Yet Here I Am: One Woman's Story of Life After Death

By Deborah Binner

Deborah Binner's world was shattered when her 15 year-old daughter Chloe was diagnosed with Ewing's sarcoma, a rare bone cancer. Despite aggressive treatment, Chloe died three years later, two weeks after her 18th birthday. Still reeling from grief, Deborah was plunged deeper into despair when just 18 months later, her beloved husband Simon learned he had motor neurone disease. What's more, Simon knew from the outset he had no intention of allowing the disease to play out and opted instead for an assisted death. Despite her personal feelings, Deborah had no choice but to accompany him to a Swiss suicide clinic to say their goodbyes. The last six months of Simon's life was filmed for a BBC documentary - How to Die: Simon's Choice which was nominated for a BAFTA. In Yet Here I Am, Deborah describes with painful honesty, how she emerged from crushing sadness and pain to forge a new life for herself and even - eventually - find a new form of happiness. This is a remarkable story of human strength, resilience and hope.

• Language: English
• Publisher: Splendid Publications Limited
• Release date: Nov 12, 2018
• ISBN: 9781909109780

Deborah Binner

Deborah Binner is a former journalist and broadcaster.

Book preview

PROLOGUE

FRAGMENTS OF MY LIFE

‘Stop worrying - nobody gets out of this world alive.’

- Clive James

IT was a gentle breezy spring day. I was in Copenhagen with two of my closest friends. There was an unsteady contentment creeping into my life; it was a new feeling. It felt very fragile but it was nice. Gosh, Copenhagen is beautiful! We were climbing together up the stairs of the Vor Frue Kirke (Church of Our Lady) the city’s main cathedral. I glanced at my friend Sian’s lovely face; she was smiling.

Ah, dear Sian and her husband Mike. The kind of friends everybody needs. The people who have walked alongside me, never looking away, as the events of my tumultuous life have unfolded. They’ve supported me every inch of the way through two catastrophic losses. They have been outstanding friends and I am unashamed to say I love them as dearly as if they were my own family.

It was the third year that I had escaped to ‘somewhere beautiful’ on February 28th. A dreadful day indeed. The anniversary of the death of my precious daughter Chloë. Somehow, being outside of the UK helped. That veil of happiness that coats one on holiday is hugely helpful in times of the most terrible grief that a human can bear: the loss of a child. The beauty and promise of a new world, a contrast to the ugliness of what my family had lived through.

Oh God, I know you. A round British woman tapped me assertively on my shoulder. Excuse me? I replied, assuming mistaken identity as I knew nobody in Copenhagen. Her face literally crumpled into a mixture of shock and embarrassment and the words streamed out of her mouth before she could stop them.

Oh no, you are that poor, tragic lady from the TV. However do you cope?

To her credit I think she would have popped the words back in if she could. Most people don’t mean to be hurtful. In all fairness I had shared part of my life with a national and then international audience through the BBC BAFTA-nominated film How to Die: Simon’s Choice. She had clearly seen me on TV at one of the darkest times of my life and seeing me later, out of context, felt she knew who I was.

Ah yes this is another whole part of my life, the death of my husband Simon. The love of my life to that point. The man who had swept me and my two young daughters up and given us the family and the love we’d never had. The man who made me laugh so much every day, with his eccentric nonsense and ferocious love of life. The man who, just one year after our Chloë had died, was struck down by the illness that is so horrific that even battle-hardened medics can barely dare to whisper its name.

Motor Neurone Disease (MND) is an uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time. It’s always fatal, but some people ‘live’ with it for many years. There’s no cure but there are treatments to help reduce the impact it has on your daily life. It’s caused by a problem with cells in the brain and nerves called motor neurons. These cells gradually stop working over time. It’s not known why this happens.

Well that’s what the NHS says about it. Here’s my take: MND is the closest to a living hell that I’ve ever seen. It can take down the strongest person in a matter of months. If you are especially unlucky you get the Bulbar Palsy type. This is the fast-moving version which starts around the mouth, with life expectancy between six months and three years. It creeps in; a strange, tingling feeling in the tongue, speech that makes you sound drunk. Then it gets going. Choking on almost anything, coherent speech disappears leaving the sufferer to communicate with muffled noises and grunts. You fall flat on your face with no warning. Your reactions go so that you can’t even put a hand out to break your fall. You whack your head on the floor again and again and again. You cough food all over the place and your breathing becomes laboured. Your arms stop working, then your legs. You shake uncontrollably and you live with the constant fear of choking to death. Your dignity is smashed into tiny pieces.

There are some gadgets that help like a walking trolley and anti-depressants have their uses - they control what the medics call ‘emotional lability’ which is the need to burst out crying at inopportune moments. I’d call it sanity. Who would not want to sob with such a burden to carry?

Aside from this, I really can’t think of a single positive thing to say about this hideous disease. Oh, and because it’s considered ‘rare’ - approximately affecting one person in every 50,000 with over 5,000 people in the UK affected at any one time - the pharmaceutical industry doesn’t really bother with it; not enough people to make it worth the huge investment required to develop new drugs. So, no new drugs on the horizon and very little that they can do. I’m fucked, my dear husband said. And he was.

He’d been such a proud, dignified man. A real man. Pragmatic, fiercely intelligent and brave. But also a man our little family knew it could rely on entirely. He made us feel safe and we knew beyond any doubt that he would literally kill anybody who would hurt a hair on any of our heads. He was the kind of man I would want my daughter to marry. The kind of man I’d like my grandson to grow into. A man of stature and depth. An old-fashioned Englishman in some ways.

The endgame of MND is not to my liking, he said with characteristic understatement. He therefore became one of 37 UK residents who each year choose an assisted death in Switzerland. Not many of these however choose to have their last months on earth filmed by a BBC film crew. But my husband was unusual in many, many ways.

It was early in his illness when he could still just about speak. He burst into the room with a huge grin on his face: Right, I’m off to Dignitas, (the more well-known Swiss assisted dying clinic) and they are making a film of my final few months on earth. Isn’t that splendid? He told me proudly.

And why would you do that? I asked. His friends and family asked too. As a former TV journalist I was horrified that he wanted to expose our life and the final part of his life to a BBC audience. ‘Bleeding’ all over national TV. NO! NO! NO!

But I had no choice. Simon had decided and this was the first of what was to become many times that he reminded me that it was his life and he would do what he wanted with it. He said it with a mischievous smile and I knew deep down that if I’d really objected he would have changed his mind…maybe.

He was absolutely thrilled that the BBC wanted to make a film about him. Really thrilled! First and foremost it gave my hugely outgoing, attention-seeking husband a platform to tell his story. He needed it. He needed a voice as his own was being dismantled fast with this gruesome, aggressive illness. It gave his suffering some purpose, some meaning. I still don’t believe he wanted to take a stand on anything in particular - he was so refreshingly honest in believing that life was tough, shit happens and then you die. Onto the next generation, he’d announce with some gusto. But I do think it was really important for him to leave something behind. Something that mattered. I think that film mattered and still does. It shows a snapshot of a normal family coping in extraordinary circumstances. I hope that it also shows that the binary argument of whether we should have assisted dying in the UK or not, doesn’t fit. It’s far more nuanced than that. It needs to be agonised over and for people to get involved with the complexities of the argument. In my humble opinion, how we die is so important to how the rest of us live on.

I have spent and continue to spend a lot of time talking and thinking about death. I talk to my little grandchildren about it often. On our way back from school we regularly walk through a church graveyard and we talk and think of the bodies buried beneath us. Can I die and go and meet all the dead people? our little Nahla, aged four, asks breezily. Well not really Nahla because if you died you wouldn’t come back and we’d miss you, I say.

And Roman, aged six, finding Grandad Simon’s shoes: Oh no Nanny, Grandad left his shoes behind. His feet will be cold! We listen and consider before reassuring I think Grandad had some other shoes on so he’ll be ok.

Their little minds move on to unicorns, butterflies and analysing the insects on the pavement - a particular favourite of Roman’s - but they know they can return at any point to where Grandad Simon and Aunty Chloë have gone.

***

I was the child of Irish immigrants. My mother was one of 14 and had lost five siblings before she reached adulthood. Her own father died when she was 13. My father was an orphan at 14 and was pretty brutalised by the whole experience.

They were determined to protect my brother, my sister and I from what they saw as the unacceptable darkness of life, namely death. As such, as young children we were forbidden from visiting hospitals, funerals, or watching anything too sad on the TV. Elderly aunties and uncles would just seem to disappear with no explanation. The ‘D-word’ was never mentioned. Even hamsters and budgies would disappear without warning. It was extraordinarily confusing and it didn’t work. I had never been inside a hospital until my mother got ill. I was 17 and woefully ill-equipped for what was about to happen next. More of that later.

Thankfully we talk more now don’t we? But not enough. My intention is that my daughter and grandchildren will be fully informed on this subject and understand clearly that everybody dies and that we need to hold each other tighter, love each other a little more, when the inevitable happens.

Depressing? I don’t think so. Learning to talk and embrace death is so much a part of living a good, meaningful, purposeful life. It also enables us to live, full, compassionate lives and to hold a hand out to those other bereaved souls. To say we are powerless in the face of death, but that we care and will walk alongside you until the loneliness subsides and you can walk on your own two feet again.

***

Back to my lady in Copenhagen. The comment still crushed me. I didn’t see myself as a victim, nor was it something I ever wanted to be. I was battered, shattered and cut to the core with loss and grief. However sad my husband’s death was, most especially the particular circumstances of it, my child’s death ‘outshone’ all others in terms of misery. She couldn’t have known any of this. Maybe she had a right to comment. In any case we all laughed. She apologised and I said it was all ok. And it was. At that precise moment it was. We all kind of connected in a weird, wonderful human way.

Does anyone really get grief right? It is so easy to offend when somebody doesn’t have any outer skin left. But surely the best thing is to try and break through the isolation. To say something. Anything, to try and hold another person’s hand when their world is falling apart around them. To show that we are all muddled, messy human beings and we often get things wrong. We are in this wonderful, chaotic, heart-breaking world together. I can forgive everything. Except silence.

***

I, an ordinary person, had shared my extraordinary life story with the general public and had therefore become something of a public person for a while. So soon with the whirl of 24/7 news I had become yesterday’s ‘fish and chip paper’ and just another anonymous broken soul walking the earth. At the time it was a strange experience and left me wide open to other people’s views on my and my family’s life choices. I hated that at times, but have never wavered in my belief that it was right to share my story, our family’s story. We were a family in terrible pain facing choices that we’d never have dreamt would have been forced upon us. But we really loved each other and cared deeply. Ultimately this is what saw us through in one way or another.

As a journalist I have often distanced myself from human pain by viewing the world through clever headlines, sentence construction and word counts. You have to do this to survive. As a young reporter the dreaded ‘death knocks’ left me as an observer in other people’s desperation. Somebody else’s child had died. We told ourselves that we were there to bear witness, to allow a person to tell their story. Maybe that’s true. I remember every single death; I keep them in my prayers.

I felt extraordinarily vulnerable though when it came to be my turn to be the subject of the story. At the same time my family and I were all driven by a need to share our narrative. By thinking that we were somehow connecting with others and maybe even helping others in similar situations, gave us some sense of meaning and purpose. When everything you have known and loved collapses in front of you, connecting and sharing is all that is left.

The essence of my story is really about how to cope with so much death out of the natural order of things and maybe therefore about how somebody can live when the very worst of all things actually happens. I don’t think you can really consider one without the other. How does one choose to live when death has a firm grip around the lifeblood of your family?

Some families just seem prone to catastrophes. You read about them in the news every day. Mine seems to be one of those families and because of that, I think my story is a useful one.

I lost my mother when I was 20. She just died one day. Sure she was ill but as I’ve already revealed, my family would never speak about death. She got cancer, had an operation, got better for a while and then passed away. That’s all I ever really knew. I didn’t know anybody else who’d lost a parent at that point, there was no internet to find a support group and not one person ever asked me if I was alright. I wasn’t. In fact not for many years. Youth seems so much about movement and the future, so I was swept up with the pace of life. But I never had time to reflect on, to understand what had happened and the terrible impact it had had on me, my studies and my quality of life.

I was a bright, curious child. Resilient and ambitious. And I think that these natural qualities got me through. Propelled me to the next stage. But in hindsight I could have been more - happier, better if I’d just got some early support, had somebody stopped and asked me, Hey how are you feeling? But they didn’t. It was a different time and place. Your mum died and you got on with it. Simple as that.

I remember people crossing the street to avoid me, maybe it was just too difficult back then. I think things are different now, but not different enough.

I was lonely and felt isolated and it took me a long time to come to terms with the idea that my mother wasn’t coming back. I had a recurring dream that she was there but hiding from me. It would take many forms. Sometimes she’d be in hospital but wouldn’t take my calls. At other times she’d moved to a flat but wouldn’t let me in. It was always a deliberate act. She was in control trying to avoid me.

I’d wake up in a hot sweat, gasping for breath. Then the realisation that my mother hadn’t deliberately abandoned me came flooding in. I’m not sure if I was more or less sad that she was instead dead and had had absolutely no choice in the matter.