First Fiction (!)

Hi friends,

Just wanted to let you know that my first published short story, “These Are Only Seeds,” is now available on Amazon as a Kindle Single. It came out last week in Amazon’s literary magazine, Day One. 

Hope you’re all having a lovely December, happy Hanukkah and happy Doug Jones day! (it’s a new holiday, right?)

–C

New Mini-Essay (Again)

Hi friends,

I wrote a mini-essay about the fight for healthcare, switching medications, and getting married. You can read it here. As always, get in touch if you’d like to, and thanks for reading.

Love,
C

New Mini-Essay

Hi friends,

If you follow me here, I wanted to link y’all to a new mini-essay I published this morning about disability & the election (I know, how many more election essays can this world hold, but it’s almost over, right?). Also, it’s about my new favorite hat, which looks like this:


That’s my best anti-Trump face.

❤️

On (In)Visibility

Today is the last day of MS Awareness Week. Today at brunch with friends, I brought up MS more times than I needed to, I brought up MS every time it was tangentially relevant. Last week I had a scleversary party to ‘celebrate’ 5 years of MS and invited my entire MFA program. A few weeks ago in a poetry workshop, I wrote poems about MS when I could have written poems about other things. I read an MS poem out loud when I could have been quiet instead. I write posts on facebook about MS when I have other things to post about, other things to say. I turned in a poem about MS to another poetry workshop when I could have turned in any poem. Two days ago I had coffee with a former student and talked about MS and disability when we didn’t need to talk about those things. A week ago I tweeted during the debate between Clinton and Sanders, specifically making note of ableist rhetoric when it cropped up. Last week I brought a poem by another disabled writer in for a class discussion when I could have brought anything, by anyone. These were all conscious choices on my part.

 

 

Can I say that I find all of this exhausting? Can I say that I am exhausted?

 

 

I am currently making an effort to be a part of the disability visibility movement. I like the personal nature of visibility, I like the idea of putting my disability in people’s faces when they’d rather not see it. I like the idea of putting a cute selfie on Instagram and captioning it with what’s actually happening in my life instead of with emojis. I think it’s cool when then those posts get more likes, when people pay attention because I’ve given meaning to actions, to pictures. But I am tired.

 

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disability visibility: utter exhaustion, w/ 🐰

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I’ve talked about this before (when I was 19, less eloquent, and more full of feelings, but whatever), but I don’t like the idea of awareness. Awareness is neutral. I am aware of so many things without caring about them. I don’t know that there’s much difference between visibility and awareness on a practical level, if a reader would have a different emotional reaction to “MS awareness” than they would to “disability visibility.” I don’t know if my own affinity with the language of visibility is in part due to my discomfort with the wider MS community, with their orange ribbons and bike-a-thons and the way they share years-old news articles about medications in facebook groups. The way they share their marriages in MS facebook groups as miracle news, the way it seems like they don’t expect to be loved. I don’t know if it is fair for me to talk about those things. If the issue is that the wider disability community seems “cooler” to me somehow, if that perceived “coolness” has more to do with the neurodegeneration and low-information status of other MS patients than with any actual flaws in their terminology. I don’t know how to do this, how to critique without punching down.

 

 

 

And I think a lot about how being visible is for me a choice, and for many others a given. How doctors often comment on how healthy I look. How friends comment on how healthy I look. How even strangers comment on how healthy I look. How my cute selfies on Instagram could be captioned with anything I would like to type with my mostly-functional hands because my disability is invisible unless I choose visibility. How I smile at strangers with visible disabilities and then hate myself and then forgive myself and then unforgive myself because if I cannot make my actions meaningful, if I cannot make my smile meaningful, if I cannot say “me too” in the moment, I look like just another able-bodied stranger thinking well how lovely that you’ve made it to the grocery store in your wheelchair, and I know that if I were that person, my response would be fuck you. And how do I give meaning to actions without being intrusive? How do I navigate invisibility? How do I justify saying “disability visibility” on Instagram when it’s just a picture of a young woman in a sweater who’s rocking really decent eyeliner, it’s just privilege, it’s just barely counting. How do I?

 

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scleversary 5 // 🙈

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Today is the last day of MS Awareness Week but I will keep having MS after today. So will a lot of people, more than 400,000 in the US alone. Today is the last day of MS Awareness Week but I would like to continue to be visible, to speak up even though it is exhausting, to navigate even as I learn how to. To pay attention to others’ disabilities and to act in ethical ways. To learn to practice radical accessibility. To not shut up about ableist language, to police my own ableist language when I slip up. To think critically. To revise any of this when I need to, to practice self care. To keep talking, mostly. Mostly that. 

on gravity

Rape is not the same for everyone.

For me, it left a strange gravitational pull. The kind that would lead me drunkenly to stand outside our freshman dorm in the other three years of college, the kind that let me recognize the shape of my rapist’s body standing across the football field, the kind that led me over there to sit on a bench near him and pretend to read. It was a gravity in me that didn’t want him to forget, or didn’t want me to forget. Both. I orbited around him and his former dorm room for four years.

I wish that instead we had been magnetic fields that repelled each other, that I could have transferred to a faraway school and led an entirely different life, found new friends. It was early enough into the school year that if escaping had been my focus, it would not have been hard.

It happened on September 3rd and now I want today erased from my calendar, or I want to linger in it forever, or everything at once

Rape is not the same for everyone.

Some people kill themselves. Some people kill their rapists. Some people decide to lead life to the fullest. I did a lot of just hanging around. I took a lot of classes and joined clubs and drank too much and cried in public.

Rape is not the same for everyone.

Probably he doesn’t know that this day is significant. Maybe he thinks I’ve forgiven him (for awhile, I thought I had). There is no such thing as forgetting. There is just: five years ago this happened. It was nothing special. It was not how I thought college would go. It changed me forever or I am just the same as I would have been. I want this day to not exist or I want to tattoo it on my body so everyone knows. I want my friends to hold my hand or to pretend that nothing is wrong. I want to be alone or surrounded. Rape is not the same for everyone, it’s not the same for me from moment to moment. Maybe I’ve said all of this before, in different words. Maybe I should stop talking about it. 

We orbit from afar now, no longer stuck on the same small college campus. I don’t know where he is. I don’t know if he knows where I am. but I feel that gravity, still. I feel the pull toward a little dorm room in the middle of nowhere, Connecticut. I feel the pull toward familiar darkness. There’s not a distinct light at the end of any tunnel, there is no tunnel, there’s only some vague idea of forward, of breaking free. Floating, maybe.

four years later / after / in

[four years sounds really long to me]

I feel like I don’t want to claim to know what I’m talking about anymore. Like for a long time I’ve been doing some kind of weird chin-up-soldier act where I pretended all of this was fine and I knew enough to understand it all. That doesn’t feel true anymore / maybe it’s because everything is changing all the time.

Like every medication on the market can kill you, they just have to figure out how so they can put it on the label.

Like we’re just starting to understand how to conceptualize MS and I don’t fully see what’s different now from how we thought of it before.

Like I can switch from one medication that inexplicably maybe works to another that inexplicably maybe works and my doctor and I can just shrug our shoulders at each other.

Like real science feels like folk science.

I finally made a friend (or two) with MS in the past year. I think that’s been good. Though in talking to friend(s) I want to be able to give advice / to know things / to act like I know things / to lend some stability and I just can’t. It would be a lie, you know? Talking to T (one of said friend(s)) about MS is like

T: my brain’s already killing itself
C: mine too
T: my dean told me to think of it as a life companion and it’s like
C: [laughs]
T: I would hope I don’t end up with a life companion that is slowly killing me?

T: we can, as the children say, “turn up”
C: literally almost posted a status this morning that was just “turn down for MS,” but nobody likes my MS joke statuses
T: MS joke statuses are my fave. Did I ever tell you the joke I told to the psychiatrist they assigned to me post-diagnosis?
C: no, tell me!
T: he was all, how are you dealing with this news blahblah. And I was like, I’m kind of still in shock…I knew I had self-destructive tendencies but MS is a bit much

C: people are always like “why didn’t you take years off between college and grad school” and I don’t wanna be like “because my brain is dissolving and this shit is degenerative and I want to finish school with as much brain as possible.” People act like even bringing it up is a buzzkill or like suddenly the conversation has to be intense or awkward. Also, omg, “I’m so sorry.”
T: Exactly!
C: Like oh, are you sorry about my life?
T: Don’t even get me started. Yes!!
C: and “if that happened to me I would kill myself”
T: they think it’s a compliment about our strength as people. But like. WTF.
C: Instead it’s like “btw you should kill yourself.”
T: Exactly. Like it’s hard to keep going every day knowing how my body could one day end up. I don’t need to hear that shit now.

I think what I’m trying to say is that 1 year after diagnosis and 4 years after diagnosis don’t feel very far apart. I think what I mean is that I just get more confused and lost.

Which isn’t to say that I need anyone to explain anything to me. I read. I research. I take disability studies classes, I’m in a very depressing (and very active) MS facebook group, I am aware of news and new research and new problems (always new problems, never new solutions). It’s just that all the reading and the researching and the thinking don’t get me any closer to solid ground, any more confident in what the future of me or my disease might look like.

I feel really tired.

I still think “my screen is blurry” before I think “my eyes are blurry.”

In the past year I’ve done some things my first doctor said I wouldn’t or shouldn’t: graduated college, pulled some all-nighters, taken some hot showers, been to the beach.

Today I almost passed out at the gym. And that was with doing everything I’m supposed to be doing already to not pass out at the gym. Please don’t tell me not to do things that make me feel better. It’s just that some problems are unsolvable, I guess.

Should this be a happy blog post / should I come to some neat and meaningful conclusion / should I say a lot of thank-yous (there are always a lot to say) / or maybe a lot of fuck-yous (equally many) / should I quote someone else with MS who inspires me / should I post a joke or a picture of me looking happy / should I distract you with something cheerful so you can forget about all the other stuff I just said / where’s the pretty bow to put on everything / how do I leave you thinking of me as wise or inspiring or brave or strong / maybe I don’t / I feel really tired.

Lecture Notes!

My mom and I did a really cool thing today! We did the Eleventh Hour Lecture at the Iowa Summer Writing Festival. It was fun. Our topic was “Approaches to Trauma Writing.” Some people in the audience said they wanted our lecture notes, and I said I would post them on my blog so they were easily accessible. I’m putting in a page break so they don’t clog up my main blog page, so you’ll have to click past if you’re interested. 

Thank you so much to everyone who came to the lecture! It was a really great experience. 

Continue reading “Lecture Notes!”