W is for Writing
A is for Autoimmune
Coughs and sneezes spread diseases, or, in my case, cause my immune system to go haywire. This makes work difficult. My pupils are great but they often cough and sneeze and their pesky germs rarely see the inside of a handkerchief.
B is for Bladder
Mine has learned to lie. It tells me it’s full when it’s not. A lot. I clamber back into bed after a bogus call of nature and it starts to whisper. I need to go.You’ve just been. I need to go.You don’t. I NEED to go! You don’t. I REALLY NEED TO GO! You really don’t. I REALLY NEED TO GO!!Maybe you do. And I clamber back out of bed.
B is also for Bowel
But I don’t know you well enough.
C is for Claustrophobia
I’m a bit on the claustrophobic side. Five minutes into my first MRI, I learn this. Over the next eight years I have four more trips inside the noisy white tube (don’t think coffin, don’t think coffin). After number five, I decide there won’t be a number six.
D is for Dogs
I discover that dogs are indifferent to a diagnosis of multiple sclerosis. I live with two. It seems I still sound like the same human. I still look like the same human. I still smell like the same human (except for the faint whiff of antiseptic that sometimes clings to my hair). They’re not sad. They’re not anxious. They’re not awkward. They don’t feel sorry for me. Whenever they see me they wag their tails in delight.
E is for Elephant
One is waiting for me when I come home from the hospital that first time. It has taken up residence on an invisible floral sofa in the centre of the living room. When my remission is in full swing, it follows me out into the world.
F is for Fatigue
I learn first-hand that fatigue is one of the most common symptoms of multiple sclerosis. I begin to use the word sickie-tired to distinguish this form of tiredness from its more humdrum cousin, normal-tired. Sickie-tired: a sudden dizzying swirl of nausea and exhaustion.
G is for Gabapentin
Gabapentin does nothing for me. That’s not strictly true. It makes me feel drunk. However, what it’s supposed to do is decrease my neuropathic pain. It doesn’t do that.
H is for Hands
My first relapse starts in my toes, as do all of my future relapses bar one. As the symptoms work their way up my body, day on day, I start to repeat, in my head: as long as it doesn’t affect my hands. Over and over: As long as it doesn’t affect my hands. The disease is deaf to my mantra. By day six, my hands are affected. They feel as though they’ve been transformed into gigantic baseball mitts. Gigantic baseball mitts lined with tiny pieces of broken glass.
I is for Ice
It flows through the veins in my feet. This can be a sign of imminent relapse. But often it just means I’m cold.
J is for Jam Jars
Labels are for jam jars, apparently. I’m told this. It doesn’t matter that the person who declares it is someone I like. Someone I respect. I’m offended. It suggests I have a label. It suggests I’m being defined by it. I learn I can be quite touchy.
K is for Knitting
My hands are clenched for almost a year. I do it as a way to minimise sensation: the tighter the fist, the duller the sense of broken glass. I only allow my hands to un-fist when I have things to do that require fingers: typing, eating poached eggs, opening drawers, getting dressed, drinking coffee, writing on the whiteboard, signing my name, feeding dogs, getting undressed. I decide I want to take up knitting. As a hobby. I become obsessed with the notion that one day my hands won’t feel like shard encrusted baseball mitts. Instead, my fingers will make knitting needles clack at their command. This remission reaches my wrists in month ten. By month eleven, my hands are fine. The notion to knit passes.
L is for Lumber Puncture
I rank things. I always have. Seasons (autumn, spring, summer, winter); colours (purple, yellow, green); dead pets (Tasha, Hobbes, Calvin, Sooty). It’s an affliction. I discover that my number one most despised medical procedure is not, in fact, a lumbar puncture. Given the unlikely game show dilemma of… Which one will you choose? A lumbar puncture or an MRI? You have only thirty seconds to decide… To the sound of a big clock ticking down, I’d yell, ‘I’ll have the lumbar puncture, please, Bob!’
M is for Michelin Man suit
During one relapse my body feels like it’s been swallowed by a Michelin Man suit. The feeling lasts for months. Even when my Michelin Man suit begins to deflate, if I exert myself, or take a bath, the suit balloons to full size. I imagine an MS fairy hanging out with my stalker elephant. If she catches me climbing a staircase or going for a walk, she whips out her little foot pump and I am Michelin woman once more.
N is for Numbers
The MS Society estimates there are approximately 107800people with multiple sclerosis in the UK and that each year 5000new people are diagnosed. By this estimate, 14people are diagnosed with MS each day.
O is for Object
At times, I feel like one. It happens when someone, too busy to look up, tells me to take a seat. It happens when someone, too tired to talk, wheels me from this place to that place. It happens when someone, too distracted to notice I’m terrified of needles, inserts one into my arm.
P is for Pregabalin
Pregabalin is another drug that’s prescribed for neuropathic pain. I find it more effective than gabapentin. I stop taking it because of the side effects – dizziness, mild nausea, brain fog. When I do, I discover the neuropathic pain it’s been dulling for almost two years, is just as dull without it. I’m reminded that my body is clever. My body repairs the damage.
Q is for Questions
I’m asked surprisingly few. I’m sure it’s not that my friends and family members are uninterested. I’m suspicious they’re interrogating Google instead.
R is for Relapse
There’s a moment when you realise it’s happening. You’re watching Vera. At the advert break you get up to make yourself a cup of tea. You notice your feet are cold. You can’t feel the floor. Or. You’re marking Macbethessays. You notice your toes have become ice. You get up from your desk. You can’t feel the floor. You steel yourself for what’s to come.
S is for Scotland
Scotland is the MS capital of the world. Perhaps that’s why when I’m first diagnosed everyone I come into contact with tells me they know someone who has it. Or that they at least know someone who knows someone who has it. The mum of one of the wee girls in Cara’s class has a sister with it. / I bumped into Dave the other day and one of his pals was diagnosed with it last year. /My auntie’s neighbour’s cousin has it. I start to think it’s possible that everyone in Scotland does actually know someone with MS. Or they at least know someone who knows someone who has MS. I find myself wondering what the government is doing about it.
T is for Three
This is the number of days my body is able to tolerate high dose corticosteroids. The standard treatment for a moderate to severe relapse is 500 milligrams of prednisone for three to five days. I once manage four days. The experience teaches me that three is the magic number.
U is for Ultrasound
When I compile my tolerable-medical-procedures-that-are-done-to-meranking, ultrasound goes straight in at Number One. Even when an impossibly full bladder is stipulated as a prerequisite, having an ultrasound is top of the pops.
V is for Vienna
My husband’s job takes us to Austria for twelve months. We’re living in Vienna when I have my eighth relapse. I spend five days in the care of Krankenhaus Barmherzige Brüder – The Brothers of Mercy Hospital – in the city’s Leopoldstat district. There are actual Brothers of Mercy in the hospital. They wear brown robes and shuffle through the day ward of the neurology department distributing hot drinks. On my first morning, one of them brings me a coffee. His eyes don’t meet mine, but he radiates reverence rather than reserve. That same day I make a trip to the canteen and discover they offer a fine selection of beer and wine. Austria steals the top spot in my best-hospital-experiences-by-countryranking.
W is for Writing
Writing helps me manage neuropathic pain. When my brain is fully engaged in the challenge of writing and rewriting sentence upon sentence, it’s too busy to pay attention to anything else. People who know about pain management tell me this is called distraction technique.
X is for X-ray
It may be surprising that having an x-ray didn’t make the top spot in my tolerable-medical-procedures-that-are-done-to-mechart (bearing in mind this procedure doesn’t involve anyone actually touching you). However, when you factor in frequent exposure to radiation and my worry-wart nature, you might understand why it’s only ever made it to Number Three in the rankings.
Y is for Yikes
During one particular relapse my right hand decides to spasm intermittently and without warning. It’s a Friday night. My husband and I are having a meal in a small restaurant near our home. The table is dressed in white linen and has a single yellow rose as a centrepiece. I’m enjoying a glass of white wine. It leaps from my hand and smashes against the wall.
Z is for Zap
Lhermitte’s Sign is often associated with multiple sclerosis. When a person experiencing Lhermitte’s Sign tilts his or her head forwards, a sensation similar to that of an electrical current will travel down the spine and into the limbs. In addition to cold feet, this symptom often informs me that a new relapse has begun; I tip my head to look at my keyboard and an electric shock runs down my spine. Zap.
CHI 0608701240 | BRAIN | SPINE | 22-03-2007
It’s early on a Thursday morning in March. I feel, but I do not look, like Scarlett O’Hara (imagine the unyielding squeeze of a boned corset). The numbness and nerve pain have yet to inch from my torso to my arms and hands so I’m able, as instructed, to remove my civilian clothes and change into the required hospital-issue gown without too much difficulty.
I emerge from the changing room and the nurse, at whose command I’ve donned this somewhat immodest attire, asks me to follow her. I use the corridor wall to steady myself as I do. She stops some distance ahead. When I catch up, she indicates that I should follow her through a door on our right.
The room is white: the floor is white; the ceiling is white; the walls are white; the large clock on the wall is white; the machine is white. At least, as I relive these moments now, this is how they appear in the mind’s eye of my memory.
A man, who I assume to be the radiologist, is standing in the white room. He’s pale, bald, has glasses and is wearing a white coat. When he roams the corridors of my mind, as he is wont still to do some thirteen years later, he’s taken on something of the look of an ashen Doctor Bunsen Honeydew.
The colourless man informs me that my neurologist has requested that he scan my brain and three sections of my spine. Each task will take fifteen minutes, or so. He says he’ll begin with my brain and move down my spine one section at a time. He exhorts me to lie perfectly still throughout (I’m concerned at the difficulty of this challenge given the fact it feels as though an invisible hippopotamus has seen fit to take up residence on my chest).
He tells me the machine will be noisy and says he can play music in it if I would like. I smile and say yes please. I do this because I would like there to be music and because I want him to like me. He’s given no indication that he feels anything for me whatsoever and I think it wise to try to create an ally in him. His demeanour is, however, unchanged as he acknowledges my assent.
When he’s gone, the nurse tells me to lie down on the thin conveyor belt at the mouth of the machine. I note the narrowness of the opening through which I am to pass.
I look at the clock. It’s eight fifty.
When I’m horizontal the nurse clips a mask over my face, attaching me to the moulded plastic depression on which my head now rests. The mask makes me think about the Stormtroopers in Star Wars.
On the advice of my neurologist, I close my eyes.
My feelings towards my neurologist are a little complicated. I like him despite his manner towards me, which is almost comically cold. After each appointment with him, I’m in the habit scrutinising our interactions in search of humanity. In doing so, I lit upon his counsel to, above all else, keep my eyes shut. A moment of kindness I choose to treasure.
Something plastic, oval in shape, is placed into my left hand. The nurse tells me that if I need to get out of the machine I should press it. She then explains that if I do press it, however, I’ll need to go back in and the process will, unfortunately, take even longer.
The conveyor belt begins to move. My body slides backwards into the machine. I hear the man’s voice tell me he’s about to begin. I hear a few bars of classical music followed by loud banging and clanging that drown it out.
Interned thus, my sense of hearing amplifies.
Loud bangs and clangs transport me to 1977.
I’m at the cinema for the very first time.
War rages in deep space.
I spy on Luke Skywalker, projected as he is onto the fine filament of my cerebellum. He battles forces of evil on the Death Star. The noise around us intensifies. Han Solo joins the fray.
The surface beneath me comes to life.
I slide further into the machine.
The scene alters.
I’m in a meadow. Grass blows against my cheek.
This place is difficult to maintain. I alter it, as with a kaleidoscope.
My meadow is at the side of a motorway. The road surface is being ripped up by an army of pneumatic drills. I bring The Sorcerer’s Apprentice to bear. Jackhammers dance at the flick of a cartoon wrist.
I allow myself a moment in which to enjoy the knowledge that I’m doing well. I’d dreaded being inside this machine and here I am switching from cinema screen to cinema screen, in control of the proceedings.
The conveyor belt wakes up once more.
I tick off my brain and the top part of my spine.
I notice that it is becoming difficult to breathe.
Images of white coffins form. They reel and multiply. I tear my attention away.
I draw it down into my body.
My lungs, as they have been doing for days, struggle in the tight quarters of my chest. Their difficulty seems increased by the hard, narrow outer shell in which I, and they, are encased.
Fortunately, I’ve been taught how to breathe. After a woeful lung function test it was suggested that I focus on the out breath. Once emptied of air, lungs will naturally refill, I was assured. This, I remind myself, has proven much more successful than any attempt to gulp air into this restricted area. I direct my thoughts towards this endeavour and, breathing out, along with the noisy meadow, become my focus for the remainder of the procedure.
The belt moves.
The meadow softens, blurs, dims.
It is done.
I open my eyes.
The belt is moving backwards. Not forwards.
I shut my eyes.
But it’s too late. I’ve seen the inside of the machine.
The inner tube is small. Smaller than I’d imagined it might be.
I now know the truth of the space in which I am trapped. The illusion of the wide corridors of the Death Star and the open meadow are gone.
My body seems to inflate. It grows inside the tube until there’s no air.
I try to control my thoughts but my focus shifts to the panic button.
I feel my hand tense around it.
Still not so tight as to alert the man or the nurse.
I use every whimsical fibre my brain can muster to move the walls away from me.
I paint them yellow and push.
I tell myself to sing.
The song that comes to mind is my party piece. I learned it during a primary six project on the Scottish Wars of Independence. In later years I would regale fellow revellers with it after a glass of wine, or three.
Alcohol free I belt it out in my head.
I feel my fingers begin to relax.
After a number of ropey renditions, when my hand has begun to tighten once more, I hear the man’s voice; it sounds like that of Charlie Brown’s teacher, if she had a bad cold.
The conveyor belt reverses in direction.
I’m transported into the expanse of the room. The nurse is next to the machine. As I draw level with her, she unclips my Stormtrooper mask. She helps me up. I thank her. I look at the clock. It’s almost nine fifty.
I retrace my steps to the cubicle.
My clothes are waiting, stacked in their careful folds.
I remove the gown and redress one layer at a time.
I’m grateful for the familiarity each item brings.
Something is thickening in my belly. I feel it jerk and pitch.
My husband is still in the same chair in the waiting room.
I stand at the open entrance.
I motion for him to get up.
I’m almost at the door when reaches my side.
Cold air hits my face and hands.
We’re in the car.
My husband looks afraid.
I’m distressed about being in the tube, even though I’m no longer in it.
He asks me to calm down.
He says he’ll drive us somewhere nice.
He’s learned this trick from my mum. It’s a strategy that’s proven fruitful since I was a child. Often, to distract me from the fact of a Sunday, and my connected dread of Monday mornings, she would drive us out into the countryside. Invariably these trips would lead to a tea shop. I start to calm down at the thought of going somewhere nice.
I’m still crying when I say I want to see lambs.
We drive through the edges of the city until there are fields on either side. My hills come into view. I grew up beneath the Campsie Hills and still think of them as somehow belonging to me.
We stop at a garden centre. It’s one I’ve visited often. My husband knows I like it. He tells me I could do with some hot, sweet tea. I look at my face in the passenger mirror and wipe at it with the remains of a hankie. It makes little difference.
The garden centre is packed with spring flowers and old people.
I keep my head low and focus on the colours and smells that line the path. A tray of purple flowers catches my eye. I follow my husband’s shoes until we reach a counter.
The woman behind it asks what I want. I realise I’m ravenous. A baked potato with tuna. She looks concerned. She tells me lunch items aren’t available before eleven. I’m staring. Unsure of the problem. I’ve no idea what time it is.
She can likely see that up until recently I’ve been crying. She tells me it’s okay. I can order one and she’ll bring it as soon as it’s ready.
My husband orders a pot of tea for two, a piece of millionaire’s shortcake for him and a scone with raspberry jam for me. Regardless, when the baked potato appears I eat it as though I haven’t eaten in days.
On our way out, my husband stops at the cash desk.
He buys a soft toy in the shape of a lamb.
Doctor Bunsen Honeydew is the puppet scientist in The Muppets
Gillian Shirreffs writes with and about multiple sclerosis. She began writing to try to make sense of the odd world of illness into which she had been thrust. She gained an MLitt (with distinction) in creative writing in 2014 and was chosen to be a mentored playwright as part of the Playwrights’ Studio, Scotland 2015 Mentoring Programme. She is currently in the third year of a doctorate in creative writing at the University of Glasgow. The focus of her study is the relationship between object and illness, with specific reference to multiple sclerosis.