Sixteen Days: A sudden death. What to say?

Foreword

The words ‘I think she might die’ have rung in my head since this happened. These are the words I said to my husband and my sister, Victoria, approximately thirty-six hours before getting the call from the hospital that Mary-Lou’s situation had changed.

I just had a horrible, mother’s intuition feeling. I felt like something was tearing my innards out. Probably the nearest I could get to describing the feeling would be labour pain. How ironic.

I did not want to have this feeling, I certainly did not want to be sharing these scary thoughts, but I did. And it happened. The worst period of our lives, ever.

Victoria has beautifully captured those first Sixteen Days. Our family, and I would say Mary-Lou in particular, enjoy telling stories, especially if there is a chance of finding some self-deprecating humour in the midst of a drama. Victoria has achieved this and more. She has carefully documented her story about being significantly affected while recognising she was not (quite) at the epicentre. She discusses her dual role as being both bereaved and as being a much-needed crutch for the bereaved. I am sure this will resonate with many of you.

It is sometimes said that mums who have lost children are selfish. I suspect this is true, although I would say we tread a fine line between this and selfcare. I know, as part of my ‘self-ish-care’, I put Victoria in some pretty tricky situations during those Sixteen Days (and beyond!). She documents these with humour and wisdom, drawing on her academic background to sensitively explore how our experiences during this horrendous time can usefully be revisited and related to the available literature, debate and evidence, with the intention of supporting others.

Julie Bilboe

Introduction

We’re all going to die. And everyone experiences deaths. Family, friends, colleagues, pets. It’s going to happen. There is no escaping it; a cliché, but it’s a fact of life. Many people endure the awareness that death – for themselves or others – is coming, because of age or ill-health. That can be terribly upsetting, even harrowing, for the individual and those around them. I’ve often said ‘I hope it’s quick when it happens to me’, as I didn’t know how I’d cope with me, and those around me, knowing the inevitable was on the horizon.

Sudden death happens, too, of course. But until it impacts you personally, it’s hard to comprehend.

Early in January 2020, my niece Mary-Lou, an otherwise healthy 22-year-old, was unwell with what we thought, then, were relatively ordinary flu-like symptoms. She died on 13 January. She was seriously ill for just two days prior.

I wrote this book, not as a grief expert, but as a close family member. I describe some of the things we, and others, said and did, during those early few days after her death, which helped us. This book is a compilation of my recollections and reflections.

I acknowledge my position as not being absolutely central to the events described in this book. If one were to imagine concentric circles, I would be in one of the rings, but several people were closer to the hub of this situation than me. I discuss how I experienced the death of someone close to me when I was not the closest. I took the role of supporter and the supported.

Fortunately, whilst the vast majority of what people said to me, and our family, was helpful in some way, there was a sense they were feeling in the dark, tentative with words and actions – as, at times, was I. I did a lot of reading and received some good advice. Anything that stuck with me, I’ve passed on at the ends of chapters, credited where relevant. There is a compilation of all of the guidance, and a further reading list, at the back of the book.

As I was in my final stages of writing this book, I trained to be a Certified Grief Recovery Specialist in a bid to better help myself, and perhaps others. I was able to draw on the training for some of the elements of my book that give advice. The founders of The Grief Recovery Institute say in The Grief Recovery Handbook,

‘in rather short order, it becomes abundantly clear to the griever that friends and associates are not of much help.

Even though they are well-meaning, they often say things that can seem inappropriate.’

Perhaps this book will help you, the reader, to feel more confident when dealing with people facing sudden bereavements. All experiences of death are unique, but there may just be something in my story that helps you, should the worst happen to someone you know.

This book is also something of a tribute to my niece, who I held the day she was born, and whose hand I held when she was a toddler. I celebrated her graduation from university, and I was with her on the day she died. She remains with me.

So, let me talk to you about Mary-Lou. Let me tell you my story.

Chapter One

My niece Mary-Lou Abbott

‘We’ve got a Mary-Lou.’ This is how she was announced into this world, to me. I was working in Wolverhampton at the time. It was mid-morning on 21 October 1997. We knew her arrival date was imminent although no one knew if she would be a girl or boy; names had been chosen for either eventuality. My mum called to tell me the news. I pretty much dropped everything, declared I was going and I wasn’t sure when I’d be back. Quite a bold move for someone in her first ‘proper’ job, but I already knew: some things are just more important than work.

It was a two-hour drive to Ormskirk to see my sister and her husband in the hospital and meet my first and only niece. Pink and wrinkly. With wisps of ginger hair, like her dad. I held her, pretty terrified but also completely besotted. On the radio on the drive up, in my little black Ford Fiesta, I’d heard the song Angel of Mine by Eternal. It had been released around that time and I bought it as a gift for Julie, on cassette single.

It’s not perfect but it has some lovely lyrics which meant something to me, then.

Life for our small family changed that day. I moved back to the North West in May 1998 and was able to spend time with Mary-Lou as a baby and then as a toddler. Evenings and weekends, on family days out and holidays, but mostly doing just normal stuff at home. The occasional extravagance; particularly fond memories of Christmas in Florida when her younger brother Nick was a baby and she was around four. We tried to tire her out on Christmas Eve, Julie and me, making her giggle uncontrollably with our speedrenditions of ‘Ding Dong Merrily on High’.

I moved to the East Midlands in the early 2000s so didn’t see so much of her day-to-day, but managed to visit frequently so I’d say we were close. I was able to drop in some evenings if I was working in the area, to hear stories about primary school, and enjoyed birthday parties with her friends. We had a kitchen disco to Mika’s album Life in Cartoon Motion one dark Monday evening and I helped clear up the dreadful mess the chocolate fountain made of her face and the kitchen. As she got older, we’d chat on the phone and attention turned to more serious matters: her schoolwork and future employment aspirations. We had a lovely family holiday in Lanzarote and saw in the New Year 2013 together. I remember her and Nick being mortified saying they could hear our evening karaoke echoing around the complex, and the look on her face when we all donned party hats and masks ahead of the countdown to midnight was priceless. I also recall being in the same place the day of her brilliant GCSE results, hearing those via Messenger. Social media kept us connected, when apart, at that time. Mary-Lou was my Chief Bridesmaid when I married Roger in 2014. She worked hard at school and excelled.

I was lucky that she chose to study Law at The University of Sheffield, as it meant she was only a short distance away from my family home in Doncaster. During her undergraduate studies, she wasn’t here all the time, by any stretch of the imagination, but I loved having her close and we had some memorable laughs and late nights when she visited. After graduating in the summer of 2019, she returned that autumn to Sheffield, to do an MA in Political Theory.

I last spent quality time with Mary-Lou in late November 2019. Julie and I had a rare Friday night away, just us two, in York. Part of the celebration for her 50th birthday. We had a lovely tapas meal, a few drinks, a night in a suite in the Hotel du Vin and then charity shop mooching the following day. We were going to Abu Dhabi for the Grand Prix – but that’s another story for another book! On the way back, Julie had planned to drop in on Mary-Lou in Sheffield and probably stay on the Saturday night. I was a bit tight for time and I nearly left her to it, but we both went to Mary-Lou’s student flat, for a look around. Her lovely, cosy ensuite room in a converted former church was immaculate. Decorated with fairy lights, comfy cushions on the bed. She showed me the information on the Civil Service contracts she was looking into applying for, at the end of her MA. Focused and determined, I was unbelievably proud of her. We then went for a quick dinner, the three of us. She was bursting to share with me a hilarious story of what had happened a few weeks previously on the Otley Run, in Leeds, with her friends. On the infamous pub crawl, they’d had much fun and far too much wine which resulted in a rather challenging journey home the following day. Thank you to the kind shopper with the spare carrier bag on the packed Northern Rail train, whoever you were. It took us most of the meal to hear all the details – she was so giddy and animated and we had such a giggle. Again, while not something we did often, such a funny, normal evening. ‘We must do this again,’ I thought – with a mind to her only being in Sheffield for the rest of the academic year 2019-20, and then who knows where she might be?

Julie and Mary-Lou walked me to Sheffield railway station so I could head back to Doncaster and, while I worked out which platform I needed, we took a selfie. We never did that. I’m glad we did, that time. The last photo we have together.

The last time I had seen Julie before the period of our lives when Mary-Lou was here with us on earth, was late August 1997. She was heavily pregnant and the ‘three of us’ made mince pies. That day, we’d woken up to hear Diana, Princess of Wales, had died. The theory was to make and freeze the traditional festive items. With a small baby, there may be little time for baking. And Christmas was coming, kind of. How very organised of us.

I remember we didn’t know how we should behave, or what to say, on such a tragic day for our country.

Fast-forward twenty-two years and we were, again, in a state of shock, horror and disbelief, although this time, over someone much closer to home.

Chapter Two

The Day of her Death

13 January 2020

‘Tell me that word again?’ he asked. I was cutting my husband Roger’s hair, something I do most weeks. Number 1 all over. Occasionally a Number 0 if I slip with the settings. There’s not loads left to cut but we both like it when it’s close-shaven. He was getting ready to go to work in York, it was a cold, dark Monday morning. I had a strange feeling he perhaps shouldn’t be heading off but it felt irrational and over the top to suggest he stayed with me, by the phone, for updates, so I kept quiet.

We’d had a weird weekend.

Mary-Lou had started to become seriously unwell on the evening of Friday 10 January and had been taken, by ambulance, to the nearest district general hospital. Her mum, Julie, had called to let me know, around five in the evening, from Lanzarote, where she was on holiday with her husband, Chris. She started simply with ‘Mary-Lou’s not well.’

I confirmed I was aware. I’d been messaging MaryLou in the week and, when she sounded pretty poorly, I’d asked who was looking after her. Her brother, Nick, was home, as was her boyfriend, Jason. Her grandparents – my mum and dad – live just around the corner. Mary-Lou reassured me, and I in turn reassured myself, it was probably some kind of virus she’d just need to ride out. I live nearly one hundred miles away so I wasn’t easily able to see her in person.

On that Friday, she’d become disorientated and Nick had done the right thing and called 999, and also made a call to their dad and grandparents. After a few hours in the Accident and Emergency Department, she’d had some intravenous paracetamol and lots of fluids; she was lucid again and had improved greatly. Accident and Emergency in January is never a place you’d choose to be, so the decision was she would go home and not stay in hospital overnight. My mum, Nick and Jason stayed with her that night. She slept, and on the Saturday morning I was told she was ‘as bright as a button’ – still unwell but unaware of what had happened the previous night. In bed, but sitting up and chatting. Her dad and his wife had been to see her, and, to all intents and purposes, she was ‘normal.’

Late that Saturday afternoon there was something of a repeat of the previous day and she went back to hospital, this time sedated and straight to the Critical Care Unit.

So I’d spent some of Friday evening on the phone to a very worried Julie, and some of it looking for flights to try to get them home. It’s worth noting if you’re on an island and there’s no flight availability, anywhere, you don’t have options. Something that had escaped me until then. The sort of thing you don’t need to know until you do. By the Saturday morning, it no longer seemed an emergency, so although Julie and Chris were still desperate to get home, they planned to take their scheduled return flights on the Sunday, arriving back late afternoon. Roger was particularly calm about this, and he remembers commenting a few times, ‘Sunday’s fine – she’ll be alright …’ – something I know he’s uncomfortable about, still.

That Friday night, our daughter Holly was with us. When we’d established there was no way to arrange travel for Julie and Chris that evening, we’d watched some TV and I tried to stay calm. I had a sense of impending doom.

This is not unusual for me; whilst I am eminently capable of being positive and encouraging towards myself and others, I also know shit happens. I’d been fortunate that – up to that point – shit had not happened a lot to me and mine, but that somehow meant nothing. Saturday morning was an ordinary day and I tried to do ordinary things. I had an early hair appointment and studied for a course I was doing at the time, although my mind wasn’t on it. I did a lot of work, later on Saturday and most of Sunday, partly for distraction – something of a theme I’ll expand on in Chapter 4 – and also with a sense I could do with getting things in order, in case I needed to take some time for me, or for family, that coming week.

It was the early hours of Monday 13 January, Dad’s birthday, when I’d finally got to bed. I’d been on the phone with Julie late into the evening. She’d arrived back in the UK safely and gone straight to the hospital but had been advised not to stay in with Mary-Lou on the Sunday night. Mary-Lou was in the best place, she had a dedicated nurse, she was in Intensive Care – ventilated and sedated, but stable – and it was implied there could be something of a long road ahead. Julie had called around midnight to update me and to get some validation for what she’d done by going home and not holding vigil. There was talk of moving Mary-Lou the following day to a specialist neurological centre. The two hospitals were in touch and weighing up the pros and cons of her travelling or remaining. Similarly, we were trying to work out when I could, or should, go to see her. I felt so sorry for Julie and pretty helpless.

I was about to get used to that feeling.

Between sheer worry and fear, Julie was somewhat calm and logical, making a plan to see what the next day would bring.

So what was that word? The word Roger was looking for was encephalitis.