In Defense of Not Writing #25: Losing Control

This column explores the myriad ways we can — and maybe should — engage with our creative process beyond actively writing. 

The email came in the middle of dinner: NEW TEST RESULTS. I hadn’t expected such a quick turnaround; the MRI was just that morning. Bright and early at seven, my mother had driven me into the mall-turned-medical-center so images of my brain could be taken. All of it under the assumption of insurance—merely to cross the improbable off the list. All of it under the assumption that nothing would show up on the scans.

My right ear has been home to a pulsing sensation for over a year. The beats are in tune with my heart, and the best way I can describe the sound is akin to putting a conch shell up to your ear. A soft whooshing effect. It doesn’t disrupt my hearing but it is persistent especially in the evening, forcing me to sleep solely on my right side in the hopes of squashing its intensity. For the most part, it doesn’t bother me. But every once in a while, I’d become convinced it was the warning signal of some mutating, devouring, horrifying brain cancer creeping further into position the more I ignored the noise.

My father has tinnitus. His is caused by a non-cancerous tumor behind his ear. He’s gone through radiation to reduce its size and ultimately now wears a hearing aid that lightly hums all the time to drown out the ringing. 

I felt too young to have tinnitus. This is what I told the ENT doctor when I finally did something about all that worrying and made an appointment. Much like Austin Gilkeson in his essay “Teshima,” I was brought into a box of a room inside a larger room to get testing done. Hooked up to headphones, I pressed a button each time I heard certain phrases over a swell of other sounds. Unlike Gilkeson, who completely lost his haring in his right ear, my test results were fine. Normal.

Here’s what I learned from the doctor about tinnitus: there is no cure. And here is the breathtaking irony: you don’t want the cause of pulsing in your ear to be cancer, but the alternative is submission to a life of internal (read: eternal) noise. 

No one thought I had my father’s non-cancerous tumor. Everyone was convinced that it was simply a result of allergies and a lymphatic system not draining efficiently since there was an almost button-like bump on the back of my ear that I could press to turn off the sound. You can coax it down the drain, she told me. By rubbing from ear to throat.

But we wanted to do the MRI just to make sure. Even still, the evening beforehand, my mother asked if I really needed to go through with it. If no one thought I had a tumor, why spend the money or the early morning claustrophobic and growing numb? Like I told my therapist, though, I didn’t mind the idea of knowing what was going on—or not going on—inside my head. A sort of incredibly expensive freebie for a hypochondriac. 

The email, when I opened it, began like this:

Constellation of findings suggestive of intracranial hypertension including partially empty sella appearance, tortuosity of the optic nerves/sheath complexes and increased CSF within the optic nerve sheaths. Questionable subtle flattening of the sclera posteriorly. Meckel’s caves appear minimally prominent/dilated bilaterally. There is also suspected narrowing of the lateral aspect of the transverse sinuses.

None of this rang any bells to me so I looked up intracranial hypertension and the first thing Google showed me was “a build up of pressure around the brain” and “rare.”

The idea of pressure build up around one’s head is not a light and breezy sort of discovery. I felt the warmth drain from my face and find its place in my stomach, building a swelling nausea of panic that rippled through my body. Tunnel vision took over not only my eyes but my thoughts as I stared at those words on the page—build up of pressure around the brain. There was no more information except for what my fingers could find online; outdated and misleading, bile coated the back of my throat and I felt like this was it. 

I had completely and utterly lost control of my body, not like I had much if any in the first place. That’s what rocked me to the core as I took shower after shower after shower: there was something malicious going on in my brain without my knowledge. My body, of which I’m attached to, went off on its own. The only way I found control was in calling anyone who would answer for information. I got myself in to see my ophthalmologist within a week, who recommended me to a retina specialist within two, and I made a neurology appointment for as early as was available. And when my ENT finally responded to my numerous calls to tell me this was an “incidental finding” and there wasn’t anything they could do to help me, I laid on my stomach and sobbed.

By now, I’m on the other side of all this a bit. I still haven’t seen my neurologist, but the handsome retina specialist told me he would be shocked if I had intracranial hypertension, and that the optic nerve sheath swelling looks to be caused by something completely different and quite harmless. I also found out that intracranial hypertension itself is quite harmless as long as you’re keeping watch.

As for how this connects to writing, I’m not yet sure except for the fact that I could not write for days as it happened. Even as my mother told me to relax, to just write and take the day off! There’s a huge misconception that writers love to write. Many writers complain about the act of writing within the writing itself. The drag of reworking a single sentence until it’s perfect, or the many ways in which we attempt to escape the page by opening new tabs. As Joan Didion said in her 1976 talk to Berkely students: “All I knew then was what I wasn’t, and it took me some years to discover what I was. Which was a writer. By which I mean not a “good” writer or a “bad” writer but simply a writer, a person whose most absorbed and passionate hours are spent arranging words on pieces of paper.”

Writing is most often not an escape from the difficulties of reality. T Kira Madden wrote in her essay, “Against Catharsis: Writing is Not Therapy,” that “Writing, for me, is no catharsis. Writing is work. Writing is my job.” 

I did not want to write after finding out I possibly had intracranial hypertension; I wanted to shut my brain off and walk down the deep void of my phone. I was capsized by the news. And I continue to be whenever I come up for air long enough to remember it’s still unknown, still uncontrollable. I guess the connection I’m trying to make, if one at all—as I am the last to make metaphor out of illness—is that this is not a race. And no matter how much you hope to control, someone or some disease or some minor blip on an MRI scan, will come and disrupt the entire show. It will not be your fault, but things will fall out of place as a result. What matters, the only thing that ever matters, are the small steps—and the small persistent calls—you take back towards the shore afterward.

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