Nigel, MND and me. 8: Disco legs

The bag of death sits in the kitchen cupboard, waiting patiently for its moment.  It’s been there for quite some time and may very well be nudging its use by date.  Presumably, a new assortment of injectable drugs designed to relieve end-of-life torment would be prescribed, should Nigel happen to survive beyond the stated date. 

‘It’s a good idea to have them in the house,’ says the Hospice nurse, ‘so you’re ready.  Especially as there's a bank holiday coming up.’

Will he not make it past Monday?

This is just one of the recommended boy-scout, be prepared, strategies that we have adopted to ensure that Nigel’s ultimate demise is as he would wish.

Others include the Do not Resuscitate directive and Advanced Care Plan declaring that Nigel will not receive treatment or medication merely for the purpose of prolonging life.  He does not want to be taken to hospital, nor does he wish to be revived.  These instructions, folded inside a white plastic container sporting a green cross, are housed, weirdly, in the fridge.   Everybody’s got a fridge apparently and, therefore, attending medical professionals would know where to look.  As ours is an integrated appliance merging seamlessly with all the other gorgeous new cupboards I am supposed to mark its identity by sticking a green cross on the outside of it.  To hell with that.  There are limits.

Thankfully, not every be-prepared strategy is about Nigel’s departure from this world.  One, at least, has the sole intention of enabling him to remain in it a tad longer. 

The fitting of a gastrostomy tube is a relatively simple, but ghastly procedure, and one, we learn, best undertaken whilst the person is still strong enough to endure it.  In anticipation of Nigel losing the ability to swallow, and not wishing to suffer the agony of death by starvation, the operation has been performed, and Nigel now shows off this floppy protrusion from his stomach like you would a tattoo.

There is also the small matter of preparing our home for Nigel’s increasing disability.

At one time regarded as merely the place to which we return after work and play, it is now where we spend almost all of our long and largely uneventful days.

‘Wait ‘til I’m dead,’ Nigel says, when I nag that we should redecorate the lounge. 

Not a chance.   We should make our home as beautiful and as comfortable as we can whilst we’re living, I argue.

The battle is won.  The lounge has had a complete makeover.  The TV, once a silent anathema in the corner watched only on a Sunday (not because we were observing some peculiar religious practice - Sunday used to be the only night we were actually in), is now a friend, that even gets to air day-time programmes such as ‘Homes under the Hammer!’  It has truly earned its place on the wall within its exquisite setting.

Obviously the specially adapted bathroom is a must, but shouldn’t we also consider the longed-for, begged-for-for years brand new dream kitchen while we’re at it?

Well why not?

Won that battle too.

It is amazing how utterly absorbing the choosing of a kitchen sink can be.  Not to mention the frenetic consideration required regarding the tap that adorns it, the island within which it sits, the design, style and arrangement of the cupboards surrounding it and ultimately the walls - ideally awash with an arresting hue – all uniting in their depiction of a unique and complementary creation, wherein all manner of culinary delights are cooked up.

Add to this the problematic picking of ultra-posh porcelain to enable a fully equipped disabled wet-room and a ludicrously indulgent bathroom to be housed in the rapidly progressing extension that awaits, with high expectation, the outcome of my decisions, and you would be forgiven for assuming that the woman buried beneath a bundle of bathroom and kitchen magazines, has finally lost the plot.

So how is it that, despite months of agonising deliberation, now that the kitchen sink is fitted and working, I don’t actually like it?

Ah well.   Maybe it’s a girl thing.

Or perhaps, this preoccupation with all things inconsequential is infinitely preferable to focusing on the unrelenting weakening of Nigel’s limbs.

Fasciculations, or muscle twitches, are a common symptom of MND.  There is not an instant when Nigel is free of this. 

At its best, Nigel’s impression is of a kaleidoscope of butterflies trapped beneath his skin.  When I place my hand on the area I can feel the gentle fluttering but can’t see it.  Sometimes the legs are affected, sometimes the shoulders, chest, back or arms.   Often he can feel it in his face and neck, and even his tongue.

At its worst, this manifestation is profoundly disturbing, both physically and emotionally.   Nigel’s skin becomes the mesh restraining a nest of serpents swirling riotously in an alien sea.  The raging ripples are visible and merciless – almost mocking in their intensity.

‘Look at us,’ they seem to say, ‘we’re coming to get you.  These legs won’t work much longer mate.’

The crashing waves surrender to cramps – and with them comes the pain.  Nigel’s legs can spasm in painful convulsions for up to an hour.  There is little anyone can do.   If he wants to be held, I hold him.  If he needs space, I stand back, watching helplessly, unable to do anything to stop it.

‘You’ve got your disco legs on again, Dad’ says Becky, shining a welcome ray of light into the darkness.

A wry, but grateful smile is her reward.

But there will be no more discos for Nigel.

Nigel has always been the robust, physical type, accustomed to being in control.   Born in an era still regarded as the domain of men, Nigel clambered and clattered his way through childhood combining cheek with an equal amount of charm.  His good looks, confidence and remarkable maturity swept him smartly through adolescence - not for him the acne-ridden, gormless and gangly youth.  He was popular and sociable - a good mate.   He never had cause to be a bully, but was certainly drawn to be a battler – experience that came in handy those years in the Army, when his inherent courage served him well.   With the exception of a bullet and possibly the Police, Nigel has never run away from anything in his life.

Whilst definitely not professing to represent the alpha male, he is entirely comfortable when immersed in typically male pursuits.  Playing and watching rugby; enjoying a round of golf prior to a couple of hours in the 19^th; downing a few pints in the pub and happily undertaking years of back-breaking graft to carve a successful career in the construction game – all sit well with him.  He is made that way.   Of course, he has a softer, romantic, loving side, but fundamentally, Nigel is a big, bold, brash bloke.

As Nigel’s body fails him, an ominous vulnerability is emerging. 

The odd stumble and a distinct difference in strength, or rather, lack of strength, in Nigel’s left leg is addressed, for a little while, with the aid of a stick.   Being a stylish fellow, his elegant canes are soon a talking point at the pub.  Of the snake, crown and golf club heads sitting proudly atop the polished canes, the crown seems the favourite.  Lending, as you might expect, a touch of majesty.

Sadly, his fine collection of walking sticks is now consigned to the stand in the porch and Nigel has no choice but to accept the aid of a walker.   It helps for a time.  Until …

I hear the slow drag of Nigel’s feet as he battles his way along the corridor.   He steers the walker in sharp, faltering jerks.   Each ragged breath a painful rasp, each sluggish step a struggle.   His arms tremble as he grips the handles.   His shoulders shudder with the strain.  The lounge seems such a long way off.  He’s not going to make it.  He’ll fall.  His customary self-assurance dwindles as he fights with every quivering nerve and sinew in his treacherous body to haul one foot in front of the other.

It’s time for a wheelchair.

The alarming fragility that now engulfs Nigel is provoking within him spells of severe anxiety and sensations of panic that are completely foreign to him. 

The intuitive ‘fight or flight’ response to peril has never been far from Nigel’s consciousness.  Throughout his life he has had an acute awareness of potential threat.   It's in his nature.  In the face of danger, he has been able to make the life-saving decision to fight or to flee.

Now, he can do neither.

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.