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

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.

Giving Thanks/Devaluing Lives

There was a weird thing I noticed in my facebook newsfeed on Thanksgiving: tons of posts where people gave thanks for their good health. Good health is not a *bad* thing, and I’m glad that my friends are feeling well, but I couldn’t help but notice the tone and the implication(s). Often, the statuses were along the lines of “everything is pretty shitty but ya know, at least I have my health.” This implies that if the health were to go, things would leave the realm of “pretty shitty” and enter “unimaginable horror.” Or maybe I’m reading too much into things. But regardless, these statuses definitely have one pretty obvious implication: a life without good/perfect/ideal health is significantly worse.

Hmm. How do we feel about that, Internet? I don’t feel so good about that. It makes me think of the way sometimes someone will ask me “how are you feeling?” and if I say “good,” they get this look in their eye like oh, you poor poor dear. This look says some combination of a) you must be putting a brave face on it! b) you must be lying c) I feel so sorry for you! and d) you really don’t know the meaning of the word “good” anymore, huh? Or, possibly, the ever-present e) all of the above. And sometimes they’re right, and sometimes they’re ballsy and follow up with “no, really, you can tell me,” and often they’re wrong.

Because sometimes I actually do feel good. Sometimes people who have less-than-perfect health wake up feeling good or perfectly fine. And no, thanks, it’s not some downgraded version of perfectly fine, it’s the same perfectly fine (for a lot of us, anyway).

So basically, to get to the point: this is ableism. Straight-up garden-variety ableism. The belief that a disabled or sick life is always worse, always less enjoyable (if it’s enjoyable at all), always worth less, sometimes so bad you should maybe just end it, that belief is discrimination against disabled people. And sick people. And fun people like me who are sickly disabled (lolz) (I just made up that non-term and it was super fun).

I don’t want to add to the noise (and there is a lot of noise on the internet right now trying to drown out what we should really be listening to) (by which I mean all the amazing and necessary writing and news about racism/Ferguson) (the links I have provided are only a few of the many things you should be reading on these topics, and if you have time to read this blog post, you most certainly have time to read about Ferguson as well) but I also can’t help but think that any time we allow a human life to be devalued, we allow things to get worse. And every day when I check the news, it seems like things (everything! racism, rape culture, ableism, and all of it personal as well as systemic) are getting worse.

[and ableism in the world is already doing really bad things. Disabled kids are getting killed by their parents. The media is perpetuating the narrative that a parent killing their disabled child is somehow understandable, or asking us to take a look at the parent’s side of things in cases of attempted murder. Things are really really not good out there in the world]

So I don’t want this to get worse too. I want you to know a lot of things instead. Here are some of those things.

1. My life is not worth less than yours.
2. I have a lot to be thankful for. I could do a whole list! But instead I’m doing this list.
3. Because disabled people can also internalize ableism, I am shamefully thankful for my “health” and my ability to pass as a healthy/non-disabled person.
4. Please think about your words! Words that you only mean as a comment on *your own personal* current situation can be read by *other human beings* and taken to have broader meaning. Because they do have broader meaning! It is very likely that you are writing “at least I have my health!” because society told you to value your able-bodied-ness above all else, and you should begin to realize that, much like racism and misogyny and classism and all our -isms, ableism is not acceptable and needs to be discussed/deconstructed/no longer tolerated. Please take note of ableism in everyday life and do what you can to combat it.
5. This is also applicable to other things! When you write “at least I’m not [insert “bad” thing here, like being homeless or starving or unemployed or fat]!” that devalues the lives of people who are those things/are in those situations.
6. For your own personal mental health: know that human beings are super strong things and even if you are/were disabled or poor or female or homeless or fat or ugly or starving or any other “non-desirable” quality (thanks, society) you are/would still be alive and that’s pretty exciting. You might even feel good some days. Also you could just blame society because all of this is society’s fault. Ugh, society, right? And then because humans can take action instead of just sitting around blaming society, you could write about things online or go to protests or petition legislators or become a legislator or find some other awesome way to change things. Go do that.

Fuck the white heteropatriarchy! And happy Thanksgiving.

The Ice Is Not Enough

Oh, the ice bucket challenge. You probably already know what I’m talking about, but in case you somehow don’t have Facebook/don’t have the type of Facebook friends who dump ice on themselves in shared videos (you lucky thing, you), click the links. 

 

I’m kind of not a fan? Is that bad to say? There are already a handful of things online about how the ice bucket challenge (a thing I refuse to capitalize) is a really self-centered form of activism (“look at me! I’m doing something good for the world! And aren’t I pretty?” -everyone doing the ice bucket challenge). 

I guess coming from my perspective, it feels a little different than that. Of course it’s self-centered, but most forms of fundraising for causes are self-centered. You do a good deed, but you also get a t-shirt you can wear that says something about how you did a good deed. You do a good deed, but you also get to ride around on your bike in front of cheering people who are afflicted with some terrible disease and then people give you medals. All of this is about drawing attention to the fact that you, good-deed-doer, are awesome and everyone should notice. At the root of this is money, the money that you are giving to the cause of your choice, but let’s be honest, that’s kind of not the point. And in the ice bucket challenge, giving money isn’t even the goal, it’s a cop-out for those who won’t dump ice on themselves. 

As problematic as that all is, let’s talk about the ice itself. Supposedly, the ice bucket challenge is done to simulate the symptoms of ALS and show the pain that ALS patients endure. A pain that, if you believe the ice bucket challenge videos, is suffered by young folks with nice tans in summer clothes outdoors, and lasts about 5-10 seconds and is then followed by giggling. What are we raising money for again? These videos are also intended to spread “awareness,” but awareness of what? In most of the videos that I’ve seen, the person only briefly mentions ALS/donating but doesn’t mention anything about what the disease is, where donations will be going, or even that the ice-dumping is (again, supposedly) about symptom simulation. They don’t even say “amyotrophic lateral sclerosis,” because what, that would be too many syllables? 

I know that ALS is not MS (though they share some symptoms, but ALS kills you, and MS doesn’t, etc), but I can’t help but imagine the MS versions of this challenge. The Spin Around Until You’re Dizzy and Throw Up Challenge? The Lie On Your Arm So It Goes Numb Challenge?  The Lie In Bed All Day With A Migraine Challenge? What about the cancer, Crohn’s disease or diabetes versions? These don’t sound like super entertaining videos. The reality is that most symptoms of diseases are not pretty, and simulating them doesn’t make for attractive little 30-second clips out in the sunshine, because they aren’t anything you want to re-create. Somebody somewhere decided that a bucket of ice was similar enough to the pain and numbness that ALS patients feel. Somebody somewhere trivialized illness. Did they have ALS? Are they a doctor? Maybe, but that still doesn’t make this an okay thing to do to the rest of us dealing with chronic illness. 

Back to those people biking around for attention I mean causes: earlier this summer, I stopped by (seriously, for like five minutes) the MS Bike-a-thon in my hometown and was horrified. I saw a lot of people riding around in the heat on bikes. I have MS, which means (for me) that I can’t deal with heat, or balance on a bike very well. Participating in the MS Bike-a-thon would be fairly close to impossible for me. It would involve a hilariously unflattering ice vest and like… training wheels. It wouldn’t feel empowering or exciting. Marathons for cancer and walk-a-thons for muscular dystrophy fall into that same category, it seems: do stuff that sick people can’t do to raise money for them. Why? I’ve heard the response of “we’re doing it for you,” and I wonder what you guys think that means. Do you think I would rather watch people who I’ve never spoken to bike “for me” or do something with them? I would rather talk to them and have a conversation and do an activity that we could all do so that they knew exactly who and what it was that they were raising the money for. I would rather be included than pitied. Fuck them biking for me, because as a disabled person, I value the things that I can do, and I value my independence. I don’t need people who I’ve never met to do things because I can’t. 

Maybe this isn’t the right answer for some people, those who suggest that it’s okay because face it, it’s raising tons of cash. I wonder, though, why the money needs to be raised like this? What about the “nothing about us without us” slogan? Sure, that’s primarily used in regards to disability-related policy-making, but it can also be applied here. What if, instead of sharing a video of yourself drenched in cold water, you shared a piece of writing or art by someone with ALS? Or someone with any of the many other diseases/conditions that affect people, which would also benefit from donations to further necessary research. We’re talking, our voices are here, and they’re why people should care (and donate, if they would like to and are able). Not because someone unconnected to the cause looked into an iPhone camera and laughed a bit before saying “come on, guys, it’s the right thing to do” and then dumped ice on their head. Because of us.