Nigel, MND, and me. 2: Diagnosis

February 2007

This stunning renovation of a sixties three-bed suburban semi in Shipley fails to stun me.  I really couldn’t give a stuff.  Snapping the magazine shut I fling it on the table.  Could do with some stunning renovation round here, if you ask me.  Must every hospital reception area be confined to the colours pink and green?  Has there been some edict imposed on such establishments? 

For the last three months we have wilted in one wishy-washy waiting room after another.   The tired décor of this one stares back at me.  Pastel pink walls bearing badly hung pictures of white lilies, pale green carpet and impractical pink chairs rubbed grey by hundreds of backsides.  Even the lush umbrella plant in the corner can’t lift the insipid palate.  Makes you feel ill even if you’re not.  I would have expected better from a private hospital.  

‘How much longer do you think?’ I say, much louder than I need to.  I don’t care if the receptionist hears me.  She does.  The thirty-something attractive brunette behind the desk catches my eye and smiles, a pleasant, indulgent smile.  The kind of smile you plant on your face when trying to deter a toddler from having a tantrum. 

‘Mr Harrop won’t be long,’ she says.  ‘You’re next.  He knows you’re here.’ 

I smile back, ashamed.  If I had been the one behind the desk I would have shoved me to the bottom of the list.

‘Calm down, we’ve only just got here,’ says Nigel, ‘we’ll go into York after this and grab a bite.  I want to pick up the accounts from John’s, anyway.     And there’s a decent pub just near his office.’

Slightly mollified by the thought of lunch and a glass of wine I sit back in my pink chair and shut up.   I like York, so many great places to eat.  Nigel is using the time by sketching the scaffolding framework needed for the job he measured up on our way to the hospital.   We never go anywhere without pricing a job or two along the route.

‘Do you think we’ll get the test results today?’  I ask, unable to keep quiet for long. 

‘Maybe.  Dunno.  We’ll see, eh?’

He grins at me and returns to his jottings.  Some time ago the back of a fag packet would have served perfectly well as his office.  Not so now.  ‘Busy’ barely describes the business.  I’m sure Scarborough would have slipped into the sea had it not been for ‘DNC Scaffolding’ propping it up for the last twenty years.    

We’ll see…

That’s what I used to say to the kids.  It means:  ‘be quiet and bugger off and play.’

I reach for another magazine but think better of it.  The receptionist is looking at us.  She probably recognizes us, as this is our third appointment.  I ignore her and focus on the door we first went through three months ago, clutching Beryl’s report. 

 “Peter Harrop.  Neurologist.” says the sign.

Maybe Nigel’s right.  Maybe it is just stress.

But if that’s the case, is it really necessary to carry out so many blood tests you could fill a bucket with the stuff?   Should you seriously be expected to undergo an MRI scan to determine your stress level?   Like there’s some stress indicator on your brain that glows red when you’re sucked into the tube?   Is there any need to endure the severity of pain brought on by electromyography and nerve conduction tests, where they stick needles deep into the muscles of your arms, back, legs and throat and then run an electric current through them?   Not only once, but twice?  And, could it possibly be normal practice to perform a biopsy on a chunk of your thigh muscle in order to examine it for what?  Stress?

Stress, my arse.

The door opens and Peter Harrop appears.

At last, I think, getting to my feet, although the wait has been all of seven minutes.

 ‘David.  Hello again.  Come in, come in.  Good to see you.’

For a second I’m confused, I thought we were in next.  And then Nigel is shaking the neurologist’s hand like he’s an old mate.  Such a mate Nigel hasn’t actually told him his name!  I follow quickly, silently cursing my husband’s parents who gave him the forenames of David Nigel and thereafter referred to him only as Nig.  What were they thinking? 

Perhaps they went off the name ‘David’ as soon as it was registered?  And perhaps, in those days, they might have worried that ‘Nigel’ sounded a bit posh?  It’s possible, back in the 50s.  Up north anyway.  Maybe they were loath to give him a label that could get him beaten up by kids called Gav, Jack or Mick?  Who knows?  So ‘Nig’ (rhymes with pig) was it.  

Only family call him ‘Nig’ now, to everybody else he’s ‘Nige’ or ‘Nigel’.  In official circumstances, however, he is always referred to as David.  He never tells these professionals his preferred name.  It amuses him.  It annoys the hell out of me.

So, here I am, sitting next to some bloke called David, before a grand walnut desk, feeling like some naughty kid in the Head Master’s office.

 ‘Now, David, how have you been?’

Peter’s a pleasant chap, fortyish, easy manners with a confident air - as you would expect - at seventy-five quid a consultation.  He studies Nigel’s face with genuine concern.  He glances at me, acknowledges my presence, and nods.  A slight smile tugs at his mouth.  A similar smile tugs at mine.  Then both smiles disappear and we turn our attention to Nigel. 

‘Any developments?’

Nigel laughs.  ‘No, I feel great.  It’s just this speech.  I sound pissed all the time.  Which, I am a lot, but not at eight in the morning!  It’s a bugger for business.’

Okay, let’s examine you again then shall we?’

And once again, just like the last visit, Nigel sits on the bed and follows Peter’s instructions to push hard against his shoulder with one leg, then the other.  Arms next.  Nigel holds out his right arm for Peter to push down on it.   It doesn’t budge. 

‘Three of us could swing on that before it gives way.’

We all laugh, but it’s true.  Years of scaffolding have given Nigel the kind of muscles and strength that even Popeye would envy. 

‘And the left.’

To our complete surprise, Nigel’s left arm gives way under pressure.  That’s a change.  How odd.

‘Have you noticed any weakening in this arm?’ Peter asks.

‘Only after lifting six pints.’

Joking.  Always joking. 

‘Okay, just stick out your tongue please.  And leave it out for as long as you can.’

Nigel sticks out his tongue while Peter resumes his seat behind his desk and studies his computer screen.

It’s not possible to look anything but ridiculous when your tongue is dangling from your mouth like a panting dog, and it is clear that Nigel feels every bit as silly as he looks.

For just a second I fight the urge to laugh, but actually, this is quite disturbing and not at all funny. 

Two torturous minutes pass before Nigel can stand no more and at last Peter beckons him back to his seat.

It’s very quiet.  The tongue thing seems to have stolen our will to chat.  A melancholy mood hangs over us.  Now I really do feel like that naughty kid in the Head Master’s office.  Peter continues to stare at his computer screen as though hypnotized.   What’s he’s reading, I wonder.  Must be the test results.  Has to be.   What’s the outcome?  Is he going to tell us in a minute?  Surely he is. We’re paying after all.

The silence continues for too long.  I glance at Nigel, willing him to say something.  Ask the question!   He grins at me.   Shrugs his shoulders.  Should I ask?  Is it my place?   No, it should be Nigel.  I remain quiet so as not to disturb the important fellow behind the desk.  I’ve always deferred to authority: doctors, lawyers, teachers and the like.   Today, I hate myself for it.

I can’t stop fidgeting.  I cross and re-cross my legs.  I reach into my handbag and check for messages on my phone.  Three.  ‘What did he say?’ from Craig, ‘Any news?’ from Ellie and, ‘Well?’ from Becky.  I glare, again, at Nigel and  again, he shrugs.  He’s actually starting to look a bit bored. 

I make a big deal of reading the certificates that are hanging around the walls.  How long does it take to become a neurologist?  What makes a person choose that particular specialism?  Wonder where he studied?  Why do I care?

And then,

‘Prepare yourself David, for a barrage of tests … ‘

Oh for goodness sake!  ‘What?  More tests?’  I snap, as agitation overcomes politeness.

‘Why?’ says Nigel, at last.  ‘What are the results of the others?’

Peter adopts a ‘let me explain’ pose and leans forward across his magnificent desk.  Perhaps he is trying to minimize the space between him and us.  Trying to bring us together, somehow.

‘Well, you see, the tests we’ve carried out so far are all about elimination.’

Nigel and I nod, like we understand.  We don’t.  We pretend.  Our faces say, ‘Go on…’

‘I suspect that this has been creeping up on you for some time.  Imagine a cruise liner on the horizon.  It’s just a dot, you can barely see it, but you know it, or something, at least, is there.  Only as it comes closer can you become certain of what it actually is.  These tests can tell us what it is not.’

‘I see,’ says Nigel.

I see too.   But I’m not having it.

Oh no you don’t.  No way is today’s appointment ending here.  No way.  You must have a clue by now.  Even I have my suspicions.  I’ve been on the net, for God’s sake.  I’ve read all there is to read about dysarthria and its causes.  There’s no way, with all your certificates, that you don’t know exactly what this is!

And so I force him to tell us. 

‘But what do think it might be?  You must have some idea?’ 

Of course he does.  It’s written all over his face. 

There is an almost imperceptible sigh, and then a pause, as Peter looks from me, to Nigel, then back to me.

 ‘You have asked …’

It’s clear from his expression that he wishes I hadn’t.

‘ … so I must tell you.’

Peter now focuses solely on Nigel. 

I reach for Nigel’s hand.  He enfolds mine in his and squeezes. 

And we listen, hand in hand, as the neurologist tells us he thinks Nigel has Motor Neurone Disease.

We hear the words, ‘life-limiting’ and ‘no cure’.

We hear that Nigel is going to die.

We sit very still.  We are very quiet.  We really don’t know what to say. 

Moments like this are not at all what you imagine.  There is no warning.  No darkening sky, no rumble of thunder.  The sky is still blue and the sun still shines.  Your heart doesn’t actually miss a beat and the world doesn’t hold its breath.  There is a stark ordinariness about it.   

Everything is exactly the same as it was a moment before.  Absolutely nothing has changed.

And yet, everything has changed. 

Nothing can ever be the same again.