, my representatives from the PA agency, and her, my general in a fitted skirt. And he says as he looks down, oh how many you are.

I sit opposite to him by the table but he doesn't meet my gaze once. I concentrate on sitting up as straight as I can, using my stage voice, calm and assertive. I own all the things he thought would humiliate me. I tell him point blank about all the fucked up quirks of cripfemme life, about periods, so called personal hygiene, sex and the changing of sheets. He stutters, and blushes. I breathe in and sit even straighter.
When we get out of there I feel like I have jumped from the highest cliff ever, adrenaline throbbing through my veins and I smile wide at her.
It was wonderful, purely wonderful, she says.

I was a mean mean cripfemme machine, and he was nothing but the little boy he is. I won. I did.

It's true I won. But I still think of him, it's only been a little over a week and it is like he haunts me. I worry I will see him at the tube stop, out an about. I conjure up his face in my mind and I feel anxiety rising. I have never been so terrified and wrung inside out in my life, and I quiver still.

I needed to get this out; I must travel the path of honesty so that other people know we can fight back. This will happen again, even for me. But I must bear witness that it can be conquered. I must change this, and don't worry he is not getting away. You can run Mr. Voldermort, but you can't hide.