Punch views images from the lead-lined room
of hunched, misshaped bones.
Punch dances round the room –
head on a pole,
chest iron-maiden bound
with extra spikes,
hips a claggy crucible,
Mismatched red socks sneak
past frozen feet,
up past stiffened ankles.
Punch plays St Sebastian.
Punch is put to the rack —
stretched, heaved, bent, twisted.
“You manage quite well, considering,” puffs the osteopath.
Locked inside the Lord of Misrule’s body
I don’t know whether to be pleased – or not.
I am your pain.
Like Puck; quicksilver, impish, mischief-making.
You’re easily fooled, you make my nonsense real, you feel what is not true.
I stab and prickle, or transform into
A metal straitjacket, squeezing your foot, your leg.
Around each toe, elastic bands pulled tight.
You call me neuropathy; I say there’s no such thing,
Your foot, your leg, your left side, are my playthings.
When you sit quiet or sleep, I perch on your bed,
Waiting for you to move, when I will strike
Half-numb, like an injection in the gum where you can’t smile or chew,
Half feather-sensitive, you jump awake
When the duvet’s pulled so gently by a sleeping partner; he is unaware
That you lie, struggling to relax, to breathe it out, make it go away…
But I don’t leave. I will never leave.
I control. I rule you. I am king.
morphine tastes nasty, ive called it ‘the devil’s cough syrup’ before. it’s sickly sweet and cloying, but you know what’s Weird? when you first take that spoonful into your mouth, it’s not that bad. not great, it’s still medicine, but it’s tolerable. only when you attempt to swallow it does it make its true terribleness known.
It’s 2am and my body is on fire. Every cell is boiling. Sweat creeps from my pores. It only takes a moment to soak through my favourite t-shirt, then through the sheets and mattress covered in yellow imprints.
I can’t get any fucking sleep. This happens to me every night, up to ten times. Then 40 times a day, no matter the season.
I’m a comedian, but it’s near impossible to make people laugh when my body is transforming against my will. When I’m furious about an illness 50% of the population will never experience while the other 50% will understand it 20+ years after me. Isolated because no doctor out of my team of 7 can determine exactly why it is I went into menopause at 28. Depressed because they know little about a condition that under 1% of the female population develops.
This is my life now.
Our minds latch to narrative,
it’s how we learn, remember, interpret.
I went to hospital to have a baby,
I should’ve returned more, not less.
Subtracted: my ability to rise, walk, move;
In my pelvis, broken bone.
What is the premise?
What is the character’s motivation?
What is the hook?
That feeling: ochre, electric, waist down.
The hook is me on the edge of my bed, listening for my baby.
My doctor: you will probably heal
what if I don’t
things that were part of me: walking, laughing, being in ocean.
My editor draws lines through this section.
[The pacing is slow, nothing happens]
Days are triangles between the bed, the couch, the bathroom.
Pain tethers me; a dog on a rope.
I’m on the bed trying to stand, the collar pulls my neck
to breathe or growl
I watch from the other side of the room how I’m changed.
From our window, the clouds seemed static, frozen. Orange-and-green taxicabs drove through the slush six floors down. Tilly whimpered, buzzed for the nurse, asked for Dilaudid, whispered “good morning.” Swaddled in her sheets, she breathed hard. Phenolic air. She asked me how I was feeling. We lolled in our beds, our mothers asleep in their wooden chairs, wrapped in winter coats, their heads dangling crooked.
Tilly and I began our daily walk—we could only ever circle the floor twice. We linked arms, dragged IV poles with our free hands. The hospital hallway was long, off-white, off-world, a nearly invisible trail of half-existence. Fluorescent light faked endless daytime. Supposedly, there is also no night in heaven. With every step, that sorry tube stabbed me deeper in the gut like a helpless thief. Blood drained downward into a bag wrapped around my knee. My insides, bared to all who passed by.
Four walls and me,
Four walls a fistful of pills and me,
Surrounded by silence,
The silence that reminds me me myself and I.
You’re never silent,
The voice that never stops,
The endless alarm that disturbs my slumber,
You rattle round my brain in whispers and shouts until I scream.
Then I’m heard,
Outside of this box,
Outside of this cell walls have ears who swallow my words,
And even photographs in frames refuse to listen,
Because I have no voice.
I sit in my place—the patient’s chair—prepared to be a partner in my care. I’ve brought an expanding bible of medical tests and consultant notes, a list of medications and interventions, including what has worked and what hasn’t, and a diary of symptoms I now describe with familiarity. Muscles spasm in my core when I eat, radiating into my chest, back, arms and neck to form hard cords that bind me. I’m in need, seeking help to turn what’s chronic into manageable.
You look on me from your place—the physician’s desk. You steer me to start “my story” at the beginning, before pain. You lead me with questions that turn my persistence to find answers into anxiety. Then you say (in medical language): your emotions are the cause of your pain and you should accept that. Silence follows. You’ve removed me from the partnership.
I drew this while lying down in bed during a ME/CFS relapse and Fibromyalgia flare-up that has seen me housebound and sometimes bedridden. It describes the location of some of the pain in my body and how sore it feels. The image also embodies my sense of feeling trapped as a result of my disability, and of having my potential and freedom thwarted. I had the feather to hand because my husband brings me items from outside: The use of a found object is symbolic of my being housebound and detached from the natural world. It also represents a disconnect from the life I’d rather be leading if I were well enough. The image is visceral and disturbing, and it reflects the distressing and very physical symptoms I can experience.
Paula Knight’s website
Paul’s Knight’s poetry
Paula Knight’s site ‘Chronic Creations’
Please do not judge me,it wasn’t my choice
This illness descended, that’s what hurts the most
I have worked all my life, brought up three healthy boys
It has never been easy, what with clothing and toys
I can cope with fatigue, as most mothers can
But i took on too much, then the trouble began
My children have grown now and all flown the nest
But if mum is required, I forgo my rest
Three days in work is all I can manage
The pain is too much, my brain left in carnage
My “ME” is recognised, the authorities are aware
But the pain from Fibro Myalgia, they don’t seem to care
I am dependant on others which goes against the grain
But I’ll continue to struggle, there’s my dignity to maintain
I’m not after your pity, I don’t want a fuss
Please be patient, I’ll get there, but I can no longer rush.