I’m glad she has Maddie. She’ll need good friends. I wish Mark was here to calm me down. I still haven’t managed to talk to him. He must be away. I just want to hear his voice.
I also miss my father. I’ve been thinking about him a lot today. If only he were here to wrap his arms around me, to stroke my hair and read me a story with a happy ending.
I’ve never been particularly religious, but I found myself going to church this afternoon and saying a prayer that Flo, Mum and I will survive, that we’ll come out of the debris stronger than before and ready to face this together, that Flo will forgive me, and Mum will understand the choices I have made, too.
Every day I marvel at Flo, how she is growing into a beautiful young woman. One day I hope I’ll still be here to see her fall in love, marry and have children, and I pray there will be a cure for HD, so that Flo’s life, if she is gene positive, will be very different to my father’s and to mine.
Wish me luck.
I’ll write more later.
88
Peggy
I lay my flowers on Tim and Beth’s grave.
TIMOTHY GEORGE ANDREWS,
24 OCTOBER 1938 – 8 MAY 1994
ELIZABETH SARAH ANDREWS,
12 MARCH 1969 – 14 JULY 2012
My Beth died six years ago today. Barely a day goes by when I don’t recall the doctor telling me she was involved in a road accident, and that her condition was critical. I only have to close my eyes to see myself rushing to the hospital, but I was too late.
‘We’re so sorry, Mrs Andrews,’ a doctor said. And the nightmare was far from over. I had to pick up the telephone and somehow tell Flo that her mother had died.
It was the most painful telephone call I ever had to make; one of the hardest things I ever had to do too, aside from breaking the news of the hospital letter years later.
I used to cry in my sleep, recalling holding Beth’s lifeless hand in my own, kissing it, willing her to wake up, and hearing Flo cry out in pain when I told her the news, the grief shocking and raw.
I wished more than anything I had died, not Beth.
Not a day goes by that I don’t wonder what might have happened if Beth hadn’t burnt the beef the night Flo was due to fly home. What if she hadn’t rushed out to the shops, no doubt wondering what else she could buy for their evening meal instead?
I imagine her mind was in turmoil since, not only did she have to worry about food, but finally telling Flo the news. She must have felt confused, lost and vulnerable. A witness said Beth ran across a busy road, not looking, and she fell or tripped over something. My Tim used to fall. There was absolutely nothing the driver could have done to prevent the crash.
I think about Beth every day, but no longer does the grief crush my heart and stop me from breathing. Now I can think about my daughter with nothing but love and happy memories. She wouldn’t want me to dwell on the past, only celebrate her life.
Of course, I shall always regret making Beth promise not to take the test, but no longer will I torture myself for mistakes I made in the past. Finally, I feel a certain peace.
If Beth were here, with me now, I’m certain she would be reassured knowing everything is out in the open and that the truth has brought Flo and me closer together, and has also brought new friends into our lives. I know how happy she’d be to see Flo and James deeply in love, and also to know that her daughter is spending time with her beloved Mark.
If Tim were here, standing by my side, he’d never call me a stubborn old so-and-so who should have listened to him all those years ago when he told me to be more open with our daughter. That wasn’t his style. I’d like to think that he’d be proud of me. Finally.
I recall the past few weeks, telling Beth and Tim that Ricky and Shelley got married last weekend and that Ricky introduced me to his mother. When she told me with a mega-watt smile that Ricky thought the world of me, I couldn’t help but feel ashamed of my initial prejudice towards him.
To think I didn’t open my front door that very first time he knocked, thinking he was a baddie with a hammer.
‘Your son is one of the best people I know,’ I told her, overcome with emotion.
Ricky has proved to me how friendships can spring up in the most unexpected of ways, and I shall be forever grateful that after our first encounter, he didn’t judge me in return as some stupid old buttoned-up biddy not worth the time of day.
I often think about the day Flo ran the marathon, too. It is something I shall never forget. On the tube home, a man offered me his seat. He was a father with two teenage sons and a daughter.
‘Congratulations,’ he said, when he saw Flo’s medal hanging round her neck. When he asked her why she was raising money for Huntington’s Disease, she looked at me, as if it were my story to tell. But it isn’t, not anymore. It is our story. Mine and Tim’s. Beth’s and Flo’s.
And so we told him, from the very beginning.
I jump when I feel Flo’s hand in mine. It takes me a moment to leave my memories behind and to be here again with her.
She kisses my cheek, her touch comforting. To think this time last year Flo was in New York with Theo. To think I nearly lost her too.
We stand in companionable silence until finally she removes her hand from mine. She retrieves something from her handbag, wrapped in tissue.
‘I wanted to give this to Mum and Granddad,’ she says. ‘I thought today was the right time.’
And I watch with pride as Flo lays her medal on their grave.
Often, I have asked myself: if I could have my time all over again, would I have married Tim and made the same choices? But my answer remains the same: marrying someone who didn’t have HD may well have been easier – it could have been harder, too, who knows – yet all I am certain of is that there is no one else I’d have wanted to spend my life with more than my Tim.
I remember him watching me walk down the aisle towards him. I can still feel his breath on my cheek as I stood by his side and he whispered, ‘You look beautiful, Peg’. I can picture us now, running across a sandy beach in Devon on our honeymoon, hand in hand, laughing and kissing, mad fools in love, excited to have a whole new life ahead of us.
Without Tim, I wouldn’t have held our baby, Beth, in my arms and watched her grow up into a beautiful, talented, courageous woman. I wouldn’t have my granddaughter, of whom I grow prouder by the day.
Even during the hardest of times, Tim lived with such dignity. He was brave and uncomplaining. His love was a gift, even if it was taken away too soon. I would rather know true love and feel grave loss, than feel nothing at all. So I know my answer.
I wouldn’t have traded the life I had, not in a million years.
Acknowledgements
Firstly, thank you, Jackie, and Jenny Fraser, for giving me the idea to write about Huntington’s Disease, to raise awareness of the condition and the impact it has on families and relationships. Thank you, Jackie, for your courage, and thank you, Jenny, for your support. If You Were Here would not have been possible without you both.
There are many more people I need to thank. When I started this book, I knew very little about HD so relied heavily on those in the medical profession and the HD community to help me with my research. I cannot thank Dr Nayana Lahiri enough for giving me such a vivid insight into her work as a genetic counsellor and the predictive testing process. Nayana was endlessly patient with my questions over the past eighteen months and was always there to read over my work, which was reassuring. Her dedication to her job and to her patients is inspiring.
Warm thanks also go to genetic counsellor, Dr Rhona MacLeod, who encouraged and supported me from the beginning. To Cath Stanley, chief executive of the Huntington’s Disease Association (HDA) (www.hda.org.uk), the only charity in England and Wales dedicated to supporting people affected in any way by HD. Cath kindly put me in touch with various people who work for the charity. To Mandy Ledbury, who described in detail her role as a HD specialist adviser. To community fund
raiser Hannah Longworth and former HD specialist adviser, Fiona Sturrock. Hannah and Fiona introduced me to some of the incredible team who ran the marathon in 2018 for #TeamHDA: Rosie Allen, Charlotte Blake and Emma P. These women are amazing! Each of them told me about their training programmes and how HD had touched their lives and the lives of their loved ones. They spoke to me with humour and courage about the highs and lows of running twenty-six-point-two miles, and how it felt crossing the finishing line. I was there on the day itself, cheering them on as loudly as I could.
I would also like to thank Matt Ellison and his mother Norma Ellison. Matt grew up with a father who had HD and tested positive himself aged nineteen. Matt saw the urgent need to set up a charity that supported children and teenagers who had had similar experiences to his own. The Huntington’s Disease Youth Organization (www.en.hdyo.org) is a lifeline for young people affected by HD. Norma gave me an honest account of what it was like for her caring for a husband with HD. She relayed her pride for everything Matt has achieved despite the odds. Both are exceptional people for whom I have nothing but admiration.
To Ellie-May Sanders. Thank you so much for talking to me about how your family has been affected by HD, and what it was like, for you, making the life-changing decision of do I, or don’t I, take the test? Huge thanks also to Sam Herreid for telling me your experiences, which I found profoundly moving. To Fran Smith, thank you for sharing with me the reasons why you chose to find out if you were gene positive or not. I owe much to you all for telling me your stories.
There are friends I want to thank who have helped me in many different and important ways: Silvy Weatherall – a talented artist who helped inspire Beth’s art. To Rosie Motion, an equally talented set designer and model maker, who gave me the idea for Flo’s passion in theatre. To Angela D’Agostin, my Italian teacher at the Macbeth Centre in West London. To Simon Felger and Andrew Carmichael, both wonderful vets, who told me about their work. To Janie and Justyn who showed me that best friends can fall in love. To Matthew Jevan, David W, Monika Cholewo, Edward Lucas, Mark Tredwell, Tiggy Pettifer, Anne Pease, Sarah Petherick, my sister Hels, my cousin SJ and the indomitable Molly – all of you have contributed in different ways, making this book what it is.
To Mum and Dad – as always – my rocks. To my Lucas terrier, Mr Darcy, who keeps me company as I write and makes me go for walks when I need to think over the plot line. To all my readers, and blogger friends on social media – and my fellow writer friends – thank you for continuing to support me, and my books. It means a huge amount.
To my publishing team, I owe more than I can say. Firstly, my agent and friend, Diana Beaumont, always by my side. Wise, kind and fun, she is someone I can turn to for advice and support. I couldn’t do this job without you.
To Alice Rodgers, SJV, Becky McCarthy, Amy Fulwood and everyone else involved with my book at Simon & Schuster. It is great to be part of such an enthusiastic and talented team. Enormous thanks to Jo Dickinson. Jo is an extraordinary editor who constantly challenges me to look at things differently. Praise from Jo means the absolute world as I know I have really earned it. And finally, to my editor, Rebecca Farrell, who has been a joy to work with: passionate and hardworking – she has put her heart and soul into all the characters that live in If You Were Here. This book simply wouldn’t be the same without her.
Inside Huntington’s Disease: Genetic counselling in the real world
by Dr Nayana Lahiri, Consultant Clinical Geneticist & Honorary Senior Lecturer at St. George’s University Hospital, London
When Alice Peterson first told me she was writing a book about Huntington’s Disease, I was so pleased to be able to help in what little way I could. Spreading awareness of HD and how it affects not only those diagnosed, but their families too, is something I continue to support.
Most children are taught about HD when learning about genetic disorders at school, but it wasn’t until I first met a patient with the condition, five years after qualifying as a doctor, that I began to learn about how it affects individuals and their families in everyday life. I learnt how easy it is for people with HD to fall through the gaps in medicine because their symptoms are so varied; how they can be misunderstood within social care because people aren’t properly informed about what HD is and how challenging it can be to take care of those affected.
The symptoms of HD – involuntary movements, personality and behavioural changes – often force patients to hide the disease, for fear of discrimination and unfair treatment. It is these symptoms, and people’s reactions to them, that have led to the breakdown of families and relationships. Despite the fact that there is medication and some interventions that can help with certain symptoms, living with someone who has HD is not always easy, nor is growing up as a child with an affected parent. Add into the mix the hereditary nature of the condition and you can see why fear, shame, guilt and denial are a common theme for many. Nobody wants to believe that their life will end this way, or that their children and grandchildren may be at risk because of a condition they have unintentionally passed on. People do not want to become a burden on their families or for anybody’s perception of them to change. When HD is hidden in a closet, it can be hard for a person to open the door and let it out.
Although HD is a condition caused by one genetic alteration in one gene, no two people have the same experience. Coupled with that the fact that there is currently no way of preventing the condition or slowing down its progression, this makes the decision to have – or not have – genetic testing unique to each person. As genetic counsellors, we help people to think through their options carefully and support them throughout the decision-making process, and for the years that follow; from starting a family to the start of symptoms in loved ones, or even themselves.
Before the gene for HD was discovered, the vast majority of family members said they would opt to take a test to find out whether or not they were going to develop the condition. However, when that test became available, only 20% of people actually decided to take it, a figure that has remained almost the same over the past twenty-five years. In my experience, this is largely because, when faced with the prospect of a definite result, the idea of finding out isn’t nearly as simple as previously imagined. In If You Were Here, when Flo first learns about HD she immediately wants to take the test to know for sure, one way or the other, whether she will develop HD. But in reality, she only wants to learn that she won’t develop the condition– a reaction which is understandable and common. She simply wants the problem to go away. Over time, many realise that a genetic test can give you an answer, but it can’t guarantee it will be the one you want. For some people, taking the test isn’t worth the risk of losing hope. I have seen many patients change their minds during the counselling process, wondering if they truly could cope with knowing the outcome. They also want to protect their families, fearing the knowledge that the result won’t only affect them, but their loved ones too. This is why genetic counselling remains so important, because a result cannot be undone. Many people will take the test further down the line, when the uncertainty of not knowing becomes greater than the fear of what the result will be.
Of course, this will change when there is real treatment, specifically for HD, and even now, participation in research can play a hugely positive role in how some people live life ‘at risk’. I spent several years working with Professor Tabrizi and her team at University College London and with HD families in research. I was blown away by the dedication of the families involved, hoping for and being part of the search for a cure. Not only people with symptoms, but also those at risk, even unaffected partners, brothers and sisters gave up their time to take part in an exhausting schedule of physical and mental tasks, MRI scans and blood samples. They were being observed closely, but there was nothing in it for them aside from the fact that their participation may help advance knowledge of HD and, in the future, might help other people at risk.
Research studies like this have now le
d to the possibility of real treatments for HD. News reports, like the one Flo saw in December 2017 reporting the results of a ‘Huntingtin lowering therapy’. This drug may prevent the altered copy of the HD gene from doing further damage in the brain. The next pivotal phase of this potential therapy (the catchily-named RG6042) was announced by Roche Pharmaceuticals in December 2018 – almost a year after the announcement that Flo heard. In this next clinical trial, 650 people worldwide affected with HD will receive spinal fluid injections over a two-year period to see if the drug is helping treat signs and symptoms of HD and possibly even slowing down progression of the disease. And there are several other clinical trials from different companies in the pipeline.
When I was talking to Alice Peterson about If You Were Here, the first question she asked me was one I’m often asked: How do people cope if they test positive for the HD gene? Obviously each patient is different, but in the past twelve years I have witnessed great courage, resilience and humour at the very darkest of times. People don’t give up or feel that life isn’t worth living anymore. Humans have an extraordinary capacity to cope with adversity, and I continue to be in awe of their strength. It is always a privilege to be a part of their journey.
About the Author
Alice Peterson writes contemporary fiction with humour and compassion. Her novels are always uplifting, but her protagonists often have to overcome adversity. This is based on Alice’s own experience of a professional tennis career cut short at the age of eighteen, when she was diagnosed with rheumatoid arthritis.
Alice has written two non-fiction titles and nine novels, and is currently living in West London with her handsome Lucas terrier, Mr Darcy.
Find out more about Alice at www.alicepeterson.co.uk or follow her on Facebook and Twitter: @AlicePeterson1
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