Death has moved in.
It oozes through doors, leaks through the letterbox,
bleeds through brickwork, weeps through windows. It skulks in every corner of every
room. It drips from ceilings and clings
to carpets. It prowls in passages and
shivers in shadows. It lurks in cupboards, the fridge and the
pantry. I see it in the swirl of my
coffee in the morning and taste it as I drain my glass of wine at night. Like a putrid smell, it permeates every part
of the house and, like poison, it contaminates everything it touches.
This intruder, this unwelcome alien, has taken a seat at
our table, declared its intentions and settled down to wait. Nothing any of us can say or do will make it
leave.
It is everywhere.
It besieges Nigel. Consumes
him. Its presence is so profound that
when I look at him that’s all I can see. I see its reflection in the haunted,
frightened eyes of my family. We stare
at Nigel, all of us, eager to retain the image of him whilst he’s strong. Handsome.
Upright. We need to lock that
image deep in our memories. Before he
slowly disappears.
Everybody knows now.
The news, as they say, is out.
It tore through
the family with the destructive force of a tornado. Now, everyone is struggling through the
wreckage the best they can.
Nigel paces so much he’s wearing a groove in the
kitchen floor. He can’t be still. I wonder if he’s trying to escape the demons
from inside his head. If he keeps moving
he’ll hold them off. If he stands still,
they’ll overpower him. And he’ll be
lost.
Craig spends every minute he can with his dad. He’s quite unable to leave him alone for
long. Ellie, like most of us, plunged head
first into the web and emerged utterly devastated. Becky emphatically refuses to look. She’s not ready to know.
Les, Nigel’s brother, calls in every day. He sits at the kitchen table,
bewildered.
‘Are they sure?’ he asks. ‘Could they have got it wrong?’
Mel, unable to speak when she heard the news had to
find the words to tell Tracey in Tenerife and their poor dad, Ron, holidaying there. Their distance makes the news even more unbearable.
‘Thank God Mum
isn’t still with us,’ they say. ‘She
couldn’t have coped with this.’
I’m not so sure.
She wasn’t called ‘Super Doz’ for nothing.
My sister Paula wakes in the middle of the night, inexplicably
surrounded by Quality Street wrappers, and mum’s normally pristine house is
left to gather dust whilst she too uncharacteristically devours chocolate. My dad, who likes to think the world is kind
and just, can’t believe it. It’s not
supposed to be like this.
Family and friends phone to offer us comfort and
support and then phone each other in the hope of finding some for themselves.
The news sits like a boulder in the pit of everybody’s
belly. It’s heavy, cumbersome, and
impossible to get used to.
Why Nigel? How
did this happen?
If I can understand then perhaps I can handle it
better. There must be a reason. There has to be. Yet everything I read tells me that there is
no reason. No cause. No trigger. MND strikes at random. Victims can be old, young, male or female. The only common element seems to be that
most people who contract MND are physically fit and active. Nigel fits the profile. Not only is he fit and active but also as strong
as a horse. Twenty years of scaffolding eight
hours a day is better than any workout in the gym. He plays golf at weekends and rides his bike
every morning before starting work.
Couch potatoes don’t get this.
We know now that the diagnosis of Motor Neurone
Disease is a long and complex process.
The series of tests that eliminate everything else can take months to
carry out and, to make things even more difficult; there is no single,
conclusive test for MND. Well, actually
that’s not true - there is one - an
autopsy.
We’ve been surfing the net. Devouring every scrap of information. Desperate to find something, anything, that
could ease this awful reality. They
really should tell you which websites to study when faced with such a
diagnosis. Most sites seem determined to
terrify you. One of the best, the ‘Motor
Neurone Disease Association’ website, supports you through the nightmare in a
constructive way. It talks about
‘living with MND’, not dying from it. It
even warns you not to click on a link if you don’t want to know the
prognosis. It offers inspiring stories
of fellow sufferers. It offers support
and encouragement.
But it doesn’t offer hope.
Despite that we’ve joined the association. Not a club we’re desperate to be members of
but when you are lost and somebody hands you a map you take it. They’ve sent us a file. It’s worryingly like a welcome pack. It screams:
‘get organized.’ There’s a
section for listing the myriad of medical professionals who will suddenly form
part of our lives; a section for all the equipment Nigel will ultimately need –
stuff we didn’t know existed; a section for communication; one focusing on the
difficulties of eating and drinking and finally, ‘end of life decisions.’ That section is missing. Mistake,
or tact? I wonder.
I shove the file in a cupboard. Not actually ready for that world yet. Maybe later.
We’ve had our first visit from the Hospice nurse.
‘Would you like to come and have look round?’ she
asks.
Er … no.
Not ready for that either.
‘I want to die at home,’ says Nigel as he calmly sips
his tea.
‘Of course,’ she says, making a note, ‘we will help
you with that.’
Are all our conversations going to be this weird from
now on?
In the absence of hope, you look anyway.
I found one story on the net – ‘Eric is winning’. He
claims that total detoxification and masses of vitamins is the key to beating
this appalling disease. He goes so far
as to recommend having all your fillings removed. The mercury, apparently, is not at all good
for you. Whatever he did, it had him
walking again, he says. I’ve bought his
book. I’ve vowed to stock up on
vitamins. I’ll try anything.
MND is a creeping paralysis. Nigel’s muscles will deteriorate until he
can’t move, speak, eat, or breathe. We
don’t know the route it will take. There
is no predictable pattern. Everyone is
different. The websites talk of
‘personal journeys’ like you’re setting off on some kind of holiday. Some people first lose the use of their legs,
some their arms. Others, totally lose
the ability to speak, but can jog around the park for years. Some drop dead before their limbs are
affected at all. It could take as little
as six months or it could take years. More
than fifty percent of people with MND die within fourteen months. Nigel’s lucky then. His prognosis of three to five years is as
good as it gets. Whatever the timescale,
the outcome will most certainly be the same: death.
I’m not sure I can do this. I’ve never been
tested. I’ve had a life free of
tragedy. I’m afraid – pathetically
so. I can’t even say the words ‘Motor
Neu…’ without tears clogging my throat. Unable to perform anything other than basic
functions I’ve got myself signed off from work.
Each day starts like waking from an anesthetic. I feel numb, confused. Familiar things seem unfamiliar. My muddled mind searches for memories of
yesterday - something that can clarify today.
Death, having stolen the space in the bed between Nigel
and me, says, ‘Good morning. Did you
think I was just a dream?’
And then I remember.
I’ve taken to hiding behind the settee. The smallest space I can find. Room only for me. Nothing can hurt me here. Nothing can find me. Just as monsters can’t find you beneath the
duvet, I’m safe. Not even death would
think to look for me here. And anyway,
death is busy. It’s just left - gone to
the pub with Nigel and Craig to watch the rugby. Craig is no fan of rugby and no fan of the
pub either, but the need to be with his dad is greater than what he
dislikes. Perhaps if they do normal
blokey things they can share some special time and keep the killer away a
little longer.
The doorbell rings, but I ignore it. I’ve locked the doors deliberately. I don’t want to see anybody. I want to crouch here, behind the settee, and
press my face into the carpet. I want
the strange and woeful noises that have been smothered deep within me to erupt
at last. My throat can’t hold them
captive any longer. I can’t swallow any
more sobs. I need this time, this hour,
to let it all out. I need to wail.
There’s been a fair bit of wailing these last few
weeks - amongst us women at least. Not
quite akin to Jews at the Wall, or the howling display of grief common in
Islamic and Arabic cultures, or even the keening of the Irish and Scottish, but
a typically English expression of collective grief, following a great deal of
alcohol.
When Nigel and Craig return it will be time for me to regain
control. Time to plant the smile back on
my face, time to pretend that everything is going to be all right. Ellie and Becky will be back by then and
we’ll sit around the kitchen table, eat a takeaway and drink some wine. We’ll drag up long-forgotten family memories,
laugh a lot and probably end up singing Pink Floyd songs, accompanied by Craig
on keyboard, deep into the night. We
will talk about everything except MND.
We will enjoy each other’s company and refuse to allow that intruder to
spoil our time together.
We will be strong.
Like Nigel.
The extent of that strength has surprised even
me. Not a single tear has he shed. Not one outburst of anger, not one indulgent
second of self-pity. No ‘why me,’ ‘poor
me’, ‘life’s not fair.’ Always the realist, he is as accepting of
life’s disappointments as he is grateful for the joys.
‘Everybody gets a kick in the bollocks at some point,’
he says, ‘this is mine.’
He has set about sorting things out. Already some major decisions are made. All
his life he’s wanted an earring but been too macho to admit it. Well, now, he’s having one. A Jag too.
Always fancied one of those. Oh, and a poker trip to Vegas. Why not?
Not too extensive a bucket list by any means. A good start.
Thanks to the support of Glyn, his business partner,
he has decided to give up work. He plans
to play golf every day for as long as he can.
The critical illness claim is in.
A meeting with the accountant is logged the diary. There’s only one agenda item: ‘what happens now?’
He is preparing to face the future the only way he
knows how. Head on. Directly.
I believe he is facing it
bravely, and with heroic resolve. He
disagrees. He says there is nothing
brave about it. He says he simply has no
choice.
In contrast, I have stepped, tentatively, into this unfamiliar
territory. Like walking on quicksand, each
faltering footfall feels perilous. It
is Nigel who guides me, and the rest of us, through these wretched early
days. He is the one holding us in his
arms as we weep. He is the one who can
still make us smile as he cracks impossibly unfunny jokes when each family
member visits for the first time after hearing the news.
‘I’ve just been dying
to see you!’ he quips, when my brothers come.
We laugh, in spite of ourselves, and feel just a tiny
bit better.
After thirty-two years of loving this man I am falling
in love with him all over again. The
journey he is about to embark upon promises to present him with unimaginable challenges. Along the way he can expect to lose the
ability to do everything that he loves to do.
The path he will follow may plunge him to depths of despair that will
test even Nigel’s unconquerable spirit.
The road may lead to intolerable torment and unspeakable suffering.
But wherever this journey takes him, he will not be
alone. I will be by his side.
I will be with him every single step of the way.
