Nigel, MND and me. 4: The wailing weeks

Death has moved in.

It oozes through doors, leaks through the letterbox, bleeds through brickwork, weeps through windows.   It skulks in every corner of every room.  It drips from ceilings and clings to carpets.   It prowls in passages and shivers in shadows.   It lurks in cupboards, the fridge and the pantry.   I see it in the swirl of my coffee in the morning and taste it as I drain my glass of wine at night.   Like a putrid smell, it permeates every part of the house and, like poison, it contaminates everything it touches.

This intruder, this unwelcome alien, has taken a seat at our table, declared its intentions and settled down to wait.   Nothing any of us can say or do will make it leave.

It is everywhere.  It besieges Nigel.  Consumes him.   Its presence is so profound that when I look at him that’s all I can see. I see its reflection in the haunted, frightened eyes of my family.   We stare at Nigel, all of us, eager to retain the image of him whilst he’s strong.   Handsome.   Upright.   We need to lock that image deep in our memories.  Before he slowly disappears.

Everybody knows now.  The news, as they say, is out. 

 It tore through the family with the destructive force of a tornado.  Now, everyone is struggling through the wreckage the best they can.   

Nigel paces so much he’s wearing a groove in the kitchen floor.   He can’t be still.  I wonder if he’s trying to escape the demons from inside his head.  If he keeps moving he’ll hold them off.  If he stands still, they’ll overpower him.  And he’ll be lost.

Craig spends every minute he can with his dad.  He’s quite unable to leave him alone for long.  Ellie, like most of us, plunged head first into the web and emerged utterly devastated.   Becky emphatically refuses to look.  She’s not ready to know. 

Les, Nigel’s brother, calls in every day.  He sits at the kitchen table, bewildered. 

‘Are they sure?’ he asks.  ‘Could they have got it wrong?’

Mel, unable to speak when she heard the news had to find the words to tell Tracey in Tenerife and their poor dad, Ron, holidaying there.  Their distance makes the news even more unbearable.

 ‘Thank God Mum isn’t still with us,’ they say.  ‘She couldn’t have coped with this.’ 

I’m not so sure.  She wasn’t called ‘Super Doz’ for nothing.

My sister Paula wakes in the middle of the night, inexplicably surrounded by Quality Street wrappers, and mum’s normally pristine house is left to gather dust whilst she too uncharacteristically devours chocolate.  My dad, who likes to think the world is kind and just, can’t believe it.   It’s not supposed to be like this.

Family and friends phone to offer us comfort and support and then phone each other in the hope of finding some for themselves.

The news sits like a boulder in the pit of everybody’s belly.  It’s heavy, cumbersome, and impossible to get used to.

Why Nigel?   How did this happen? 

If I can understand then perhaps I can handle it better.  There must be a reason.  There has to be.   Yet everything I read tells me that there is no reason.  No cause.  No trigger.  MND strikes at random.  Victims can be old, young, male or female.   The only common element seems to be that most people who contract MND are physically fit and active.   Nigel fits the profile.   Not only is he fit and active but also as strong as a horse.  Twenty years of scaffolding eight hours a day is better than any workout in the gym.  He plays golf at weekends and rides his bike every morning before starting work.  Couch potatoes don’t get this.   

We know now that the diagnosis of Motor Neurone Disease is a long and complex process.   The series of tests that eliminate everything else can take months to carry out and, to make things even more difficult; there is no single, conclusive test for MND.  Well, actually that’s not true - there is one  - an autopsy.

We’ve been surfing the net.  Devouring every scrap of information.  Desperate to find something, anything, that could ease this awful reality.  They really should tell you which websites to study when faced with such a diagnosis.  Most sites seem determined to terrify you.  One of the best, the ‘Motor Neurone Disease Association’ website, supports you through the nightmare in a constructive way.   It talks about ‘living with MND’, not dying from it.  It even warns you not to click on a link if you don’t want to know the prognosis.  It offers inspiring stories of fellow sufferers.   It offers support and encouragement. 

But it doesn’t offer hope.

Despite that we’ve joined the association.  Not a club we’re desperate to be members of but when you are lost and somebody hands you a map you take it.  They’ve sent us a file.  It’s worryingly like a welcome pack.  It screams:  ‘get organized.’   There’s a section for listing the myriad of medical professionals who will suddenly form part of our lives; a section for all the equipment Nigel will ultimately need – stuff we didn’t know existed; a section  for communication; one focusing on the difficulties of eating and drinking and finally, ‘end of life decisions.’  That section is missing.   Mistake, or tact?  I wonder.

I shove the file in a cupboard.  Not actually ready for that world yet.  Maybe later.

We’ve had our first visit from the Hospice nurse. 

‘Would you like to come and have look round?’ she asks.

Er … no.

Not ready for that either.

‘I want to die at home,’ says Nigel as he calmly sips his tea. 

‘Of course,’ she says, making a note, ‘we will help you with that.’ 

Are all our conversations going to be this weird from now on? 

In the absence of hope, you look anyway. 

I found one story on the net – ‘Eric is winning’.   He claims that total detoxification and masses of vitamins is the key to beating this appalling disease.  He goes so far as to recommend having all your fillings removed.  The mercury, apparently, is not at all good for you.  Whatever he did, it had him walking again, he says.  I’ve bought his book.  I’ve vowed to stock up on vitamins.  I’ll try anything. 

MND is a creeping paralysis.    Nigel’s muscles will deteriorate until he can’t move, speak, eat, or breathe.  We don’t know the route it will take.  There is no predictable pattern.  Everyone is different.   The websites talk of ‘personal journeys’ like you’re setting off on some kind of holiday.  Some people first lose the use of their legs, some their arms.  Others, totally lose the ability to speak, but can jog around the park for years.  Some drop dead before their limbs are affected at all.  It could take as little as six months or it could take years.   More than fifty percent of people with MND die within fourteen months.  Nigel’s lucky then.  His prognosis of three to five years is as good as it gets.  Whatever the timescale, the outcome will most certainly be the same: death.

I’m not sure I can do this. I’ve never been tested.  I’ve had a life free of tragedy.  I’m afraid – pathetically so.  I can’t even say the words ‘Motor Neu…’ without tears clogging my throat.   Unable to perform anything other than basic functions I’ve got myself signed off from work.  

Each day starts like waking from an anesthetic.  I feel numb, confused.   Familiar things seem unfamiliar.  My muddled mind searches for memories of yesterday - something that can clarify today.   

Death, having stolen the space in the bed between Nigel and me, says, ‘Good morning.  Did you think I was just a dream?’

And then I remember.

I’ve taken to hiding behind the settee.   The smallest space I can find.   Room only for me.   Nothing can hurt me here.   Nothing can find me.   Just as monsters can’t find you beneath the duvet, I’m safe.  Not even death would think to look for me here.    And anyway, death is busy.  It’s just left - gone to the pub with Nigel and Craig to watch the rugby.    Craig is no fan of rugby and no fan of the pub either, but the need to be with his dad is greater than what he dislikes.  Perhaps if they do normal blokey things they can share some special time and keep the killer away a little longer.

The doorbell rings, but I ignore it.  I’ve locked the doors deliberately.  I don’t want to see anybody.  I want to crouch here, behind the settee, and press my face into the carpet.  I want the strange and woeful noises that have been smothered deep within me to erupt at last.  My throat can’t hold them captive any longer.  I can’t swallow any more sobs.  I need this time, this hour, to let it all out.  I need to wail.

There’s been a fair bit of wailing these last few weeks - amongst us women at least.  Not quite akin to Jews at the Wall, or the howling display of grief common in Islamic and Arabic cultures, or even the keening of the Irish and Scottish, but a typically English expression of collective grief, following a great deal of alcohol. 

When Nigel and Craig return it will be time for me to regain control.  Time to plant the smile back on my face, time to pretend that everything is going to be all right.   Ellie and Becky will be back by then and we’ll sit around the kitchen table, eat a takeaway and drink some wine.   We’ll drag up long-forgotten family memories, laugh a lot and probably end up singing Pink Floyd songs, accompanied by Craig on keyboard, deep into the night.  We will talk about everything except MND.  We will enjoy each other’s company and refuse to allow that intruder to spoil our time together. 

We will be strong.  Like Nigel.

The extent of that strength has surprised even me.  Not a single tear has he shed.  Not one outburst of anger, not one indulgent second of self-pity.  No ‘why me,’ ‘poor me’,  ‘life’s not fair.’  Always the realist, he is as accepting of life’s disappointments as he is grateful for the joys.

‘Everybody gets a kick in the bollocks at some point,’ he says, ‘this is mine.’

He has set about sorting things out.  Already some major decisions are made. All his life he’s wanted an earring but been too macho to admit it.  Well, now, he’s having one.   A Jag too.   Always fancied one of those.  Oh, and a poker trip to Vegas.   Why not?  Not too extensive a bucket list by any means.  A good start.

Thanks to the support of Glyn, his business partner, he has decided to give up work.  He plans to play golf every day for as long as he can.  The critical illness claim is in.   A meeting with the accountant is logged the diary.   There’s only one agenda item:  ‘what happens now?’    

He is preparing to face the future the only way he knows how.  Head on.  Directly.    I believe he is facing it bravely, and with heroic resolve.  He disagrees.  He says there is nothing brave about it.  He says he simply has no choice.

In contrast, I have stepped, tentatively, into this unfamiliar territory.  Like walking on quicksand, each faltering footfall feels perilous.   It is Nigel who guides me, and the rest of us, through these wretched early days.  He is the one holding us in his arms as we weep.  He is the one who can still make us smile as he cracks impossibly unfunny jokes when each family member visits for the first time after hearing the news.

‘I’ve just been dying to see you!’ he quips, when my brothers come. 

We laugh, in spite of ourselves, and feel just a tiny bit better.

After thirty-two years of loving this man I am falling in love with him all over again.   The journey he is about to embark upon promises to present him with unimaginable challenges.  Along the way he can expect to lose the ability to do everything that he loves to do.  The path he will follow may plunge him to depths of despair that will test even Nigel’s unconquerable spirit.   The road may lead to intolerable torment and unspeakable suffering.

But wherever this journey takes him, he will not be alone.  I will be by his side. 

I will be with him every single step of the way.