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Writing out of the HD Shadow – The winning entries

After receiving 127 entries to our flash fiction competition ‘Writing out of the HD shadow’, the three winners have now been chosen.

First, second and third placed entries were unveiled at a ceremony in Glasgow’s Mitchell Library on November 7 where cash prizes of £500, £300 and £100 were presented to the winning authors by judges and established writers Michael Mallone and Alan Bissett.

The competition task was to write a Huntington’s disease story in 150 words or less.

‘Overall the standard of entries, from all over the world, was extremely high and and we would like to thank everyone who took the trouble to enter. We really enjoyed reading them all and it has been a great way to spread understanding about Huntington’s disease,’ said campaign organiser, Sally Brewer.

‘I would urge everyone to also take the time to enjoy reading all the shortlisted entries.’

Writing Out of the HD Shadow will be back in 2017 with a brand new theme, launching in August of next year, so stay tuned for more details…

Winners
First Prize Story – Claire Hamilton-Russell
She glances at her watch again. Her thighs stick to the unpleasant plasticky upholstery of the seat.
She recalls sitting in this very waiting room 25 years ago, swinging her tiny feet while her father got his diagnosis inside the office. She had always sworn she would never be back here. She would take each day as it came; a blank page she could write her own story on without an inescapable tomorrow to rob her days of sweetness, as they had for Baba.
She looks down and realises that, without meaning to, she has taken the little stick out of her bag.
She turns it over in her hands and looks again at the two faint lines in the little window. Such little things to change everything.
“Parvinder Lalnar?”
The receptionist calls her name. She peels herself painfully from the seat and squares her shoulders. The future beckons.

Second Prize Story – James Mitchell
Wordless
“Let’s go see mum.” My Dad said as we left the house my Great-Gran had just died in. Cleared out and divvied up after the funeral. I couldn’t say no. There was no more avoiding it.
We arrived at the care home, my heart in my stomach. I went in for a hug and got a hand in the throat. The nurses said she was happy to see me. Her words had mostly vanished and I could only make out basic noises. The ones that hurt the most, should never hurt a person.
“I…Lohhh…Y…hhoh…” Over and over, an eternal 30 minutes. I said it back “I Love You.” and hoped she understood. As we started to go she began to wail, I left unable to take it and dad said my farewell. It felt like I had lost two relatives that day.
One dead, one lost internally.

Third Prize Story – Clair Fitzharris
I like sunsets. I like views. They make me feel peace and calmness in a mysterious world with unknown possibilities fears and hopes.
I like when she sleeps. Still and calm and at peace just clear blue water when you look at it with no waves or anything just pure and content.
I like when she laughs. Like when it’s warm and sunny and happiness can be felt around.
I hate hailstones, rain and wind and emotional earthquake rollercoasters which are swallowing your whole world up and tearing it apart from inside.
But when the night comes and a new day is ahead I lay in bed and think of that sunset.

Under 16s First Prize Story – Karen Lau
Engraved in Memory Of
The nebulous neon letters glowed feebly under the glare of a street lamp, but gave a beckoning sizzle. Pushing the door open, I flinched at the tocsin-like ringing of bells and at the skramz music that charged into my soul. Sitting amidst the tattooed walls was a tall, glaring man.
He looked at my design. A blue ribbon, with abstract wings entangled around the gothic letters of “Huntington’s”. It was for my dad.
“Where do ye want it?”
I bit my nether lip. Where? I hadn’t decided yet. Anywhere would do, really. Just not on my genes.

Under 16s Second Prize Story – James Mwendwa
Walter would come every fortnight with immaculate clothes presenting his gleaming knuckle-dusters. Buttons embedded onto a high quality shirt which looked exorbitant with his trousers sewn to each seam so perfectly. He carried his knuckle dusters like a childhood toy in addition to varnishing them every time he saw Michael.
He noticed Walter leaning against the swelling trees with ruby-red apples dangling temptingly. His large brown eyes seemed to have gathered longer vision, presenting a more fiendish look than usual. A white hair dangled from the crescent of his forehead almost giving him the look of advanced age, nevertheless there was a fresh bloom of youth close by his side.
Walter approached the lighthouse and slithered up the stairs to finally greet him. Grinning roguishly he handed Michael a smoke. Reluctantly, he sat on the floor, plagued with dust and stared into the deep cyanic sky beside him.
Just two brothers, in an ice cold room gazing into the scorching hot view.

Under 16s Third Prize Story – Bronte Wilkinson
Big shoes to fill.
When my father came home from work, he would throw his shoes off by the door, and simply leave them there, like stray dogs.
Eventually, my mother would wander up, tut and straighten them out, but never put them away.
“It’s for convenience,” he would argue. It took him too long to find them from the shoe cabinet.
This routine took place each day, exactly the same.
Except, that is, for the last day.
That day, my father came home and threw his shoes on the floor. The shake in his hands had been getting worse recently, and had spread through his whole body. As I went to greet him, I found him on the floor alongside his shoes.
A blur of flashing lights, bright rooms and white walls came next, and now my father uses a wheelchair.
His shoes still lie, stranded, by the door.

Shortlisted entries
“You take after your father you clumsy oik” she joked as Bill dropped his spoon. Custard sprayed itself over the laminate.
“That’s because you take after your mother. Nan’s custard’s lumpy too. One way of getting out of eating” Bill quipped back.
“Where is dad by the way?”
“He said he would be late today, some meeting to attend”. Mum replied.
Bill played with his food a while. Then broached the subject.
“Mum… Is dad alright?”
“In what way Bill?”
“He seems quiet… seems down.” Bill replied.
The front door opened, slicing through the awkward silence.
They waited longer than comfortable for dad to come into the lounge.
He’d gone straight to the bedroom.
Mum found him sitting in silence. Piece of paper in hand.
He’d lied about a meeting to attend the Clinic.
He held out the piece of paper.
“Please God… Don’t let my son take after me”


Ewan came home from The War To End All Wars and married his bonnie bride who bore many children. Our Mum and her beautiful dark-haired sister came first, started school together holding hands. Ewan taught his children to sing and play music. He saved the life of his third-born son when pneumonia struck.
Another war came and he again faced unspeakable horrors. They say he was never the same. His walking and his moods changed and the medical people in their ignorance shocked his brain and left him crying like a baby. He died never knowing that his beautiful dark-haired daughter would endure the same illness or that she and her lovely younger sister would unknowingly pass on the gene.
We all believed Ewan’s other children had escaped. Until now. A child of the son whose life he saved has developed Huntington’s. It could have been us.


BEGINNINGS
However much I cried, I was left alone for hours, cold, hungry, miserable and very sore from soiled nappies. I eventually learnt that making any noise was fruitless. I found out later that my parents were off their faces on drugs. Apparently mum had been a drug addict for years and encouraged dad to join her to help with his symptoms of Huntington’s disease. My poor dad had witnessed his own dad and granddad’s progressively distressing symptoms.
Social Services came and went, however mum told them I was asleep in my cot and didn’t want me disturbed. They did look at me occasionally, playing with my few toys and assumed I was content. Eventually, usually dad would come to me, to clean
and feed me. He would often stumble or trip and we would both crash to the floor.
At 2½ I was taken into care but that’s another story.


Grandad went missing. We did not know that he had Huntington’s Disease and he was getting made redundant from work. His body was found two weeks later floating in the sea. My poor Dad had to identify him. It was all kept very hush hush from me being only 9 years old. Everyone talked in whispers or clammed up when I walked into the room. But I read in the newspapers that his bike was found hidden in some bushes on the Banks of the River Ness so I knew it was no accident – he must have been murdered!


First ever experience of HD was as a 17yr old nursing student. The lady was so incapacitated it melted my heart. 30 yrs later met a lady with HD who melted my heart for a different reason. She was bubbly adorable and full of life. She taught me how to live for the moment by grasping each day as it comes. Bad days of course there were but the good ones outweighed them a hundred fold. My message to anyone thinking of volunteering with HD is watch out it will steal your heart. It will make you cry and laugh so hard you’ll pee your pants. On a serious note its a debilitating illness that can be managed but not cured. Sadly money alone is not enough but with research mindful volunteers the lives of those suffering can be lived to the max x


Who Cares?
It took him over five minutes to put on his coat, hat and shoes to go down to the garage. He wanted to measure if our new suitcases would fit the boot. He mentioned another five minutes would do the job. Half an hour later, sweating, he still was not sure! I went away from the car saying I had to meet my friend for lunch, now stressed and saying to myself Beam me up Scottie!!! I walked along the canal with tears streaming down my face. How could this man who was a member of MENSA come to this? Why did it really matter how much butter he put on his roll? Where had my lovely husband gone, never to return? And they say it will get much worse? Who cares? I do.


Keeping Shop
I loved taking the children into your shop on the High Street. It was good to get out for a walk; days seemed long now I had given up work. I liked to take sideways looks at you. There was a certain vulnerability and, somehow, something familiar.
I noticed your movements becoming more random. You stood back behind the shop fittings trying to control your spasms. Then someone from the village told me that you were closing the shop due to an inherited illness, and I knew.
As young nurse, I had come across patients with HD up at the hospital on the hill. Now I remembered Barbara, whose teenage son sat with her every evening, holding her trembling hand. We cried together when she was finally at peace.
Now I look at the dusty, shadowy shopfront and I pray you, too, will find your peace surrounded by love.


I lost my daughter to Huntington’s, and it was the hardest thing. To watch her as I left, screaming in despair, too young to understand why I was going. Too young to understand that I might hurt her without meaning to.
Did I do the right thing? People said it was, but she didn’t think so. A year later, a year sicker, I don’t think so. Woody Guthrie did the same thing; then he had another child. How would she feel if I did that? How will she feel about me anyway now? Will she understand my fear that I might become someone she would hate? Or will she hate me anyway.
And what if I’ve already hurt her? Given her this disease of mine? Will she leave her children in turn? Will she be better than me?
Woody Guthrie. ‘This machine kills fascists.’
This disease kills families.


“Butterfingers”
That’s what we called Mum when she began to drop things and be clumsy.
She had 6 of us kids to look after and she loved us so much and laughed with us when we called her Butterfingers.
Her youngest child (my sister) died when she was aged 4 and then my Mum really went downhill.
We went to see the specialist and was told she had Huntington’s. I was told the only way to beat the disease was never to have children ~ I had only been married a week. I never had kids.
As things progressed my Dad could not cope. He beat her so badly one day I had to call the doctor.
Mum came to stay with me. She cried so hard one night after accidentally setting fire to my living room and said to me “I want to go into hospital”
I was so relieved to hear her say that because I was struggling to cope and was worried sick about her when I went to work. So off she went. She died. My name was the last word she spoke.
My two sisters and one brother have also since died. Aunts, Uncles, Cousins, they’ve died too.
I’m free of Huntington’s but not the guilt of putting my Mum into an institution.
I miss Butterfingers so much even after all these years. I love you Butterfingers and I am so sorry I let you down.


Fit for Heroes
The checkout has ground to a halt. I see the nosy old biddy behind eyeing up the contents of my trolley.
‘You should be feeding Olympians with all that in yer basket,’ she observes, passing silent judgement on my bulk.
When you lose weight my love, I just seem to find it.
‘Don’t they need a fearsome lot of food?’
I nod politely but do not answer as she peers at the pizzas, waffles, cream, full fat food, every luxury we can afford. I will put these in the blender and make something that almost tastes like the real thing. You need every calorie you can get.
‘All those gold medals in Rio. Proper heroes they are.’
You watched with no bitterness and some understanding. I recognise the sacrifices they made but know there is no comparison between their lives and ours.
We are Huntington Heroes.


There is a rare visual glimpse of a person with HD on the TV.
No-one is watching, they are all engrossed in their own bubble…. drawing, gaming, tumbling… safe, content, free…..
They hear the word Huntington’s.
They stop, they look.
They all recognise the movement, the gait, the speech.
‘That’s Huntington’s’
‘That’s what Uncle W has’.
They continue to watch…they hear a word ‘hereditary’.
‘What does hereditary mean?”
‘Yes, what does hereditary mean?’
There is silence.
I try to explain.
Then….
‘Will I get it?’
‘Will you get it?’
No….
I will not, you will not….
There is relief….. for a second.
Then…
There is a slow realisation…..
‘Will my cousins get it?’
They say their names.
What to say?
I am silent.
What to say next?
50/50?
Not yet.


She thought that it was no life living with a sword of Damocles above your head. She thought anything would be better than that.
So……..
To test or not to test.She thought if she knew, actually knew , she could live her life on the edge caring for nothing going out hellbent for Life.
If she were positive.
But if she did not know ….
She could just be ordinary. Ignore it. Have children. Not care.
But if …oh joy, she was negative………..would she feel she had escaped. Would Life get suddenly better?
She went out. She walked. She got to the cliff edge and the whole world coalesced around her .Sparkling sea, fluffy clouds, seals stretched in exactas on rock. And way way below …….the rocks themselves.
Who needs rocks , she thought, they are there whatever I do.
I will go on ,Life will go on.
But I do need to KNOW.


Positive
“Wow, that’s horrible!” she says, staring at me with the same ‘stunned sympathy look’ everyone does when I explain HD. I take a quick breath, and with a sense of pride and vulnerability, I prepare to delve deep into myself yet again. “Having Huntington’s isn’t ideal, but I am staying positive. For so long I have let HD tear my life apart, but not anymore. I am going to fight this!” Her stare turns to disbelief as I become more animated, the momentum building up inside me. “I have to be a symbol. Not only for myself and my family, but I have to show everyone that I will not let HD beat me. I will squeeze every last drop out of life and never look back. Huntington’s is part of me, but I will never let it define me…”


I AM HUNTINGTON’S DISEASE
I am Huntington’s Disease.
I take away the very basics of living, mobility, communication, thinking processes and judgment.
I can be present in children, adults, male or female.
In this case an adult male, whereby his niece has come to visit him.
The niece leans towards her uncle to give him a hug.
Yet, this cannot be reciprocated.
He cannot communicate anymore, mumbling the odd word, but with immense difficulty.
He used to feed his niece. She is now feeding him- liquidised foods, though bouts of coughing interfere with the process.
I have made eating difficult for him to cope with different food textures.
He is bedridden and battles through his fight against me every single day, as I continue to control his life.
However, his Spirit is present. The spirit is the most powerful force on Earth…
He is still the man of the house.


Trapped
She looked at me with blank and unresponsive eyes. The girl who I once knew had disappeared and been replaced by a seemingly lifeless and cold corpse. One which whom I used to laugh with whilst she braided my hair.
Although her physical appearance suggested that she was gone forever; when concentrating very hard, I was able to see the slightest flicker of light in her eyes. Eyes that used to glow with strength and happiness.
The thing that trapped her, that thing that changed her, that thing had a name. Its name was Huntington’s. The cursed disease that took my baby from me. Forcing her to suffer, lose independence and control. My baby never deserved this. Nobody ever deserves this. This sickness that forces people to shake, choke and forget.
I just hope that her children don’t get this gift from hell too.


Thirteen is an unlucky number for most. Thirteen was the unluckiest year of my life when I discovered my mum was HD positive. Completely alien, I would begin to learn more and more about this killer illness. Arguments, weak moments, falls, hospital trips, nurses visits, pills, constant and burdening thoughts of what if. What if I have it?
By twenty, I wanted to know. By anybody’s standards, I had a right to know. After watching every day what my mum was going through, what my entire family was going through, surely a test wasn’t unreasonable?
After months of the patronising counselling questioning whether after seven years, was I sure I wanted to go ahead? Did I know the implications it may have? Then in one discriminative sentence, my right to know was snatched from me.
“Unfortunately, if you test positive, you will struggle to get life insurance in the future”


Precious time,
I was a teenager always keeping an eye on him, he was depressed, agitated and doing his dance. It was time to get the test.
He had it, my Dad had HD just like his Dad. Time for myself to be tested, a negative result brought a rainbow of hope for the family.
Older sisters time now, she carries the dreaded gene. Devastation hit us all.
Younger sisters time now, She also carries the dreaded gene. Like a black cloud of thunder began looming over us.
Younger Brothers time now, waiting to start a family of his own desperate for an answer to mark his pathway through life, he was Negative.
Four children, two negative and two positive,time now for reflection getting on with things, counting on each other, loving each other and learning not to waste precious time.


Doon the water!
The ferry approached the pier as passengers eagerly waited to be called aboard. Only a small ledge on the pier prevented passengers from falling into the water between the pier and the ferry. No health and safety regulations here!
Suddenly, I saw her with her carer. I asked him, “How is she keeping?” Very well considering. Her blackouts are more regular now and I’ve got to watch her all the time, as I don’t want her falling over and banging her head” said the carer.
“Are you taking the ferry to the island?” I asked. “We sure are” came the reply. “Well watch your step when boarding the ferry, it’s such a small gangway and you don’t want to fall into the water!”
Well, no-one had blacked out, banged their head, fallen off the ferry or become inebriated. All of which happens to people with HD.


Fear envelops me in an infinite black hole. The more I struggle the deeper I sink. I’m a stranger in my own body. The darkness is taking over me. I feel nothing. My son screams at me his face streaming with tears “come on mum, don’t do this, you can’t give up yet”. Alas nothing. My eyes are pealed open but I’m lost in my own mind. My chest aches with every rasping breath and the thought of imminent death freezes the blood in my veins. I want to be alive again. I want to feel something. Like the light afternoon breeze blowing through my wisps of grey hair and for my legs to walk down the beach, the sand sinking in between my toes. I want so many things but the darkness stops me. I wonder what’s worse, to feel pain or not feel anything at all?
I hear someone scream “wake up!” as my eyelids grow heavy and fall. Everything goes black…


I’ve been doing odd jobs for the Smith’s for over twenty years now. My first call out I ended up drinking tea and creasing up in the kitchen at Ellen and Steve’s wild stories of the USA. A right double act those two– the laugh a minute type. And they absolutely adored their wee boy Thomas.
It’s different now. Ten years ago Steve was diagnosed with something called Huntington’s disease and since then my visits have got more and more fleeting. I try to be as quick as I can to get out from under their feet. Thomas is feeding his Dad breakfast in the kitchen and Ellen is running around trying to get organised for the day. She looks done in. I go to say something but the words I’m looking for don’t come, “Right that’s you, washing machine fixed,” and then I leave. What could I say anyway?
I’ve been doing odd jobs for the Smith’s for over twenty years now. My first call out I ended up drinking tea and creasing up in the kitchen at Ellen and Steve’s wild stories of the USA. A right double act those two– the laugh a minute type. And they absolutely adored their wee boy Thomas.
It’s different now. Ten years ago Steve was diagnosed with something called Huntington’s disease and since then my visits have got more and more fleeting. I try to be as quick as I can to get out from under their feet. Thomas is feeding his Dad breakfast in the kitchen and Ellen is running around trying to get organised for the day. She looks done in. I go to say something but the words I’m looking for don’t come, “Right that’s you, washing machine fixed,” and then I leave. What could I say anyway?


Once you hear those words, you can’t un-hear them.
‘Huntington’s Disease’
‘Faulty gene’
‘NO CURE’
I found myself in a permanent state of intoxication from the gradual hiss of gasoline that is my sister’s prognosis. Slowly…
Losiinngg…
Ccccontttrrol…
But I sobered up. Adapted. I had to, for Kerry’s sake. I had to normalise the abnormal. As her condition worsened, she became a slave to the disease. Habitual medical interventions and constant appointments became more of a hindrance than the reassuring crutch it once was. The reality of HD was now etched onto my subconscious; like blowing on hot food before putting into my mouth. Or rather, mmmm…
Ssssterrrss…
Mmmmouthh…
This disease leaves no room for self-pity. You try to forget why you have to be strong because the second you remember; you smell the gas again. You’re back in that room.
‘NO CURE’


My HD Life
The clouds are moving fast again. Or is it just my vision?
Another night has gone by; evident by the raindrops on my window. It didn’t rain yesterday, I think, so that must mean it has done so today. The smallest things are racing by, their acceleration brought on by my inability to notice them. My concentration isn’t what it used to be. My condition is waning.
I’m halfway through a century, incapacitated by a disease that’s embedded in my DNA to tease genetics – for me to pass on a legacy which I unknowingly inherited.
But there is no blame. We are what we are; it is what it is. I ache daily; I lose feeling and memories like losing at rigged carnival games. It’s too easy to get lost – to be misled. It leaves me to remain.
The clouds are moving again.


One two three. I learnt the words as she forgot them.
Four five six.
“My baby’s growing up fast” she muffled through salty tears.
I smiled and in that moment I was happy, until she fell.
“Mummy” I cried.
But she just lay there as lifeless as my cuddly toy, fluffy.
Seven eight nine.
“I have Huntington’s disease”.
Time almost seemed to drown her words.
“I’m loosing myself and I can’t remember the words” she cried.
The air turned bitter cold instantly.
“You will always be my baby girl, I love you. I can’t help what happens next but promise me you will be happy and live your life.”
“Always”.
Ten.
Days passed. She forgot it all slowly and then all at once.
I tested negative and I stopped Huntington’s disease in my family – I tested my embryos.
I kept my promise. I’m happy.
Mum I love you


Patience
Why did this have to happen to me? Since my diagnosis it has all become clear, why I am slower, my movements less controlled, the terrible memory fog, struggling with simple tasks. I try to have patience but sometimes I feel so upset, so angry. I am a proud person, I do not want to ask anyone for anything.
However, there is one thing I want to ask of you. Why don’t you slow down? Take your time, stop rushing, people are in such a hurry all the time. I can’t hurry like you and you have no patience for me, but I am not that different to you. Huntington’s Disease is dreadful but I’m not, you might actually quite like me if you take the time to speak to me. Please have patience, slow down, don’t judge and show kindness for people like me. Life is too short.

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