Gillian Shirreffs uses poetry, prose and white space to explore lived experience of a chronic neurological illness.
This is part two of an essay published in four parts this week.
Which one is it?
The one Robert had?
Or Jimmy Johnstone?
(both now dead)
My mind temporarily
as my inebriated
To be fair, before she left, the neurologist did ask if I had any questions.
I said no.
It wasn’t that she’d been particularly cold or rude. When she first arrived, I quite liked her. But then she said what she said. And then she said the words lumbar puncture. I wanted her gone.
I play the news footage from Jimmy Johnstone’s funeral in my head.
I’m straining to hear the reporter’s voice.
He says the words motor neuron disease.
I have what Robert had.
Robert was my husband’s cousin.
Robert was great.
Robert was diagnosed with multiple sclerosis at 22.
Robert was already in the wheelchair when I met him.
Robert died at 43.
Robert couldn’t move or speak at the end. The last time we visited him he was being fed through a tube in his stomach. He smiled at us.
Robert had a lovely smile.
The charge nurse steps inside my curtain. I’ve been crying. He asks how I am.
I know that he knows but I say, ‘She says I’ve got multiple sclerosis.’
He sits next to me. On my bed. In contravention of the sign.
He tells me a story about his friend. She was diagnosed about ten years ago. She keeps well, apparently. He says, ‘She’s not even in a wheelchair.’
A couple of hours later I’m transferred to the skin ward. I’m no longer an emergency and they have a free bed. I can get visitors in the skin ward.
It’s another four-bedded room. The porter deposits me in the bed at the back-right corner. The only other occupant is diagonally opposite: a girl who looks to be in her middle twenties. I smile across, but she’s distracted.
Despite having studiously not looked, I’ve diagnosed the girl with psoriasis. My mum has it. The year before she got married she had a bad flare up and spent weeks in hospital. They gave her a tar bath every second day. I presume the treatment has moved on.
When I was young, I used to wonder what it would be like to have a tar bath.
People arrive at the girl’s bed. Her parents, I think.
The girl seems teary so I examine the window on my right. It’s small and old, but clean. It’s framed by a swirl of pastels – pinks and blues.
Someone else has arrived at the girl’s bed. Her boyfriend? Her husband?
The crying is getting louder.
Visiting is from six until eight. My visitors arrive at seven forty.
My mum and my husband are speaking loudly and at once. Telling me how difficult it was to find me. My dad is quiet.
It’s not an easy thing to say.
To your mum.
To your dad.
To your husband.
‘They think I’ve got multiple sclerosis.’
It’s not an easy thing to hear.
For your mum.
For your dad.
For your husband.
To respond to.
My dad’s been holding onto his newspaper the whole time. As he leaves, he gives it an extra fold and sits it on the locker next to my bed.
I read it column inch by column inch.
Around ten a nurse comes in. She takes my blood pressure and puts the lights out. I sit in the half dark, massaging my feet. In my head they feel like ice, but to my hands, they feel warm.
The lights are turned on again at six. A young nurse takes my blood pressure. She asks what’s wrong with me; I’m sure she knows already. She tells me a story about a friend of her big sister. This friend was diagnosed three, maybe four, years ago. She keeps well, apparently. The young nurse says, ‘She’s not even in a wheelchair.’
I push myself off the bed and make my way to the toilet-shower-combo in the corner of the room.
I have to use the bed and then the wall to stay upright. The floor is spongy and miles beneath me. More of me is numb. I touch my stomach then my lower back. The anaesthetised feeling has crawled up to my waist.
The tall consultant comes to see me. He explains that while I’m here, even though he’s not a neurologist, I’m under his care. He tells me that if things haven’t got any worse since my admission I can be discharged this afternoon. If my symptoms have stabilised.
I should have told him.
I’m home by two. I have tea and toast. I lie on the couch. I wake up. I can’t breathe. I’m in hospital by five.
A different young doctor explains that, consistent with a probable diagnosis of multiple sclerosis, the muscles in my chest wall have gone into spasm. She teaches me how to breathe.
Don’t try to breathe in. There isn’t enough room for that. Focus on breathing out. Your lungs will naturally refill.
She shows me.
We breathe together.
She’s right. It works.
But this is a head game.
You can’t allow the panic in.
I breathe out.
Long, slow breaths.