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The Journal of Multimodal Rhetorics

ISSN: 2472-7318

Journaling as a Tool for Self-Care and Identity Formation: My Epilepsy Notebook

MiSun Bishop

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Keywords: disability; graduate student; epilepsy

Categories: Revisionings of Teaching, Facilitation, and Professional Leadership; Disability, Illness, and Survival (When the World Doesn’t Want You To); Writing the Process of Writing


I have lived with occipital epilepsy since I was a child. In October 2020, I experienced a pivotal moment: I had my first seizure in graduate school. My seizures had been well-controlled with the help of medications, but additional stress brought on by the online transition during the pandemic had increased my risk of auras. Up until that moment, I hadn’t participated in the field of disability studies due to the episodic nature of the neurological disorder, and I didn’t think I had much to offer. I hadn't brought up my epilepsy in the classroom up until the seizure event, but the incident pushed me to think about the politics and implications of disclosure.

 In disability studies disclosure is often framed as a voluntary act; however, my condition becomes visible to others against my will when a seizure occurs. Much of the time I cannot decide whom to inform about my epilepsy and how. I am unconscious during my seizures and cannot speak nor explain what is happening. I started to think that the particular case of epilepsy could add complexity to conversations in disability scholarship about passing (as able-bodied) and identity.

For years I had utilized writing to record the most basic facts of the physical experience of my seizures: their duration, context, severity, etc. A typical entry in my epilepsy notebook may look like this:

12/16/2020
Time: Around 4:30pm

Activity before seizure: Schoolwork on my laptop on couch; since 2pm
Episode: vertigo; felt like couch was rocking back and forth
Duration: Less than 2min; no confusion nor loss of consciousness
Post seizure: drank water once stable; normal rest of day

None of these entries contained the emotions, self-reassurance, or care involved in the post-episode healing process. But this year I’ve started writing about epilepsy as a factor in the development of my identity as a graduate student and instructor. I started with drafting for my syllabus an instructor accommodations statement, a genre which I found no previous template for. I initially approached this writing project as another practical matter to help my students know what to do in the event of a seizure. But then I wrote about how the statement crafting process itself was empowering because I found that not only did journaling about epilepsy clarify and validate my experiences living with it, but I also found an avenue through which I could offer nuanced conversations in the scholarship around disclosure. Although it’s often a vulnerable process, this writing has been a form of self-care. I am finding clarity, comfort, and courage in disclosure and want to explore ways graduate students cannot just record facts but form identity and meaning in their embodied experiences.

I recommend graduate students to always carry a small journal to document when a personal experience connects with a scholarly one. I think this can be a self-care activity by slowing down what often is a chaotic daily routine. Journaling throughout the day has helped me think about my research nearly everywhere I go: at the bar counter where I wrote about the risks of drinking alone; at the bus stop where I contemplated the notion of crip time and how everything takes longer for disabled folks to accomplish; and many other instances where I simultaneously felt contemplative and excited that I was building towards future scholarly work. After three months of journaling, I drafted the below instructor accommodation statement. I hope to contribute the strategies I gained during this creation process to the wider scholarship, and to spark new questions about teacher identity, disclosure, and writing.

 

Instructor Accommodations Statement

As a person with occipital epilepsy, I have requested accommodations through my department, and appreciate your understanding. I will mostly sit during class to minimize potential injury. I may experience a “petit mal'' seizure where I might seem inattentive, confuse words, or see visual disturbances. I am somewhat aware during these episodes, so I will raise my hand to ask for a “pause”. I also have an emergency medication that can help prevent a full-blown seizure; please be assured that I am not taking a recreational or illicit substance. The medicine however will make me a bit tired.

Although I’m taking preventative measures, I would appreciate your assistance in the event of a “grand mal” seizure. I ask you:

  • Have no fear. It can be a jarring event to witness, but my episodes are infrequent and pass quickly
  • Kindly move me away from any obstructions
  • Please do not film the seizure; no visual record nor sharing is necessary
  • Please do not restrain my movements nor put anything in my mouth (despite the widespread belief that this helps)
  • Please text my partner [name] at [number] to alert him of the situation. He is a firefighter and very nice.

 


Bio

MiSun Bishop is a predoctoral instructor at the University of Washington where she studies Rhetoric and Composition. She has worked in writing centers for over seven years. She researches how power, access, and language impact identity formation in higher education writing ecologies. She lives in the Seattle area with her partner and two very mellow senior cats. 

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