The lift lobby in the pit of the twenty-one storey,
monolithic, charmless concrete tower of Sheffield’s Royal Hallamshire Hospital is
quiet but for the muted grumbling of people approaching the limit of their endurance.
The overhead lights indicating the proximity or otherwise of
the four lifts tantalise us trapped intolerant folk as we agonise over before which
of these carriages we should congregate, in order to ensure our deliverance to the
floor of our choice – the fifteenth – in our case.
At this point, the lift farthest away from us arrives. Mouth gaping, it spews its cargo into the
crowded vestibule. Harried staff hurry
to their next crisis; a pallid, scrawny young woman cautiously wheels the
intravenous drip cart and weaves her way to the exit to smoke one of the fags
from the packet clutched in her bony hand; visitors, their duty done, head
happily for home and outpatients, some seemingly lost and confused, seek
reassurance from the signs that they are in the right place.
Once again, we miss the opportunity to be swallowed up and
the doors slam shut in our faces.
‘We’ll all be dead before we get a lift,’ I mutter, with my
customary patience.
We have spent so much time at this hospital you would think we
would have mastered the lift scramble by now.
We were advised to come here to see one of the country’s
leading neurologists who could confirm Nigel’s diagnosis and also to
participate in a research trial. Nine
months later, following numerous repetitions of the agonising tests he had
previously suffered, along with a two night stay to enable an excruciating
lumber puncture procedure to be carried out, his diagnosis was indeed
confirmed.
‘Yes, it’s mild MND,’
says the Professor.
Mild? I think.
What does that mean? Is that like
being a little bit pregnant?
‘It’s slow. And it won’t change pace.’
Mild and slow … surely this gives us hope
… we might have longer than we thought.
‘Is the prognosis the
same?’ asks Nigel, speaking the very words that were in my mind.
‘Oh yes. Three to five years,’ she says, completely
crushing the tiny fragment of hope that had dared to grope its way out of the
locked mineshaft from where it had been imprisoned.
It is somehow worse
hearing it for the second time, and from that instant, I hate this place. This
is the place where, finally, all hope vanished.
‘How long might I expect
some quality of life?’ asks Nigel. A
reasonable question. After all, we are
new at this.
The Professor, a
smartly presented, highly intelligent woman with a busy schedule, looks at him,
her slightly pinched face genuinely puzzled.
‘What do you mean?’
she says, unnecessarily brusquely.
Knowledge and
expertise she may have, bedside manner not so.
I can feel myself becoming slightly irritated. She’s just confirmed a grim diagnosis and an
even bleaker prognosis. All the decisions we make from now on will be
based on what she has just said.
Everything Nigel wants to do with the rest of his life he will need to
do in the next three years. It might be
that he is too ill to do anything after two years and we can’t gamble with the possibility
that he will make it to five. Give the
man a break.
‘Well, I don’t know,
maybe when I can expect to be in a wheelchair, that kind of thing,’
‘Impossible to say.’ Brusque,
again. Train to catch?
I’m going off her.
‘Everybody is
different. And you must appreciate that
you can have a perfectly good quality of life even when in a wheelchair.’
We both nod,
ashamed. Of course we appreciate
that. We feel scolded. Embarrassed.
An image of a Paralympic athlete appears in my head but I discard it
just as quickly. MND sufferers are not
athletes. Perhaps we should apologise
for not exactly looking forward to it.
Neither of us knows quite what to say.
If we have any more questions we now lack the confidence to ask them.
She must have seen our
defeated expressions because her demeanour relaxes a little and a smile softens
her face.
‘Do you have
grandchildren?’
‘Yes,’ we answer in
unison.
‘Well then, you can
enjoy watching them when they visit.’
That’s it. I’m off her.
Nigel’s a doer not a watcher.
With nothing left to
discuss, we leave as quickly as we can.
Later, as we share a
bottle of wine at home, Nigel says,
‘So, if it’s slow at
the beginning, it will be slow at the end.
When I’m knackered and can’t move.’
‘Yes,’ I reply, having
drawn the same conclusion and thought of nothing all afternoon but the man with
MND who spent the last year of his life unable to move anything but his
eyebrows.
‘We’d better make the
most of now then,’ says Nigel cheerfully, clinking glasses with a flourish. ‘Bugger it, let’s open another.’
But for now, we remain immersed in the world of motor
neurone disease.
Only recently we attended a meeting hosted by the MND Association
- our first experience of MND up close.
Amongst the partners, carers, speakers and exhibitors were the reason we
were all here – those living with MND.
We sit at our allotted
table somewhat apprehensively. We feel
out of place, different from the rest. Only when Nigel starts to speak do you
realise that all is not well. His body
displays no sign of the disease, yet.
But here, amongst the delegates, the distressing ravages wrought on the body
as the disease advances are clear to see.
An elegant lady, one
of the speakers and herself a victim of MND, circles the room on her mobility
scooter, chatting amiably as she stops at each table.
A young man, couldn’t
have been more than thirty, is breathing due only to the aid of a ventilator
strapped to the back of his wheelchair.
A tube from the machine leading to the mask which half covers his face directs
the pumped air into his lungs to keep him alive.
A lady, her wild,
copper curls almost covering her face, crouches in the huge contraption that is
her wheelchair. It bears countless
attachments, the purposes of which I can but speculate. Her small frame, lost in that apartment of a
chair, has that wasted look, her hands, crooked and atrophied, lay limply in
her lap. But she is smiling.
On the table next to
us, a petite woman holds out the chair for what I assume to be her husband, so
he can take his seat. MND has affected
his arms, both hang uselessly by his sides.
Later, I watch as she carefully feeds him from a spoon. I can’t watch for long. It seems impertinent.
I can’t believe any of
this is going to happen to Nigel. I just
can’t believe it. But we know, without question, that it is.
These people, their
carers and families must have made such an effort to be here. I am full of admiration for them. Perhaps they, like us, came to discover a
little more about the world they now unwillingly inhabit. What was their world before MND? What careers did they follow? What were their hobbies and passions? How much have they lost and how have they
coped? But whilst their lives and bodies
have been devastated by MND their minds are sharp and intact and they remain the
people that they always were. They have
the same likes, loves and irritations that shaped them and made them who they
are. Who they always will be. There is a sense of determination in the
room, an intensity of spirit. MND can’t
take that away.
It is difficult to see
the real person behind the broken body and unintelligible speech, until you too
adopt the guise of the invalid. When you
do, it is humbling.
The presentations take
place and it becomes clear that not one person in the room can hope for a
cure. Not for them. They have been searching for the answer
since the late 1800s and still it is out of reach. The scientists, researchers and medical
professionals know so much and yet so very little. They can tell us exactly what is happening
inside the body, how the motor neurones should function and what happens when
they start to die. But the cause of it
and how to beat this thing continues to mystify the scientific arena. Despite constant fundraising activities, those
trying to unravel the enigma are thwarted by lack of money. The 5000 people who have MND in the UK at any
one time are simply not enough to attract the millions that it will probably
take to develop a cure.
But they won’t stop
trying. And because of them, there is
hope. Hope for others. Hope for the future.
Before leaving, we skirt
the exhibitors and Nigel is particularly interested in a piece of equipment
that has the potential to eradicate everybody’s worst nightmare. Who amongst us doesn’t shudder at the thought
of being unable to wipe our own bum?
Here, with the ability to prolong independence and maintain dignity is a
loo that washes and dries the user. No
need for hands. A simple, but life-enhancing
object.
‘Put that on the
must-have list,’ says Nigel.
At last we emerge from the lift into the Neurology
Department on the fifteenth floor of this gargantuan hospital. This is when you realise you’ve left
something important in the car. But,
thankfully, not today. If I had, I swear
I would take the stairs.
Today’s weather paints the normally vibrant panoramic view
from the waiting area a dismal, dreary grey. It
mirrors my mood. It’s one of those dark
and gloomy days when the sky hovers on the ground and has neither the energy
nor inclination to lift itself up.
‘I wonder if there’ll be a slot in there for me, soon?’
laughs Nigel, pointing to a filing cabinet marked ‘Deceased.’
Only you, I think.
Only you could find that funny.
Still, my mood is lifted a modicum and in spite of myself a smile steals
its way onto my face and stays there.
In the next two hours we should see one of the doctors from
our beloved Professor’s team, who will interview Nigel, examine him and gauge
the progression of the disease. We’ll
then spend time in the clinic with other MND patients where blood tests will be
taken, the same questions asked that were asked last time, the same forms
completed that were completed last time in the hope that by the end of the
research period, this diligent monitoring of the trial drug will determine its
effectiveness in slowing the disease’s advancement.
Participants are being given a measured dose of lithium – a
substance found in batteries.
Imagine if after all this time simply sucking on a battery
could hold the cure!
If only.
As we wait to be seen by the doctor, I recognize the man
being pushed along the corridor in a wheelchair. His name is Matthew. He greets us with a broad smile and a wave as
he passes by. He was walking with a
stick last time we were here.
I wonder if Nigel will make it to the end of this trial
still on his feet? Will the slices of time taken up by hospital
visits from the very limited and precious allocation he has left be worthy of
the sacrifice? Will it make any
difference to MND’s relentless approach?
Who knows?
‘You have to try,’
says Nigel. ‘If you do nothing, you get
nothing.’
And so we will see it through to the end.
But right now this world of MND is suffocating us. We need to be free of it.
Spain beckons.
