Bleeding and Belonging

BLEEDING AND

BELONGING A collection of poems from families affected by bleeding disorders

REVIEWS “In this extraordinary collection of poems, the writers have shared their poignant, at times funny and at times heart-breaking experiences of bleeding disorders. The strength, love and hope that shines through the work is inspirational.” – Dr Mary Mathias, Children’s Bleeding Disorder Consultant “Health care professionals never fully grasp life with a bleeding disorder.

These poems shine a light on their everyday impacts. Everyone should read them – for they are truly powerful.” - Dr Kate Khair, Director of Research at Haemnet, former Haemophilia Nurse Consultant, and Patron of The Haemophilia Society “These poems offer a unique and personal insight into the complexities, emotions and bonds experienced by families living with bleeding disorders. They give us a valuable depth of understanding. Such an innovative idea, and beautifully done.” - Anna Wells, Advanced Practice Physiotherapist in Haemophilia & Allied Bleeding Disorders “This collection is a fine example of the unique way in which poetry can help us express and share some of our most challenging and complex experiences. Once again Rich Gorman and Dawn Gorman have helped us learn of and benefit from the wisdom, insight and dedication of parents caring for children with medically complex lives, in this case bleeding disorders.” - Professor Bobbie Farsides, Emeritus Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School

contents

introductions

5

the generation gap, Lisa Steadman

10

sonnet for a five-day old, Sarah West

11

what they didn’t tell me, Hannah Brunning

12

fourteen months, Claire Brown

13

inheritance, Alexandra Akrimi

14

just you and me and this gene, Hannah Brunning

16

bloodline, Sarah West

17

DNA lottery winner, Marie Staples

18

severe A, Natalie Stead

19

the matriarch, Claire Brown

20

words for mum, Alexandra Akrimi

21

wake up, Natalie Stead

23

another bad night?, Lisa Steadman

24

awaking, Sarah West

25

the calm, precious morning, Hannah Brunning

26

i love a list, Alexandra Akrimi

27

the therapist’s chair, Hannah Brunning

28

the impossible ladder, Hannah Brunning

29

open water, Natalie Stead

30

early rising, Alexandra Akrimi

31

on waking, Claire Brown

32

juggling, Claire Brown

33

pretty lists everywhere, Hannah Brunning

34

the worry ladder, Lisa Steadman

35

3

list, repeat, Natalie Stead

36

worry, Claire Brown

37

the list of life, Marie Staples

38

rungs, Sarah West

39

my ladder, Claire Brown

40

mumma and her boy, Hannah Brunning

41

what is sleep?, Marie Staples

42

up the stairs to bed, Marie Staples

43

my acquaintance, worry, Sarah West

44

just a carrier, Natalie Stead

45

i don’t wear white, Marie Staples

46

the constant fight for what’s right, Marie Staples

47

seesaw, Alexandra Akrimi

48

a life’s work, Marie Staples

49

the quiet strength of listening, Alexandra Akrimi

50

why will no one listen to me?, Lisa Steadman

51

please, listen to me, Natalie Stead

52

dental disaster, Marie Staples

53

what a bloody night, Marie Staples

54

other words, Lisa Steadman

55

overwhelm, Hannah Brunning

56

the light for our path, Sarah West

57

choices, Sarah West

58

contributors

60

4

Some of the poems within this collection have been written in direct response to…

Carrying a Ladder by Kay Ryan Matins by Jeanne D’Orge Sonnet for the Chickens by Tom Healy Tea Stains on the Reading List by Chris Hemingway Type 2 by Sjohnna McCray Words for Worry by Li-Young Lee

We are grateful to the authors for the inspiration.

5

introductions

The collection of poems you are about to read o5ers a window into life with bleeding disorders.

Bleeding disorders, which include conditions such as haemophilia and von Willebrand disease, are inherited conditions with wide-ranging impacts on health, care, and family life.

Living with a bleeding disorder often means engaging with regular medical care, planning around risks, and passing on knowledge and experience across generations. For many, the impact is felt in everyday choices, about work, school, sport, travel, and the responsibilities families share. These personal experiences are part of a wider community story, shaped by history and by rapid advances in treatment possibilities.

The collection was produced thanks to generous funding from the Centre for Arts and Wellbeing at the University of Brighton, and the enthusiasm of community partners Local Families with Bleeding Disorders, a charity that o5ers support and understanding about what it is like to live with a bleeding disorder.

Working together with Local Families with Bleeding Disorders, and award-winning poet Dawn Gorman, we designed a series of writing workshops that used poetry to try and understand more about the hopes, expectations, and worries of people a5ected by bleeding disorders. The course provided participants with structured opportunities to use creative writing to reflect on and articulate their experiences with bleeding disorders. Sessions introduced a variety of poetic techniques and created space for participants to experiment with di5erent forms of writing.

Guidance and feedback from Dawn supported the development of individual pieces, enabling participants to shape their personal reflections into completed poems.

The poems gathered here give voice to the emotions, uncertainties, and resilience that shape life with bleeding disorders. They open windows onto experiences that are often absent from clinical accounts by o5ering personal, emotive, and deeply human perspectives. Poetry becomes a way of knowing, holding clinical knowledge alongside the lived realities and textures of parenting, risk, and care. The collection reflects on the ways families make sense of bleeding disorders through daily acts of care, reflecting on inheritance, identity, and love. Read together, the poems leave us with a better understanding of the emotional, social, and cultural aspects a5ecting families, supporting e5orts towards more sensitive, patient-centred, bleeding disorders care.

As someone living with a bleeding disorder myself, it has been a privilege to find new ways of sharing important voices and stories from our community. It has been profoundly moving to witness the ways in which poetry creates ways of bringing together experiences that are often overlooked, helping to highlight and weave together the many perspectives that make up life with a bleeding disorder.

Dr Richard Gorman Brighton and Sussex Medical School

7

As a creative writing tutor and mentor, I have extensive first-hand experience of how giving people even just a little encouragement to ‘write things down’ – fundamental things including their thoughts, emotions, hopes and fears – can be a liberating and empowering process. And I believe that with just a little help, guidance and encouragement, anyone can write poetry. Gone are the days when everything was expected to rhyme, when every syllable had to be counted: today’s poems are characterised by natural-sounding language and accessibility, and by their direct impact on the reader, who will find in them ideas, emotions and experiences to which they can relate as fellow human beings, even if the context of the piece refers to something with which they are unfamiliar.

But my confidence and conviction are all very well – what I really admire and value is how people such as the seven participants in this project are willing to ‘have a go’ – to be introduced to poetic forms such as sonnets and ‘concrete’ poems, to consider metaphor, alliteration, the use of repetition, and to plunge themselves into writing about complex matters – both emotional and experiential – without, in most cases, ever having done any creative writing whatsoever. Our interaction in this project was very limited: we had just three, one-hour Zoom tutorials, plus subsequent one-to-one mentoring in which I gave feedback and advice on participants’ work by email. My approach was to facilitate rather than direct, so the six example poems I chose for them to explore and respond to did not seek to take them along a particular route, though inevitably there are repeated motifs in this collection which reflect the source material, including lists, ladders and, notably, ‘Words for Worry’, after the poem of that name by Li-Young Lee. I did, of course, have my own, steep learning curve, the bleeding disorders community being completely new to me, and I am grateful to Rich Gorman for inviting me to facilitate the creative writing element of this project, and to all the participants for their open-mindedness and trust, and for writing with such honesty and emotional depth. The poems they have produced, and which are showcased in this collection, are extraordinary; they have made me smile, they have made me cry, and I can genuinely say that they would easily stand shoulder-to-shoulder with work by far more experienced poets. But for me, the most important part of this project has been that the participants have enjoyed it: some found writing poetry so helpful to them that they wrote extra poems beyond the two per session that my prompts encouraged, and some have subsequently told me how writing poetry has enabled them to unpack, explore and release thoughts and emotions that they have keep hidden away for years. It has been a joy to work with them, and I hope that their poems reach the eyes and hearts of a wide audience: within the bleeding disorders community, amongst clinicians and far beyond.

Dawn Gorman

8

As Chair of Local Families with Bleeding Disorders and a proud participant in this poetry project, I’m delighted to introduce this special collection of poems.

This book is the result of something new for many of us – stepping outside our comfort zones to explore poetry as a way to express the complex emotions and experiences of living with, or caring for someone with, a bleeding disorder.

What began as a creative experiment, quickly became something much more meaningful.

Through words, we’ve found ways to share things that can be hard to say out loud including fears, frustrations, worries but also love, support and kindness.

The process of creating these poems together brought our members together in a new and deeply personal way. It created space for connection, support, and understanding, reminding us that while our journeys may di5er, we’re never alone.

We hope these poems speak to you as much as writing them has meant to us.

I am truly grateful to our members for contributing towards the success of this project and, am deeply proud and humbled by the incredible work produced.

Lisa Steadman Chair, Local Families with Bleeding Disorders

9

the generation gap So I understand your son has a bleeding disorder?

Day five after birth, when the hormones come crashing down according to the books, and now this.

Has he? Nobody told me.

They should have told me, but they hadn’t.

It was the call I had been waiting for.

I always knew this might be coming.

It was a fifty-fifty chance, so wasn’t really a surprise.

But what now?

I thought I knew what it would mean.

But life is di;erent to sixty years ago, when dad was a young boy, his mum a young woman.

None of their experience seems relevant.

My amazing, wonderful, resilient dad.

No diagnosis, then no treatment, then treatment tragedies.

Joint damage, bleeds, bruises, constant pain.

So much to shoulder, so much to cause su;ering.

This life will be di;erent, Better, I hope.

I know my dad will support me and understand.

But it will all be so di;erent.

How will he feel about that?

What goes through his mind watching treatment day?

He must be so overwhelmed.

So proud of his grandson, coping with bleeds and injections.

So relieved it’s di;erent to his day.

As for me, I have conflicting feelings hope for my son, sadness for my dad, worry for myself.

How will we navigate this?

I don’t know, but we will.

As we are all in this together, finding our own special way.

10

sonnet for a five-day old They insisted on checking for jaundice, the gentle machine broken, blood the only way.

They mentioned it was hard to draw from a newborn; that blood knows where it needs to stay.

It went against all our instincts, and when you continued to bleed, I knew I had failed to protect you, to keep the wolves at bay.

I held you, so tiny, legs lost in too-large clothing, a wire daring to assault you, or save you, who knew.

How could I trust myself, my supposed motherly intuition, or believe in medicine, now both had proven so false?

I was helpless, adrift, but you did not cry, calmly indi;erent to starched sheets, bright lights and alarms.

In that moment, I realised what mothers have known for centuries: I was not enough, but for you, I would grow.

11

what they didn’t tell me At eight months we finally had a diagnosis: Severe Haemophilia Type A. They told me of a life of needles, hospitals and unpredictability.

I was thrown into a world of infusions, blood tests and fear.

What they didn’t tell me about was the deep bond we would have the ongoing trust we would develop the deep, emotional chats we would navigate.

That you would make me laugh every single day that you would be the world's best cuddler that you would love with all your heart and smile with all your soul.

They didn’t tell me that you would love animals and hate cake, that my family would become this awesome, cool team.

They didn’t tell me that we would meet strangers we now call friends that people in uniform would sometimes feel like family.

That you would find your sweet little way That it would all be ok That it would all be ok That it would all be ok

12

fourteen months More unexplained bruises.

How could this be when I wrap my baby in cotton wool?

There was something very wrong but no one would listen, no one would help.

And then a phone call, this time summoning us to hospital: Pack his bags, you may not bring him home.

Sheer panic and fear running through me.

Then, sitting on a hospital bed, baby in my arms, the doctor said I believe you.

Those magical words.

Fourteen months I had been fighting to hear them, to feel listened to, to feel safe.

Fourteen months I’d been fighting for a diagnosis, Then the words your baby has haemophilia.

The uncertainty of our new normal.

And who were all these people in the consultation room?

The feeling of relief when I realised that this was our team.

A team of listeners, fixers and protectors for people caught in a broken system.

13

inheritance When I hold him, this is what I think: my body made him, and my body failed him.

Haemophilia – no echo of it behind me, no whispered warnings in the bloodline.

No grandfather’s limp, no uncle’s silence.

We were OK or so we thought.

And then came the news clinical and sharp, like a door slammed in a quiet house.

Genetic mutation – as if randomness is less cruel than inheritance.

He was perfect until he bled.

I didn’t know my body could write tragedy into the very instructions for a life.

No history – just the future now, mapped in infusions, bruises blooming like unanswered questions.

And I still count it, the time between fall and scream: the leap from the sofa, the stumble on the gravel.

He trusts the ground.

I’ve learned not to.

I watch joy with suspicion.

What haunts me most is that there’s no name to blame.

No family tale.

No myth to fold into meaning.

Only a single cell 14

that veered o; course – and made a home in him.

Still, I carry him.

Still, I whisper safety into his sleep.

Still, I tell him his blood is not broken, just rare.

But in the dark, I curse the silence it came from, the mystery that chose him without reason, without memory, without mercy.

15

just you and me and this gene It was me that passed this gene on It was mine and I gave it to you Unknowingly Our bodies carrying this precious link The shock when we all found out Life-changing On one hand we are in this cute little club Just you and me and this gene Bonded On the other I am so terribly sad Guilt-ridden for passing it on I’m sorry But my goodness this gene makes up part of who you are Awesome My perfect and sweet little guy Just you and me and this gene Unique All we have is love and hope Bravery, resilience and trust Power

16

bloodline People talk of leaving a legacy, of the importance of passing on their DNA, as though that act is their primary purpose.

I see it, sometimes, when I catch a certain smile, when your eyes crinkle just like your dad’s, your laugh sounds just like your sister.

But what have I handed you, my love?

I cannot deem it a legacy, a gift, when it is so tainted.

I selfishly chose to risk you, wanted you so badly to grow, curled tight within me, fluttering.

And now you are here, and you are beyond a gift; but was it my choice to make for you?

The cup I passed to you did not just contain the genes for eye colour, but hid a poisoned barb.

And whilst I see you succeed, see you race for the moon, I also see you injected, tested, see you cry in pain, and wonder: will I ever not question this?

Will you, once grown, ask how could I have done this?

And what will I respond?

17

DNA lottery winner Never any blame, it couldn’t be helped, just a split chance, fifty percent each way.

One daughter inherited it, one didn’t, the older of the two never begrudged, never compared, never complained.

Just one sister treated di;erently, but only ever for their own health.

Just a lived-with thing, no real di;erence, just always there.

18

severe A I grew up watching my mum inject my brother, sitting around the kitchen table with my sister, mum panicking because she’d missed the vein, never imagining my motherhood journey would be the same.

I should have known, should have seen it coming.

Haemophilia runs through me.

It ran straight into my son.

The guilt is unimaginable.

Bruises, bleeds, injections, our life is so di;erent from back then, and yet so much is the same – it’s like being trapped back at that kitchen table.

But I would never change it.

It is a part of my son and a part of me.

We are bruised, not broken, and we are so happy.

19

the matriarch A hidden disease passed down through generations, undetected.

A matriarch of bruisers and bleeders, our normal, undiagnosed.

Monthly blood loss, dizziness, aching joints.

Prolonged bleeding after childbirth, the inability to heal.

Questions asked but no answers given.

Then a child is born, a son, my son.

I bleed, he bruises.

I hold him tight, I fight, I advocate.

And then we have it – Haemophilia.

A bond through bleeding.

20

words for mum Another word for Mum is watcher.

I draw quietly from a well of fear a dozen times before breakfast.

I count the hours by what might go wrong.

By how long since he last fell, how loud the silence after a crash.

Theo doesn’t know this.

His joy is still untethered.

He runs like the world is made of cushions, like nothing under his skin could betray him.

But I know his blood forgets its work.

I know the names of bruises before they bloom.

I know the cold clarity of hemlibra vials and gauze and how to smile while pressing a cotton ball against what wants to spill.

Another word for child is Theo.

He asks if he can climb the hill, if he can jump.

And my yes is always shaped like no, coated in caution.

There are days he wakes full of fire, and I must become a rain gentle enough not to put him out.

I make bargains in silence – just let today be soft.

Just let him come back with all his blood still inside him.

Another word for love is stillness.

Another is teaching – showing him not to be afraid while holding enough fear for us both.

21

Sometimes, I am both cradle and shield.

Sometimes I am the ground he lands on when he forgets.

And at night, when he’s dreaming, I press my ear to the door and name the silence ‘safe’.

Another word for mother is release – I am the one who learns to let him go a little each day – even as everything in her reaches out to hold him.

22

wake up I hear a car.

It’s light through the curtain, I can see it bright through my eyelids.

A lorry just beeped –

I bet a car is parked on the corner again and it’s telling it to move.

It can’t fit through.

Oh god, I didn’t set an alarm I’m scared to look what time it is I need to open my eyes.

I can’t hear Alf. The lorry beeps again – wait, that must mean it’s early, the cars don’t need to move until 9am.

I can have five more minutes.

But now I can’t rest just check your phone I can hear another car.

Just wake up.

OK I’m up – time to mix up Alf’s injection and do the thing I dread the most.

23

another bad night?

I wake up suddenly.

Always before the alarm.

Time to face reality.

Has it been another bad night?

Will there be blood on the pillow, blood on the sheets, blood in his hair, even smeared on the walls?

He has a wobbly tooth.

It isn’t ready to come out.

The gum keeps bleeding.

The treatment isn’t working, the bleeds never stop.

I’m scared to go in and face whatever is waiting.

Has he lost much blood? Has he slept well?

Will we need to go to hospital? Increase treatment?

How does he feel? Does he worry?

He seems to cope so well, takes it all in his stride, but how can he when this feels so hard to me?

Is he really okay? Does he know how to say if he isn’t?

He should be bouncing out of bed, getting ready for school, not cleaning blood from his body and wondering when it will stop.

We long for a morning where we just get on with our day, but when will that happen? Definitely not today.

24

awaking Something has woken me.

I blink, take a breath, register a giggle before a cuddly toy slams into my face.

I shake the cobwebs of my dreams, the vague hint of something unfinished, and drag myself to the present just in time to receive the solid weight of your embrace; a knee in my hip, an elbow to my ribs, and a kiss, sloppy but beautiful, on my cheek.

I remember that once there were quiet wakings, mornings easy and slow; but I do not miss them, would never swap the calm when I could have your squishy cheek, these chubby fingers in my hair, our heartbeats talking to each other.

Good morning.

You are mine.

25

the calm, precious morning The morning light seeps in gently across your quiet, cowboy-themed room.

I’m watching you sleep my sweet little boy, so peaceful and unaware of the dance your body performs to keep you safe.

As the wondrous, dangerous world outside begins to spin, I whisper please no bumps or bruises today.

My heart so full and alert, counting your breaths, grateful for this precious calm and a new, hopeful day filled with so much love.

26

i love a list I love a list!

A way to empty my brain.

An exchange of words on a page.

A conversation with myself.

I love a list!

Read all the school and nursery whatsapp messages.

Book that dentist appointment.

Buy that birthday present.

Send o; my new website requirements.

I love a list!

Even if I don’t get through all of my list today I gently roll It into tomorrow, where I repeat the same routine and regain my power over my never-ending to do list and close o; each day like a competed chapter in a book.

27

the therapist’s chair Ten years of carrying all of this, the heartache, chaos and heavy pain.

All these emotions too big to let out, me, too busy to be heard or seen.

I must remain strong, but at my core feel weak.

The therapist sits across from me, holds space and time for my mind.

No judgement, no useless advice, no cure, just hours of sitting, coaxing and crying.

I am finally heard, seen, validated.

And then a gentle voice in my mind whispers This load’s too big to carry, my love – you can gently put some of it down.

I stand, lighter, healing, finding strength in the softness and wisdom in the pain.

28

the impossible ladder I carry a heavy duty silvershiny ladder.

It’s so hard to climb, but I’m trying, I really am.

Sometimes I get near the top but inevitably I end up falling two or three rungs down.

Gripping, holding on, I’ll keep climbing.

One day I’ll get to the top and look down at how far we’ve all come.

One day, but not today.

Not yet

29

open water My legs are kicking hard to keep the house afloat.

The dog needs a walk the plants need water there’s no food in the fridge packed lunch isn’t made school uniform’s not dry and the grass isn’t mowed.

My legs are getting tired.

A trip to the wholesalers clients to book in a full day at work Alf’s homework begins beds to be made dinner to cook.

The water’s getting higher.

I haven’t done Alf’s injection it’s already so late I have to rouse him from sleep for something he hates mixing it up panic’s setting in.

I can’t catch a breath.

It’s all done now my boy is so brave the most important thing left for the end of the day I feel so guilty but everything’s ok.

I won’t drown today.

30

early rising I am awakened early Always early Not by the birds or the first light of the morning But by my boys.

My first thought is always Did they sleep well?

Are they OK? The minute I wake I click into action My reality hits me like a heavy weight What will today bring?

31

on waking Light streams through the window the birds are singing I listen for footsteps, for voices, for signs of movement all is still all is silent all is safe – tucked up in bed, I watch you, a shallow breath, peaceful, asleep.

Not for long.

The chaos will come, then the chattering voices, music, movement, running not walking.

Risk.

32

juggling I used to like lists, but now I find it hard to plan.

The thing is, plans always get side tracked.

Work meetings at 9am Travel to London or maybe Birmingham for work Attend school sports day Book school lunches Order the meds Don’t forget to administer the meds!

One phone call from school is all it takes.

A rushed journey home.

A missed delivery of medication to re-arrange.

I am forever juggling priorities.

33

pretty lists everywhere I’ve got lists everywhere.

On my phone, on paper, pretty ones with bullet points highlighted with di;erent coloured pens.

I love writing them, for the order and control.

Work stu;, mum stu;, fun stu;, chores, goals, aspirations, exercises, more… kid’s stu;, medicines, appointments to sort, things to buy, cooking, tidying, more…

Sometimes overwhelming, so much to do.

Sometimes satisfying, so much to achieve.

I wonder if I need them all?

I’ll never finish, they’ll never get done, but I love the tick, the sense of order in this chaotic world, in this chaotic mind.

34

the worry ladder I want to move up the ladder on the one hand, and move down the ladder on the other.

I want the clotting factor levels to rise, to move us up the ladder, to stop the bleeds and bruises.

To physically see the treatment working.

I want the inhibitor detection level to go down.

Disappear ideally!

O; the bottom rung!

To tell us that the body is not fighting o; the treatment.

Allowing the body to do its work, to stop the bleeding.

Allowing us to steady ourselves on the ladder.

Will we go up or down the ladder this week?

Waiting for results.

Checking for the email.

Waiting for the call.

Constantly worrying about numbers.

Hopes raised and dashed.

Fears constant.

Hypervigilance high.

When we will reach our destination?

Does anyone know?

What happens when we do?

Will things ever be the same?

Will the worry ever end?

Hoping that one day, we will reach the right level on our ladder, and stay there.

Stable. Forever.

35

list, repeat My list plays on repeat in my head over and over and over.

I need to write it down and then I can begin.

The top of my list is to write out my list.

What notebook shall I use?

Where is a pen?

Once my list is written, my brain is clear, I can start ticking it o;.

But it’s too late now, I’ll have to start tomorrow.

36

worry Another word for bruising is worry.

Worry is when the accident happens and the bruising starts to appear.

Worry is when there are no bruises – what is happening inside?

Worry is not knowing what people may say or think when the marks appear upon your son’s skin.

Other words for son are confident, strong and ambitious.

And two more boundary-pushing and adventurous.

So many words for one so small, whose disability will not hold him back.

But a mother can only encourage living life to the full, watching through bated breaths and being there when he falls.

37

the list of life Always adding, rarely taking away constantly there, if not in my head, then on paper, or both now I am getting older.

Never-ending circle conscious or subconscious conflicting priorities, now or later? always something!

38

rungs When I was young I thought life was straight forward, onwards, step after step rung after rung.

Growing up was dull but it was known, safe: there would be school, university, a job, a spouse, things that mark you an adult.

Knowledge would come step after step time after time: how to run a house, how to pay taxes, how to raise a child.

But sometimes things turn out a little di;erently, a wobble of the ladder a rung breaking beneath my feet a total lack of knowing what to do how to look after a baby at all let alone how to become a medical expert what ‘advocating’ means in practice where is best to park for all the hospitals whilst running on three hours’ sleep But somehow slowly, step by tired step, teams and family and village rally around community builds, and helps the path return to something straighter.

The rungs are still there under my feet, I climb them more cautiously, I reach faster for a steadying hand when I wobble when I feel those fears sneak in but then we climb together.

39

my ladder I am climbing out of the dark Finding strength A sense of who I am Trust Advocating Breaking barriers The return of fun and laughter Moving towards the light

40

mumma and her boy Another word for ‘Mumma’ is worry wrapped up and disguised in a big bear hug.

Worry for every treatment day, when sadness and fear creeps in.

For the phone calls from school, waiting to find out what’s happened.

Worry that the memories come up to haunt you at hospital visits, holding it all together in a neat package disguised as a smile.

Worry for the future although striving to live for today.

Another word for my boy is brave wrapped up and disguised in a big bear hug Brave and joyful, fun and mischievous.

Laughter that brightens up the darkest of days, thoughts expressed like an expert, wise beyond his little years.

Mumma and her boy, my hero, my heart, my strength, my joy, wrapped up and disguised in a big bear hug, bound tightly with the thread of love.

41

what is sleep?

In fact, I never feel I ‘wake up’ anymore, I am awake more than I am asleep overnight, awake, asleep, conscious or sub-conscious, it’s all a muddle to me.

One thing for certain though, is that I must look at the time – it’s insignificant, meaningless but I always look.

No alarms set, no need any more, I’m always awake before the sun – but as every new day breaks, I am reminded life without sleep certainly isn’t fun.

42

up the stairs to bed Three steps up, two steps down, maybe tonight is the night hopefully thirty minutes, an hour, maybe two.

Too hot, too cold, quiet, noisy forever restless, often no apparent reason.

Then I see your face again sometimes once, sometimes twice, sometimes more incomplete, never a full night’s sleep, never a cross word, just cuddles, tomorrow comes another night, always hopeful, maybe higher, maybe longer, maybe complete.

43

my acquaintance, worry Worry twists my stomach, but it helps keeps you safe.

Worry keeps me awake at night, but it reminds me to check our medicine supplies, it makes sure we have appointments booked.

Worry brings me headaches, raises questions without answers, but prompts packing lists, forces organisation ahead of time.

Worry muddies my decisions, guides my Google searches into dark places, but it also leads me to find fellow worriers stumbling through the same troubles, who help bring the light back.

I cannot call Worry my friend, and yet neither is he my enemy.

We often stand together, Worry and I, at the foot of your bed, and we watch your chest rise softly in sleep.

Then I bid you both goodnight.

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just a carrier I carry the gene.

Which means I also carry a lot of worry, emotion, guilt.

I was only 12 years old when I was told I carry the gene.

I grew up scared, I had no idea how much that would impact the rest of my life.

Growing up, my bruises were so much worse than my friends and I didn’t understand why.

Each month the bleeding would start and I wouldn’t know when it would end – nobody told me it wasn’t normal to be surrounded by such a big bloody mess.

My whole life the hospital has told me girls aren’t a;ected by haemophilia – they said I’m just a carrier, nothing more, nothing less.

When I was expecting my son, the hospital had a plan solely for him – high risk, extra scans, everything was in place to keep him safe.

I was so happy. I was so scared.

There wasn’t a plan for me.

When my boy was born, it nearly killed me.

I lost too much blood, but my boy was OK and I am forever grateful.

No one saw me.

They should have put things in place for me as a ‘carrier’ – but they didn’t.

I’m just a carrier, but as a woman and a mother, I have been severely a;ected – I will always worry about my son’s health and my own, and I will always have to do things other mothers don’t – injections, hospital trips.

It’s a cycle from which I’ll never be freed.

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i don’t wear white Things have always been di5erent for me, not that I can compare as everyone else’s version you never see Never seen, never spoken about, especially when younger, Is hers worse than mine, I used to wonder Heavier and longer compared to most I’m almost certain, Leaves me wanting to hide away behind a curtain Month after month, year after year The constant anxiety of leaks I always fear Special clothes for the occasion, loose and dark Always checking, are these trousers too tight, can you see, is there any signs of a mark On hot or busy days at its heaviest due to blood pressure but it’s something you can never really measure No control over what happens or when it stops the worst is when it turns into huge clots In the early years blood soaked sheets every four weeks, it wasn’t my fault, at night I couldn’t control the leaks Probably a blessing karate was banned when I was younger turning white trousers red, in front of everyone, the fear I would have been under Sometimes it would play a little trick, I would think it had stopped It had not, then the floor needed to be mopped As I got older I got used to the fear, but it’s always there, always near, always worried about my rear With medication and age it’s much easier to cope with, but it’s made me self conscious every day that I live, constant flashbacks to occasions of leaks in younger years, back to the anxiety of all those fears.

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the constant fight for what’s right How hard can it be, to get a prescription for medicine that’s free The same argument every three months, made di;icult at every turn, as if the NHS has money to burn You see without this tiny tablet I’ll bleed out every month needing treatment that costs thousands and that’s putting it blunt Blood clots are common on this medication they say In reality I’m more likely to win the lottery one day From doctors to pharmacists and back round again, always the same and it’s hurting my brain Something so simple is always so hard, So much so I have been resorted to tears in Asda pharmacy, almost getting barred Resorted to purchasing from the internet to be stress free, which goes against every fibre of me Hopefully the next stage of life without these tablets will be easier for me Or will it – I’ll guess I’ll have to see!

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seesaw My life is a ladder.

It is strong, but struggling under the weight of its baggage.

It tips like a seesaw between my two boys.

Haemophilia one end and MCADD the other.

How do I strike a balance and stop the constant swing.

I don’t have the answer to that right now.

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a life’s work She’s always so positive and full of life they would say, but why wouldn’t I be – I’m fine day to day.

It’s the adventures and the activities I want to take part in that cause the issues, but when things went wrong, Mum was always there with bandages and tissues.

Aged five during PE there was so much confusion, when handstands broke blood vessels that lead to transfusion.

Bruised shins from football – the smell of witch hazel I recall, I remember it like yesterday, with the hospital always on call.

An eight-year-old girl wanting to do karate, just like her best friend, I would drive my mum around the bend, always asking please let me go, ask the doctor she would say but he told me No. I begged him, year after year: I will be careful I swear.

Finally, as an adult, a purple stripe belt I now wear.

The summer holidays, aged eleven, that’s when the real trouble began, as into a lamppost I ran, a head like an egg, unconscious and sick, I’m sure that lamppost was as hard as a brick.

Brain scans and lost days, nothing I can actually remember, thankfully everything was fine and forgotten by November.

Teeth falling out, investigations and operations galore, inpatients and outpatients, the hospital building turning into an eyesore, a new shiny blue one they built, all mod cons, but it doesn’t feel the same, everything changed apart from the name.

Always wanted a child but put o5 until later in life, a scary thought reignited once I became a wife.

Second time around, a baby was born that broke the pattern of my family DNA. However, complications separated us straight away, my consultants and nurses even held him before I did that day.

A new challenge arose before I was forty, a bucket list thing I had almost forgotten, 26.2 miles of the streets of London I have trodden, a great way to give back for a life worth of treatment and care, and now a London Marathon Medal around my neck I wear.

It’s never defined me, I’ve always been free, it’s just an inconvenient little thing called VWD. Things in life at the moment are great, but one thing’s for certain – I wouldn’t be here if it wasn’t for Factor Eight!

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the quiet strength of listening To lend an ear is more than just to hear – it’s holding space when storms begin to rise, a stillness formed when hearts draw gently near, and sorrow’s weight is met with calm replies.

No need for answers, only open grace – a refuge found in one soft, steady face.

She spoke of fear – her newborn, small and frail, the word ‘haemophilia’ hanging in the air.

She wept for dreams she thought would now derail, their world askew with burdens – hard to bear.

But listened to, her tears began to slow – hope sparked anew through what she came to know.

For life, though changed, can still be bold and bright – her son, his strength, a power forged from quiet light.

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why will no one listen to me?

The need to be believed, heard, recognised, is so necessary in a world of turmoil and chaos.

The need to feel valued, understood, validated.

It can be so healing in a complex world of injuries, medicines, hospital visits.

The acceptance of the parent or patient voice, is so crucial in a world full of expert consultants, nurses, physios.

Waiting in A&E, we feel ignored.

The parent voice isn’t valued or believed.

The consultant isn’t here yet, please wait.

But I am an expert too. I could help explain.

If only they would listen, I can tell them.

A rare condition means parent and patient voices are important.

We need to be heard. Just listen to us.

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please, listen to me No one listened to me. For so long.

His injections weren’t working I couldn’t get the needle in his bruises were getting worse his bleeds more frequent.

He’d outgrown his port and nobody knew.

Then they finally listened to me.

He had a PICC line put in.

The district nurses came, his teacher held his hand and mine his operation was booked a new port put in he’s getting his treatment now.

Finally, we’re back to our normal.

Finally, we’re not on our own.

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dental disaster These two troublesome teeth are finally being removed, what a wait it has been.

Treatment has been arranged, travel plans made, accompanied by mum for support. I leave bright and early before sunrise, mum joining me halfway as I bravely board the train. We arrive at the hospital, sunshine reflecting on the walls from the outer glazed panels of the building, where the hospital team wait with huge smiles as bright as the sun. Same space, same routine, same faces. With my treatment complete, no hassle, no fuss, I leave, walking anxiously away from familiarity over to the next department. I greet the receptionist with my name also ensuring they know that time is limited before my treatment wears o;. ‘Take a seat’ she whispers back.

I sit with mum adjacent to the window, sun beaming through onto the hands of the clock opposite us, as the time ticks by slowly. We seem to sit for ages, clock hands barely moving as if time is standing still. ‘Don’t they know they need to be quick?’ I mutter to mum. As the hands stop on the hour I hear my name. Heart racing, I enter the room and lie nervously in the chair, gripping the leather handles tightly until my knuckles turn white. Injections in, unable to feel my mouth or make a sound. ‘Just this one tooth!’ the dentist shouts as she quickly tugs and pulls and holds up a blood-stained tooth. I try to speak, incoherent, spitting everywhere, ‘No it’s two!’. Unable to be heard, mum shouts for me ‘No its two!’. ‘I’ll check your notes and X-ray’ exclaims the dentist – more time wasted, fifteen minutes pass before she realises her mistake.

I remember the sun reflecting o; the tooth-removal tool as she moves it closer and closer to my face. ‘No!’ both Mum and I scream in unison, ‘You can’t, it’s been too long, treatment will be wearing o;!’. If only she had listened in the first place. With the warm sun on our faces, both Mum and I leave in tears, now both unable to speak, let down and ignored. The other tooth still remains in place to this day and will do until I am in enough pain to have to face going through all this again.

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what a bloody night Back home from the hospital dentist, pain slowly creeps in.

I’m physically and mentally tired, it’s been a long day, time taken for travel, treatment and procedure, not to mention delay.

Bed pillows propped up, dark cases and sheets, bound to be a mess at some point.

Tired, heavy eyes, sore face and jaw, I slowly drift o;, nighty night I say.

I awake suddenly gasping, something blocking my throat – the horrid taste of iron, a dislodged clot that’s lost its way, You see my blood is very di;erent, it runs free, there’s nothing that really stops it flowing out of me.

This cycle continues all through the night – the bedding in the morning is an awful sight.

No rest for me for the forthcoming nights – I try to sleep sitting up, blood never really kept at bay, until finally my mouth has healed, slowly, day after day.

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other words Another word for a mother is worry.

Worry hears the foxes fighting in the night, the first birdsong in the soft morning light.

Worry sets up the treatment tray for the morning, to create a sense of calm, and mask the worry.

Another word for son is inspirational, and another word, enigmatic.

And another is One-Who-Bravely-Faces-the-Day. Yet another, One-Who-Never-Gives-Up. So many words for son: He-Inspires-us-all-to-be-Brave.

His-Quietness-Fuels-Worry-Without-Awareness.

His-Calmness-Raises-Questions-With-no-Answers.

But about this other word for a mother, worry – it can’t be helped, it’s part of this life, it is always there but comes in waves, in the heart, mind and soul.

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overwhelm Angry at those who should have known better who didn’t listen when I needed to be heard Angry no one saw all his bruises and didn’t think to be concerned Angry for the wrongful reporting, the judgement, when what we needed was help Angry it took three visits and refusing to leave, to be referred Angry at all the wasted time when he was undiagnosed and unsafe Angry at all of the hospital visits and the operations that went wrong Angry for all the needles, thousand and thousands of times Angry when I missed his sweet little vein and he was screaming for me to stop Angry for years of distress and fear when he was too little to understand Angry I had to do it to him again and again and again Angry that I passed on this bleeding gene that causes him so much pain Anger then, sadness now, my face a fountain of tears.

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the light for our path I had done my research diligently, knew what was required and where.

Yet in that overwarm surgery room sat the man who knew best, his years of experience far outweighing any personal, lived knowledge.

He cared not for the time he was wasting.

Months later, dead ends negotiated, letters written, appointments waited for endlessly, suddenly there was you: a doctor who knew exactly what we meant.

Who knew the right way, the best way, who did not couch things gently, but was direct and blunt and held the shining keys to what we sought.

The path you walked us to was not always golden, but even to set our feet upon it was worth its weight in jewels.

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choices They say choices are not black and white, they are grey.

But our choice felt pink: squishy, long-dreamed-of baby thigh rolls And red: angry blood cells forced into tubes, too many drops on small circular plasters And blue: your tiny hat as we carried you home the sharp crinkled curtains of hospital bays so many tears fallen over months and years.

We made our choice though we doubted the wisdom of it even then, especially when we knew what it had brought upon you.

I doubt it now, on the hard days, but not all the days.

When you ask the hard questions, and wonder why you have to be special, I do not have a good answer.

And yet the choice that was meant to be grey burst brilliantly into colour, brought me you, the pink of your cheeks as you laugh, the red of your stuck-out tongue as you concentrate, the blue of your pen writing ‘I love you’.

I could have it no other way.

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contributors Alexandra Akrimi I live in Kent with my husband and our two boys, aged seven and four. My eldest has severe Type A haemophilia, something we discovered when he was just five months old.

I’ve always loved reading and did some creative writing many years ago, but poetry was completely new to me. Being part of this project has been both exciting and nerve-wracking — and ultimately so empowering. It’s been incredible to be surrounded by such an amazing group of women, to share our stories, and to express feelings with people who truly understand.

I’ve learned so much from this experience, not just about writing, but about connection and strength. I hope that in reading this collection, others might also feel inspired to find their own voice and share their stories in whatever way feels right for them.

Claire Brown I live in Wiltshire with my husband and our two sons. One of my boys has Severe Haemophilia A, while the other does not. We have no history of Haemophilia or bleeding disorders in our family, so receiving the diagnosis came as quite a shock.

Despite the challenges, we don’t let Haemophilia hold us back. It’s become a part of our lives, but it doesn’t define us.

I’ve never done any creative writing before this project, but I’ve found it to be the perfect outlet — a way to express my experiences, emotions, and the journey our family has been on.

Hannah Brunning I live in Surrey with my husband and two children, one of which is 11 and has severe haemophilia type A. I work as a physiotherapist in the local community. Having never written creatively before (apart from at school) and being a lover of words and poems, I was really keen to challenge myself with writing some poetry. It was wonderful to be part of such a lovely, supportive group and a deeply healing experience to be able to put down thoughts, feelings and experiences into 'poems'.

Marie Staples My name is Marie, I am 43 years old and live in Essex. I have a bleeding disorder called Von Willie Brands Disease (VWD) and I was tested and diagnosed at birth as I have inherited the condition from my father.

Although initially a member of Local Families with Bleeding Disorders, I am now a Committee Member. When the opportunity arose to join the poetry project I jumped at it. I studied Art and Design at college many years ago and I still like to dabble in that in di5erent ways as a hobby, but I have never done any kind of creative writing before and was keen to explore how this could relate to my bleeding disorder.

The whole experience of the project has been enlightening, although sometimes out of my comfort zone I feel I have been able to push the boundaries of my own thoughts and memories and been able to put these to paper in order to raise awareness and share the array of bleeding disorders that exist and the ways in which mine has a5ected my life over the years.

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Natalie Stead I live in Kent with my 11-year-old son Alfred who is the bravest person that I know. Alf has severe haemophilia, something I knew was a possibility when I was pregnant and he was diagnosed at birth. I am a hairdresser and love to crochet but have never read or attempted to write poetry before. I wanted to take part in this project to try and voice some of the feelings and experiences of growing up in a family severely a5ected by haemophilia and then becoming a mother and nurse all in one go.

I found it quite distressing at times to revisit all of the traumas we’ve had along the way but ultimately, I found some strength in writing them down. I hope they o5er a slight insight for other families who might be feeling unsupported and unseen. It was a really wonderful project to be a part of, made more lovely to be able to talk to other women who know exactly what we’re going through.

Lisa Steadman I live in South West London and have a 20-year-old son and 18-year-old daughter. This is my first time writing poetry, and although I wouldn’t usually feel confident with creative writing, I believed it could be a valuable way to express the thoughts and emotions that come with living in a family a5ected by bleeding disorders. I'm also the Chair of Local Families with Bleeding Disorders, and while we often focus on social events as a way to support our members and their families, I saw this project as a powerful alternative way to support members who were perhaps looking for a di5erent way to engage with the charity and other members. The process has enabled us all to find our voices about experiences that are often hard to put into words which has been incredibly cathartic and empowering.

Sarah West I live in South East London and am mum to a six-year-old son and a three-year-old daughter. I’m an accountant now, but my original love was for words – I did an English Literature degree primarily because it seemed like a great excuse to spend three years reading! That said, I’m much more comfortable reading rather than writing, and poetry definitely wasn’t something I’ve explored previously. I’m a trustee for Local Families with Bleeding Disorders and the opportunity to take part in this project along with some of our amazing members was just brilliant, getting to know them better and exploring and unpacking our shared and di5ering experiences in this unique way.

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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. She is committed to enabling everyone, whoever they are, to tell their story, and was the poetry tutor, mentor and editorial advisor for Helix of Love, the Wellcome Trust funded Ethical Preparedness in Genomic Medicine project based at BSMS and the University of Oxford. Her own poetry publications include the Brian Dempsey Award winner Instead, Let Us Say (Dempsey & Windle, 2019), two Pushcart Prize-nominated pamphlets – This Meeting of Tracks, published in the fourpoet collection Mend & Hone (Toadlily Press, 2013), and Aloneness is a Many-Headed Bird (Hedgehog Poetry Press, 2020), a ‘conversation in poetry’ with Rosie Jackson – and The Bird Room (Hedgehog Poetry Press, 2023). She is Poetry Editor of Caduceus magazine and coproduces and presents The Poetry Place on West Wilts Radio. You can contact her at: dawn@dawngorman.co.uk Richard Gorman Richard Gorman is Assistant Professor in Ethics and Social Science at Brighton and Sussex Medical School. His research is interested in the social and ethical implications of di5erent healthcare practices – ranging from gene therapies through to nature-based therapies. Rich has a particular focus on using creative and participatory approaches to allow lived experiences to be at the heart of knowledge production. Rich himself lives with severe haemophilia a, and is an advocate for making sure that the voices of families a5ected by bleeding disorders are able to play a role in informing current and future care pathways.

Cover design by Matt Bemment 62

REVIEWS “A beautiful collection of poems portraying the sometimes heart breaking intersection between family, genetics and a potentially life-threatening illness. Highly recommended.” - Professor Richard McManus, Dean of Brighton and Sussex Medical School and GP in Brighton.

“Academic writing is all too often dense, inaccessible and lifeless; far removed from the passion that drives us to carry out research in the first place, or from the complex, messy realities we seek to illuminate. As Moriarty (2012) writes, all too often ‘the blood is taken out’ of our writing.

The irony of these words sat with me as I read this wonderful book. These poems are powerful, evocative, passionate and generously given. They are the words of mothers, daughters, patients, participants and, above all, people, in all their messy glory. These poems encourage us to listen to, understand and value the words of those who struggle; to resist the desire to enthrone ourselves as experts whose ‘years of experience far outweigh … personal, lived knowledge.’ These are, in more ways than one, words with the blood left in.” – Dr Helen Johnson, Co-Director of the Centre for Arts and Wellbeing, University of Brighton

ABOUT THE COLLECTION Bleeding and Belonging is a collection of poems written by families affected by bleeding disorders. The poems gathered here give voice to the emotions, uncertainties, and resilience that shape life with bleeding disorders. They open windows onto experiences that are often absent from clinical accounts by offering personal, emotive, and deeply human perspectives.

“The strength, love and hope that shines through the work is inspirational.” – Dr Mary Mathias, Children’s Bleeding Disorder Consultant “Everyone should read them – for they are truly powerful.”

- Dr Kate Khair, Director of Research at Haemnet and Patron of The Haemophilia Society