Wednesday, 25 April 2018

The Last of the Firsts

Today marks the first anniversary of Nigel’s death.  The day that Craig, Ellie, Becky, and I said goodbye to the man we loved and watched, with all-consuming, gut-wrenching desolation, as Nigel ended his life at DIGNITAS in Zurich.

He died calmly, happily and with unparalleled courage.

After ten years of living with Motor Neurone Disease – this is what he wanted.

The pride I felt for our three children that day was immense.  Their bravery surpassed only by Nigel's.  

I am sure that the memories of that extraordinary, heart-breaking day will never leave us.

Today, on this first anniversary, I suspect we will think of nothing else. 

It was indescribably difficult to leave that room.  The thought of leaving him there, alone, in that strange place, in another country, to be cremated without ceremony, was unbearable.   We lingered so long that eventually, we were encouraged, or rather, ushered, out of the door, by Kurt, the DIGNITAS representative and escort.

‘Don’t look back,’ said Craig.

I shouldn’t have.  But I did.

The silence throughout the journey back to the hotel was punctuated only by the sound of strangled sobs. We stared, seeing nothing but the rivulets of rain as they pelted the taxi windows.  Alone with our thoughts, we couldn’t speak.  There was nothing we could say.  I watched, mutely, as a single tear trickled slowly down the curve of Becky’s cheek.  The sight will stay with me forever.

Back at the hotel, Craig, Ellie and Becky made tearful calls to their spouses and I called Melanie and Paula.  They were the ones who had been elected to trickle the awful, but expected news through the network of family and friends.  

We spent the rest of that day and the next attempting to process what we had experienced.   

I felt like there had been a massive explosion inside my head.  I tried to gather what was left of the delicate shards of my shattered mind and store each sliver carefully on its own virtual shelf to be brought out again only when I could cope with that particular splinter of pain.   Then, as I suspect happens in times of trauma, a protective, numbing fog settled over everything that was left.

And along with Ellie and Becky, I drank an awful lot of wine.

Forty-eight hours later, home once more, my immediate concern was how to report Nigel’s death. We were all aware of the possibility of an investigation into a death at DIGNITAS.   What should I do?  Do I present myself to the Police?  Do I seek legal representation?   A solicitor advised me to report the death to Nigel’s doctor, who would in turn inform the Coroner.  It was the Coroner who decided the next step.   

Nigel’s determination to travel to DIGNITAS to end his life was no secret to the medical team that supported him throughout his illness and records of multiple discussions were on his file.  I have no doubt that this will have been shared with the Coroner.

Clearly a thoroughly decent person, the Coroner decided there was to be no next step.  Apparently an investigation is much more likely to be triggered if a body is brought back into the country.  Wish I’d known that earlier.  

I can’t imagine that any one of us could have predicted the magnitude of publicity that burst onto the media, traversing the entire globe within days of Nigel’s death.   This was entirely due to Nigel’s heart-breaking final post on Facebook, posted the day he died.

“It gives me great joy, today, to announce that I have found the one and only cure for MND, but it is with great sadness that it means I have had to go to DIGNITAS in Zurich to end my life.

I would like to thank all my Facebook friends for their support and friendship since I joined in 2008, one year into this cruel illness.  You have been a tremendous support to me throughout the ten years of this illness.

It is such a shame that the laws of this country prevent me from doing this in my own home.

My decision was arrived at because I wanted to take back control of my life and take the victory of killing me away from this disease.  I wanted to die while I am happy and can still smile and not be controlled by this wicked disease any longer.  I wanted to die with dignity instead of being tortured.

Some people may think it’s the easy way out but believe me it’s not easy to leave your loving family and friends.

I’ve been ‘dying’ to post this!! Ha ha ha ha!!

Thank you and goodbye. XXX “

This tragic message says so much about Nigel.  It shows his tremendous courage, his strength and determination and his irrepressible humour, even in the most dreadful circumstances.  As a supporter of Dignity in Dying, it displays his belief in self-determination, dignity and choice.    He was not a man inclined to self-pity, nor was he the type to give in without a fight.   But when the time came – at a point that only he should decide – he wasn’t prepared to go quietly.   Nigel’s final words, those inspirational, uplifting words, touched thousands upon thousands of people.

Despite the fog that now resided permanently in my head, it was very clear to me that I had to respond positively to the local paper’s request for a telephone interview.  The fog triumphed however, when asked the question: 

‘What was he like?’

How could I answer that? Right there, on the phone, without a moment to think?  What do you choose?  He was hundreds of things.  Multi-faceted.  Fascinating, infuriating, wonderful, kind, terrifying, bewildering, brave, hard-working, obnoxious, loving, soft, strong, hilarious …

I’ve never been able to articulate perfect sparkling sentences without thinking first.   I’d probably have misrepresented him entirely and grunted something ridiculous like, ‘Well, he was alright.’

So we agreed to do the interview by email and as a result, the journalist produced a truly thoughtful and sensitive article.  Seeing Nigel’s face smiling back at me from the front page of the paper brought a lump to my throat.  Nigel was very well known in Scarborough: a respected and fair businessman, an immensely popular golf and rugby club member and a great bloke to chat to in the Pub.   I tried to imagine what people would be thinking as they read it.  Many would have been shocked by what Nigel had done, but many more would not have been surprised at all.

I could never have anticipated the overwhelming response that article provoked.  In seconds it was all over the Internet.  The national papers scrambled all over it, wanting a piece of him, a version of him that they could invent.   They crawled all over his Facebook photos and grabbed whatever they could.  A sleazy freelance reporter turned up at the door and was sent packing.  I agreed to speak to a sole press agent who fielded the story to interested nationals and each one put their own particular, irritatingly inaccurate, spin on it.   I deeply regret that intrusion.

The story was featured on ‘The Wright Show’, which I watched in terror in case anybody dared to criticise him.

I was even invited to appear on ‘This Morning’.   The invitation was for the following week only.     I imagine stories must be current in order to maintain the interest of the easily bored public.  Given the persistent fog in my head and the certainty that I would not do Nigel justice, as my inability to be articulate in an impromptu fashion was at its height, I declined.  

Neither was I quite ready to pick up the banner and herald the cause of Dignity in Dying and I absolutely did not give a stuff about the easily bored public.   

But apart from that, it was too soon.  Far, far too soon.   My pain was much too raw to be exposed on national TV.   So, no thank you ‘This Morning.’ 

Three weeks after his death, Nigel came home.

His ashes had been collected from Heathrow by a funeral director and accompanied home.   This funeral director explained, with sincere consideration, that the urn was contained within a cardboard box.

I’m not sure what I was expecting, but I was grateful to be warned about the cardboard box.  I mean you wouldn’t normally expect to be presented with your husband in a cardboard box unless you’d upset some seriously malicious gangsters.

He brought the box into the house displaying the kind of dignity and solemnity you would expect from one who is used to dealing with the bereaved.   I was pleased then that Nigel hadn’t just rocked up in the post.

Nigel’s initials DNC were stamped on top of the box.  The style and colour of the lettering were exactly the same as his DNC Scaffolding logo.

I was given copies of the death certificate, cremation documentation and customs records. Sincere condolences were kindly proffered in softly spoken tones before he respectfully departed.  There was no ‘if we can be of service in the future…’ 

This is not the kind of thing that happens twice.

I carefully retrieved the urn from the cardboard box and placed it in on the worktop in the kitchen. It was an unremarkable, plain terracotta pot, with a lid bearing Nigel’s name and date of cremation.  I touched it, gently stroked its side, and from that point on, started talking to it.  

‘Your Dad’s home,’ I said to the kids a little later that day.

None of us had seen ashes before.

 ‘Looks like muesli,’ said Craig, quite rightly, when we eventually did.

Nigel had previously chosen his own urn – a stylish white box with a weeping woman (me, obviously) draped on top of it.   A nameplate had been fitted in readiness for his Memorial in a few days time.   At least now we could fill it with Nigel’s genuine ashes and not expect Craig to carry the urn down the aisle full of sand from the beach, a few shells and the odd crab’s claw!  Not sure he could convincingly achieve quite the gravitas that the moment demanded.      

I retained some ashes to fill various mementos for the kids and other family members but the ashes I would leave in this terracotta pot were intended to nurture some Forget-Me-Not seeds that I would plant in Nigel’s memory.

The rest we would scatter.

A staggering 170 people attended Nigel’s Memorial.  Many more had wanted to come but the hotel could only cope with 150 they’d said – until they coped beautifully with 170.

This was not a day for tears.  This was a day, planned largely by Nigel, to celebrate the life of an exceptional man.  As requested, we wore our smiles and our touch of yellow, shared precious memories and funny stories and we four paid our profound and personal tributes to a husband and father, finding the words to express why he was so uniquely special. 

Every word of the ceremony has been recorded in a Remembrance Book, which I take (along with a letter I was to receive from Nigel the following day) to bed, when I need to wail.

Ellie presented me with said letter in the loos of the hotel where we were having lunch.  She had been his confidante, his conspirator, and his hand to write the words as he dictated them.   But not his signature.  He took the trouble to sign it himself.  It was his wish that I receive it the day after his Memorial.  This was his way of encouraging me to move on, to live my life. To be happy for the life we have shared, but to find a way to enjoy this new one.  It is entirely typical of Nigel to be so compassionate.

But the letter, now my most treasured possession, merely magnifies my sense of loss and the deep, unending sadness that I carry with me, even now.  

But then, less than four weeks after Nigel’s death, I couldn’t imagine moving on.

They say there are five stages of grief: denial, anger, bargaining, depression and acceptance.  Nobody claims it’s that straightforward of course.   These are not items on a list that can be ticked off when completed.  It would be nice though wouldn’t it if grief could be likened to a railway line and you could travel through those five stations then jump off the train?  Job done.

I personally feel that we had been through all of those stages before Nigel actually died.  As a family, we had reached the point of acceptance when Nigel went to Switzerland.

But even though we acknowledged that enormous sense of relief when Nigel’s suffering was finally over, that relief could do nothing to quell the sadness we felt, and will continue to feel, because he had to suffer in the first place.   Nor can it suppress the sorrow brought on by his loss.  

So, I’m not actually convinced that you can ever get off that train.   What is sad today will still be sad ten years from now.  Sadness stays with you.  It becomes part of you.  You can’t leave it behind.  It’s not something that comes to an end or something you get over.  You just change.   Become a new you.

My family, bound together by the invisible wires that support us are coping in our different ways.  The kids will tell me if they’ve had a little cry, if they thought about Dad today, saw somebody that looked just like him, or simply need reassurance that it’s what he wanted. 

As for me I do not come across as a wretched, wailing widow.  

Not at all. 

I still laugh, have fun, derive immense pleasure from my family and friends and look like I haven’t a care in the world.  

There are many times when I respond to the question of ‘how are you doing’ with ‘I’m fine,’ and actually mean it.  

‘Just take it five minutes at a time,’ said a fellow dog walker, whose name, for my shame, I still don’t know.

Easy, manageable chunks of time.  Five minutes. Anybody can do anything for five minutes.  Well, okay, you can’t hold your hand in a fire or hold your breath underwater for five minutes – but you can hold it together, keep control of yourself for five minutes, surely?

I have been overwhelmed by how much people actually care.  From a simple phone call or message via Messenger saying ‘thinking of you’; or a text asking if I’m okay; unexpected bunches of flowers appearing on the doorstep; an invitation to dinner or lunch or an entire weekend away - family and friends keeping a discreet and watchful eye and helping me keep busy to the point of dragging me off on holiday.

I have sidestepped the many hundreds of steps carved into the stunningly beautiful island of Santorini in favour of spending the days soaking up the sun, sipping the wine and savouring those spectacular sunsets.  It wasn’t too difficult to be tempted to travel twice to Tenerife where the only decision required of me each day was at which restaurant to eat.   Weekends in London combining a show, posh dinner, lots of wine and the odd sight here and there have also been slotted into my increasingly packed diary. 

And yes, most of the time I’m jogging along perfectly well doing what I have to do.

But then that sense of loss will suddenly wash over me when I hear a particular song, or a character on TV uses a phrase Nigel would use, or I could simply be filling the dishwasher.  It’s actually at its worst when I’m having a really good time and I’m abruptly reminded that Nigel isn’t here to share this moment with me. Then it’s not just about my loss – it’s about his.   And his loss is so much greater than mine.

Some mornings I wake up feeling like my body is made of lead and the only reason I drag myself out of bed is because the dog will make a mess if I don’t.

But at least I can prepare for the ‘Firsts’.  The important points in the year that should be marked by family celebrations.

Like the kids’ and grandkids’ first birthday without Nigel in their lives.   The absence of ‘and Dad’, ‘and Grandad’ written in their cards.  

My own birthday and no card from him at all.  

We made a big deal of Nigel’s birthday.  This was our opportunity to scatter his ashes in Casson’s Copse on the golf course.   So called because of Nigel’s constantly misdirected drives.  Lit by the torches on our phones and armed with our personal little Tupperware containers, containing a little bit of Nige, we crept over the course before dawn with far less dignity than the occasion warranted and after a great deal of heading in the wrong direction, eventually found the Copse.

Craig, who is proving to be quite the poet, moved us to tears as he read the verse he had written especially for this moment and we were quite unable to pretend we weren’t really crying as we scattered Nigel all over his Copse and quite a lot of ourselves too.

We then sat on a bench overlooking the sea, demolished a bottle of champagne and watched a disappointingly unspectacular sunrise.   

It was lovely.

Then of course, helped along by copious amounts of alcohol we stumbled through Christmas and New Year, conscious of that nagging feeling that someone important was missing.

What should have been our 40thwedding anniversary passed, sadly, almost unnoticed.

And now, it’s today.   The first anniversary of Nigel’s death.  The last of the Firsts.

At times of loss, many people look for help from outside normal conventions and seek solace in their faith.  Whilst respecting the beliefs of others, I don’t believe in God.  Neither do I believe in the Afterlife.  

I struggle with the concept of angels and all the symbolism that goes with it.   I don’t believe that Nigel’s spirit is watching over me, or that he’s waiting for me somewhere.  Trust me, if he was watching he would have found a way to play merry hell about the money I’m spending!

I know exactly where he is. He is in my head, in my heart and in my soul.  

What’s left of him is mingling amongst the shrubs in Casson’s Copse, he’s resting in his chosen urn in the lounge, he’s got a place on the mantle in all the family’s houses and he adorns the necks or wrists of the ladies in a piece of memento jewellery.

Yet, inexplicably, today, of all possible days, the Forget-Me-Nots, nourished by a little bit of Nigel in that terracotta pot, have chosen to flower.

Serendipity?

Regardless of my beliefs, or lack of them, nothing can stop me from talking to him – or about him - all the time.

My conversation is littered with snippets about Nigel.  Whoever I’m talking to will be reminded about what he used to say, what he would have laughed at, what he loved or hated, what he did or didn’t do. 

I indulge in a constant personal internal dialogue.  Well, strictly speaking a monologue, as I never get a bloody answer.  

I constantly seek his advice and then go right ahead and do precisely the opposite of what he would advise.  ‘What would you do Nige, if you were here?  What would you think?’  But the man with whom I shared every thought, idea, question and observation, isn’t here anymore. 

I recently came across the expression ‘widow brain’ and instantly grasped its meaning as it applied to me.   There are days when I wonder if dementia is taking hold or my brain has suddenly become a tin of mushy peas.

I feel that I have lost much of the confidence I once had in both the things I do and things I say.   I am suddenly fumbling helplessly in the darkness of the gap that is left in my life. The one person who shared my greatest, joyous and most wonderful moments, who understood everything about me and loved me anyway, the one who knew what I was thinking without the need for me to utter a single word, the one who picked me up when I fell, held me close and kept me safe, is gone.   

Consequently, in spite of family and friends, there are times when I feel completely lost and entirely alone.

I wander round the house and stop and stare at any one of the many photographs of him that line the walls. If I stare long enough and the wine has rendered me particularly pissed I might even imagine that he winks at me.

I shake my head as if to say, ‘Nigel you bugger, why did you leave me?  What am I supposed to do now?’  Then I place my hand on his image and hold it there.

Of course, I know why he left me.  We all do. 

And I loved him too much to stop him.