Gillian Shirreffs uses poetry, prose and white space to explore lived experience of a chronic neurological illness.
This is part four of an essay published in four parts this week.
A is for Autoimmune
Coughs and sneezes spread diseases, or, in my case, cause my immune system to go haywire. This makes teaching difficult. Teenagers 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 130000 people with multiple sclerosis in the UK and that each year 7000 new people are diagnosed. By this estimate, 19 people 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 Macbeth essays. 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-me ranking, 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-country ranking.
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-me chart (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.