My Body, the Always-Earthquake |Non-Fiction|
The woman who works at my local post office offers to rewrite the address I have scribbled on my package. Because I like the packages I send to reach their destination, and because at 23 my handwriting is practically illegible, I accept her offer. Her kindness is an accommodation I have come to appreciate but not expect. It is mid-afternoon on a Tuesday and although I haven’t forgotten, I am again reminded of the way my body works, or more specifically, how it doesn’t.
One test commonly used to diagnose or evaluate essential tremor consists of the person drawing a spiral. The spiral on the left was drawn by someone affected by essential tremor. The spiral on the right was drawn by a person not affected by essential tremor.
Mundane things I would do if my hands were steady: Decorate cookies, try my hand at bartending, order soup at restaurants, fill glasses to their brim, carry food to the table, write manually, shake hands with strangers, pay for things with change, wear contacts, hold a tray, drink with one hand, not spill coffee on myself as frequently, and many others.
I first wrote about my disability during my first year of college in an essay for a writing class that would later be published. The 12 years of school that led me into university negatively shaped me, but not in ways unforgivable. I was aware of the differences granted to me by higher education; I no longer had to consider which parts of enforced curriculum I’d be forced to anticipate having to work around. I wouldn’t have to wonder how I’d pour the solvent in chemistry; I wouldn’t get scolded for being unable to juggle in gym class. Guidance counselors and teachers would no longer be obligated to report me for what they assumed was a sign of something else, more reckless and recreational., drug use or alcohol, something of the sorts. College gave me the freedom to write, even if still illegibly, my own stories of disability.
Diagnosis: Essential Tremor
Onset: Any age, but typically after 40
Possible links: Genetic
I am nine years old the first time my family notices it. Because I have only ever lived in my body, I self-accommodated without much attention. My hands, the ones that could not move with fluidity, were the only hands I knew how to have. The doctor’s appointments were boring; I didn’t care much at the time to find a solution. My disability didn’t register as a problem to me, it was just a difference.
Things I wish I would’ve said in response to people’s interrogation of my body:
“I wasn’t nervous before but now that you mention it, I think I should be.”
“Are YOU cold?”
“I’m actually not okay, but my body is working just fine.”
“I know it’s not what you asked, but I drop food on the floor all of the time and ultimately still eat it.”
“It’s the espresso!”
“Is having 10 espresso shots in one sitting too many?”
Early on in school, I was corrected for doing things wrong: the pencil didn’t rest in my hand the right way, scissors always held by the wrong two fingers. Hadn’t I been paying attention when we learned? In learning what I was supposed to, I crafted ways that would allow me to get things done in equal or close time. I still hold my writing utensils with a strangling death grip.
Peers were not unaware of the differences. I earned names like Shaky, Vibrator hands, was reminded as if I could have forgotten, the constant earthquake of my body. In sixth grade, a time before I knew much of anything about sexual intimacy, a male classmate told me I would probably give a great handjob.
My body does not work as it’s supposed to, and over the years it has worsened, the unsteadiness expanding to other parts of my body: voice, head, and legs. My body does not work as it’s supposed to, and it’s not directly known why. PET scans and MRIs can only say so much about the brain. Neurologists I’ve seen, some unfamiliar with the disorder, cannot offer complete solutions, only prescriptions with off label uses or extreme possibilities such as surgery—an option I reserve for someday.
As a teenager and young adult, my indifference to the trembling of my body started to shift into disdain. Comments, questions, and interrogations edited the landscape of my comfortability, inevitably and permanently changing the way I navigated social interactions.
Questions I’ve been asked regarding the ambiguity of my tremor:
“Are you all right?”
“Are you nervous?”
“Why are you nervous?”
“Are you cold?”
“Are you hungry?”
“Why are you shaking?”
Having a disability, I’ve learned, requires a constant knowledge of what you look like to others. Even as you are comfortable with your body, with yourself, there will always be someone who isn’t. Because ableism is so culturally ingrained and not often confronted, being a person with a disability can mean developing a deep and sometimes burdening hyper-awareness of the perceptions of those around you.
I think of it as the mind’s self-defense mechanism, unwillingly invented. If I can predict the reactions of others, perhaps I can avoid the ensuing confrontation I am so painfully dreading.
I tend to avoid situations where the close movements of my limbs can be tracked; I typically ask my boyfriend to assume the small public tasks I either can’t do or am embarrassed to do, the embarrassment existing, not because my body works differently, but because the perceptions of my ambiguous body are particularly unsympathetic. My disability, while obvious, is not obviously a disability. I’ve been met with, on too many occasions to account, judgment in the form of a disapproving look or continued stare. I know what my body looks like to others. I know the assumptions without needing to be told them.
I’ve allowed myself ambivalence, the ability to be proud of my disabled identity but also feel self-conscious about the symptoms of my disability. Can one be both proud of their disability and simultaneously ashamed of its effects?
With the reclamation of my disabled identity in my adult life, I have contemplated whether or not I am disabled enough to contribute to the public discourse surrounding disability. I do not fit into the cultural portrait of what disability looks like, yet I am constantly reminded of the spectrum in which disability exists, and the importance of bringing to light, the existence of all forms of disabilities. What does it mean to be a piece of such a wide, diverse spectrum?
Public instances of “disability shaming” are not an anomaly. People with accessible parking passes are frequently shamed for appearing “too able-bodied.” The call for a nation-wide ban on plastic straws blatantly ignored the communities for which a straw is more than an amenity. Ableism insists that it knows disability better than us, that it can define and diagnose what the societal portrait of disability should be. Part of our role in resistance to ableism is countering those assumptions and emphasizing that there is no one clear definition of disability.
At 23, I now challenge these same questions of disability in the college classroom where I teach composition, the same course where I began writing my personal story of disability. In my course, one that focuses on the intersection of identities, both those visible and invisible, I am constantly emphasizing the importance of repositioning our assumptions and unlearning those which have been ingrained in us. Countering the narrative of disability involves evaluating the role we play in that narrative and eliminating the us vs. them mentality that we have so often adopted.
I still shake. I tell my students on the first day of class about why I do in an effort to reclaim my narrative. My body, the always-earthquake, reminds me daily that I do not exist for the sole purpose of stillness. My body does not work as it’s supposed to, yet it works as it’s supposed to; consciously and unconsciously redefining the normative.
Danielle Shorr is an MFA student and professor of rhetoric & composition at Chapman University forever trying to make the transition from poetry to fiction. She has a fear of commitment in regard to novel writing and an affinity for wiener dogs. When she’s not staring in awe at her newly installed bookcase, she’s most likely consuming short story collections or curating her list of Orange County’s best eats. Her work has been published by MTV, TheNewVerseNews, Maudlin House, Rhythm & Bones press, StoryNews, and Entropy Mag.