What kind of reader am I when relapsing-remitting multiple sclerosis (MS) makes me cognitively fuzzy? No. Fuzzy is the wrong word — a word for felt, for jumpers, for the soft noses of cats. My brain is not fuzzy. During relapses it is, and therefore I am, cognitively fucked. Temporarily (?) cognitively fucked. Can my uncertainty be reduced to punctuation and bracketed like this? Can fear be de-emphasized? Locked away? Corralled like horses? My health fear is a skittish colt and will buck its way out of those brackets, but let’s not go there yet. Let’s stick with temporarily cognitively fucked (TCF).
TCF happens when my overenthusiastic immune system demyelinates nerve cells in my brain, which prevents neurological messages from traveling efficiently. TCF blurs my vision and my cognition. TCF means my attention span shrinks to tattered minutes or seconds. It affects my information processing, which becomes glacier-slow and glitchy. Basically, on a bad day my brain is Windows 8.
Yesterday, I tried to read an Iris Murdoch novel. I remember it, but there are lacunae. I remember the book repeatedly featured a rock face in France that was imbued with a significance beyond yesterday’s grasp. A solid rock face looming over the landscape of the text, but also hazy, intangible. I think there may have been a face in the rock face — a trick of the light? The face of God? There was definitely an ex-nun somewhere in the story. Or the most likely option: stumbling over the words — so many words — in an attempt to scale Murdoch’s insurmountable symbolism, I may have imagined a rock face too many.
When I’m TCF, I am no longer a sure-footed reader. I have insufficient cognitive funds for the complex ideas that I process eagerly on good days, and yet like a moth in front of a lamp I am still drawn to the brightness of books, the promise of an uncracked spine. Maybe new ideas will penetrate the fog? Maybe new characters or images will jolt me out of this dullness?
I have always loved books. As a fretful toddler I delighted in my mum reading Eric Carle’s The Very Hungry Caterpillar to me over and over again. Four strawberries… five oranges. Learning the left to right progression through the pages. One slice of salami, one lollipop, one piece of cherry pie. Learning that black squiggles on the page carry meaning. He built a small house called a cocoon around himself. Feeling secure; held safe in a story where I knew exactly what was going to happen.
Today I am struggling to hold a thought from the beginning of a sentence to its end. This text has been compiled and edited to something sensical across a number of good and bad-ish days, but on the really bad days, I give in. I turn away from the precarious pile of unread books beside my bed, and reach for the creased, torn Penguin edition of a more recent old favorite, Malcolm Lowry’s Under the Volcano. I find consolation in this novel about the last day in the lives of Geoffrey Firmin and his ex-wife, Yvonne. My wife finds it amusing that my cheering sickbed read is a notoriously bleak and challenging work of modernist fiction.
What can I say? It works for me. Snug between Under the Volcano’s covers, unlike Geoffrey and Yvonne, I am safe. Soothed by the muscle memory of page turning, I build a small house called a cocoon around myself. Yet the sickbed cocoon is not my toddler cocoon. It is not glued together with story. I am struggling to type “intricacies of plot” let alone hold any in my malfunctioning brain. I frequently lose the thread and instead clutch at random wisps of language. This cocoon is spun from the familiar silk of stray words that manage to penetrate my MS brain fog.
a feeling of space and emptiness
mute explosions in the brain
a beautiful uproar
In the sickbed cocoon, I luxuriate in the role of bad reader, abandoning many of the decoding strategies that my toddler self learned. Starting at page 9 and proceeding left to right, chapter by chapter to page 376 is too ambitious right now. Far better to flick through, back to front or front to back. Flick, flick, and alight on those pages that fall open with least resistance; favorite pages revealed by the paperback’s cracked spine. Alighting, I embrace my moth-like state, flutter, dip in and read a few lines, a paragraph that takes my fancy. I read this novel loosely like a collection of poems.
Under the Volcano’s narrative speeds off in a different direction and is much faster than my own slow meander among the text. I have no desire to retrace the story. Here in the sickbed cocoon, literary and personal narratives are paused while the MS symptoms run their course. Sometimes symptoms abate overnight. More often they remain for days, or weeks, a month or more. I must suspend routine activities and postpone plans. Yet these episodes are much more impactful than that might seem. My MS flare ups are “biographical disruptions”; MS interrupts my efforts to create stable narratives of selfhood. Uncertainty creeps in.
Will TCF become permanently cognitively fucked?
Can I still be a writer when my brain can’t string two sentences together?
A researcher when I struggle to explain my own study?
If I’m not doing Georgi-as-writer, Georgi-as-researcher, who, and how, can I be?
a trapped bird
disengaging from herself
As I flick, flick and alight on words in Under the Volcano, I wonder if maybe there is something secretly subversive in my sickbed reading habits. Maybe some part of me, frustrated at the discontinuity in my personal narrative, petulantly refuses to engage with Lowry’s plot, preferring to dismantle the text until it too consists only of fragments. Beautiful fragments resonant with tentative possibility. Vulnerable fragments that settle into found poems on days where I can’t order my own words.
On a better-brain day, I reread my word harvest. Often the fragments that seemed important, strike me now as empty. Whatever I found in them before has departed, leaving only word salad.
a turkey a bottle of Johnny Walker a feeling of space
What was I thinking? Seriously, what was I thinking? Something in these words resonated with me enough that I picked up a pen and strung them together. Was I hungry for turkey? Hungry for the feel of this combination of consonants and vowels in my mouth? Maybe I just really missed drinking whisky. Or maybe these words never held anything as specific as meaning for me. In “The Albertine Workout”, Anne Carson recommends Roland Barthes to the reader for “his dreamy commitment to a third language in which we would all be exempt from meaning”. My cognitively fucked brain has no capacity for Barthes, but maybe in the magpie filching of words from Volcano, I have tried to create a way of reading that bypasses the construction of meaning altogether?
Maybe. Although, sometimes I reread my Under the Volcano pickings and can sense immediately why I alighted on those words, why I strung them loosely together.
a little chicken on a cord
tried to keep herself
On my best-brain days, I sometimes reflect on Yvonne as a mirror for other characters in the book. For the Consul, Hugh and M. Laruelle she variously reflects what they choose to see of themselves in her, be that romance, heroic energy or failure. In the found words above, I realize that on bad-brain days, I have reflected myself in Yvonne, recognizing in her my own hesitation, blurriness and vulnerability, aspects of myself that on good days I prefer to deny.
Discussing Proust, Carson writes, “It is always tricky, the question whether to read an author’s work in light of his life or not.” My sickbed flick through Under the Volcano is not an attempt to read through Malcolm Lowry’s life, of that I am certain. However, the solipsism of illness or the limited view from my sickbed cocoon have inclined me to read the text through my own life. I realize that it is easier to acknowledge myself and the limitations of my brain in Lowry’s words than in mine, and it is in his words where I continue to find beauty on both good and TCF days.
Image: Photo by Umberto Del Piano on Unsplash, licensed under CC 2.0.
 The italicized text throughout this paragraph is quoted from Eric Carle’s The Very Hungry Caterpillar, Puffin Books, 2002.
 It took four goes.
 Words found in chapters three and five of Malcolm Lowry’s Under the Volcano, Penguin, 2000. All subsequent italicized words are found in various chapters of that text.
 The term was coined by Michael Bury in his 1982 article. “Chronic illness as biographical disruption.” Published in Sociology of Health & Illness, 4(2), 167–182.
 Anne Carson, “The Albertine Workout,” New York: New Directions Books, 2014, p.26
 Carson, p.19
- The Sickbed Cocoon - December 2, 2022
This puts words to so many feelings and thoughts that have been rolling around in my cranial void for so long. Mostly words to offer friends and loved ones to whom I’ve wanted to explain these things, why I read so slowly, why I don’t write anymore, why even my conversation is challenging, both for me the speaker and for them the listeners. Very Long Haul Covid has not helped. My dad is struggling with the effects of a stroke, and this finding many of these same symptoms in his stroked brain. Like the plumber said, it’s all connected. MS is a beast, a disease of subtraction. Thank you for sharing your words.