Nigel, MND and me. 9: Sentenced to the chair

The strident whine of the riser-recliner motor heralds that Nigel is on the move.   

‘Bathroom?’

He nods.

‘Excuse us,’ I say, placing my glass on the coffee table.  ‘Won’t be long.’ 

Not true, we’ll be an age.   No longer can anything be achieved quickly. 

‘Shall I wait until you get back?’ asks Mel, who holds us enthralled in the midst of an animated tale involving superglue and a lock.

‘God no! Carry on.’  This story is too riveting to impose a halt.  Chances are Mel will sweep us towards the spectacular crescendo before we’ve even left the room. 

‘So, when nobody was about and all was quiet … ‘

Paula obligingly refills glasses as, difficult as it is to concentrate when captivated by this fascinating fable, I slide the sling across Nigel’s back and beneath his legs.  Hopefully got it the right way up this time.   New at this, my manual handling skills are tentative and clumsy.   It looked so easy when the OT did it.

‘Can we help?’ ask Derek and Tom, almost in unison, the less than polished performance clearly a cause for concern.

‘No don’t worry.   It’s easier with one.’  Another untruth.   However, two people who don’t know what they are doing are twice as bad as one.

‘So what happened when the police arrived?’

‘Well …’

Grunting indelicately with the exertion, I maladroitly manoeuvre the mobile hoist towards what the kids have dubbed ‘Dad’s control centre.’

Captain Casson is pleased now that I didn’t wait until he was dead to refurbish the lounge.  He can command operations from his perfectly equipped post, sited with regimental precision so all essentials are within reach and from where he can oversee everything and everybody, without the bother and irritation of even turning his head. 

‘You’re joking!’

The chair, flanked by two side tables bearing the whole shebang of necessities such as man tissues, toothpicks, sweeties, medication, thermostat, fan, and an ever-present cup of tea, is on loan from the MND Association.  It is now one of the few places where Nigel feels comfortable and consequently, this is where he spends most of his day.

Just wish it wasn’t pink.  What is it with pink chairs?  Who the hell wants a pink chair?

‘And then … you won’t believe this …’

Avoiding the clamps that grip the edge of each table, the arm of one, holding his lap-top, the other, his iPad, and trying not to snag the wheels on the warren of wires that stretch like sleeping snakes towards their personal plug point in the den of extensions that litter the floor, I manage, at last, to get the thing parked and the sling attached.

‘Hurry up, I’m gonna piss meself!’  says Nigel, swelling the hilarity already present in the room, Mel’s sparkling saga having flounced fervently to its finale.

Agonisingly slowly, Nigel is lifted from the chair.

The laughter subsides.

Nigel hangs, suspended.   Dangling like a baby carried by a stork.    Defenceless.  Exposed.

Not long ago this man could swing swiftly and skilfully through scaffolding with the agility and athleticism of an ape.

Nobody speaks.

Somebody coughs.

Someone else sniffs.

An uncomfortable silence descends.

‘Does my bum look big in this?’

Raucous laughter erupts into the room, as Nigel’s perfectly timed one-liner tears through the tension bringing welcome relief to our grateful guests.

Good on yer, Nige.  Even now, as his condition worsens, his enduring sensitivity and unselfishness makes the rest of us feel better.

I lower Nigel into one of the four wheelchairs that form part of the ever-increasing catalogue of care kit that occupies space in our home.   The chairs have, or have had, their role to play in Nigel’s progressive disability.

This one, powered, compact and nippy, but not especially comfortable, is mainly used to ferry Nigel to and from the bathroom.   Having been provided by the wheelchair centre it would have been reasonable to expect the chap that demonstrated it not to shout at Nigel as if he was not only deaf but also stupid. I could only marvel at Nigel’s tolerance as he had the operational complexities of a joystick painstakingly explained to him.  Physical disability does not render a person retarded. 

Languishing unloved, banished to the gloomiest corner of the garage, covered in cobwebs and buried beneath junk, is the first and only manual wheelchair we ever bought.   With the confidence that springs from total ignorance we allowed this abomination of a carriage to accompany us on a long weekend to Brussels.   The chair is bewitched, compelled by demons to tumble into every pothole, fault and fissure – either that, or Brussels is the most wheelchair-unfriendly city in Europe. 

Or … perhaps my driving has something to do with it? 

Whatever the reason, this is when Nigel determined that his situation was indeed perilous. Subjected to the incompetence of others, however noble their intentions, is not something that he can bear.  The manual wheelchair has to go.

Apart from the fact that pushing a fourteen stone man up the slightest incline ensures half a stone of weight falls off you in a fortnight, I’m not at all sorry to see it exiled. 

A sporty, metallic blue, nifty little number also lives in the garage.  Bought mainly because of its boasting that it could effortlessly climb kerbs.  It lied.  Nevertheless, it has proved its worth by providing hours of fun as a serious contender in wheelchair races.   Sadly though, it has had its day and is now condemned to gather dust with its manual mate.  

All of which leads us to the ultimate in mobile chairs. 

‘I’m free!’ Nigel shrieks, hurtling down the lane on his way to the shop to buy a paper, as excited as a little kid dashing to spend his pocket money.   Perched atop his trusted steed – a shiny new, top of the range, can-do-just-about-anything wheelchair, he waves happily and heads off on a huge adventure.  

This chair can travel for fifteen miles; perform a perfect 360-degree turn on a tanner and assume numerous positions including a tilt and recline deep enough for sleeping.

Good as it is, further adaptations are necessary to meet Nigel’s exacting standards.  A made to measure upholstered winged back and headrest are commissioned along with two additional foam filled seats, four and six inches deep respectively.   

‘It cost more than our first house,’ says Nigel to absolutely everybody.  Proudly showing off his truly customised original lounge chair – a Queen Anne on wheels. 

For anyone unable to walk, a powered wheelchair is indeed liberating.  With the right equipment, disability need not be at all limiting.  

But MND is more than disability.  

As I watch him disappear round the corner, I smile at the degree of pleasure he will derive from this simple trip to the shop.  What am I saying?  He won’t just go to the shop.  If I know Nigel he will drive the chair up the steepest hill he can find to test how fast he can career down it.  When he’s conquered that he’ll see how sharply he can tackle corners without toppling.   He’ll drop it off the kerb into the road just to see if it gets back up.

He may very well head for the path alongside the golf course and playfully hail a former combatant to put him off his stroke.  He’ll think back to the day he got a hole-in-one on the par four, in spite of, or possibly because of, the hangover he was nursing. 

Possibly, he will head in completely the other direction, crossing the Spa Bridge into the centre of town.  His chair could very well earn its battle scars by engaging in a less than friendly joust with the myriad of menaces mounted on mobility scooters.   He might barge bullishly into stores, toppling tins, crashing into crockery and colliding into clothes.

He could even scurry to the Skate Park, riding the ramps before those trendy teens in a tantalising display of slick tricks and mighty moves. 

He’s bound to bump into old acquaintances and even encounter some new ones.  He’ll smile and share a joke, tell them his chair cost more than our first house, and add them to his ever-increasing circle of Facebook friends.  

If he comes across a gang of scaffolders erecting or dismantling a scaffold, he’ll laughingly tell them they’re doing it wrong.  They won’t be offended.  They’ll know him.  Every scaffolder does. 

He will do all this because he’s Nigel.   He will always be Nigel.   No matter what this disease does to him.

Bit by bit, MND will steal his body and ultimately, it will take his life.

But it will never quell the character in his bones, lure the laughter from his heart, or still the spirit in his soul.

  

   

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.

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[1] ‘If’ by Rudyard Kipling 1895