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?