I’m so angry my husband chose an assisted death

I’m so angry my husband chose an assisted death: She held his hand as he sought release from motor neurone disease in a Swiss clinic, but in this heart-rending account, Deborah reveals why she’s distraught he chose to ‘abandon’ her

  • Deborah Binner’s husband Simon, 57, died at Eternal Spirit clinic in Switzerland
  • She recalled his decision to have an assisted death documented by a BBC crew
  • She says his death felt like abandonment but she respected his decision 
  • Simon had a ten-month battle with motor neurone disease before his death
  • He attempted suicide before Deborah agreed to go with him to Switzerland 
  • His death came three years after daughter, Chloe, 18, who battled with cancer  
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My outfit had been carefully planned. Despite the cold and the urge to wear a big snug jumper, I’d chosen a pretty red blouse my husband, Simon, loved.

I still wanted to dress up for him. Even then. One last time. He told me I looked beautiful. Those words were so precious.

We went out to dinner with Simon’s sister, Liz, and his three best male friends, just like we’d done hundreds of times before. It seemed the most normal thing in the world. In one way.

It was only when I looked at the menu that my head started to swim. This was the very last meal I would eat with my husband. We were fast running out of time. Simon was slipping away.

He took my hand and smiled. I was struck by the most awful dread.

Deborah Binner (pictured left with her husband) revealed the heartache she experienced from watching her husband Simon, 57, choose an assisted death in Switzerland just three years after her daughter Chloe, 18, died from cancer

The next morning, we would accompany Simon, only 57, to the Eternal Spirit clinic in the chocolate-box town of Basel, in Switzerland. After a gruelling ten-month battle with the most aggressive form of motor neurone disease (MND), he had decided an assisted death was the only option. A decision I respected, but disagreed with.

To add to the surrealism, a BBC crew was with us, too. Not many of the 37 UK residents who choose an assisted death in Switzerland each year have their last months on Earth filmed. But my husband, an adored, high-energy alpha male who lived at 100 miles an hour, was unusual in many, many ways.

When he had first told me his plan, as a former TV journalist, I’d been horrified he wanted to ‘bleed’ all over national television. But this was the first of what was to become many times that he reminded me, with a mischievous smile, that it was his life and he would do what he wanted with it.

That night, we shared Simon stories around the table. Liz spoke with no bitterness at all of how her brother had been the ‘most loved’ child; how he would steal the spotlight at every opportunity.

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Typically, here was Simon going out in a flash of glory, surrounded by friends and family and the star of his very own TV documentary. Only somebody with the flamboyance, flair and bloody-mindedness of my Cambridge-educated husband could orchestrate their final moments like this. And he seemed really happy and at peace.

This might sound like I am making a good case for assisted dying. But I have always avoided becoming a spokesperson for it — believe me, I’ve been asked many times — because I’ve been left feeling conflicted at best, angry at worst.

My head understands the intellectual arguments and I find it hard to disagree with them. But my heart still says no. Should we not be kinder, more patient, more respectful of human life?

Isn’t how we support the dying so central to who we are as human beings? And there’s a part of me that believes it’s better, if a person has the best possible care, to let nature take its course.

Simon (pictured holding Deborah’s hand moments before his life ended in a Swiss clinic) battled motor neurone disease (MND) for ten months before deciding to die

Some dismiss my view and put it down to a Catholic upbringing. But it’s about the value we put on life. On love. On bidding farewell to the world and to family.

I worry deeply about how people who are ill can lose the sense of mattering to other people. If there were the option of ending it all relatively simply, would they feel pressure to opt for that rather than become a ‘nuisance’?

Then there are the after-effects on the family and friends left behind. Personally, I am absolutely fuming that my husband left me to fend in this world alone. That was not the deal.

During our marriage, I had always counted his calories, made him walk, run, dealt with his medical appointments when he became ill, cooked him fine, organic meals, reduced his stress levels, cared about him, loved him, cherished him. But it wasn’t enough. I wasn’t enough.

All my love, with all my heart, was pointless and useless in the face of MND.

Simon was not a cruel man and was hugely dignified. But — and I seek only to show a truthful picture — his death felt very much like abandonment and like it wasn’t a collaborative act.

It was so much less about us as a loving couple than it was about an audience. I think he needed this, as the intimacy of a private death would have been too painful for him. It would have meant facing up to it more directly, without distraction.

Deborah (pictured with Simon on their wedding day) recalls meeting Simon at a dinner party when she was age 36 and getting married after a serious six months relationship 

I speak as a bereaved mother who, less than three years before Simon’s death, had watched her beautiful, 18-year-old daughter, Chloë, die after a three-year battle with cancer.

That felt like somebody had reached into my body and wrenched out my heart.

The pain was so intense that, at times, I dreamed that I, too, could die. Yet a certain closure slowly arose in me; I knew I had left no stone unturned in an almighty battle to save her. And in the end, her death was soft, gentle, supported and at home.

When she lay dying, I sat with her in my arms, stroking her little head with tiny tufts of hair.

She told me she was happy. Unbelievably, for that moment, I was happy, too.

This may seem the strangest thing to say, but it was the worst of times and the best of times. I touched on love at its very deepest level. In contrast, Simon’s death feels unresolved. To me it felt angry, rejecting and abrupt. It felt a lot like a suicide.

Simon was brave. It was incredibly important to him to be brave; to be seen to be brave.

I think he genuinely thought that taking his life was courageous and that it would save us a lot of heartache seeing him spiral into full disability.

I know that his intentions were entirely pure.

But surely it is equally brave to live with an illness, a disability, to embrace vulnerability and to accept that none of us really has that much control.

When Simon Binner, then 42, came into my life, I was a strong, resilient 36-year-old mother of two young girls and had been on my own for a while.

We met at a dinner party and I was reluctant when he later asked me out.

But it turned out to be a good date. He had a kind of boyish charm and, to my utter surprise and joy, a razor-sharp wit. His intentions were clear from the off. He wanted a serious relationship and to get married. It took us six months. We got married in an old-fashioned way, with a white dress and morning suit.

Simon (pictured with his daughter at the Swiss clinic) was diagnosed with progressive bulbar palsy which has a life expectancy of between six months and three years

I’d thought I was fated to be always on the wrong side of a relationship with totally unsuitable men. And yet here was someone successful, clever and talented who wanted me to be their wife. I felt 10 ft tall.

Things got better and better. Simon’s daughter from his first marriage, Zoe, immediately welcomed me, Hannah and Chloë, and we were delighted she was part of our family.

Simon was quite simply the most wonderful stepfather. He loved my children in a way I had never expected. He put them and me first, alongside his own daughter.

Life was good and the girls were blossoming. Then darkness flooded in when, aged 15, Chloë began to complain of leg pain.

After three visits to the GP, we were finally referred to a specialist and told the devastating news in February 2010 that she had Ewing’s sarcoma, a rare bone cancer usually found in adolescents, in her pelvis.

Should people be able to choose an assisted death?

Some 82 per cent of the public support the choice of assisted dying for terminally ill adults, according to a poll by campaign group Dignity In Dying

It was ‘treatable’, but I soon learned that there’s a big difference between ‘treatable’ and ‘curable’.

Our lives fell apart. But grief can go hand in hand with joy; we could laugh and find happiness in every shared meal or cuddle. It was like a parallel universe.

And when Chloë ran out of options and was offered palliative care, I remember how well she was looked after.

Her deeply compassionate nurses helped her pass away with immense dignity.

After a year and a half, Simon and I were getting back on some kind of footing. Our daughter Hannah, now 26, started her own family — I have two grandchildren: Nahla, four, and Roman, six — and we were keen she and her sister Zoe, now 28, were not worn down with sadness.

Deborah (pictured with Chloe and Hannah) recalls Chloe being diagnosed with Ewing’s sarcoma in 2010 after complaining of leg pain

Then the darkness returned. Having complained of slurred speech, Simon was diagnosed with progressive bulbar palsy.

This is the fast-moving version of MND, a progressive disease involving degeneration of the nervous system and wasting of the muscles. In Simon’s case, life expectancy was between six months and three years.

With MND people often talk of Stephen Hawking and how worthwhile — and long — his life was. But he was a serious outlier. The path of MND is usually far faster and more brutal — as in my husband’s case.

It creeps in; a strange, tingling feeling in the tongue, speech that makes you sound drunk. Then it gets going, making you choke on almost anything. Coherent speech disappears, replaced by muffled noises and grunts. You fall flat on your face with no warning.

Your reactions go, so 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.

Make no mistake, it’s a living hell. Straight away, Simon told me he wanted to go to Switzerland to end his life.

He contacted Dignitas that spring — three months after diagnosis — for more information (although he later turned to a Basel clinic run by a not-for-profit company called Eternal Spirit). This was when he heard of a BBC documentary crew looking at the subject.

Simon (pictured at the Swiss clinic) attempted suicide at home when Deborah spoke of not going with him to Switzerland

He was keen to document his experience — he had a strong altruistic streak and wondered if it would be of use to someone else. Subconsciously, I thought he’d forget about it and we could get on with living, albeit in a different way, as we had with Chloë. But he deteriorated quickly over the next few months.

In a curious parallel, throughout Simon’s illness, the Assisted Dying Bill was going through the House of Commons. I watched the debate, but didn’t want to get involved on either side.

I didn’t want Simon to suffer, but I didn’t want him to die, either. Watching him plan his own death, while I still wanted more time, was overwhelmingly traumatic.

You may well ask why I agreed to go to the clinic with Simon. The truth is I had no choice.

After I’d plucked up the courage to say I wasn’t coming with him, he attempted suicide.

First, he tried to hang himself from the children’s garden swing. Hours later, he tried to throw himself from the window of his loft room. I’d only gone downstairs to get a cup of tea.

It was all so utterly, utterly heartbreaking. His actions certainly were speaking far louder than any words he could write.

Deborah (pictured with Simon) says she witnessed the relief Simon felt when she agreed to go with him to Switzerland

I took his hand. ‘I’ll come,’ I whispered. ‘I’ll arrange it now.’

His face crumpled into what can only be described as complete relief. I had underestimated how important my presence, my blessing, was.

I looked into the bright blue eyes I’d fallen in love with, and understood what this man wanted.

By the time we were lying together in our hotel room in Basel, after our final supper, there was nothing more to say on the matter.

I held him gently in my arms and we said nothing. There was a strange calm and peacefulness in the room.

The next morning, we took a taxi to the clinic with Liz and Simon’s friends. Simon lay on the bed. Before the time came, he played me a message recorded by my daughters on his phone.

I’d been bottling up my tears so tightly, but out they spilled, fast and furious. He explained again how he felt he had no choice, that life had been great, but it was over for him. He told me what I already knew: we’d had a hell of a life together. And not everybody gets that kind of love story.

Simon (pictured left with Deborah) was told that his death needed to be filmed for legal reasons to prove that he killed himself

The doctor explained that Simon needed to be filmed for legal reasons: to prove that it was he who released the syringe pump so poison could be poured into his veins before moving to his great big heart.

Simon was unfazed by all the cameras around us. He looked directly into the lens and smiled for his last shot.

That image is freeze-framed in my mind. He looked so dignified, so ready to leave.

The doctor explained that when he let go of the syringe, Simon would die. He nodded and pushed the syringe into its final place. He grasped my hand and I felt every last bit of strength leave my body and my legs buckled.

It took a couple of minutes. It took a lifetime. The room suddenly began losing oxygen, like a plane falling from the sky.

I wanted to grab an oxygen mask, a prop of some sort, but nothing was there. Something huge left the room, leaving an airless space around us. I gasped to catch my breath. Was that the soul leaving? I wondered.

After Simon died, there were many very dark days. The film crew went away and I returned to the house we had shared for 14 years.

While Simon’s turmoil had ended, in some ways mine was just beginning.

Deborah revealed Simon (pictured) wanted his story to help others in his situation 

Thank goodness for our golden retriever Ralph, who was delighted to have me back. But most importantly, thank God for Hannah and my two little grandchildren, who made life worth living.

Since Chloë died, and all through Simon’s illness, I had worked with a number of excellent therapists and health professionals. I believe this is one of the reasons I have survived in some shape and am now ready to play a useful part in the world.

As Simon hoped his story would help others in his situation, I hope mine may help others in mine. The wives, the partners, the family members who just aren’t sure, who are left wondering, did we really all do enough for him, to make his life matter whatever the circumstances?

Nowadays I find comfort sometimes. I’ve even found love again — something Simon expressly wanted. It happened one day and was so surprisingly easily.

I have moved house and am building a new life.

I talk about Chloë and Simon every day, I think about them every minute. I can feel my daughter’s hand in mine and listen to her chatting, laughing and, yes, I can almost talk to her. My husband, too.

I am such a different person now. Beaten and scarred, yes, but still here. And just maybe I’m a better, kinder, more loving person in spite of the tragedy.

Maybe because of it.

Adapted from Yet Here I Am by Deborah Binner, published by Splendid Publications on November 12 at £9.99. © Deborah Binner 2018. To order a copy for £7.99 (offer valid to 19/11/18, P&P free on orders over £15), visit mailshop.co.uk/books or call 0844 571 0640.

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