The Rot in the Beams

Elliott Gish

At your girlfriend’s parents’ house, you drink a cup of tea that scalds you. It’s your own fault, really—you didn’t put in enough milk to begin with, and you are too shy to reach for the jug again. The side of your tongue burns, then goes numb.

You have always been too eager to gulp down whatever food or drink is set in front of you, and you are no stranger to damaging the inside of your mouth. Usually it goes away within a day or so. This time it stays, and you marvel at how strange it is to run that wet hunk of meat over your teeth and not feel the sharp edges of your molars. The muscle is as nerveless as a defrosted steak.

“I burned my tongue,” you tell your girlfriend later, and she soothes you via text. Heart emoji, kiss emoji, hug.

* * *

A week after you burn your tongue, you realize that the side of your cheek is starting to go numb, too. The flesh feels pressure, but the skin does not.

You do not think that it is possible for a burn to grow and spread, so you call an emergency hotline. The nurse on the other end walks you through a series of questions, most of which are related to COVID-19. The urge arises to tell her that you don’t have COVID-19, that this isn’t even a symptom of the virus, and you beat it down. She knows more than you do, and who knows, new information comes out every day, maybe facial numbness is a symptom now.

“I am going to suggest that you go to a clinic within the next twenty-four hours,” she eventually says, and you are startled by the time frame as much as the suggestion. “Can you promise me you’ll do that?”

Your usual walk-in clinic is at capacity, and the new one you go to is not a clinic at all, but a “community health centre,” which means “hospital, but in the rich part of town.” The waiting room is nearly empty, and you squirm in your gray plastic chair, hideously conspicuous. You’ve never been comfortable in hospitals, never stayed in one even for a night. People in here are sick. You’re taking up space you don’t deserve.

After triage, you are escorted to Bed 28, which pleases you. A multiple of seven, you think, is a good sign; if seven is a lucky number, four sevens must be lucky four times over. An ER doctor takes your temperature, checks your blood pressure, taps and tickles your feet. He tells you that you should go for a CAT scan, another startling suggestion. “Just to make sure,” he says, and you think he is trying to smile reassuringly beneath his paper mask. You smile back, because that is the polite thing to do, and you would hate for him to think that you are rude.

The injection of dye they give you before the scan makes you feel as though you have wet yourself. You laugh aloud at the startling sensation, and the techs chuckle along with you. They know what you are feeling. They have seen all of this before.

* * *

Upon your return to Bed 28, you keep yourself busy. You read a book. You take cheerful selfies with grim hospital equipment as a backdrop, the spatter of freckles on your upper cheeks showing above your mask. You send self-deprecating messages to your friends, telling them how silly you feel to be sitting in a hospital bed when all you did was burn your tongue. You are in the middle of composing such a message to your girlfriend when the doctor appears in a flash of white curtain, no smile now beneath the mask.

There is something on the scan.

Under lights that suddenly feel too strong, he deals out the possibilities one at a time. The first possibility is a brain infection, which he says is unlikely since you seem healthy. (Healthy, aside from the fact that there is something in your head, something that showed up on the scan.) The second possibility is a tumor of some kind, maybe benign, maybe not. The third possibility is multiple sclerosis.

The words roll in his mouth like marbles. “Multiple,” smacking “mm” followed by guttural “ul,” “tiple” like a tipple of sherry. “Sclerosis,” rhymes with neurosis, osmosis, mitosis. Diagnosis.

This is the part in the movie when the sound fades out and the camera closes tightly on the lead actor’s face, tracking every micro-expression as they react to what they have just heard. You have had no time to rehearse this. You don’t know if your face is doing the right things.

Somehow you keep smiling at him, chirp bright responses to his questions. It is not until you get to the car that you start to cry.

* * *

Multiple sclerosis is a disease in which the immune system attacks the central nervous system, damaging the myelin sheaths. You probably learned what a myelin sheath was in some middle school science class, but you have since completely forgotten. It sounds fabulous to you, something out of one of the trashy sword-and-sorcery novels you loved as a teenager. The enchanted Myelin Sheath, protecting all those who wear it.

Until it doesn’t. Until it starts to fray.

* * *

“I don’t want to die.”

You say this to your mother, your friends, your sisters, your roommates, even though it makes you feel foolish. Of course you don’t want to die. Not wanting to die is what being alive is. Nobody wants to and everybody does, why do you think you’re so special that just not wanting to die means you don’t have to?

They try to comfort you by saying that maybe it’s a mistake, a thumbprint, a shadow, maybe you have an extraordinarily wrinkly brain and its lumpy contours tricked the doctor into thinking there is something to worry about.

“It could be nothing,” they tell you, and although you want to believe them, rage stirs beneath your breastbone like a hot little animal. You know that it is easier for them to suggest this, to hope for it, than to think of it being something. You understand. But you hate them a little bit for saying it.

You do not have the luxury of hope. Hope is useless. You have to plan.

“I don’t want to die,” you tell your girlfriend that night. She folds you tightly into her arms and kisses you, but does not say that it is probably nothing.

“I don’t want you to die either,” she says instead, and a blessed wave of relief cools you, calms you. You don’t want people to tell you that you won’t die. You want people to tell you that they don’t want you to.

* * *

Once upon a time you had a godmother, a family friend. Your memories of her from your childhood are, oh God, spotty, just like the results of your CAT scan. You remember that she was slender and small, that she always seemed anxious and drank her tea with both hands, that she had a poodle named Sodapop who didn’t like you. He would skitter away from you every time you went to visit, nervously showing his teeth, and you would spend an hour or so trying to coax him out from behind the living room couch while your mother and godmother chatted at the kitchen table.

After your family moved out of the city, you didn’t see your godmother for years—by accident, not by design. People lose touch. It happens. It was not until you were a sullen, chubby teenager with too much dyed black hair that you met her again, this time in a nursing home that stank of piss and stale beds.

In your memories she was small, and there in her strange mechanical bed she was even smaller, her bones glass-fragile, her fingers curved into blunt talons. She could not move or speak much, and you could not tell if she recognized you. You watched your mother feed her french fries and ask her questions that she could not answer and fought against the urge to run out of the room. After the visit—the stink of the place on your skin an itch you cannot scratch—you asked your mother what had happened to her.

“MS,” your mother said, and shook her head mournfully, the way she did when she saw something dreadful on the evening news. “Her husband put her away as soon as she was diagnosed. He couldn’t handle it.”

A terrible thought occurs to you as you lie in bed the night of your trip to the hospital, your fingers thrumming with dread: you could be her.

* * *

When you wake up the next morning you are determined to be brave.

Bravery used to be your thing. All the girls in the books you liked as a child were brave, daring tomboys who fought monsters and rescued people from burning buildings. Since you hated sports, you never qualified as a tomboy, but you tried to compensate for that by climbing trees and running around in the woods and taking spiders outside when your sisters were too scared to do it. You took every dare, no matter how dangerous or embarrassing. You were the first one to be in a school musical, the first one to cut off all her hair, the first one to move away for college, the first one to get a tattoo. Being brave is something you are used to.

Besides, you look at your mother’s face, your sisters’ faces, your best friend’s face, and know that you can’t not be brave for them. They won’t be able to stand it if you crumble now.

So you smile. You joke. You take out your piercings with pliers, because you know that whatever machines they use to test you might rip them out of your flesh, and you take pictures to show friends how empty your face looks without them. You go to your neurology appointment at the hospital a few blocks away. The hospitals are on lockdown, visitors are forbidden, so you go alone, tell the masked security guard why you’re there, register at the strange machines with their “6 FEET SOCIAL DISTANCE” warnings. It is better this way, you tell yourself. It is easier to be brave when there is no one there to look at you with wet eyes, to turn suddenly away and bite their lip, to reach out and touch you like you’re already dying.

The exam is a longer, more complicated version of the one you had the day before. Patient history, reflex tests, diabetes, dizzy spells, loss of vision, loss of speech, has anyone in your family ever had this? anyone? ever?

Cancer, bipolar disorder, alcoholism, depression, anxiety, those ailments all paddle around blithely in your gene pool, but not this. It was a roll of the dice, and you got sevens. Lucky you.

“My godmother,” you blurt, then blush as you realize that of course that doesn’t count. She wasn’t related to you by blood. Still, it feels that somehow your connection to her has changed your body somehow, invited in this thing that turns yourself upon yourself.

You are scheduled for an MRI. A nurse ushers you into one of those rooms that you can’t help but think of as the hospital’s backstage, where you change into two flimsy cotton gowns, one blue, one green. One is open at the back, one at the front, and in this way you ensure that you will not show your gargantuan ass to any innocent bystanders. It’s a costume change, you think, folding up your t-shirt and leggings. Lights, camera, action.

* * *

The MRI machine is the loudest thing in the world, even through the spongey yellow plugs the technicians thrust into your ears. You lie motionless in that plastic sci-fi tube for half an hour, deafened by its piercing 8-bit shrieks, which sound a little like the bassline from “9 to 5.”

The machine curves close to your face, dull beige plastic and two long strips of LED light inches away from the tip of your nose. You have never been one for claustrophobia—you like small spaces—but this is a little much. To avoid a panic attack, you imagine that you are a character in a video game, safely two-dimensional. This works, but you have to stop yourself from squeezing the alarm in your hand when your imaginary pixelated self jumps from one block to the next.

The camera above your head has a mirror in it that shows you the outside world. When you open your eyes, you can see the technicians moving around in the imaging room, distant and inscrutable. They don’t seem worried. Perhaps you shouldn’t be either.

When you are finished, you shuffle back into the waiting area in your stylish two-smock combo. You barely have time to sit down before the neurologist comes to find you and ushers you back to the machine. The first set of pictures showed a series of spots on your brain, not just the one the CAT scan picked up. They need more pictures, this time of your spine.

The hope that it could be nothing dies as you slide inexorably back into the tube.

* * *

The next morning, not even forty-eight hours after you first set foot in the hospital to ask about your numb tongue, you receive a call from the neurologist. The spots are in your spine as well. There are other tests they may need to do—bloodwork, additional MRIs, and oh, horror of horrors, a lumbar puncture—but it is clear that he does not expect to learn anything new from these.

“It’s definitely better than a tumor,” he says, and you have to agree. Objectively, it is.

* * *

The doctor tells you not to Google things, but you do it anyway. You learn about the damage your body has been doing to itself, how the destruction of myelin has led to your nerves not being able to send and receive messages as they ought. Like so many other things in life, this is a problem of communication. Your central nervous system and your immune system are standing back-to-back on the DVD cover of a bad romantic comedy, scowling over their shoulders at one another, and you the viewer groan in frustration because you know they would be in love if they just started talking.

The technical explanation for what is happening to you is soothing, full of polysyllabic words that burst in your mouth like fresh fruit. The lists of symptoms are far less soothing: paralysis, fatigue, confusion, incontinence, muscle pain, memory loss. Words like “progressive” and “debilitating” and “incurable” float across your eyes and disappear down the stream of your brain. Your brain, which has already started to deteriorate.

Every time you forgot your keys at home, every cramp in every muscle, every morning when you woke up heavy-limbed and stiff, rushes back to you in sickening detail. You have always been clumsy, absent-minded, liable to trail off mid-sentence while your train of thought skips off its tracks. All your life, you have thought that these things were just… you. You thought it was just your personality.

You think of it as rot, as though what is inside your skull is not pinky-gray matter at all, but a house unfit for residence. The walls are full of termites, the floors spongey with decay. There’s rot in the beams, and nobody told you.

You don’t have a personality. You have rot.

* * *

You are lucky. They caught it early, you don’t have any bad symptoms, you can still walk, still speak, still function.

A benevolent drug company covers the cost of your medication, and it is delivered to your door once a month by a cheerful courier. You can even set up delivery times online, are spared the indignity of calling and asking if you can pretty please have your brain drugs. Each package is wrapped in bubble wrap and zipped into a large resealable plastic bag, so far removed from the taint of human touch that opening the packages seems like an act of archaeology. Your fingers are brushes, clearing dirt off an ancient temple.

The pills you receive are large and rattle like tiny maracas. You like to hold them in your hand and shake them gently when you pop them out of their cardboard packaging, leaving behind a little burst blister of foil. No one seems to know why the pills work, but they are good at slowing the spread of lesions, stymieing the progression of damage. Mysteries. You are eating handfuls of mysteries.

There are few side effects, aside from something called “dumping syndrome.” You don’t know what this is until the day you forget to eat a full meal along with the medication and have to lock yourself in the bathroom for almost an hour, blinking back tears as everything you have ever eaten runs through you and into the toilet. You can’t stop yourself from looking once you are through. The semi-liquid that fills the bowl is green-black and murky, like the dregs of a swamp. It doesn’t look like something that could have come from a human being.

Lucky, you think, and flush it down. You think this again when the same thing happens at a friend’s house, a coffee shop, the bathroom of a bus terminal. So lucky.

* * *

Some things you learn about multiple sclerosis from all the Googling you shouldn’t be doing:

Women are three times more likely to get it than men. (That’s you.)

Most people are diagnosed between the age of twenty and the age of fifty. (That’s you, too.)

Your country has one of the highest rates of multiple sclerosis in the world. (You’re nothing special.)

It occurs more often in people of Northern European backgrounds. (Your family tree is rife with Englishmen and Irishmen. This is something you have inherited from them, like your freckles.)

The most common kind is “relapsing-remitting multiple sclerosis,” in which symptoms appear and then disappear over the course of a lifetime. (This cheers you considerably until you keep reading and see that this type often becomes “secondary progressive multiple sclerosis,” in which symptoms grow steadily worse.)

On average, people with multiple sclerosis can expect to live seven years less than people without it. (Seven times four is Bed 28.)

Many people with multiple sclerosis are not impaired by it, or only slightly impaired. (“Many,” not “all” or even “most.” That smell lives on in your nostrils. The slight frame of your godmother, curled up in a nursing home bed, is burned into your brain.)

It is still unknown what causes the disease, why people get it, or why it progresses the way it does. (No one knows anything, you don’t know anything, everything is up in the air, and the uncertainty makes you want to rip every strand of hair on your head out by the bloody roots.)

* * *

Your body has been your home for over thirty years, but you have never much cared for it. Sleep you have given it, and food, and as much exercise as you can without inconveniencing yourself, but other than that you have been content to leave it to its own devices.

It seems that now you will have to start listening to it. To feed it when it is hungry, and good things only. To ply it with medication and vitamins, little pills that may help stay the deterioration of your brain. To exercise it, and let it rest as long as it wants. To work less, or stop working entirely, if you have to. Which you might. Your body is the boss of you now.

You think of your godmother in her bed and how gingerly she chewed the french fries your mother fed her by hand, one at a time. Her husband put her in the home as soon as she was diagnosed. He later started dating the nurse that took care of her while she was still alive. Which she wasn’t, for long.

How long will it take for you to be discarded? How long until all the people who love you stop and see you as a nuisance, a burden, something to be tossed into a corner and forgotten?

You reproach yourself for even thinking this. Your family and friends are good people, kind people, not the sort to throw someone out like so much trash.

And yet, and yet, and yet.

* * *

The urge to tell complete strangers about your diagnosis is almost irresistible. You struggle to control yourself in the grocery store, in the breakroom at work, in line at the coffee shop. “Do you want your receipt?” the woman at the register says. “I have multiple sclerosis!” you imagine yourself replying, a bellow hardly softened by the thin cotton layer of mask holding it back from the air. “I’m dying, I’m dying, I’m dying!”

Most people with multiple sclerosis don’t die from it. Every website, every doctor, every friend has told you this. The next time someone says it you think you might bite them.

“Be nice to me,” you say to your roommates, sisters, friends, when they tease you about something inconsequential. “I have holes in my brain.”

It is not a kind thing to say. It is also not entirely accurate, medically speaking. But there is a shameful thrill in reminding people about the process happening inside of you, and in seeing their struggle to react to that reminder. Should they laugh along with you? Apologize? Change the subject? No one seems to know.

You don’t get to forget what is happening to you. You don’t get to live your life without the knowledge of what is going on inside of your body, the way your brain is chipping away at itself like a nervous teenager peeling flakes of paint off a door. Even though you know that your stuff is your stuff, and no one’s life needs to change just because yours got harder, you don’t want others to be able to forget, either. It doesn’t seem fair. So you remind them, every so often.

It’s mean. But it feels good.

* * *

Christmastime. One of a thousand trips to the hospital to leave behind samples of yourself, your fluids. You have to pee into a cup, and the pee won’t come.

Minutes slip away into nothingness as you sit on a hospital toilet, trying to force the urine out, but the more you try the harder it gets, and the harder it gets the more wound up you become, until you are sobbing in the accessible stall of a bathroom and cursing fiercely at yourself to just do it, come on, it’s easy, babies do it, why can’t you, why are you incapable of performing this basic human function, did the rot get to the part of your brain that controls urination already?

That makes no sense, and you know it. Incontinence is a symptom of multiple sclerosis; not being able to urinate into a cup on command is just bad luck. But you can’t help but think there is a connection there, somewhere, and you shake and weep and call yourself all the worst names you can think of, letting your head fall backwards and crack on the porcelain tiles.

An EMT hears you when she comes in to wash her hands. She knocks tentatively on the stall door, calling, “Is everything okay in there?”

You shuffle off the toilet, haul up your pants, and open the stall door, still clutching the plastic cup. “I can’t pee,” you tell her, and burst into fresh tears, new salt sliding down the tracks made by the old.

She is kind, and pats your shoulder, and reassures you. It’s okay, it happens to everyone, and look, there’s a tiny bit of urine in the bottom of the cup, that should be enough. “They don’t need much,” she says, and her eyes above her mask are very warm and kind. “Just hand it over anyway, the lab can work with what you have.”

You take her advice and hand over the cup, snuffling out an apology to the lab technician, who says nothing. You call in sick to work and go home. As soon as you get through the door, you have to pee.

* * *

In your journal, the one you keep in your bedside table for 3:00 a.m. moments of existential despair, you write:

What I have to look forward to is

loss of mobility

loss of eyesight

loss of memory

loss of cognitive ability

loss of motor function

loss of ability to swallow

loss of ability to retain information

loss

loss

loss

loss

loss

FUCKING LOSS

That’s it. 

* * *

One day you will piss yourself. It hasn’t happened yet, but you’ve done enough (horrifying) (terrifying) research that you know it will eventually. You will piss yourself, possibly in a public place, and you will have to deal with the pitying stares of those around you, the covered mouths, the hastily averted eyes. They will think that you are drunk, probably, adding together the two and two of your incontinence and uneven gait to make a completely understandable four. Whoever you are with will have to hide their disgust and help you to the bathroom, fetch you a clean pair of pants, pretend not to care about the thick cloud of stink that surrounds you, urine and salt and shame.

You imagine it happening in front of your girlfriend and feel terror cramp your guts. If she sees this happen, will she still be attracted to you? Or will she spend the rest of your relationship fighting revulsion, touching you reluctantly, forever blinking away the image of a dark stain spreading down the crotch of your jeans? The question rises to the tip of your tongue on more than one occasion—“hey, if I peed my pants in front of you, would you still want to have sex with me?”—but you can never find the right moment to ask.

You try to think of it in more delicate terms, but what it comes down to is this: you are terrified of a future in which you are unfuckable. You didn’t really start enjoying sex until your late twenties, have just started to feel at ease with your body after years of trauma, dysphoria, assault, abuse. The cruelty of a world that would snatch that away from you as soon as you get it leaves you breathless.

One day you will piss yourself. One day your hands may stop working and you will no longer be able to make love the way you always have. One day your slurring will get worse and everything you say will be met with “what?” These things frighten you far more than the possibility of ending up in a wheelchair.

* * *

Your head feels heavier now. Sometimes you think you can feel the scar tissue accumulating on your brain, a heavier kind of flesh that makes your neck sag under new weight.  This is psychosomatic, of course—there is no weight to what is happening in your brain, no increase of mass or substance—but you let your girlfriend cradle your head in her lap, anyway. It feels better that way, lighter.

“There are spots all over,” you tell her, trying to sound chipper. You have to be good, to joke, to keep things light. How else can you keep people wanting you? How else can you keep her wanting you? “In my brain, and in my spine.”

Her hand rests gently on your face. Her thumb runs along the length of your cheekbone, brushing lightly against the freckled skin.

“Freckles on the outside,” she says. “Freckles on the inside, too.”

The love you feel is an arrow to the chest. You close your eyes, overwhelmed.

* * *

A morning in March. You wake up with the full weight of knowing on your chest, crushing you. For a moment it is hard to move, hard to breathe, hard to see.

You get up and stand naked in the middle of your bedroom, breathing deep. Stretches, they say that you should do stretches when you get it. Keeps your body limber, your muscles more likely to respond to your commands. You bend over to touch your toes, hearing a scale of cracks in your spine.

And then you move your hands, slipping ticklish over the tops of your feet, circling your ankles, smoothing out the thick, round trunks of your calves. You slide up the plump expanse of your thighs, fingertips catching on ingrown hairs and scar tissue. There are goosebumps from the unseasonable chill outside your building, a sudden cold snap that no one was anticipating. The rounded shelves of your hips are soft to the touch, the sudden narrowing of your waist a startling dip like a fall from a tree. Ribs above it, covered in comfortable skin and fat. Arms covered in downy hair, Rorschach blots of tattoos on the yellowy pale. You let your hands roam all of it like one lover discovering another, taking in the details, the imperfections, ticklish elbows, bluish veins, jutting chin and clavicles, thundering pulse and quickening breath.

Your body, the house where you live.

You think: I hate you. You think: I know you are doing all you can. You think: I am so angry. You think: thank you.

You brew yourself a cup of tea. It is the right temperature. You drink it slowly.

A writer and librarian from Nova Scotia, Elliott Gish’s work has appeared in The New Quarterly, The Dalhousie Review, Wigleaf, The Baltimore Review, and others. Her debut novel, Grey Dog, will be published by ECW Press in Spring 2024. She lives with her partner in Halifax.