Nigel, MND and me. 7: Closing doors

April 2008

‘At least I get to walk voluntarily through the doors before I’m pushed,’ I think, as the college doors close behind me for the final time.  

In this troubled world of further education there are few college managers whose face persistently fits the frequently changing senior management regimes long enough for their careers to reach a natural end.  Most clash with an incoming Principal at some point, whereupon they find themselves instantly banished, obliged to remain on garden leave until the college administration removes all trace of them ever having existed.  These hapless managers, bewildered and abandoned, with little to do but prune their hedges and tend the roses, wander round their gardens wondering what on earth they did wrong. 

My twenty-three years here have not been entirely free of friction – often infuriating decisions and misguided strategies have led to supremely challenging periods where the compulsion to storm out of the building in a huff, slamming the door behind me, has almost triumphed over the need to earn a few quid.   On numerous occasions I’ve locked myself in the loo and contemplated principle over pay.

But in the main, this has been a happy place for me.  I have been lucky enough to work with some inspirational and talented individuals and teams, united in their commitment to enhance their students’ success.  I will miss them.  I have also worked with one or two not-so-talented individuals who I will not miss at all.

I returned to work about four weeks after Nigel was diagnosed with MND.  In many ways work proved a welcome distraction, particularly the all-consuming preparation for a forthcoming Ofsted Inspection, but in my heart I knew that my occupation could no longer remain a priority. 

After fulfilling many different roles, I leave as a Quality Manager.  Not the sexiest of jobs.  A significant chunk of my time is spent re-inventing the wheel.  I churn out procedures to replace very similar procedures with a slightly different title, in the hope that these new ones will do a much better job.  These are then imposed on the long-suffering staff for implementation.   Following a brief period of bedding in, they are obliged to tolerate me further as, like the zealous Gestapo, I crawl all over them conducting compliance audits.   

Hardly surprising that teachers dive beneath their desks or flee behind filing cabinets when they hear my stilettoes tip tapping along the corridor.

Rather like those Inspectors, who swept through the college like a horde of invading warriors and, within three days, had mercilessly destroyed us all as they delivered us a devastatingly poor result.  Perhaps I might have been well advised to loosen up a tad on those procedures?  Not the best way to end a career.

Ah well, what was it Kipling said?

“If you can meet with Triumph and Disaster

And treat those two imposters just the same.”[1]

But I can take solace from the odd snippet of success I’ve scraped together along the way too.  And of course, my now tarnished CV need make no attempt to impress any future employer.

The circumstances of my departure from the college could not be more unexpected or unwelcome.   MND is not quite what I had imagined would prompt retirement.   Still, how many people get to retire at forty-nine?  And how much more difficult would it be if I had no choice but to continue to work?  No, we are undeniably fortunate.

So, as one door closes …

It is time to move on.  Time for Nigel and I to be together, to make the most of the time we have left.

Nigel’s modest bucket list is now complete.   His shiny, golden coloured S-type Jaguar, complete with cream leather seats and walnut dash, purrs patiently outside the house awaiting its master’s pleasure.

Its master’s pleasure is to luxuriate in a leisurely drive to southern Spain, where we will rent a rather lavish house for the next eight months.  Not for Nigel the stress of dashing to every point on the planet in pursuit of the places he hasn’t yet seen.  No, he wants to savour the Spanish culture and wallow for a while in the Andalucía way.  

Life is too short to rush it.  

We plan to explore this vibrant land in our golden carriage.  We may even have a go at learning the language.

Felices Fiestas!

November 2008

The lock slots smoothly into place as Nigel turns the key in the front door for the final time. 

‘Time to go,’ he says.

The Jag, engine already running, glistens in the glowering heat whilst the gentle hum of the air conditioner cools the interior.  It waits at the end of the path, impatient to be off.

We don’t want to leave.

Nestled within a good three-wood’s reach of two golf courses and an easy bike ride to shops, bars, restaurants and the beach, this house could not have been more perfectly positioned. 

Slowly, reluctantly, Nigel steers the car away from the aptly named ‘El Paraiso’ community and up to the top of the hill where only last week I tumbled off my bike as we staggered home from one of our adventures.  Too much gin in the sangria I suspect.

‘Are you insane?’ I had said, when, shopping in the mammoth El Cortes Ingles, Nigel held aloft two pushbikes, one in each hand, his face, beaming like a kid on Christmas morning.

‘What d’ya reckon?  Shall we get ‘em?’

‘They’re only seventy-five euros apiece,’ he went on.  ‘Bargain!’

‘Top quality then,’ I groaned, feeling saddle sore already.  I haven’t ridden a bike in years.

In fact, they proved to be one of Nigel’s most inspired purchases.  Once you’ve mastered the juggling act of lugging the damn thing up the steel steps and over the footbridge that crosses the notorious Autovia del Mediterraneo, you discover a world that you would simply never happen upon by car and to which you would never venture on foot.

We peeked through hedges into the private and exquisite gardens of the luxury villas that line the beach; we poked our way nosily around alternate communities to compare them with ours; we skirted golf courses with the intention of returning with clubs in order to challenge that which looks easy from a bike and we pedalled precariously into beach bar after beach bar.

We devoured sardines cooked atop charcoal, washed down with plenty of sangria.  Well, they’re salty.   Long, leisurely lunches listening to the smooth and calming rhythms of chill-out music progressed through to dinner and beyond. 

We cycled to our favourite beach bar after Spanish class, and Nigel, at times struggling to be understood in English, would perform his newly acquired language skills for Raoul, our immensely patient waiter.  Shame we didn’t become as accomplished in this exciting tongue as I had dreamed.  Our teacher, whilst enthusiastic and competent, could have benefited from some good old lesson planning and reinforcement exercises.  But Julie, you are not a Quality Manager in a college anymore, so lighten up.

Some days we ventured out at dawn, an advance party on a mission to seek out new and stimulating spots for when family and friends came to visit.   Our unselfish efforts were, naturally, designed purely to ensure their stay went without a hitch and not at all an opportunity for us to impress by showing off our incredible and extensive knowledge of the area.

Whether by car, cycling or on foot, we have traversed every part of this sun-soaked province, and in so doing, we have developed a deep and enduring affection for this Spanish gem.  Of the palaces of Granada, the battlements of Cadiz, the patios of Cordoba and the bodegas of Jerez, along with all the sparkling cities and ancient white pueblos in between, we will never tire.  

We have frolicked fervently at festivals and become feverish fans of the fiery flamenco.  We have wept to the haunting wail of the Spanish guitar and snoozed lazily through siestas after sipping sangria.  We have tasted the most tantalising tapas and pounced ravenously on perfect paella.

However, despite spending eight months in this wonderful place I am happy to say we haven’t attended a single bullfight.  I have also, shame on me as they literally grow on trees here, failed to develop a taste for olives, but I have got the brownest, most deeply tanned legs ever.

This has been one of the happiest periods we have ever spent together.  Even our old antagonist, the presence of death, given to hijacking our holidays, has mostly remained hidden, emerging only occasionally from the bottom of a bottle of gin.

But we have to leave.   The doors are closing on this episode of our lives.

A new door is opening –

MND is marching through it, and we must prepare.

---

[1] ‘If’ by Rudyard Kipling 1895

Nigel, MND and me. 6: MND up close

The lift lobby in the pit of the twenty-one storey, monolithic, charmless concrete tower of Sheffield’s Royal Hallamshire Hospital is quiet but for the muted grumbling of people approaching the limit of their endurance.

The overhead lights indicating the proximity or otherwise of the four lifts tantalise us trapped intolerant folk as we agonise over before which of these carriages we should congregate, in order to ensure our deliverance to the floor of our choice – the fifteenth – in our case.

At this point, the lift farthest away from us arrives.  Mouth gaping, it spews its cargo into the crowded vestibule.   Harried staff hurry to their next crisis; a pallid, scrawny young woman cautiously wheels the intravenous drip cart and weaves her way to the exit to smoke one of the fags from the packet clutched in her bony hand; visitors, their duty done, head happily for home and outpatients, some seemingly lost and confused, seek reassurance from the signs that they are in the right place.  

Once again, we miss the opportunity to be swallowed up and the doors slam shut in our faces.   

‘We’ll all be dead before we get a lift,’ I mutter, with my customary patience.

We have spent so much time at this hospital you would think we would have mastered the lift scramble by now.

We were advised to come here to see one of the country’s leading neurologists who could confirm Nigel’s diagnosis and also to participate in a research trial.   Nine months later, following numerous repetitions of the agonising tests he had previously suffered, along with a two night stay to enable an excruciating lumber puncture procedure to be carried out, his diagnosis was indeed confirmed.

‘Yes, it’s mild MND,’ says the Professor.

Mild?  I think.  What does that mean?  Is that like being a little bit pregnant?

‘It’s slow.  And it won’t change pace.’

Mild and slow … surely this gives us hope …  we might have longer than we thought.

‘Is the prognosis the same?’ asks Nigel, speaking the very words that were in my mind.

‘Oh yes.  Three to five years,’ she says, completely crushing the tiny fragment of hope that had dared to grope its way out of the locked mineshaft from where it had been imprisoned. 

It is somehow worse hearing it for the second time, and from that instant, I hate this place.   This is the place where, finally, all hope vanished.

‘How long might I expect some quality of life?’ asks Nigel.  A reasonable question.  After all, we are new at this.

The Professor, a smartly presented, highly intelligent woman with a busy schedule, looks at him, her slightly pinched face genuinely puzzled. 

‘What do you mean?’ she says, unnecessarily brusquely.  

Knowledge and expertise she may have, bedside manner not so.   I can feel myself becoming slightly irritated.  She’s just confirmed a grim diagnosis and an even bleaker prognosis.   All the decisions we make from now on will be based on what she has just said.  Everything Nigel wants to do with the rest of his life he will need to do in the next three years.  It might be that he is too ill to do anything after two years and we can’t gamble with the possibility that he will make it to five.  Give the man a break.

‘Well, I don’t know, maybe when I can expect to be in a wheelchair, that kind of thing,’

‘Impossible to say.’   Brusque, again.   Train to catch?     

I’m going off her.

‘Everybody is different.  And you must appreciate that you can have a perfectly good quality of life even when in a wheelchair.’

We both nod, ashamed.   Of course we appreciate that.  We feel scolded.  Embarrassed.  An image of a Paralympic athlete appears in my head but I discard it just as quickly.  MND sufferers are not athletes.  Perhaps we should apologise for not exactly looking forward to it.  Neither of us knows quite what to say.   If we have any more questions we now lack the confidence to ask them.

She must have seen our defeated expressions because her demeanour relaxes a little and a smile softens her face.

‘Do you have grandchildren?’

‘Yes,’ we answer in unison.

‘Well then, you can enjoy watching them when they visit.’

That’s it.  I’m off her.  Nigel’s a doer not a watcher.

With nothing left to discuss, we leave as quickly as we can. 

Later, as we share a bottle of wine at home, Nigel says,

‘So, if it’s slow at the beginning, it will be slow at the end.  When I’m knackered and can’t move.’

‘Yes,’ I reply, having drawn the same conclusion and thought of nothing all afternoon but the man with MND who spent the last year of his life unable to move anything but his eyebrows.  

‘We’d better make the most of now then,’ says Nigel cheerfully, clinking glasses with a flourish.  ‘Bugger it, let’s open another.’

But for now, we remain immersed in the world of motor neurone disease.

Only recently we attended a meeting hosted by the MND Association - our first experience of MND up close.   Amongst the partners, carers, speakers and exhibitors were the reason we were all here – those living with MND. 

We sit at our allotted table somewhat apprehensively.  We feel out of place, different from the rest.   Only when Nigel starts to speak do you realise that all is not well.  His body displays no sign of the disease, yet.  But here, amongst the delegates, the distressing ravages wrought on the body as the disease advances are clear to see.

An elegant lady, one of the speakers and herself a victim of MND, circles the room on her mobility scooter, chatting amiably as she stops at each table.

A young man, couldn’t have been more than thirty, is breathing due only to the aid of a ventilator strapped to the back of his wheelchair.  A tube from the machine leading to the mask which half covers his face directs the pumped air into his lungs to keep him alive. 

A lady, her wild, copper curls almost covering her face, crouches in the huge contraption that is her wheelchair.  It bears countless attachments, the purposes of which I can but speculate.  Her small frame, lost in that apartment of a chair, has that wasted look, her hands, crooked and atrophied, lay limply in her lap.  But she is smiling.

On the table next to us, a petite woman holds out the chair for what I assume to be her husband, so he can take his seat.  MND has affected his arms, both hang uselessly by his sides.  Later, I watch as she carefully feeds him from a spoon.  I can’t watch for long.  It seems impertinent. 

I can’t believe any of this is going to happen to Nigel.  I just can’t believe it.   But we know, without question, that it is.

These people, their carers and families must have made such an effort to be here.  I am full of admiration for them.  Perhaps they, like us, came to discover a little more about the world they now unwillingly inhabit.  What was their world before MND?  What careers did they follow?  What were their hobbies and passions?  How much have they lost and how have they coped?  But whilst their lives and bodies have been devastated by MND their minds are sharp and intact and they remain the people that they always were.  They have the same likes, loves and irritations that shaped them and made them who they are.  Who they always will be.  There is a sense of determination in the room, an intensity of spirit.  MND can’t take that away. 

It is difficult to see the real person behind the broken body and unintelligible speech, until you too adopt the guise of the invalid.  When you do, it is humbling.

The presentations take place and it becomes clear that not one person in the room can hope for a cure.  Not for them.   They have been searching for the answer since the late 1800s and still it is out of reach.  The scientists, researchers and medical professionals know so much and yet so very little.  They can tell us exactly what is happening inside the body, how the motor neurones should function and what happens when they start to die.  But the cause of it and how to beat this thing continues to mystify the scientific arena.   Despite constant fundraising activities, those trying to unravel the enigma are thwarted by lack of money.  The 5000 people who have MND in the UK at any one time are simply not enough to attract the millions that it will probably take to develop a cure. 

But they won’t stop trying.  And because of them, there is hope.  Hope for others.  Hope for the future.

Before leaving, we skirt the exhibitors and Nigel is particularly interested in a piece of equipment that has the potential to eradicate everybody’s worst nightmare.  Who amongst us doesn’t shudder at the thought of being unable to wipe our own bum?  Here, with the ability to prolong independence and maintain dignity is a loo that washes and dries the user.  No need for hands.  A simple, but life-enhancing object.

‘Put that on the must-have list,’ says Nigel.

At last we emerge from the lift into the Neurology Department on the fifteenth floor of this gargantuan hospital.  This is when you realise you’ve left something important in the car.  But, thankfully, not today.  If I had, I swear I would take the stairs.

Today’s weather paints the normally vibrant panoramic view from the waiting area a dismal, dreary grey.   It mirrors my mood.  It’s one of those dark and gloomy days when the sky hovers on the ground and has neither the energy nor inclination to lift itself up.

‘I wonder if there’ll be a slot in there for me, soon?’ laughs Nigel, pointing to a filing cabinet marked ‘Deceased.’

Only you, I think.  Only you could find that funny.  Still, my mood is lifted a modicum and in spite of myself a smile steals its way onto my face and stays there.

In the next two hours we should see one of the doctors from our beloved Professor’s team, who will interview Nigel, examine him and gauge the progression of the disease.  We’ll then spend time in the clinic with other MND patients where blood tests will be taken, the same questions asked that were asked last time, the same forms completed that were completed last time in the hope that by the end of the research period, this diligent monitoring of the trial drug will determine its effectiveness in slowing the disease’s advancement. 

Participants are being given a measured dose of lithium – a substance found in batteries. 

Imagine if after all this time simply sucking on a battery could hold the cure!

If only.

As we wait to be seen by the doctor, I recognize the man being pushed along the corridor in a wheelchair.  His name is Matthew.  He greets us with a broad smile and a wave as he passes by.  He was walking with a stick last time we were here. 

I wonder if Nigel will make it to the end of this trial still on his feet?   Will the slices of time taken up by hospital visits from the very limited and precious allocation he has left be worthy of the sacrifice?  Will it make any difference to MND’s relentless approach? 

Who knows? 

 ‘You have to try,’ says Nigel.  ‘If you do nothing, you get nothing.’

And so we will see it through to the end.

But right now this world of MND is suffocating us.  We need to be free of it.  

Spain beckons.

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.