Helix of Love

HelixofLove

A COLLECTION OF POEMS FROM PARENTS OF CHILDREN WITH RARE GENETIC CONDITIONS

Helix of Love

The collection of poems you are about to read is a journey through human experience.The poems explore the emotions, thoughts, and encounters that make us who we are.The words in this book were written from a variety of perspectives. Some offer a light-hearted look at life, while others delve into more sensitive themes such as loneliness and loss.

The collection was produced as part of the ‘Ethical Preparedness in Genomic Medicine’ project - a large collaborative research programme funded by The Wellcome Trust (grant number: 208053/A/17/Z) and based at Brighton and Sussex Medical School and the University of Oxford. The project explores the ethical issues associated with the mainstreaming of genomic medicine (the use of an individual’s genomic information, which includes their DNA sequence and any associated genetic variations, to diagnose, treat, understand and perhaps prevent disease and disability) and asks how we might become ethically prepared to meet the challenges posed in this growing area of medicine.

A vital aspect of this project has involved using artistic and creative approaches to collect stories from families affected by rare genetic conditions. Our aim has been to understand their hopes, expectations, and worries, and to provide an outlet for reflecting on what everyday life is like at a time when so much focuses on the promise of genomic medicine. We have worked in partnership with a group of families affected by rare genetic conditions to think imaginatively and critically about just how accounts of patient experience can be collected, collated, curated, and disseminated. Our participants have explored telling their stories through creative writing, stop-motion animation, collage, and now… poetry.

Working with arts practitioner and poet, Dawn Gorman, our participants developed a poetic voice for exploring the varying ways that rare disease, and the sometimes seemingly distant promises of genomic medicine, have shaped and continue to shape their lives.

For many of our participants, it has been very important to have ownership of their words – a way of both voicing and validating their experiences – and you can find biographical information on all of our contributors at the end of the book. For certain poems though, participants have chosen to retain their anonymity – particularly for pieces that felt raw, emotive, or risked their children’s anonymity. Having the ability to write without public attribution has enabled our participants to share important experiences and reflections.

The poems, crafted with care, have been thoughtfully woven together to create an evocative tapestry of life.Whether it be joyous or sorrowful, each poem captures something unique about life alongside rare conditions. So please let these poems take you on a journey as they explore parenting, love, and hope. May they help to open your eyes, heart, and mind as you explore the depths of human emotion.

Bobbie Farsides & Richard Gorman

Brighton and Sussex Medical School

For further information feel free to contact us: b.farsides@bsms.ac.uk & r.gorman@bsms.ac.uk

It is always a great pleasure as a creative writing tutor to have the opportunity to work with a new group of people, whose aim it is to express themselves in poetry – and what a privilege it was to be asked to facilitate a series of poetry workshops for this project. It was not, however, without some degree of trepidation that I began: here was a group of people for whom, for the most part, writing poetry was completely new territory, and for whom time was a limited, precious commodity – we had just four, one-hour Zoom sessions during which I would enable them to discover and explore poetry techniques, take on board various writing prompts, and create on-the-spot poems expressing the lived experience of families affected by rare genetic conditions.The aim was to amass sufficient poetry to fill a book, and the work produced should have genuine creative merit.

Where to begin?What to cram in? How could this even be possible? I need not have worried. Beginning with relatively straightforward acrostics and tanka, the group leapt rapidly on to everything from prose poems to sonnets, absorbing various style ‘tricks’ along the way, including the emotional impact of couplets and repetition, portmanteau words, and the power of dropping the reader into a visual gap.

My aim was to be simply a facilitator for the group to express whatever they wished, so avoided example poems which might take them along a particular route. However, three which did prove particularly effective in releasing thoughts, experience, and emotion were TheTable by Edip Cansever, The Door by Miroslav Holub, and The Egg by Richard Skinner. You will find, as you read this book, repeated waves of reference to doors, tables, and holding something precious in one’s hand (as in the latter of those reference poems).That sense of repetition powerfully emphasises the pressing nature of some of the similarities of experience for the participants.

The group approached everything I put their way with open minds and hearts, to produce consistently impressive work.Their skill in transmuting example poems, prompts, and experience into deeply meaningful, fully-fledged poems of their own, in 10 minutes, was remarkable, and they approached the later redrafting process with equal grace and skill. These poems, and the collection as a whole, have the profound capacity to touch the humanity in us all. If the participants did not consider themselves poets before beginning this project, they certainly emerge from it as such.Thank you to them all for their honesty, wisdom and creativity.

Dawn Gorman

a flock of bards meet

Seriously? This has put me on the spot!

A weekly meeting of like-minded people,

Narrating their experiences of families like mine.

I can’t wait to hear what everyone comes up with, as no

Two tales will be the same,

Yet, we are all in similar boats.

space

Sometimes I feel Pulled in all directions, un-

Able to gather my thoughts, my feelings.

Could this poetry thing help me begin to Express myself?

challenge

Carrying on,

Hardly thinking, one foot

After the other.

Lost.

Lonely. Until

Enrolling in a writing group – friendly, but

No escape –

Got to produce something

Every week.

I see you hiding in the bathroom red face, blotchy eyes crying the tears and screaming why us in a place that you know that no-one will hear you.

It will get better –you’re going to have to fight though, you’ll be fobbed off, patronised your heart will break into pieces but she will help you put them back together again.

You are not alone –it might feel like it right now but you’ll find your tribe who you’ll chat to and they will know as they’ve been where you are too.

Milestones might not be hit but inchstones will be celebrated. Your daughter may not be able to tell you but she will show you the determination, the stubbornness, the love that she has in spades.

You are at the start of that journey you just don’t realise yet what an incredible adventure it will be.

Sending love & hugs

Your Future Self xx

38 weeks

Ultrasound #1 a routine scan

Measuring a little small nothing to worry about Come back again this afternoon

Ultrasound #2 senior radiologist (foetal medicine)

Body small

Head smaller Brain underdeveloped

Some anomalies some concerns

Come back again at five o’clock

The MRI is underground

The day staff are clocking off

The consultant arrives shedding helmet and hi-vis

The radiologist stays late no of course no problem

The neurologist is called we all shake hands

I lie inside the belly of the machine

thin cotton against cold metal earrings out feelings in clickwhirr

clickwhirr

buzz clickwhirr clunk

Get dressed and wait over there

Holding hands on plastic chairs

A wall of medics files through the curtain

Grateful for their time I wish they weren’t here

Microcephaly Lissencephaly Simplified gyral pattern Polymicrogyria

Cortex

Corpus callosum

Ventricles

Whitemattergreymatter

Won’t walk won’t talk won’t feed might breathe

Probably

won’t survive

The neurologist tugs at his tie

The radiologist picks up her helmet

The consultant looks me in the eyes are you committed to this pregnancy?

We can sign the forms right now

41 weeks

In the flat there is no space no air we are all on top of each other like cats in a bag

Dark November days

long November nights

I beg for an induction

An end to the waiting

In the shower I stroke my belly

Caress the bumps of tiny knees

Hard against my skin

Wish I could keep you safe in here forever

The consultant conducts a stretch and sweep

She has long cold fingers and sharp nails

In the taxi I sit on a pile of towels

Watching the rain gush down the window

Relieved and terrified and desperate to know

what microcephaly with simplified gyral pattern looks like in a child whether it will live or die if our marriage will survive this

We have a boy and a girl name ready

I know which we will use

In the labour ward there is

No birthing pool no aromatherapy candles no music no monitors

No point monitoring

I signed a paper printed in red DO NOT RESUSCITATE

So I am free to moan and crawl around this bare room

Like a dog

Tethered only by the Entonox tube

2cm dilated We’ll check you in five hours

In five hours I’m naked on my back on the floor in a pool of sweat

Or piss

Or tears

They haven’t checked again I must still be 2cm I’m useless I can’t do this You must it’s time to push

Push

They tried to prepare me

I’m afraid it will be quite busy

Midwives doctors nurses auxiliaries surgeons students to help this baby to gawp at this anomaly I insisted on carrying to term

But we are alone

Me and him and one gentle midwife

Where are the others?

They must know there’s nothing to do nothing to see no reason to rush

Just push

Push push

Exhausted

Excruciating

Emotionless

Expelling

My stillborn child

Push push push

Tufty black hair appears among my sodden pubes and From the corridor the cavalry charge in Rush past me

Leaving the door wide open my torn vagina yawning to the world

On the floor my blood mingles with the sweat or piss or tears

Crowd round him

Check his breath his heart his skin his eyes his legs his weight

6lb 9oz Apgar 9

Rub him down wrap him up

And lay him on my breast

strange new world

The door opened. Nobody touched it

Nobody asked it to No sensor or motor. It just did.

The door opened. Beyond, a chaos-land Of billowing letters and Shouting, laughing, crying. A deep stink of infection and ammonia.

The door opened I looked behind me. No other door, Not even a room Anymore. No choice then.

The door opened I stepped through it Holding hands with those close.

Into our strange new world We went

Searching for the laughter.

a life on loop

I walk through the door, to the kitchen –Where the mound of dishes Never seems to go away.

I walk through the door, and forget what I came for –So back the way I came to try and remember.

I walk through the door, Because I hear you crying –I comfort and then Head back to the task in hand.

I walk through the door, As he sits down and shouts –Will you shut that bloody door It’s letting the cold in!

might never happen

A woman, filled with the intensity of living, Puts her phone – with its flashing notifications, its 368 contacts –On the hall table.

The front door lies open, winter sun streaming through, Spotlighting golden particles of dust. She places her keys on the table, her sunglasses, her pills, Then moves the pills out of reach of the children.

On the table, she sets the gossiping mums from the school gate, The Facebook posts, the Instagram reels, the WhatsApp chats And especially the tweets. She adds the neighbours, The distant relatives, That builder who always calls out ‘Smile love, it might never happen’, The newsreader on the radio.

She takes off her shoes, lays them under the table, Closes the door, Leans against it for a moment, Noticing that the dust has disappeared With the sun. She takes a breath, And goes into the kitchen to make the tea.

The table, its contents now in shadow, Lurks.

From the kitchen, she hears the phone ping.

an unspoken weight

A woman filled with the stresses of living

Puts down her bags on the kitchen table

Bags filled with the necessities of life that brim over With things that her near-teenage child needs For everyday life outside of this house, Prepared in a rush at the start of the morning

To be rifled through as the day progresses, Spare trousers, spare tops and extra nappies, Medications in case we need them that day. At the bottom, a half-forgotten letter

From an outpatients appointment we attended yesterday, The bag with the bibs and the spoons and the food That contains no allergens, not too soft and yet not too hard

A sippy cup with thickened fluids, mixed to perfection –God forbid that I need to find my keys

And there’s always something I will bloody forget…

my kitchen

My kitchen is noisy-busy

Coffee aroma lingers in the air

Scattered debris from breakfast

a foreboding of the day ahead

I will need all the stamina I can muster!

The rain falls pit-pat

My olive trees falter under the weight

The ground is sodden

My mood is dark as skies above –

Heightened anticipation

unpacking

The Bag comes with us everywhere we go: spare clothes, wet wipes, nappies, cream, snacks and bibs. Emergency medicine and a key for the Changing Places we need for dignity along the way. Woe betide the person who unpacks The Bag and misses something in the repacking.

I’m secretly glad The Bag does not contain more medical equipment, or special food. Or heartache. I know others have much heavier loads; most days, I shoulder mine lightly.

Tyres screeching in the car park but no doing doughnuts

Oooh doughnuts yum! not on the list – naughty!

Grab the bags from the boot token for the trolley

Drat! List left on counter top Well I’ll wing it.

Pizza’s always easy, good, quick hmnnn remember the Ondansetron, will that help her nausea?

Next aisle, speedy, no time!

Bananas – potassium, potatoes – carbs

Remind me to check BMs later

Oh hi! Not seen you around much trolley wheels wonky, stuck, pulling to one side

Does that pump need recalibrating?

It’s over-reading – add it to the to-do-list!

Sausages, baked beans & mash? Check a plan!

Have I remembered the EHCP draft deadline?

Nearly done – cereals, cling film

loo roll and booze (of course)

must order sterile wipes whilst I’m thinking

To pay, which card, what’s the limit?

Ooh, how many bottles of Gabapentin are left? School needs some too!

Mustn’t forget…

tap tap tap

Tap tap tap

I hold the egg to my ear. There it is again, Tap tap tap.

Run to get a torch and light through the shell to see who’s tapping from within.

Chickens aren’t for work these days. Just for fun and the odd egg. Market stalls swapped for medicines, Cash boxes for cough machines. We kept the apron though.

Profound learning disability

Is our life now.

Most of it.

Learning about it, learning from it. Surviving with it, despite.

It’s a subtle egg though, this. The shell is there, invisible But there’s a person inside

Tap tap tap

What are you trying to tell us

about what the world’s like for you?

Are you bored? Do you hurt?

Is your sister a love or a pain?

Tap tap tap

I wish I could set you free.

Fast beat anxious hearts. Families sit as islands

Amongst the bustle, Wondering expectantly: Does genetics hold the key?

broken not broken

But parents, you need to know:

Research shows that some of these children don’t live beyond the age of 2

Of course we don’t know what form she has yet.

Knowledge is power but we would

Encourage you not to google –

Nothing good ever comes from that.

Now then Mum, she’s done all her physio?

Oooh, she’s a stubborn one this one!

That’s amazing, never thought we would see her do that!

Brushing her own hair you say?

Ready and dressed with minimal help?

Occupational therapy must have really worked her hard.

Knowledge is indeed power and

Encouragement is key –

Never underestimate your child!

We have been here in this very room before Familiar faces, antiseptic smells, flimsy curtain

Technicians huddling around the monitor We cannot see Indistinct muttering and pointing Are they relevant to my child?

A waiting game will follow Comebackforresultstomorrow

Next? Totheshops!she says brightly She has bounced back, my rubber-ball girl

about your child

A splice mutation: Words about your child you never expect to read.

‘A variant of uncertain significance’. So, they’re not sure what, if anything, it will mean.

We know that there is regression, An autism spectrum disorder.

Since we last saw you, Have there been changes in your daughter?

Well yes, she wrote a story, Illustrated it herself.

At my brother’s wedding she held my hand When the absence of my late mother made me sad and overwhelmed.

She chatted to me at bedtime and snuggled in tight. Since you last saw her, yes, I think she’s doing alright.

unpacking

I saw one once. Difficult to say I held it, Since it was under a microscope lens: A Nucleus.The tiny dot in a cell

The full stop at the end of a sentence

Three billion letters longA biological zip file describing a human. We’ve spent her life unpacking it.

Then come the experts, detectives decoding What this Rosetta Stone might say About what’s wrong with our Cleopatra

And how it’s shortening her muscles, her life. Genius though all this is, do these hieroglyphs Tell us about her bawdy laugh, and a smile to fall in love with?

see me, here i am

Her smiles her giggles her whole sense of being

Dissipate slowly as the doctor listens to the heartbeat thump

He observes the chest-rise the pulse rate the breath count

His cold fingers press onto her abdomen

He rolls her that way and this he weighs he measures he compares her with others

Amalgamating thought and reason squeezing monitoring testing To find what he knows

Therein losing sight of my daughter not a statistic not a measurement But a person who glows.

an enigma

A story-telling, character-creating, smart kid

Full of facts and information that mean

Nothing

Until you enter her world. A rule-breaking, geneticist-baffling, neurologist-confounding, High-achieving

Developmentally-delayed

Fully-dependant Independent thinker.

A mixture, a muddle, a misunderstood mystery of medical science And

Everything to me.

diversity

Her laugh infects all

Her smile radiates beauty.

Some say there’s no place

In this world for kids like her –Fearful of diversity.

holler

genetic twins

GRINgene GRIN1 c.2483 C>T

handsome eyes

milkysmooth skin thickhair

neverstill

tap sway

seemingly unbothered by much love to have cuddles but mostly solitary in Samworld Zachworld notlost justdifferent

side by side for the first time a hint of someone the same reaches their ears and for a moment they stop attend to the sound that the other one just made two peas in a pod no blood in common but a matching gene kin

gattaca

she’s got a ctbp1 error do you understand what that means ok well howaboutthis it gives her a condition called haddts does that help

well instead let’s look at it like a constellation of symptoms

HypotoniaCerebellarAtaxiaDevelopmental DelayToothEnamelDefectNystagmus

CongenitalCentronuclearMyopathyMild

is that starting to make sense now

midnight at a&e

Midnight at the A&E waiting room, Packed to the rafters on a Saturday night.

A baby wailing, anxious mother cuddles, The pensioner, blood streaming, from a fall at home.

A drunk, stinking of whisky, veers and leers As he waits in the queue.

Here we’re sat, with you in your wheelchair Barely responsive, vomit bowl on your knee.

Waiting for our turn to be called and bidden, Why does the time seem to go so slow?

Finally seen, another admission –Down to the children’s ward we go.

IV fluids and a bed for you to rest in I’m thankful that you’re comfortable now.

the room

I pass the wet-wipe sticky hands Mummy! Her eyes crinkling, peeking at me mischievously as her little paw slips into mine

Dysmorphic features, small stature

Discoordinated swallow, spinal asymmetry

Low muscle tone, brisk reflexes

A collection of brittle words

He doesn’t see her peek-a-boo

She passes back the wet-wipe, also now sticky and much less useful It feels slightly gritty in my palm Has she had any recent bloods?

We need to check her zinc, iron, LFTs He scribbles furiously in the notes.

Mummy, Mummy I’m bored now! Time to go purrrleeeeeaaassssssee?

A question? A distraction? Either/both She delightedly blows a wet-sounding raspberry at his back He is already engrossed in his next patient’s records.

sharp scratch

Black print stark against the white paper, a fluttering of forms

Just a few bottles: FPC, Us&E’s, LFC, HB

No need to concern yourself Mum

Assorted vacutainer tubes with different coloured tops a parody of 100s and thousands, awaited ruby drops

Don’t let her see Mum. Hold her head/turn away

Put a book in front – Hold Her down!

Her tiny, sweaty little palm, curled defensively and wriggling in my own anxiety quickened breath giving way to panting then wailing Nooooooooooo and determined squirming.

She is crazed, energised by fear, giving her a Herculean strength

Feisty kicks to unwitting shins, cat claw nails drawing scarlet beads across bare-below-the-elbow forearms Ouch! Hold still and stop making such a fuss! Just a sharp scratch and it will all be over before you know it.

Exasperated no-nonsense tone matches the steely-eyed but wary gaze

A hand grips her shoulder harder than it no doubt means to but with a certainty about who is in control, who has THE POWER. Meantime my warrior child shrivels, wilting and drooping as unwatered flowers Inevitably she has conceded, cowed by the wait of collective and palpable anticipation.

Clinically efficient, brisk and brusk. Spit-spot, nicely done. To the victor the spoils! I hear in my head

It is not unkindly meant of that I’m sure but their relief that the objective has been achieved is a razor rash burn.

The door is opened for me –It’s better not to touch. Immediate temperature change a noticeable chill. Sterile, aseptic, über bright.

I have been through these doors before –If not these very ones, same but different. I wonder if this will be THE FIX? A hope. A fear.

Weighty expectations.

These doors fill me, consume me: equal parts anxiety/adrenalin & longing. But it is the next doors in reality that I cannot see beyond.

The doors swoosh behind me. More people fill the room her pre-med has kicked in much laughing, hilarity

I’ll have what she’s having! Go now Mum, We will take it from here I’m ushered from the room –the door is closed behind me.

waiting game

The steady ticking of the clock

Its internal mechanism an infernal racket

Tock

I glance at it again but the hands haven’t moved The air seems to have been sucked from the room

Hushed

Around me there is hustle and bustle, busyness-business

I’m wading through Quagmire

She’s back Mum, safe & sound! All went well Relief

appointments

I opened the door, A warm welcome comforting as tea and toast. I felt heard and at ease. With a consolatory shoulder tap, You wished me well on my way.

I opened the door, Bright, white, stark. The familiar smell of trauma. You made me hold her tight while she cried. Fear set in.

I opened the door, To smiles, frowns, Smiles, understanding, Smiles and questioning. Disbelief.

Always smiles, though sometimes without sincerity.

Now I open the door

To faces who know our story. We catch up every few months, Like old friends. Yet still strangers.

speaking in code

We’ll need FBC & U&Es

Check ferritin and LFTs

Don’t forget to check the clotting

She turns to me –

We’re just running some blood tests today

What’s the BP, and the pulse

Note the respiratory rate as well

Did the pulse feel good or was it thready?

She turns to me –

The observations are fine today

The urine is it clear or cloudy? Did it test positive for leukocytes?

Have you sent a sample for C&S?

She turns to me –

We’ve sent off urine for testing today

We need to check the GCS

Eyes open spontaneously, child vocalising, score 11

But mum says this is her normalcy, She turns to me –

Her brain function seems OK to me

The health professionals all speak in code, But thankfully (for me), it’s a code I know For in my previous life I was a nurse. I turn to her –

I understood all that I’ve heard

Heavy feels the heart when Everything begins to overwhelm. Again, bureaucracy and red tape are the Reason why there is no time to Disclose what is truly important.

remember us?

A ball of frustrations grows in my bones my temper lost

At stairs without ramps at loos without hoists at parks with nothing for us to play on

Why in the 21st century

Do we need to beg and plead for acceptance and inclusion?

I mutter under my breath as life throws another obstacle in our way in a world not built for wheelchairs

Who are these planners these architects these policy makers who create the world in inaccessible ways?

Maybe by building things that encourage exclusion they can pretend we don’t exist out of sight out of mind

Fuck that We’re here take notice Society can do better than this.

Note:‘Loos without hoists’ – Changing Places toilets are a toilet facility which includes a hoist and adult changing bench as well as a loo.They are needed by 1 in 260 people, yet there are less than 2,000 registered Changing Places toilets in the whole of the UK - to put that in perspective there are more than 2,500 toilets in Wembley stadium alone.

a fun place to be?

Bright blue skies, white clouds bobbing, the giggle of children fills the air, The gates to the playpark are open and welcoming most people there. The slides, the swings, and the roundabout bring joy on this warm summer’s day But a girl sits alone on the sidelines –wishing she could join in and play. She rolls along in her wheelchair, ‘The park planners forgot to include me’

sun on the lammermuirs

We open the door, Wary.

Everything seems the same. Sun on the Lammermuirs, Next door’s cat snoozing on a car bonnet, Aeroplane trails dissolving in a washed-out sky.

We open the door, Furtive.

Everywhere strangely quiet. Grab the deliveries and scuttle back inside. An hour to bleach the groceries, Three days to quarantine the mail.

We open the door, Blinking.

Everyone on their doorsteps clapping, banging, shouting, singing. Join the celebration, Wave to the neighbours. Lucky to live where we do.

We open the door, Tempted.

Everything seems the same. Sun on the Lammermuirs, Next door’s cat sauntering along the fence-line. Just a little walk?

Five lives behind this door, Protecting one they call ‘clinically vulnerable’. One we call our son.

speechless

So many speeches

Mark the death of a monarch.

My child slack-jawed watched.

Would she have cared, the Queen, if We’d met? What do you think, love?

We pause for a second as you pull me in, for a hug that encompasses me with a circle of love. My head against your chest so I hear the sound of your heartbeat thumping, it feels like a womb-like embrace.Your brother joins in so I’m clasped in the middle, a whole love-sandwich that brings joy to my day.

first day of term

Sun streams through the window and the sparrows have arrived, squabbling over our scraps outside the open back door. The kitchen smells of burnt toast and my tongue smarts as orange juice meets toothpaste. But for once we’re all ready on time. Washed and brushed, dressed and breakfasted, clean jumpers and shiny shoes. Before the rush to the door we gather for a photo: dirty dishes still on the table, five of us squeezed in next to the fridge, its layers of artwork gently flapping in the breeze from the open door. Arms around each other. Wipe raspberry jam off the little one’s face. Smile nicely. Say cheese. Say toast. Say sunshine. Say how quiet the house will be. One click, and we spring apart, hustling each other out the door.

time out

The air is unusually warm. My back feels the heat through the borrowed wetsuit.The water sparkles, playing with the sunlight, matching the audible delight of my daughter nearby.A squeal, a splash, peals of laughter. Gentle lapping against plastic. I kneel on a paddleboard, rocked gently by the little waves as they roll down the sweet waters of Loch Tay.The fir-felted hillside frames the view, climbing steadily to a saltire-blue sky. In the middle distance, the familiar figure of my husband – unfamiliar in neoprene – is adeptly coming ashore on a tiny wooded island: adventuring. Our son is safe with Granny. I have nothing to do except bob, and bask, and breathe.

self-knowledge

She has her most

Exciting ideas

Lathering up in the shower:

Face …

Knees …

Nether regions.

Oh! If she could only

Write them down, but,

Like soap bubbles, they

Escape

Down the drain –

Glug.

Every time.

manwife

Five minutes alone in the shower. The phone, instead of primed for alarm, is upturned in a jug to better play the radio. This Woman’s Work by Kate Bush. Not a woman and not working, not for the first time feeling fraud.

Water and the scent of tea-tree, the swirl of voice and orchestration circle the drain.

I’ve got a cheeky beer open on the sink. A quick sharp swig of hops. Towelling off with one hand, I tell my experience to the world with the other. Jo Wiley likes my tweet.

R

ealising that existing between the leaves of exercises, therapies, medicines, and appointment letters is simply not enough.

A woman filled with the heaviness of living put her fears on the table. She put her children, her parents, her house on the table. She put the work days and the wet days, the dark days and the down days onto the table and heard it creak. And the creak made her lighter. She kept going. She unwound her scarf of worry and put that down, and felt her voice returning. She took off her coat of cares and felt her shoulders relax out of their hunch. The table creaked again. The woman felt her feet lift off the floor a little. The woman opened a window and the soft breeze nudged her away from the table altogether.

pockets

A man filled with the heartache of living Put his fluff on the table, The unused dog treats, The hairband stretched thin with use, A few pennies, A list of shopping, Another of jobs. A quick pat down and his pockets were empty, Only air remained. So he sighed that onto the table And went on.

She asked me to tell her about a moment I stopped, A time to pause, breathe and just be. In truth

I’m learning to do this again after years of survival and a lost inner me. I hear the waves crash and the water subside.

Look to the island horizon where the gulls swoop and glide. I recall the dreams I once had as I gazed out to sea, The imaginings of how life would or should be.

I’m learning to use my senses again, Feel the warmth of the sun and the chill of the rain.

I’m feeling the hope the Autumn air brings And the cliché that change can be a beautiful thing.

Laughing and laughter is all around me. The happy splashing of toddlers and helicopter parents hovering on the shore line. The teenagers with a radio and their raucous shouts pierce and intertwine with the lazy ebbing and flowing of gentle swells.

In the distance there’s a drone of jet bikes and shrieks from the capsized would-be banana boat float riders. Petrol fumes and sun cream. Buckets and spades.

The sea gulls circle above, cawing to each other; a sudden dive bomb by one to a flimsily-secured picnic bag. A tussle ensues as more enter the fray and agitated squawking over a stolen Pringle, a crumb of crumbly cake. A belligerent, sand-speckled toddler stands his ground on plump little thighs, shooing his sticky, ice-cream covered fingers in their direction: Go ’way sea-gull!

Here and now, all is right in my world with the sun beating down. It reminds me of summers long-past, those lazy, hazy, halcyon days. A time before.

pebbles

I’m holding a pebble In my hand.

I marvel at how the roughness of Being tossed by the sea, Has made it so smooth.

In the perfection of its appearance, The story of how it came to Be this way remains untold, Just as my carefully thought-out words Hide the pain of uncertainty.

Like the pebble

The me I have become Has been shaped by tumult. The unexpected lack of control Means that little is predictable.

It’s a wonder how, together, Those thousands of pebbles Protect the land

From being overwhelmed by a stormy sea.

In the innocence of picking one And skimming it across the surf, Who knows what difference this will make. When it will reappear on the shore, Or how the seas will have changed it?

transmutation

[the action of changing, or the state of being changed, into another form]

I am holding a pebble large enough to fill my palm. Its solid, heavy greyness shot through with a galaxy swirl of brave pink quartz.

I’m holding a collision in geological time. A long-lost twist from when stone was soft. Who knows which other hands have held it too?

I’m holding a metaphor for pressure and permanence, beauty in adversity. A reminder that sometimes good comes from hardship from turmoil, when that pink quartz was forced into cracks of grey, then chipped and weathered, through long centuries of battering, to be my treasure.

This pebble nudges me, when times are hard and I scatter pain-wrought words upon the page, to hope a future eye might find beauty here too.

hand I hold A hand in My mind.

A small hand; A hand I know well.

A hand that changes day

By day, hour

By hour:

Sometimes warm, soft, Relaxed;

Othertimes clenched tight, Skin taut, Knuckles swollen, Shiny white;

Tiny nails digging into the palm.

Bruised and scarred from So many attempts to cannulate. He barely flinched; I cried my eyes out, Holding it still for the nurse.

A hand that speaks almost

As loud as his eyes.

A hand I remember almost Better than His face.

balloons

First family holiday without him: a space in the middle of the back seat

of the car, and another in the boot where his buggy, feeds, pads and pills should be.

We filled the gaps with new activities: a paddleboard, swimsuits, wetsuits and boots, a kite, a frisbee, a slackline, some books, coloured balloons to remember him by.

When we arrived and unloaded the car, the balloons – red, silver and gold, stars, orbs

and hearts – hovered above on spiralling ribbons as we lugged boxes, bags and bikes,

a barbecue, food and wine, back and forth, then they followed us into the cottage.

tanka

Walls painted orange, Bright pictures, rainbow curtains –This is their playroom.

Barbies, Lego, crayons, noise. When they sleep he is still here.

silhouette

I opened the door and I felt The energetic heat of an Atlantic beachy afternoon Thudding into my chest, Taking the chill off my back.

I opened the door and I smelled The salt thrown into the air, Sent flying by the pounding waves That crashed against the rocks at my feet.

I opened the door and I saw The silhouette of a boy Leaping and splashing for joy Before the glittering silvery sea.

I opened the door and I heard The chatter and the questions, The hopes and dreams and hypotheses Bursting out of him.

That door is not mine. That boy is not mine. I wish they were.

tanka

Here in the forest

The air rustles with brown leaves. Stand perfectly still.

They have finished their journey; Ours is turning a corner.

two lives

I am the rainbow-spotter, the bright-sider, the smile-sharer.

I am the hurry-upper, the thing-finder, the back stop.

I am the comforter, the carrier, the singer, the shielder.

I am the nappy-changer, the stain-remover, the note-taker.

I am the first-aider, the ambulance please-er, the child-interpreter.

I am the grief-swallower.

Where does it all come out?

As words onto the page?

As hair onto the pillow?

As tears into the wine glass?

I must harness the power of this grief, or it will destroy me.

So I seek out those rainbows, build my own bright-sides, smile into the darkness.

Carve out the time, enjoy the things I find, and catch all the love that comes our way.

Comfort, carry, sing to and shield him as best I can. And hope to look back one day and say, that was two lives worth living.

Contributors

Paul Arvidson

Paul is already an author of Sci-Fi (featuring Space Hobbits on a lightless planet) and Thrillers (featuring a Sweary Teen in a wheelchair righting wrongs.) This is his first time since college writing poetry. It was freaking terrifying.He lives with his wife and two daughters and a varying number of pets in the beautiful Somerset countryside.

Lisa Beaton

I’m a mum to four children all of whom have a congenital medical and/ or neurodevelopmental disorder; our two youngest children have an as yet, unknown neuromuscular disorder.We live in NorthYorkshire with two excitable dogs and a long-suffering cat! It’s a close call as to whether we are functionally dysfunctional or dysfunctionally functioning but baking and eating cakes features strongly in my skill set.

Alex Davey

Alex Davey is a botanist and mum living in Dunbar, southeast Scotland. She has three children: two fiercely independent and loving girls and one beautiful boy, Benjamin, who passed away from an unknown genetic condition in 2021, aged seven. Benjamin introduced Alex to many new friends among the disabled community, through whom she learned about the social model, the challenges of achieving equity, inclusion and access, and with whom she began the long, winding journey to discovering her own neurodivergence.

Lorna Fillingham

Lorna Fillingham is a mum who lives in North Lincolnshire. She has two children, the eldest of whom has severe physical and learning disabilities as a result of a rare genetic condition. In her spare time she fights for disability rights, as she has realised that her daughter is disabled as much by the built environment, by society and by attitudes, as she is disabled by her actual genetic condition.Together, she believes, we can build a better future.

Jillian Hastings Ward

Writing poetry during this project has taken me to some difficult places, but also allowed me to share some of the joy I find in small things. People look at our lives from the outside and make huge assumptions; projects like this are so important in sharing our realities. I’m proud to have helped to bring this project together and am inspired by my fellow writers. I hope you find a lot of food for thought here too.

Jo Wright

I’ve spent my whole career working with children and adults with learning disabilities.As a special education teacher, I prided myself on the relationships I was able to build with the children I supported and those who cared and advocated for them. However, it wasn’t until I had a child of my own, with a rare undiagnosed genetic condition, that I truly began to understand their experiences and how those can affect interactions and relationships with health and education services. I’m proud to be part of this project, of the work that we have produced collectively, and the powerful insight it gives into the complexities of living as part of a family affected by a rare disease.

Bobbie Farsides

Bobbie Farsides has been Professor of Clinical and Biomedical Ethics at Brighton and Sussex Medical School since 2006.Throughout her time in Brighton she has worked to integrate arts, social science and medicine through teaching, public engagement and research. Bobbie has been involved in the ethical governance of genomic medicine through both Genomics England and Our Future Health, and her experience in these settings underlined the importance of giving voice to lived experience in innovative and engaging ways. It has been a privilege to work with the poets featured here and the other project participants who have shared their valuable time and experience with us.

Please feel free to contact Bobbie at b.farsides@bsms.ac.uk

Richard Gorman

Richard Gorman is a research fellow at Brighton and Sussex Medical School. Richard’s research focusses on bringing lived experience into conversation with medical knowledge and practices to improve care. Richard is interested in developing creative strategies for research, drawing on arts-based approaches to enable people to centre different kinds of narratives, emotions, and experiences. Richard has haemophilia and is an active advocate within the rare disease community where his work has focussed on expanding the opportunities for patient voices to shape healthcare.Working with the poets featured here has been an immense privilege, and we would also like to acknowledge the support from The Wellcome Trust and from Dawn Gorman, Darren Beaney, and Matt Bemment in bringing this collection together.

Please feel free to contact Richard at r.gorman@bsms.ac.uk

You can read more about Bobbie and Richard's work at: doi.org/10.1136/medhum-2021-012346 doi.org/10.1177/14687941221110168

Dawn Gorman

Dawn Gorman is an award-winning poet, creative writing tutor and mentor, and works with poetry in therapeutic settings, including reminiscence projects with older people.Other work includes a disability rights project with young people, and she is committed to enabling everyone, whoever they are, to tell their story. Her poetry publications include the Brian Dempsey Award winner Instead, Let Us Say (Dempsey & Windle, 2019), and two Pushcart Prize-nominated pamphlets –This Meeting of Tracks, published in the four-poet collection Mend & Hone (Toadlily Press, 2013), and Aloneness is a Many-Headed Bird (Hedgehog Poetry Press, 2020), a ‘conversation in poetry’ with Rosie Jackson. Her latest book,The Bird Room, is due from Hedgehog in 2023. She is Poetry Editor of Caduceus magazine and produces and presents The Poetry Place on West Wilts Radio.

You can contact her at: dawn@dawngorman.co.uk

Cover design by Matt Bemment

Typeset by Darren Beaney of back room poetry

www.backroompoetry.co.uk

Aboutthecollection

Helix of Love is a collection of poems written by parents of children with rare genetic conditions. The poems explore the lived experience of rare disease, and provide an outlet for reflecting on what everyday life is like at a time when so much focuses on the promise of genomic medicine. The collection was produced as part of the ‘Ethical Preparedness in Genomic Medicine’ project.

“This collection is so moving and true! It shows what poetry can do, and why the genetic story is incomplete unless it includes life itself.” – Professor Tom Shakespeare, London

School of Hygiene & Tropical Medicine

"Helix of Love is an inspirational collection of poems written by parents who share their hopes, fears, laughter, tears and above all love for their amazing children who live with rare genetic conditions." – Louise

Fish, Chief Executive, Genetic Alliance UK

“This collection of extraordinary poems is a real triumph: vivid, heartwrenching and hopeful. It's a must read for anyone involved in designing services for or supporting children and families with rare conditions.” – Dr Richard Scott,

Chief Medical Officer

and

Deputy CEO, Genomics England

“Research outputs come in all shapes and sizes meaning there are many valuable ways in which to describe and delineate the experiences, unique and common, of parents of children with rare genetic conditions. This extraordinary and effecting collection demonstrates the power that literature - poetry in particular - can have in shining new and sometimes astonishing light on the uncertainties, anxieties and above all acts of love, that these families chose to share with us. ” –

Dr Dan O’Connor, Head of Research Environment, Wellcome Trust