Nigel, MND, and me. 3: How to break the news?

And so it begins.    Life with MND.

Funny how you can still behave normally, even though your world is shattered. 

We leave the hospital and call, as planned, at the accountant’s.   Why we call I have no idea.  Following such devastating news, shouldn’t we be doing something else?  But what, exactly?  What are you supposed to do when you have just been told you’re dying?   There are no instructions, no guidelines to prepare you for moments like this - no recognized conventions to lead you through step one, two and three.

Thankfully, John isn’t at his office.  I’m relieved.   I’m not ready to talk to anybody and I can’t imagine that Nigel is. 

We sit in silence in the pub, holding hands.   We must look like one of those married couples that have run out of things to say.   Nigel stares at his pint.  Disbelief swims in his eyes.   My glass of wine grows warm in my hand.

‘Do you want some food?’ he asks, after a while.

I shake my head.  I couldn’t eat a thing.  The lump in my throat is choking me. 

Nigel brushes away a tear from my cheek with his thumb.  The tender gesture prompts more.   He smiles, reassuringly, squeezes and pats my hand.   Both of us are struggling to find the right words - any words – right or otherwise.   I feel awkward, almost nervous.  

‘We’ll be okay,’ Nigel says quietly.  ‘We’ll get through this.’

I nod in agreement, but I’m lying.  I feel as though I’m standing at one end of a collapsed bridge.   I can see the other side, but there is nothing but infinite darkness in-between.  Instinctively, I know I have to move from here to there.   I must somehow get over that void.   The life we know is finished.  It slammed to a stop an hour ago.  To start the next, this strange, frightening new life, I have to find the courage to step into the unknown. 

Nigel has already taken that step.  The numbness has worn off and I can almost hear his mind making plans.  The clenching and unclenching of his jaw signals to me that he’s preparing to take this thing on.   There is going to be a fight. 

I replay in my mind the last hour spent in the consulting room.  

‘How long have I got?’ asks Nigel, getting straight to the point.

‘Three to five years,’ comes the reply.

The self-control that Nigel displays throughout the consultation comes as no surprise.   He’s not a man prone to histrionics.  Having said that, given the nature of the news, even the most theatrical of drama queens would have been stunned into silence.  Neither does it surprise me when Nigel talks about his critical illness insurance policy.  It’s not unusual for money to be amongst his top priorities.  No doubt he is thinking how we would manage if he can’t work.

Mr. Harrop writes a prescription for the only medication on the market for MND.  It extends life by two, possibly three months.   Awesome, I think , feeling wholly unimpressed.  He would be contacting our GP and all appropriate health professionals.  We could expect to hear from a Physiotherapist, Occupational Therapist, Speech Therapist and someone from the Hospice. 

The Hospice?  That’s for dying people.   It can’t be true.  Look at him, my invincible husband, so strong, so fit.  He can’t be dying!

And as if to confirm my belief, Nigel interrupts my reverie, downs his pint and quickly gets to his feet.  ‘Come on, we’d better get back.’  

Glad of the distraction, I follow him to the car.

The car phone is ringing.  We can see on the display that Craig is calling.

‘Don’t answer it!’  I panic - we haven’t yet discussed what to say to the kids.  Too late, Nigel has already pressed answer.

‘Hi Craig.’

‘How’d it go?  Everything alright?’

‘More tests.’ 

‘Bloody-hell.  More?’

‘Yeah.’

‘What are they testing for, for fuck sake?’ 

‘Dunno.  Eliminating stuff.   This ‘n’ that.   No big deal.’

 ‘Mmm.’ Craig sounds unconvinced.  ‘Oh well.   What you doing when you get back?  You off to the pub?’

‘Yes, just setting off now.   We’ll call at the Indigo for one.’

One?   

‘Right, see you tomorrow, then.’

I’m not sure how helpful it is misleading Craig, but at least Nigel has bought us some time. 

So, tomorrow it is.  Everyone will get the news tomorrow.

I don’t know why I imagine that there’s some protocol on who gets bad news first but I decide that we really should make sure the kids know before anybody else.

‘How are we going to tell them?  The kids?’  I ask.

‘We tell them straight.  There’s no other way.  Can’t dress it up to make it any better.’

No surprise there either.  Nigel is a practical, candid, realistic man.   Nobody is ever left in any doubt about what he thinks, says or means.   There is nothing ambiguous about him - a characteristic that can be as infuriating as it is endearing.  

‘Yes I know, but I wish we could do it face to face.’

‘Not possible.’

He doesn’t need to say it - I know it’s impossible.   We haven’t been together as a family since New Year’s Eve.  That’s how it is with one daughter married to a soldier and another in the RAF.  At least Craig and his family live in Scarborough so we can hopefully tell him in person.  I suppose we’re lucky that the girls are even in the country at the moment.

‘We’ll ring them tomorrow.   Then they’ll hear it from us rather than anybody else.’

He’s right of course.  I nod and bite my bottom lip to contain the sob that’s trying to escape. 

‘Don’t worry, they’re not made of glass.’

No.  No they’re not.  They’re much more fragile than that.

If I’m honest, it’s not so much the act of breaking the news that is worrying me the most; it’s the news itself.   I realize, of course, that there is no such thing as a pleasant terminal illness.   How could there be?  But this disease, this MND, makes even doctors shudder.  It is quite possibly as unpleasant as it gets.

I close my eyes and rehearse what to say in my mind.  

‘Motor Neurone Disease?’ they’ll say.  ‘What’s that?’

I doubt they will have heard of it.   It’s rare.  Not like cancer.  Not something you hear about almost every day.

Nigel certainly hadn’t heard of it. 

I saw the puzzled expression on his face following the diagnosis.  That not particularly worried, questioning look as he waited for the Neurologist to explain exactly what this thing is and the recommended treatment plan: 

 - A course of medication, a little operation, a touch of this, a touch of that.  You’ll be right in no time…

 No, of course, he’d never heard of Motor Neurone Disease.

But I had.

And since hearing Mr. Harrop say those three dreadful words, the memory of a documentary I watched years ago has forced its way back into my consciousness and steadfastly refuses to leave. 

I had made a cuppa in anticipation of the programme that I was actually interested in – something senseless like ‘Who wants to be a Millionaire’, and I happened upon that week’s Panorama as I settled down to wait.  I can hear again the thoughts that flooded my mind, as I was held, captivated, by those images, as clearly as if they were being screened in front of me right now.

She’s only slight  - just a tiny little thing.  Looks a bit odd. Kind of crooked. 

They seem to be making a job and a half of getting her out of that chair.   She can’t be heavy can she?  Two of them – struggling with her.  Hope they’re not hurting her.  She’s a dead weight.  Can’t help them.  She can’t move.  Must be like she’s made of lead.  Just look at her, poor thing. You’d think there’d be some kind of lifting equipment for people like this.  Surely?

Oh, what was that awful noise?  Is she speaking?  My God, she sounds like a trapped animal wailing in fright.  I’ve never heard such an agonisingly pitiful noise.   The desperate woman must be brain damaged.  Got to be.  I’m amazed they can understand her at all. 

She must be in pain.  Listen to her! 

Oh I can’t watch.  This is shocking.  She’s drooling.  But that must be her husband.  How lovely – how tenderly he’s wiping the drool from her lips. He must love her so much.   This is heart breaking.

She must have had a stroke.  Definitely.   Must have.  

Ah, no, not a stroke, … Motor Neurone Disease. 

Whatever that is. 

I see … extremely rare, apparently.  Of course! – That’s the Steven Hawking thing isn’t it?

Wonder how old she is?  Fiftyish?  She looks so very, very tired.

Just look at the poor buggers. 

She wants to die.  Been campaigning for months.  Wants to die with dignity, at home.  She wants this misery to stop.

Hell, you can’t blame her.  Who wouldn’t?   State she’s in.    I would.  Unbearable.

She wants a doctor to be able to help her, but the courts won’t allow it. 

Bastards.

What must it be like to suffer like that?  Can’t begin to imagine it.  The entire family must be devastated.  Poor wretches.

Thank God this kind of thing only happens to other people.

 - Not people like us.

I remember the horror I felt at the awful sound she made as she tried to speak.  It haunts me still.   I remember that feeling of unease mixed with overwhelming pity as I witnessed such a profoundly personal tragedy.  But, now, mostly, I am filled with shame.  How could I sit there, waiting for some ridiculous programme, utterly convinced that the helplessness and despair unfolding before my eyes was the kind of suffering experienced only by others? 

Only happens to other people, I’d thought.  Not people like us.  Nothing like that could ever happen to us.

But it can.  It is.

It is happening to us. 

It’s happening to Nigel.

I look at Nigel as he drives.  His handsome face, concentrating on the road.  His hands, gripping the steering wheel just as lightly as necessary.  He drives smoothly, swiftly,  competently.  How long before he can no longer drive?  How long before he can’t walk?  Can’t move?  Can’t actually do anything?   How much time have we got before his body becomes useless, withered and utterly destroyed by this disease?

How long before Nigel’s speech is displaced by those haunting, anguished, unintelligible sounds? 

And will he, like the pitiable woman in the programme, reach the point where his torment is so intolerable that he longs for death?  Will he be able to make the choices that she was denied?  

An hour ago our greatest concern was what we might choose for lunch.

Could it really be true that, now, this is our future?

Yes, it could. 

So … how do we tell the kids?

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.