Nigel, MND and me. 5: The bucket list begins ...

Late February 2007 - Spain

We need warmth.  Sunshine.  We need to escape the gloom.  Not just the intrinsic gloom of the February weather but the saturating melancholy that drenches us.  We’re tired, drained.  Sick of thinking about it, sick of talking about it, we are worn out and weary of worrying.  We need to get away.  We need Spain.

We’ve never been to this part of Andalucía’s Costa del Sol before.  I’m not even sure where we are.  Some place just before you get to Estepona, I think.   We wander aimlessly through the narrow streets, along the seafront and around the harbour.   That’s been the pattern all week.  Just strolling, hand in hand, the sun on our faces, or our backs, heading for nowhere in particular.  We haven’t made the effort to play golf, nor have we bothered with any nightlife.  Instead, we have lovingly absorbed the soothing rays of the sun into our sad and sallow skin and revelled in its comforting, healing warmth. 

‘Let’s go down there,’ says Nigel, spotting a deserted little cove.

To reach it we need to climb over a short wall and then scramble across about twenty feet of rock armour.  The simple presence of the armour could possibly explain why the cove is deserted.   Clambering in flip-flops over such defences is not an easy feat, but for the first time in weeks, we feel alive.  Rising to the challenge Nigel grabs my hand and, laughing like kids in pursuit of an adventure, we boldly brave that bridge of boulders.   After much girlish squealing on my part and ‘come on, you can do it’ encouragement from Nigel, we emerge at the other side like conquering heroes.  We are giddy.  Carefree.  We’re playing out. 

The cove welcomes us, wrapping us protectively within its rocky arms.  The wet, smooth and untouched sand stretches before us like a sheet of shimmering glass.  The sea, iridescent and inviting, beckons, as would an old friend.  It seems as though this special place was just waiting for us to discover it.

The crystal clear waters cool and caress our flip-flopped feet as we paddle along the beach.  Nigel finds a stick and that irresistible urge to leave a mark in virgin sand drives him to slowly scratch his name into the wet surface.  He then scrapes my name alongside it and envelops both within the shape of a heart.

‘Love you,’ he whispers, smiling.

‘Love you too,’ I answer, reaching to embrace him.

And suddenly, quite without warning, safely hidden from the world by this secret bay, Nigel drops his guard.   

‘I always knew I’d never get old,’ he says.

I feel his shoulders start to shudder and what sounds like a gasp, an involuntary sob, escapes from somewhere deep inside him.   He presses his face into my neck and holds me close. 

And for a few short seconds, Nigel allows himself to grieve. 

For a long time we stand here.  Wrapped in each other’s arms.  We don’t speak.  There is no need for words.  Silent, but for the sound of the sea, soothing in its timelessness, we stand together and sweep away the sorrow and treasure this moment instead.   This magical moment, these few precious minutes, will give us the strength to endure what tomorrow will bring.

One day we will come back here.  But for now, all that matters is now.   

The future can wait. 

June 2007- Las Vegas

Nigel takes his place at the large oval poker table and nods politely at his fellow players.  Six men, four women, intent on only one thing – winning.     A seemingly friendly, if not exactly classy little gathering of various colour, shape, size and taste.  At least nobody is gracing the table in a bathrobe tonight.   Gone are the days when gents were expected to frequent casinos dressed in dinner jackets and when ladies were sure to be elegantly bedecked in exclusive gowns.   Shame.   At least the dealer is smartly clad in the black and gold house livery. 

He deftly spreads the new deck of cards in a perfect arc before placing them in the automatic shuffler.   The woman sitting next to Nigel, all baubles, brass and boobs, fiddles nervously with her towers of chips.  Perhaps she’s down to the last of the housekeeping.  Flanking Nigel’s other side is a skinny guy wearing a cowboy hat, striped shirt and dazzling checked shorts.   Not a good look.  He’s chewing gum so aggressively he looks like a snarling dog.  That would put me right off.    

Nigel, however, doesn’t seem the least bit perturbed.  He loves every minute of this.  With a spoonful of skill and a bucket load of luck he’ll be here all night.   

I watch him from my vantage point at the doorway of the lounge allocated exclusively for poker.   He chats easily with the others, seeming to be understood.  His slurred speech probably sounds, to the American ear, like a slightly tipsy Prince Charles.  He unconsciously twirls the shiny new golden hoop in his left lobe.  Still getting used to it.  He catches sight of me and that practised poker face adopted purely for gambling erupts into a broad grin and he waves.  I point at the ceiling signalling that I’m going up to the room, make the thumbs up gesture for luck, blow him a kiss and leave him to it.

As I stroll along the plush and velvety highways of the small town that is our hotel I decide to call for a nightcap at one of the dozen elaborate bars sprinkled like glittering jewels along the seams of this lavish canvas.   Only the remains of the book that didn’t melt in the forty-two degree heat by the pool await me in the room.   Might as well people watch for a little while.

Skirting the punters playing blackjack at the bar, I find a quiet corner and take a moment to admire the artificial talons enhancing my now gorgeous hands.   Do they warrant the hundred and forty dollars I’ve just forked out for them?  Of course they don’t.  I’ll have chewed ‘em off by Friday.   And as for the ninety dollar face cream sitting in my bag that swears to bring all further signs of ageing to a staggering stop with just one application – well, I reckon I’ve been mugged.

Still, that is their business, after all.   The town exists merely to relieve you of your money.  But, it is done so terribly well, and with such panache.

Vegas is everything I expected it to be: shameless in its hedonistic pursuits; delightfully decadent; supremely stylish and garrulously garish. 

Once you have been stunned by the sights along the Strip, floated by the fountains at the Bellagio, witnessed the sinking of the pirate ship at Treasure Island and taken in a show or two - unless gambling is your thing - there is merely more of the same.   Admittedly, the helicopter flight to the Grand Canyon and Hoover Dam is a trip not to be missed, but, after that, the fascination and the flamboyance begin to fade.

I set off to take a final peek at Nigel in the poker lounge but it’s impossible to reach it without being assaulted by the discordant din radiating from the gigantic lobby that is home to thousands of slot machines and aptly named one-armed bandits.   Unlike the hordes of witless worshippers, I have not been tempted to slot a single cent into any one of these grotesquely guzzling gods.  I flee from the chaotic cacophony as fast as I can, but even then, it takes a full ten minutes to reach the relative tranquillity of the area reserved for more discerning gamblers.

Ah … looking good Nige  …  an impressive collection of chips.    Increased his original stake by a considerable amount by the look of it.  He could well be here all night.  He will stay for as long as it takes to lose all his chips.   No doubt he will emerge at dawn, a little poorer in wealth, a little richer in joy.

It’s been a good week.  Earring sorted, Vegas sorted.  Two out of three ticked off the bucket list.

August 2007 – Venice

(Not on the list, but who doesn’t want to see Venice?)

Venice’s San Clemente Palace swelters in the searing heat of the August sun.  The hotel’s abiding elegance and boundless sophistication are scorched into its every brick.

 

Equally elegant and sophisticated guests stroll amid the lush gardens and centuries old courtyards, many adorned in white towelling robes as they head for the comparative cool of the pool, where beautifully bronzed and preposterously perfect bodies lounge beguilingly on beds or glide seamlessly through the glistening water.

Sprouts, I’m thinking.  Should we have sprouts?

‘You what?’ says Nigel.

‘Oh nothing, sorry.   Didn’t realised I’d spoken out loud.’ 

I’ve just texted the family and invited everybody for Christmas.  I’m planning the menu.  Here, in the height of summer, basking on the beautiful Isola di San Clemente, just a short water shuttle ride from the glories of Venice, I’m contemplating Christmas.   Never mind the legendary Rialto Bridge, the grandeur of the Grand Canal, the splendid Piazza San Marco, the gorgeous gondoliers … no, starters, mains, table décor and colour schemes seem much more important right now.  Oh, and of course, the mandatory dilemma of the sprouts. 

Hope they’re not already committed, I panic.   After all, this could be the last time we can all be together. 

I can’t yet shake that ‘could be the last time’ anxiety.   I’m not alone in this.   Even though we know it’s irrational, it won’t budge.   As the weeks pass it becomes clear that Nigel’s MND is the type that will progress slowly, rather than rapidly.  And yet none of us trust it.   We’re all guilty of scrambling to take photographs, desperate to capture moments with Nigel whilst we still can.   There’s an ill-disguised sense of urgency as we set up a perfect pose with the grandchildren; seize a chance to entrust a family grouping to eternity; take a snapshot with his siblings.

But, six months on, the family is starting to cope a little better.  We are becoming accustomed to carrying our grief around in our pockets and handbags, and leaving it hidden.   Ordinary conversation is returning.  Even laughter is trickling back into our lives.     

Death, however, continues to perform its role of the malevolent escort.  It insists on stowing away in the suitcase and hijacking our holidays.   Well, certainly my case.  It prefers my bag.  I’m beginning to wonder if I should give it a name.  Something appropriate to call it when it shows up uninvited.  I can think of many names – all unprintable.

Nigel ignores it.  Completely.   Since his lapse on that Estepona cove he has forbidden this looming reality to spoil a single one of the days he has left.  He has successfully banished it from his consciousness and will have nothing to do with it.  He behaves as close to ‘normally’ as it is possible to do.  He is as cheerful, gregarious, witty and full of life as ever.  And, amusingly, at the same time, as mindful of money as he as ever been.  No, ‘oh to hell with it - can’t take it with me,’ for him.  By all means, we are indulging ourselves unquestioningly in luxurious holidays and fabulous hotels when considered worthy of the price tag, but the fact that he is ill has not distracted him sufficiently to prevent him from being outraged at the price of the breakfast at this hotel or to be prepared to pay the extortionate fee for a leisurely glide along the canals in a gondola.  Nigel is still Nigel after all.

For my shame, I am trying, but failing, to do the same, although this pernicious presence is not so all pervading as it was just a few weeks ago.  On certain days, it lurks so deeply in the shadows I can almost forget it’s there at all.  On others, it nags at me.  Irritates.  Like a whinging child sitting behind you on a plane; like I imagine tinnitus must feel.  Then there are times when it leaps abruptly from its lair and punches me full in the face with such ferocity that I’m almost knocked off my feet.  This usually happens when performing ordinary, insignificant activities: as I turn a corner; reach for a can of beans; step out of the shower; brush my hair.  Like a savage beast it overpowers me and tears me apart.

And of course, things have changed.  It has changed things.   Everything is tainted, damaged.  On our sight seeing jaunts, when I enter an exquisitely ornate room, rather than marvel at its magnificence, I am immediately drawn to the crack in the ceiling.   Where once I could delight in the breath taking beauty of an object, a painting, a view – now, beauty is no longer without a blemish. 

For me, the world’s wonders have lost a little of their wonder.  And more than a little joy has been stolen from my soul.

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.