The heroine Katniss is climbing the tallest tree, so she can look out across the arena of death. A gladiator in a parallel universe, she strives to make all things right in the world and has only courage and her weapons of choice, bow and arrow, to do so. She’s just a character in the movie Catching Fire, and a movie is nothing more than a story presented via images, dialogue, and sounds. While watching Katniss’ tale unfold, I rely on my brain, as I have for as long as I can remember. I trust it to process the meaning of the images, to translate the sounds into emotion, and to then present the saga to me. My brain is the narrator of the story—of all stories, really—telling me everything in its own words.
I never noticed this brain-as-narrator phenomenon until I got sick.
Now, I witness Katniss standing atop the great tree, boldly assessing the lay of the land, her bow in one hand and a dozen arrows in their...in their...
What the heck is a wiffle? I query my brain, but that’s the word it gives me: wiffle. I know what a Wiffle Ball is, and it’s not something you hold arrows in. I try prompting with contextual associations, like “Robin Hood has one,” which leads to “William Tell split an apple,” which leads to “wiffle while you work,” to “bells and wiffles,” and “not just wiffling Dixie,” to a wiffle-stop tour of idiomatic wrongness: “if you want me just wiffle, wolf wiffle, wet my wiffle, wiffle blower—
The right word is gone. A word I’ve known for as long as I can remember. A word a kid of eight would know. Nowhere near the tip of my tongue, it’s lost, in the fog.
The infamous brain fog of Chronic Fatigue Syndrome wafted into my brain three years ago, following a workplace chemical exposure that also left me with Multiple Chemical Sensitivities, asthma, and an interminable battle with workers compensation. I realized early on that, not only had I lost my health, my job, my home, most of my friends, and my active lifestyle, I was losing touch with my brain.
First I started misspelling things and making basic grammar errors. I’d always been skilled to the point of arrogance with grammar and spelling—friends had long ago nicknamed me a “Grammar Ninja” and relied on me to proofread their résumés and important letters, essays and stories—so when I started having trouble manipulating words and letters, I was shocked, and worried. No, not worried. Deeper than that. I felt betrayed. Without warning, without a goodbye or a chance to let me address its grievances, my brain had run off into the fog somewhere I couldn’t follow. It would connect once in a while, but I couldn’t trust it to be there when I needed it.
As the cognitive issues increased, my braintrust deteriorated. My vocabulary started disappearing, words and phrases at a time. They often returned later, but I couldn’t control when. In the midst of a conversation I would suddenly forget the topic, my argument, my next sentence, my next word, my last word, and/or why I was speaking in the first place. The brain fog would creep in and out, just like natural fog. I never knew when it would show up, when it was safe to have a conversation that mattered.
So, what’s it like to lose your language, one comma, one letter, one word at a time? What’s it like having an unreliable narrator telling your stories?
Incredibly unsettling doesn’t cover it. For a long time I felt that nothing could or ever would be right with the world again. I was a writer, a songwriter, a good communicator, a quick wit, a smart person, yet the cognitive lapses razed every definition I’d wrought for myself in forty years of living. My brain was lost, and so I was too.
I wasn’t the heroine of some fantasy tale. There would be no two-minute-long montage as I waltzed through the Kübler-Ross stages of grief to a happy Hollywood ending. What I experienced was a terrifying rending of self, followed by a long, arduous crawl through the muck of my own stages of grief. It was—I was—ugly and undignified. Unlike Katniss, I plummeted from the top of the world, and my adventure came to a screeching halt. Gravity shifted, or the planet’s poles switched places, or maybe I landed on another planet altogether? Up was down was sideways was wrong. It was all wrong.
I’ve done stupid stuff in my adult life—clinging helplessly to the reins as my rent-a-horse galloped off across the pasture, mistakenly entering the men’s bathroom during a Canucks game, taking the Black Diamond ski run instead of the bunny hill—but I’d never believed that I was stupid. Losing that facility with grammar and spelling, losing my vocabulary and ability to carry on a simple conversation, I felt stupid, and vulnerable. Language was my tool and shield. Words were what I did. Words made me. Clothes made the man but words made the writer. And the singer. And they were the key to social interaction. But with increasingly frequency, people were finishing my sentences for me, or talking over me, as I struggled for words. Most gave me odd looks, scoffs, and ultimately, the brush-off.
So I covered my deficiencies up by not speaking, and applied vigorous nodding and shaking of head when applicable. This led to people yammering nonstop about themselves, while I remained mired in silence. Talked out at last, they’d leave me drained and depressed. Desperate for a more balanced dynamic, I tried entering into only short, phatic conversations, but even then there were days when the fog was so thick, I’d get stuck on, “Nice weather we’re...um...”
More like foggy weather.
Rage Against the Me.
When my brain gave me a word like “wiffle,” I’d pause the movie and rifle through my thesaurus, looking up bow and arrow and holder and any word that came close to the one I needed, until finally I found it. This stopped working after my comprehension, too, faded. Then, I could read the individual words in the lists but they blurred and danced and meant nothing. Their meanings had become a secret they withheld from me. I’d fling the book at the wall and crumple into a ball on the floor. I think therefore I am. If I can’t think, therefore, I am...what?
I’d yell at my brain, Why are you doing this to me? What’s the matter with you? Get with it! You’re young yet! Wait another forty years; then you can slow down, but not now!
Self-inflicted anger is not very effective in terms of cures. It is ultimately self-defeating. But sometimes it did feel good just to yell.
I had plunged into the stormy Sea of Uncertainty. Unanswerable Questions sharked at me as I flailed for a handhold or foothold, anything that looked like land, solidity, a place where I could rest and feel safe. Will my brain kick back into gear? What am I going to do if it is like this the rest of my life? What if Workers Compensation pays me nothing? How will I survive? What if my condition gets worse?
Months later, I realized that fear had become my antagonist. I might not be a writer or a Grammar Ninja anymore, or whatever else I had once called myself, but those definitions were not me. The essential me hadn’t disappeared. I was still the hero of my own story, in the same universe, which contained the same amount of uncertainty as it always had. The difference now was that my health conditions had brought that uncertainty to my attention. My perspective had changed, and the world looked different, but it was the same world.
A year passed, and another. There were tears. There was isolation, and silence. I missed the power I had felt when I wielded words. I missed my friends and active life. I longed for the old status quo much the way one longs for the innocence and grandiose dreams of youth. Gradually, though, I came to understand what had happened to me. I’d lost some cognitive ability. Some, but not all. My brain hadn’t, in fact, betrayed me. It was busy, working to recover from the workplace incident. I couldn’t expect optimal functioning while healing, but I could have faith that my brain was doing all it could.
My narrator’s new voice was slower, less precise than before, but it was my narrator all the same. Yes, eventually, grief comes. Like a great wave, it envelops and then ebbs.
These days I focus on improving my cognitive function and enjoying my life with gratitude for all that I have. I manage my expectations with a “cognitive handicap” I developed using golf handicaps as a model. I scribble scraps of creative ideas in my journal when they emerge from the fog, and over months I piece them together into a story or essay. I ask friends to proofread for me, and I’m comfortable enough with my brain lapses that when I lose track of a conversation I can say something like, “Wait for it...” or, “Slow brain today, one moment please.”
These days, I take whatever word comes to mind and I go with it, trusting my brain to give me the real one when it is able. Accepting the wrong word, even temporarily, niggles at me, like putting a jigsaw puzzle together and finding the last piece doesn’t fit. But I’ve learned that going with it—or, wiffling, as I call it—can make conversations more interesting and make it difficult for me to take myself, or anyone else, too seriously.
So, Katniss draws an arrow from her wiffle and takes aim...
My brain continues its narrative, and as the story progresses, I forget that wiffle isn’t the actual word for Katniss’ arrow holder. She is running through the jungle with her wiffle slung across her shoulder, she obtains a new wiffle full of arrows, she tumbles down the hillside amidst an avalanche of rock but her wiffle is miraculously undamaged—
Flashing neon, bright as a megatron in Times Square, the word bursts from the fog. Quiver! Ta-da! I do a little jig in my chair. After forty minutes of wiffling, my brain delivers. And Katniss survives. And all is again right in the world.