A few weeks ago, quite without warning, Nigel said, “Don’t forget me,
will you?”
Now, admittedly, he could have simply been a little worried that, as
I’d just parked him on the loo, I might pop upstairs, indulge in a glass or two
with my sister Paula, get slightly pissed and forget he was sitting there. Or, as I suspect was the case, he could have
meant … don’t forget me. Don’t forget
the real me. Don’t forget how I used to
be.
Whatever he meant, it got me thinking.
It is, of course, inconceivable that I could forget him. But I do understand how easy it could be for
some. Our grandchildren, because of
their youth, must have already forgotten how things used to be. Our granddaughters especially, being that
little bit younger may, even now, believe that their granddad always had a
wheelchair and a strange, somewhat scary voice.
Our grandsons can probably still remember sharing more sporty activities,
but time will steal their memories just as surely as it will steal their
granddad.
The inherent characteristics that define any progressive illness mean
that forgetting is all too probable. A
disease like MND gnaws away at you slowly.
A little bit more of you disappears every day. As your abilities evaporate, along with the
morning mist, so too does your sense of self. Like a victim pursued by a relentless stalker,
the person you once were begins to hide.
It is immensely difficult for your personality to remain in tact when
each new day wakes you with new loss.
One day you can hold your cup, the next you can’t. One day you can stand, the next you
can’t. One day you can walk one step,
the next, you can’t. One day you can
breathe, the next you can’t. Everything
that you can do and everything that you love to do is taken from you. Bit by bit by bit.
And it doesn’t stop there. As
your physical abilities abandon you the disease seeps into your soul and tries
to claim your spirit. Hope is the first
to depart. Without hope, it’s not too difficult
to see how your natural optimism, humour and sense of fun could begin to fade -
as frustration, fear, disappointment and despair become your constant
companions.
You can understand how tempting it must be, as you are forced to adopt
the clumsy, ill-fitting guise of the invalid, to withdraw to a place that is
safe and unchallenging. A place that
doesn’t ask too much of you, doesn’t expect you to fight to hang onto the
person you used to be and doesn’t want you to do, say or think much at
all. It must be easier to shrink into
the seclusion of the shadows and seek refuge in the unfamiliar and yet
strangely comforting fog of invisibility, than it is to battle incessantly with
an enemy that you simply cannot beat. But
the deeper you retreat into the fog, the harder it is for others to see
you. The harder it is to remember.
Thankfully, Nigel, you haven’t vanished into that fog. You have not allowed yourself to be swathed
within its shroud and I haven’t lost you yet.
When you were diagnosed with MND at the age of 52, we didn’t expect to
be able to say “Happy 58th Birthday”. But here we are. In spite of the fact that we are confined in
this awful place, we’re still happy. We
have each other. You still have me. I
still have you. And I can still see you.
For my shame I can’t remember how your voice used to sound before MND retuned
it. But there are lots of things I will
always remember and lots that I’ll never forget.
I’ll never forget our first date.
How the butterflies leapt in my stomach as we held hands on the
bus. How we both wore brown suits and
how giddy I felt because we kind of ‘matched’.
I’ll never forget the first time we stayed up all night and greeted
the dawn by walking in the long grass, wet with the morning dew. Everybody should walk in the long grass at
least once.
I remember how we fretted when we took that bank loan to get your
business started and how hard you worked to become established. We needn’t have worried. There are very few buildings left in
Scarborough that have not been adorned with your scaffolding.
I can’t stop myself from smiling as I remember how proud I used to
feel when I’d see you swing like an ape from the scaffold. At 50’ high, you’d hang upside down, leap
from lift to lift like a mountain goat and throw heavy boards around with such
ease and precision that you’d think they were archer’s arrows.
Neither will I forget you and Stivvy showing your bare arses on stage
in the nightclub for no other reason than it made you laugh. Equally unforgettable are the countless
nights you’d come home from work, half naked, having had the clothes torn from
your person in the pub, because that was fun too!
And while we’re on with nakedness and bare arses…exactly why did you
drag me out of bed that night and chuck me out on the street with not a stitch
on?
Like everybody else, we’ve had our battles and I won’t forget those
infrequent but important ‘walks and talks’.
I will always remember how you would sit facing the door of any pub or
restaurant or indeed any room that we happened to find ourselves in. There you would be, sword arm free, ready for
action - just in case marauding villains invaded our space and you had to save
us all. I always knew I’d be safe. You
never left any room in second place.
How vivid are the memories of those nights when no microphone could be
left unguarded. Long before Karaoke was
invented, you would steal the mike from the poor innocent DJ and lead the
audience in hearty and heartfelt renditions of army and rugby songs whether they
liked it or not.
You must remember every Saturday afternoon when the house throbbed
with the vibrant strains of your favourite music and how you quite unwittingly
nurtured in our children a deep and everlasting appreciation of Pink Floyd.
And how could I forget those magical mornings as we welcomed the
sunrise whilst sitting on the Esplanade sipping champagne?
So, no, I won’t forget how you used to be. How you still are. I won’t forget a single day of the time we’ve
had together. Whilst MND might have
stolen our future it hasn’t touched our past.
No matter how much this disease tries to cloak you in its disguise, the
real you will never become invisible to me.
But there are certain things that I can forget…
I can forget that you are dying when I see the devil dancing in your
eyes. I can forget to be gloomy when we
can still giggle and forget to feel forlorn when the house is filled with
family. I can forget to be mournful of
what might have been and I can forget to yearn for yesterday when we still have
today. We still have now.
Let’s
remember that.
