Gillian Shirreffs uses poetry, prose and white space to explore lived experience of a chronic neurological illness.
This is part one of an essay published in four parts this week.
a lip of wind
catches the door
pulls it shut
with a thump
at my back
frost meets my nose
bites my toes
and crocus heads
that crack March’s
unwitting I slip
into a chill night
on an arctic path
that runs askew
and hurls me into
a parallel world
dyed Prussian blue
My feet go numb on a Thursday. Two days later the creeping sense of nothing reaches my knees. I wake up just after three on the Monday morning to discover I can’t feel my thighs.
The voice on the other end of the phone asks why I’m not in a hospital. His exact words are: Why the fuck are you not in a hospital?
He says he can organise an ambulance. Although, it would be quicker if I had someone there who could drive me. I tell him there is. The voice orders me to leave immediately. Instead, I force my body, numb limbs and all, into the shower.
I’m not in the waiting room five minutes when the sweary doctor calls my name. My husband stands up. I give him a look that makes him sit back down.
For the second time in an hour I tell the young man what’s been happening. He wants to see me walk and readies a stopwatch. I look down and make my way from one end of the examination room to the other, slowly. In the preceding days I’ve learned that if you look down at the floor, even though you can’t feel it’s there, you can still walk.
Their initial fear is Guillain-Barré syndrome, apparently. This means that once I’m admitted to the emergency receiving unit and a junior doctor has, on her third attempt, inserted a line into my arm, I’m shuttled, by a porter who happens to be humourless, to and from the radiology department (as my lungs need to be monitored for signs of impending collapse).
Visitors are not allowed in the emergency receiving unit. My husband isn’t good with rules, so he’s been lurking behind a curtain for two hours. A charge nurse appears to take my medical history. I tell him there’s nothing to record because I’m very healthy. I always have been. Even when I was young. The only time I was off sick at school was when I had chicken pox. He looks perplexed and asks if I’m sure. There’s never been anything else? I assure him, no. From behind the peach curtain my husband pipes up, ‘What about that time you went blind in one eye?’
At this point my husband is banished and I’m asked to explain.
I tell the charge nurse about the forgotten episode of optic neuritis. Fifteen years earlier I temporarily lost the sight in my left eye. It seems he finds this relevant.
Before scuttling off the charge nurse says, ‘That’s an unusual surname. Any relation to Charlie?’ I smile and say, ‘He’s my uncle.’
This baffles him. It seems he wasn’t referring to my Uncle Charlie; he was asking about my Uncle’s Charlie’s son. But to me, that’s Charles, or Young Charles (despite the fact he’s twelve years older than I am). I don’t know him as someone called Charlie. This new identity is confusing.
The only Charlie I know is my dad’s older brother. He inherited the pub in our village before I was born. A village that is, to be fair, too small to be a village. When I was a toddler my mum had to go back to work. Uncle Charlie stepped into the breach. His pub was my nursery.
The charge nurse opens my curtain as he leaves.
There are four beds in the ward including the one I’m in. All are occupied.
It’s hard to tell if the lady opposite is asleep or unconscious. The sheets on her bed form a cocoon. I can see just enough of her face – despite the oxygen mask – to know she’s very thin. There’s a laminated sign on the wall behind her. It reads: DO NOT SIT ON PATIENTS BEDS. I’m overly upset by the missing apostrophe.
The lady diagonally opposite is also wearing an oxygen mask. She’s connected to a drip and there are wires attached to her from a large machine at the side of her bed. I think she’s unconscious. She looks like she’s in her thirties. My age, perhaps.
The curtains are drawn around the bed closest to me. There’s a beeping noise coming from somewhere inside.
Twenty minutes later a tall man leads a troop of white coats to my bed. The last one in closes the curtain. The tall man introduces himself then asks if anything about my health has changed recently. I say the only things I can think of are a lingering sore throat and a feeling of tiredness I’ve been unable to shake for weeks. He nods and turns to the throng. He tells them he will now conduct a series of tests.
The first test involves a needle-like instrument.
He uses it to scratch and prick my left foot, then my right foot, then my left shin, then my right shin, then my left thigh and then my right thigh. I can see what he’s doing, but it doesn’t produce the sensation I expect. It feels more like when you’ve been to the dentist for a filling and afterwards, before the anaesthetic has worn off, you touch your cheek, because you can’t help but touch your cheek, and your fingers seem miles away and like they’re covered in fuzzy felt.
He takes a small hammer and begins to tap my feet and legs. They jump to attention with each bop.
He asks about my eye; it seems everyone knows about it now. I tell him a short version of the following:
Straight after my finals I went to Greece for a week. The headache behind my left eye started on day five. On day six the eye went blurry. I decided I had eyestrain from studying for my exams. Two days later, back in Glasgow, I went to Boots. The optician was less than amused when she covered my right eye, asked me to read the letters on the board and I said, ‘I can’t see anything. It’s just black.’ She sent me to my GP who sent me with a sealed letter (which I steamed open) to the eye infirmary where I was diagnosed with unilateral blindness caused by optic neuritis. I was told the sight in my left eye should return over the next few months. I was also told it may initially come back in black and white, which it did. I was then told optic neuritis could signify some other disease. A detail I chose to ignore.
The consultant explains a neurologist has agreed to examine me in the afternoon. She has a clinic until two and will be by to see me after it. He opens my curtain and they begin to file out.
A young man lingers.
He almost touches my arm.
I return to my fixation with the apostrophe-less sign. In my head I take a large, black, imaginary pen and add the missing punctuation mark.
Two o’clock arrives.
A woman in a white coat enters the ward. She walks over to my bed. She asks the same questions. She performs the same tests. Then she breaks the formula. She asks if I know what’s wrong with me.
I say, ‘Maybe a trapped nerve?’
She takes a step back.
Then she looks straight at me.
She says, ‘I’ll be amazed if you don’t have MS.’