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First pages

Chapter one: Diagnosis

November 1989

 

Ellen, the school secretary looked concerned as she handed me the note; it was from my mother and read, “Beth, I NEED to see you”. My mother is not given to histrionics and for her to contact me like this could only mean bad news. I set the class of second year students to a geometry exercise, stand until the energy of distraction subsides and when I’m satisfied they are engaged in the task, I sit at my desk and pull out the note again. I find myself analysing every word looking for subtext and tone that might reveal clues as to what has happened; there is nothing but the pure urgency of the request and the absence of good news; more than enough to fill the pit of my stomach with dread.

It’s about six o’clock as I arrive outside my parent’s home. I always feel a tug of nostalgia when I come here; especially at this time of day, it reminds me of coming home after school, stomach growling, and smelling mince and potatoes or lentil soup wafting from the kitchen as I opened the front door. I remember the excitement of Friday evenings when Dad brought home my Bunty comic. As I look down the path to that door, my mother’s anxious face, riven with the strange grimaces that had taken residence in the last year, hovers in front of me.

As I get out of my car, the November air nips at my cheeks. The orange and purple of the dusk sky is settling over Ralston. I notice that the sign for Ralston Golf Club, a few yards up the road, has been recently replaced. Dad, in his role as club secretary, must have finally persuaded the committee to part with some cash.

I walk towards the house, let myself in through the front door and call out to Mum and Dad. Mum answers with, ‘I’m in the Kitchen, Beth.’ As I pass the door to the lounge I peer around it, to see if Dad is there. He is in his favourite wingback chair watching the news. He is wearing blue jeans and a blue jumper and I smile to myself at the constancy of the man. Bill Neely, an urbane James Bondesque newsreader is talking with gravitas about the events of the Berlin Wall and his report is interspersed with film of thousands of East Germans pouring like a swollen river, through a border crossing.

His attention is wrapped up in the unfolding spectacle on the television screen. I watch him briefly wondering what he is thinking. Dad keeps abreast of current affairs; it’s something we share. He loves nothing better than a lively political debate.

‘Hey Dad.’

‘Oh hi, Beth; I didn’t see you there.’ He gets smartly to his feet and walks over to greet me with a kiss on the cheek. I look at him directly, letting my eyes follow the familiar map of his face and I notice the furrows of his brow are deeper. I don’t look like him. People say I am more like Mum. I get my height from him though; Dad is six feet tall and I am five feet ten.

‘Are you OK?’ I ask.

Tears brim in his eyes and I have to catch myself from getting upset too. I can count on one hand, the times I have ever seen Dad upset. I feel my stomach lurch; what the hell is going on? I reach out to touch his arm.

‘Dad, what is it?’

‘We’ve had some bad news. Your Mum is pretty shattered.’

The weight of his words falls on me and tilts my own see sawing emotional state from anxiety to fearfulness.

I hesitate before asking, ‘What sort of bad news?’

I can see him grit his teeth and then he looks down for a moment before looking back at me. ‘She wants to tell you herself. Go and talk to her. I’ll be through in a minute.’

I find Mum in the kitchen preparing a beef stew. A hot pan sizzles on the hob and she is transferring cubes of browned meat into a bowl. She is immaculately dressed as ever; neatly bouffant black hair with just a hint of grey, navy skirt and pink cardigan. She is wearing a floral-patterned apron and I notice that she had fastened it tightly. She has lost weight since I last saw her a couple of weeks ago. She smiles when she sees me, but the warmth of it does not chase a shadow of sadness from her face.

‘Hi, Mum, how are you?’ I am aware that my tone sounds airy, but I have no idea where to start this conversation. She keeps her attention on the flour she is mixing with her hands, into the pieces of beef.

‘I have some bad news, Beth, some very bad news, really.’ She pauses to look at me, opens her mouth, starts to speak, stops and starts again. ‘I was at Yorkhill hospital today and I found out, I have Huntington’s disease.’ She looks away from me, stops mixing, and wraps her arms around her middle, grasping a handful of her apron on each side. Oil and flour stain her clothing.

‘I’ve never heard of it,’ I say.

She is shaking.

‘What is it?’

‘It’s a brain disease,’ she says.

I have little medical knowledge, but I instantly know a disease involving the brain is bad news.

‘What does it do?’ I ask; a part of me already doesn’t want to know the answer.

She looks at the ground, takes a deep breath and says, ‘You know the funny ticks I’ve had and the problems with my balance? Those’re the first symptoms. They’ll get worse.’

The way she says ‘first symptoms’ without looking at me sends a shiver down my spine. ‘How much worse?’ I ask.

‘Much,’ she says. ‘Eventually I’m not going to be able to do anything for myself.’ As she speaks, her body loosens, her hands falling limply to her sides.

‘Do you mean you might need to be in a wheelchair?’ I ask.

She nods and then says, ‘Or even bed bound.’

My mind floods with thoughts and feelings; I am trying to think of what to say to comfort her, wishing Dad would come into the kitchen, picturing my husband, David’s face when I tell him and trying to find some meaning in why this is happening.

‘How do the doctors know?’

‘The doctor I saw is a specialist and he recognised it straight away. He did an examination of my walking, standing and other things. There’s a blood test that will confirm it, but he says there’s no doubt.’

‘But, there’s some sort of treatment for it, isn’t there?’ I ask, my words creating a space in which I want her to pour some hope.

‘Not much. There isn’t a cure. They can make some of the symptoms better,’ she says. Her eyes brim with tears. I dread the next question, hesitate to ask and then steel myself.

‘How long?’

She shakes her head, tightens her grip on herself and tries to speak, but words do not come. One hand twists her cardigan into a knot and the other covers her mouth. She squeezes her eyes tightly shut, but for all her effort to wrestle her emotions under control, tears well in her eyes. In two strides, I wrap her in my arms as she convulses with grief. As I hold her close to me I realise for the first time that every muscle in her torso is twitching uncontrollably. She seems so small in my arms and I feel this overwhelming need to protect her. Her distress at my question alarms me and I am uncertain if it means that her illness will get worse quickly or whether it is the seriousness of her condition that frightens her; perhaps it is both.

Gradually her sobs subside and she pushes me gently away. ‘Look Mum, whatever happens we’ll be here for you. We’ll look after you.’

She glares at me and says, ‘You have no idea what you are talking about, Beth. Don’t make promises you can’t keep. I know what lies ahead for me and nothing you or anyone else does will change that.’

I am taken aback by the change in her demeanour.

‘Mum, no one knows what lies ahead – how can you know? We’ve got to take this one day at a time and we’ll do whatever it takes to make sure you’re ok.’

She crosses back to the table where she was preparing the beef and adds more flour which she begins to mix with her hands.

‘Mum? You know we’ll all be here for you no matter what,’ I say.

She fixes all her attention on the task of mixing the browned cubes of beef and flour, but her movements have become exaggerated and the disproportionate force she is using is making the bowl slide and tilt precariously. Before I can issue a warning, it skids off the table and shatters with a loud bang on the tiled floor. Beef, glass and flour cover half the kitchen floor and a slick of oily, greyish brown liquid has sprayed almost all the way up the kitchen units.

‘You, stupid girl,’ she says. ‘Look what you’ve made me do.’

I am stung by the venom in her words, but catch myself before I react hastily. If she needs to be angry with me then I’ll take it on the chin, but when I look at her face it is a mask of rage that obscures the woman I know and love.

‘Mum, what’s going on?’ I ask. ‘If I’ve done something to upset you I’m sorry, but I don’t understand what,’ I say.

‘You always have to ask too many questions, always think you have all the answers, but you know nothing, nothing,’ she shouts.

Dad appears at the kitchen door, staring open-mouthed.

‘Liz, what on earth’s happening?’ he asks. Dad looks at me, his eyes seeking an explanation.

‘Mum dropped the bowl. It was just an accident,’ I say.

Dad crosses to where Mum is standing, glass crunching underfoot, and puts his arms around her. I see her relax and she says, ‘Oh god, I’m so sorry Beth. I don’t know why I shouted. I’m just so scared, I hoped this would never happen to me.’

‘Liz, come in the living room and have a seat. Beth and I will get this cleaned up.’ Dad says.

‘I’m so sorry, Beth, just so sorry,’ she says and her voice is filled with remorse and sadness.

‘It’s alright, Mum. Don’t worry about it, just let us help.’

Dad ushers Mum into the living room. He then returns and it takes half an hour for the two of us to get everything clean. Something Mum said is playing on my mind. She seemed afraid that this might happen to her.

‘Dad, did Mum have some idea she might get this disease?’

‘Why do you ask?’

‘It was just something she said … about hoping that this would never happen to her,’ I say.

‘I think she saw a lot of illness in her family when she was growing up. It’s something she always dreaded, but don’t we all?’

He was right and since I had my kids, I found myself entertaining all kinds of new fears.

‘You were there today, Dad. Is it as bad as Mum says?’

‘I can only tell you what the doctor said, Beth. It’s a bad illness. It’ll get worse. She’s going to need a lot of looking after.’

‘How do you feel about that?’

‘I’m old fashioned, and when I married your mother it was in sickness and in health. It’s my job to look after her,’ he says and his tone is unequivocal. ‘You would be the same with David, wouldn’t you?’

I nod and say, ’Without hesitation.’ There is nothing I would not do for my husband.

‘And those two kids of yours, you’d do anything for them, right?’ he asks.

‘Of course I would,’

He smiles his approval. ‘That’s how it should be. And here’s another thing Beth, no matter what, families stick together.’

‘I know Dad,’ I say. ‘I’ll be there when you and Mum need me.’

He looks at me thoughtfully. ‘I need you to know that we love you, Beth.’

‘I know that.’ And I do, but I can count on one hand the number of times Dad has said it to me. I sense a poignancy in his words that I cannot put my finger on.

‘Just never forget it, lass.’

We don’t often hug - maybe just at New Year or Birthdays, but he walks over to me and puts his arms around me. I expect to quickly get a pat on the arm to signal he wants to break the embrace, but he doesn’t do that. Instead he tightens his hold on me. My initial discomfort at this extended physical connection gives way to a feeling of closeness. Eventually he grasps my arms and gently pushes me away.

We make some tea and take it into the living room where Mum is absentmindedly watching the television.

‘How are you feeling?’ I ask.

‘Aye, better,’ she says. ‘I hadn’t realised how tired I am. It’s been a long day.’

‘You look shattered,’ I say. ‘Are you hungry?’

‘I could eat something.’

‘If you’ve some eggs, I’ll rustle up omelettes for us,’ I suggest.

Mum looks at me with an eyebrow raised and says, ‘Don’t tell me David has somehow managed to get you in the kitchen and doing some cooking?’

‘I am an expert in heating things up,’ I say. ‘fish fingers, burgers, chips, you name it, if it’s oot o’ a packet, I can serve it up.’

‘There’s no such thing as packet eggs,’ she says with a straight face.

‘Still the razor-sharp Headmistress of Williamsbrough Primary school, I see Mrs Arnott,’ I say. ‘Fortunately, three years of teacher training and living on a student grant have equipped me with superior skills which I can eggsecute for your delectation tonight.’

‘Colin, tell our daughter, if she cracks one more joke like that she’ll get eggsactly what’s coming to her,’ Mum says.

‘I eggspected better of both of you,’ Dad says with a relieved grin.

 

It doesn’t take long to cook the omelettes and the three of us sit down at the kitchen table to eat. It’s Dad that keeps the conversation bowling along.

‘The world is changing, lass. The Berlin Wall is going to come down any day now. Germany will be reunified.’

On any other day, I would have willingly engaged him in conversation about these transformational events, but it was those first four words that echoed in my mind. “The world is changing.”

Chapter two: Discovery

It is 8 o’clock by the time I arrive home. David is getting our two kids Gemma and Alan ready for bed.

‘Beth, are you ok?’ he asks. He is looking straight into my eyes and his face is framed by concern. I tip my head in the direction of the kids. He catches on straight away and quickly finishes getting them changed and ushers them to their bedrooms. I always read Gemma a story before she goes to sleep. We are halfway through The Cat in the Hat. Alan has become very self-sufficient since his tenth birthday, but I still make a point of talking to him for a while before he goes to sleep. As tired as I feel I don’t want to break our routine. I follow David and the kids upstairs and go into Gemma’s room first. I notice David has put up the new ‘Honey I shrunk the kids’ poster. We took them both to see it a couple of weeks ago and ever since Gemma has been on a mission to persuade us to get a dog like, Quark from the film.

David is giving her a kiss and tucking Barbie and Ken in beside her; she won’t go to sleep without them. Gemma is a miniature version of David; brown hair, large brown eyes and a slightly freckled complexion and altogether too much wisdom for a five-year-old.

I sit down on the edge of Gemma’s bed making the wooden frame creak. David, now at the door, blows another kiss to Gemma and heads out of the room, presumably to say goodnight to Alan.

‘Mummy, you look tired. Are you working too hard?’ Gemma enquires with a very serious look.

She does a fair impression of an adult and I think it’s me she copies.

‘I think you need a holiday.’

‘And where do you think Mummy should go on holiday?’ I ask.

She looks thoughtful for a moment and then says, ‘Disneyland. Because you could have lots of fun there.’

Despite myself I laugh. ‘Oh and should I just go on my own?’

‘Don’t be silly, Mummy, if you go on your own you will get lonely.’

‘That is true, but I wonder who I could take with me? Who else could possibly want to go to Disneyland?’

Gemma’s hand shoots straight toward the ceiling.

‘Me. I’ll go with you.’

‘That’s very good of you Gemma, but I suppose we should ask Daddy and Alan too.’

‘Daddy can come, but Alan is too big for Disneyland.’

‘But who would look after Alan?’ I ask.

‘Nana and Papa, of course.’

I slap my forehead with the palm of my hand. ‘Of course, why didn’t I think of that?’

‘Probably because you’re tired, Mummy.’ She always has an answer and I smile at her.

‘Let’s finish your story and then it’s time to sleep, Tinkerbell.’

‘Don’t call me that, Mummy. I’m not a fairy. I’m a princess.’

‘Oh, that you most certainly are.’ I say and make like I am about to tickle her. She begins to giggle and squashes her arms to her sides, but, conscious of not wanting to wind her up when she is about to sleep, I resist the temptation.

I read to her for five minutes, but she is asleep before I finish. I look in on Alan who is reading an astronomy book. ‘Alright, my little man?’ I ask.

Alan peers over his glasses reminding me of Dad, but his hazel eyes and thick brown hair are features he definitely got from me and were from Mum’s side of the family. ‘What are you reading?’

‘Cosmos,’ he says giving me a quick glance.

I sit on his bed and peer around his book to see what he is so fascinated by. A beautiful illustration of the solar system is spread across two pages. Each of the planets has key facts listed next to them.

‘So Space Cadet, what are you finding out about the planets?’

‘Pluto takes 248 years to go around the sun.’

‘That’s a long time.’

‘Did you know it was only discovered in 1930?’ he asks.

‘I didn’t. Who discovered it?’

‘Clyde Tombaugh. He’s an American astronomer.’ Alan soaks up facts like a sponge and he could remember them accurately too. I feel proud of my little boy and his passion for learning.

‘Ten more minutes, Space Cadet and then it’s lights out.’

He nods his acknowledgement, but is far too wrapped up in his book to otherwise respond. I kiss him on the forehead anyway.

When I return to the living room, David has organised a couple of wine glasses and a bottle of red. I flop down next to him and gratefully take the glass of wine he offers. I tell him what happened at Mum and Dad’s house. His mouth is open and he is looking into the middle distance.

‘I can’t believe it,’ he says.

‘I know, neither can I.’

‘You know, along with all the physical problems she’s been having, haven’t you noticed that she is more … moody lately,’ he says. ‘I’ve seen her snap at your Dad a few times.’

‘That’s just marriage, though isn’t it?’ I ask, but as I think about what David has just said I realise Mum has been a bit snappier of late.

‘Your Mum has always been a little moody, but I think she’s changed,’ David says.

‘Do you think that’s something to do with the illness or just the stress she’s been under?’

‘I don’t really know, Beth. Maybe it’s a bit of both.’

‘For all the time I was over there this evening, Mum and Dad didn’t really tell me that much about the illness. It’s understandable they don’t want to talk about it, but I need to know more. I’m going to go to the library tomorrow at lunchtime, to see what I can find out about this illness.’

‘Are you going to go and see them again tomorrow?’ David asks.

‘I think I’m going to give them some space. Mum’s dealing with a lot and she needs time to sort things out in her own head.

 

The next morning, at lunch time, I drive my car over to the local library; it’s only ten minutes away from school. I listen to Madonna sing her latest song, Like A Prayer. In the first line, she sings that everyone must stand alone. I have this eerie sense of the universe mocking me; I feel a little alone in my fears of what Mum and Dad might not have told me.

The library is an old community hall, flat roofed and with a dirty grey breeze block exterior that was converted about ten years ago. I enter through the glass doors which are plastered with a patchwork of community information, charity posters and dire warnings about late lending. As I approach the counter I see the Librarian whose short frame is bisected by an overly tight belt which sits just under her cleavage. She puffs her way to the counter, carrying a stack of returns and gives me directions to the medical reference section at the back of the library; I am relieved to find the area is quiet. I easily find a medical reference text and eventually, two short paragraphs about Huntington’s disease.

Huntington’s disease:

A rare and severe progressive neurological disease that causes chorea, dementia and, frequently psychiatric illness.

Mum had made it seem like this illness caused muscle problems. She didn’t make any mention of psychiatric problems or dementia. I recall what David said last night about how Mum has changed and I wonder if it’s something to do with either of these. I look up psychiatric illnesses and there is a very long and complicated list. I give up trying to make sense of it after a few lines, but resolve to find a book with better explanations. When I look up dementia, several words jump out at me; progressive, loss of capacity, loss of identity, memory and concentration loss. David’s Grandmother died of Alzheimer’s; one type of dementia that the book lists. I am beginning to regret coming here. Every line of this book has more and more bad news. What is my mother facing?

The disease generally manifests in mid-adulthood (typically thirty-five – fifty years of age). It progresses inexorably towards death around fifteen years from onset.

The words are solemn, final and devastating. No wonder she was in such a terrible state last night. No wonder she was so frightened.

Symptoms are caused by selective brain cell death in the basal ganglia. There is no cure and treatment is offered on a palliative basis.

I feel a surge of anger that it had to be a disease with no cure – in this day and age, how many could there be? The first pangs of helplessness stab at my chest.

The cause is known to be a mutated gene which is inherited on an autosomal dominant basis (affects both sexes and each child has a fifty percent chance of inheriting; subsequent generations have a theoretical risk of twenty-five percent, twelve percent). A genetic test is available to determine the probability of inheritance).”

I skim it the first time not quite taking in the meaning. I find myself hating medics for their obscure jargon. I hear myself breathing hard, feel the thud of my heartbeat and the tremulousness in my hands. Inherited. That word is laden with a dreadful fate and I struggle to register the meaning. Do I have a fifty percent chance of inheriting this disease? I read it again. Oh, fuck, I think that’s exactly what it means. Why hadn’t Mum said anything last night? A fraction of a heartbeat after the spectre of my own possible future arises, another joins it. Oh, fuck, my kids, my two kids. I begin to sob and I can’t stop. Somewhere, I hear the voice of the Librarian,

‘Madam, are you alright?’

Chapter three: Questions

When I run, I feel liberated; I can outpace the needy, clawing concerns of work, family, money. When my form is perfect I glide across the ground and slip between the molecules of air; not today. The damp, cold air feels like dragging through a mire and each foot strike finds only hard, treacherous stones. My face is wet; not with sweat or moisture-soaked air, but with tears. The sting of cold and salt blurs my vision. No, today there is no escape. It is a matter of willing one foot forward after another.

I am trapped in a storm of revelation and emotion. My thoughts sweep from one moment to another; like a police helicopter’s spotlight trying to lock onto multiple fugitives. They dwell on my mother speaking the words, “I have Huntington’s disease.” Then I am back in the library reading that it is an inherited illness; my chest still feels tight at the thought of it. Until yesterday I had never heard of this illness, never imagined it crashing into our lives, but every new piece of information makes the world spin a little faster, like an out of control roundabout.

I want to know why my Mum and Dad didn’t tell me this was a genetic illness. I am convinced they knew and decided not to tell me, but for how long? Perhaps they were protecting me, perhaps they planned to tell me in due course, perhaps they were overwhelmed by Mum’s diagnosis and weren’t able to deal with the implications. I am angry they allowed me to find out the truth from the cold text of a medical reference book. I asked my father directly about whether Mum thought she might get this illness and now doubt soaks the family history I have accepted all my life. Who did she inherit it from?

I run back to the car and drive home. I had lingered since yesterday with the idea of withholding what I learned in the library; my own brief, denial. It would only have been to spare me the anguish of telling David and what little protection it might have afforded would have quickly vanished. We have always been honest with one another and the idea of not telling him something this important weighs me down with guilt.

 

I arrive back at our first floor, sandstone flat in Paisley, toss the car keys in the bowl that sits on the oak console table that graces our hall and pull off my running shoes.

‘David,’ I call.

He appears from the lounge and I can hear the television blaring out a sports commentary.

‘Where are the kids?’ I ask.

‘My parents came by and took them out for a treat. How was your run?’

Sweaty and dirty as I am, I grab him in a hug. He seems to sense my need to be held and pulls me closer; we just stand for a while. I am more in need of the support than he knows.

‘I need to talk to you,’ I say.

‘Ok, why don’t you grab a shower and I’ll make you a sandwich.’

‘I’m not hungry.’

‘You sure?’

I nod, tell him I’ll be back in twenty minutes and head into the bathroom.

Although I hadn’t enjoyed my run it felt good to stand under the hot water. It soothes my tense muscles. A good fifteen minutes later I jump out of the shower, dry myself and, praying no one chooses that exact moment to come to the door, I stalk, naked, through to our bedroom, grab a dressing gown, and head down to the lounge. David is reclining on the sofa, watching football. He turned the television off with the remote as soon as I enter the room and I sit down next to him.

‘I found out something yesterday and I need to tell you.’

He frowns at me and says, ‘Something important?’

I nod but I hardly know where to begin and stall before I even start the story.

‘Is this about your Mum?’ he asks.

I glance at him and he says, ‘You’ve been very quiet and I can’t think of anything else that would have that effect.’ He says the last with a little smile.

‘Yes, it’s about this illness she has,’ I say. ‘I found a medical reference in the library and it says the cause of Huntington’s disease is genetic – it’s inherited.’

David studies me with his brown eyes and I can see realisation gradually creep into them. ‘So, that means you’ve a chance of getting it?’

I nod and take a deep breath. ‘If the book is right, I’ve a fifty percent chance of getting it.’

‘Fifty.’ He slumps into the back of the sofa. ‘Fifty,’ he repeats. ‘Wait, if you have it that means …’ I see shock and fear on his face; a mirror for my own reaction except those feelings have been subsumed by guilt and I can hardly look at David.

‘I’m so sorry David,’ I say. ‘I feel like I’ve opened a door to something terrible and now I can’t close it.’ He squeezes closer to me, concern etched into his brow.

‘Hey, this isn’t your fault, Beth. It isn’t anyone’s fault. You mustn’t blame yourself. Look, we don’t know anything at this point.’

I am grateful for his reassurance, but the warmth of it is quickly snuffed by my mounting fear.

‘I wish I didn’t know,’ I say.

He smiles at me and strokes my cheek. It’s all just maybes …’ His voice tails off and I sense that those ‘maybes’ are too big to be defeated by a few brave words. David is thoughtful for a moment.

‘Who did your Mum inherit it from then?’

His line of reasoning mirrored mine.

‘I don’t know. As far as I know, no one else has this illness. Uncle Bernie lives in Southport. I haven’t seen him in years, but I’m sure we’d have heard if he was ill. My Uncle George is still living with Alistair in Lanzarote and as far as I know he’s ok too. What I don’t understand is that my Gramps didn’t have it. He died of a heart attack and Grandma is alive and well.’

‘It doesn’t make any sense,’ says David. ‘Is it possible they’ve given your Mum the wrong diagnosis?’

‘I suppose, but it doesn’t seem very likely.’ The idea creates a little bubble of hope that slowly swells until it is pierced with the greater likelihood that doctors were unlikely to make such a terrible mistake.

‘What test did they do on your Mum?’ asks David.

‘I don’t really know; some sort of examination she said and then she told me that there was a blood test they could do.’ I could see another question form behind his eyes; one that he hesitates to ask, but I can guess what it is, so I ask for him.

‘Do you think I should have a test?’

In the twenty-four hours since I had learned that this was an inherited illness, I had entertained this question only briefly. Last night, I’d had a dream of being chased. I was trying to get to a large door at the end of a corridor, around the edges of which, bright light blazed like a beacon. Behind me a huge wolf, the size of a bear was hunting me down; its slavering jaws snapping ever closer. My muscles refused to work and I couldn’t gain any ground. I knew this creature was going to kill me. I didn’t need Freud to understand the meaning of the dream and at the memory of it, I could taste the metallic tang of fear.

When I look up, David is watching me carefully.

‘I can’t answer that question, Beth. It has to be your decision,’ he says. I smile; his gentleness and wisdom are qualities I love about him.

‘That’s true, but I want to know how you feel. Can you live with knowing – no matter what the result?’

His gaze falls to the floor and I press on with the question. ‘If I do have it, that means Gemma and Alan have a fifty-fifty chance of getting it too and we’ll have to live with that knowledge as they grow up.’

The silence between us becomes palpable.

‘I don’t know,’ he finally says. ‘My first thought was, it’s better to get tested – to know, but when you put it like that …’

‘There is something else I need to ask you,’ I say. ‘And you need to be completely honest with me. Do you think I have it? I mean do you see any signs?’


AUTHOR Q&A

About me

I trained first as a nurse and then social worker and have spent the largest part of my profiessional career working with people affected by neurological conditions and in particular, Huntington's Disease. I am currently the Chief Executive Officer of Scotttish Huntington's Association and my passion remains to promote a better understanding of this largely unkown condition.

Q. What is the inspiration for the story?
A.
I have worked for many years with people who have Huntington's Disease in their family and been deeply touched by the tragedy the condition visits upon them, but even more so by the strong sense of community, and the capacity of the human spirit to face adversity.
Q. Why do you write?
A.
I belive everyone has an innate desire to express their creativity and that's something that has burned in me since a child, but it's only as an adult that I've found the confidence and support to develop my skill as a writer. For me writing is as much about lerarning and personal growth.
Q. Is there a message in your book that you want readers to grasp?
A.
The people who live with Huntington's disease face incredible challenges and yet somehow continue to find love, life and family in it's midst. The least we can do is lend our understanding, compassion and support.

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