Five years ago today

Five years ago today the neurologist told us he suspected that Nigel had Motor Neurone Disease.  His only symptom was slurred speech.  He walked into the surgery convinced his speech problem was stress-related and we left fifteen minutes later with the words “life-limiting”, “no cure”, “nothing we can do” spinning inside our heads. 

Nigel reacted surprisingly calmly that day.  He remained calm even when we discovered the horrific nature of the disease.  MND is relentless and cruel.  The body’s muscles degenerate until the sufferer can’t move, speak, eat or breathe.  50% of people with MND die within 14 months and most die within 5 years.  It would have been very easy to be consumed by fear and misery.  And of course, there are days when you are.

When trying to come to terms with such devastating news it’s impossible not to have some difficult moments.  You grieve for the lives you have lost, the plans you had made and the fact that you won’t grow old together.  I remember having to fight the urge to ram elderly couples in Tesco with my trolley as anger at having been denied our future overwhelmed me.  You rail at the injustice of it all and you fear for the person you love, the pain your children will feel and the impact it will have on the rest of your family.

Remarkably, Nigel has never once bemoaned his fate.  There has been no wallowing in self-pity for him.  No “why me”, “poor me”, “life’s not fair…”.

But then Nigel is a remarkable man.  From the outset he was determined not to ruin the time he had left by whingeing about his lot.  A true poker player – he would play the hand he was dealt.  In fact, he would probably be the first to say that things could have been much worse.  As far as MND goes, he would argue, his journey hasn’t been all that bad.  Well, at least for the first three years. 

He stopped work immediately.  Fortunate enough to have a supportive business partner, he spent the first 12 months of his MND on the golf course.  In between the rounds we managed to slot in a few little holidays and at the end of that first year I too was able to give up work.  Nigel treated himself to some of the things he had always wanted – an earring, a Jag and a poker trip to Vegas.   We did not feel compelled to dash around the world in a panic.  For us, the wonders of the world had lost their wonder.  We couldn’t care less whether we ever saw the pyramids and the cherished “must do before I die” list had become utterly meaningless.

Instead, we drove to southern Spain in our lovely new Jag, rented a fabulous house, and spent seven wonderful months exploring Andalucia.  Like two little kids on an adventure, we’d set out on our bikes after breakfast, head in any direction we fancied and wobble back home eight hours later full of laughter, tapas, gin and tonic and sangria.  Twice a week we’d cycle to school for our Spanish lessons where Nigel’s jokes would invariably reduce both him and our poor teacher to helpless, mirthful tears.  Some might consider it odd to try to learn a language when you have a speech difficulty – but to do so is entirely typical of Nigel.  We played golf, chilled out, welcomed family and friends for holidays and developed a deep and enduring affection for Spain during what turned out to be one of the happiest periods of our lives. 

After Spain, we made the necessary adaptations to our home to accommodate Nigel’s increasing disability.   There were a few more trips away, but as the disease started to bite, holidaying became more torture than pleasure and we packed away our suitcases.

The last two years have seen a gradual but marked deterioration in Nigel’s condition.  Each debilitating development brings new grief.  Each milestone, each new piece of kit, heralds the disease’s tightening grip and you are reminded that this thing is really happening and there is no hiding place.  Incredibly, it’s been Nigel who has helped the rest of us cope.  His positive attitude and generosity of spirit are inspirational - his strength of character, humbling.  There is nothing he can’t make funny, no dark situation he can’t lighten.  He treats each new phase in such a matter of fact and often light-hearted way that you can’t help feeling a little ashamed on those self-indulgent days when all you want to do is crawl behind the settee and cry your heart out.  So, in spite of yourself, you plant a smile on your face, choke back the tears and swallow that lump in your throat.   

We have both been surprised by how much our understanding of the term ‘quality of life’ has changed.  We can remember the horror we felt merely at the thought of Nigel being in a wheelchair, at which point, we imagined, all quality of life would cease.  Not so.  Of course he misses golf, cycling, even work - but it’s not his strength or the use of his body that Nigel misses the most.  He misses the man he used to be.  He misses the banter at the bar, being able to make a quick retort, injecting his effortless and speedy wit into every conversation, being the life and soul of any gathering.  We both miss the people we once were, the life we had, the house full of people, the pub after work and the choice of restaurants any night we fancied.  For Nigel, if MND has robbed him of anything, it’s robbed him of himself.  Coping with disability is easy in comparison.   

 

Life is, of course, very different now.  As previously very busy people, we have learned to take life much more slowly.  We have learned to cherish the simpler things in life – doing the crossword together, watching our favourite programme, looking at the sea, listening to music, reading a book.   Paradoxically, as your world contracts, so it expands, primarily through the networks of Facebook and the Web.  These have become the arenas and vehicles for social interaction.  Nigel can play on-line poker to his heart’s content.  His jokes can reach more friends now than ever before.  His humour, personality and character remain entirely intact and as many people who know him will affirm – he hasn’t changed a bit.   

Consequently, our days are still filled with laughter.  Determined not to be miserable, we have tried to cope with the disease’s progression as resolutely as we can.  We prefer to remain optimistic rather than despondent and try to replace frustration with patience.  Rather than fill our day with anticipation of the next, we have learned not to expect too much from it at all.  As challenging as it is, we try to live for today and not preoccupy ourselves with the future.  When you know your future…when you know the Grim Reaper is sitting on your doorstep – you are in no hurry to open the door and let him in.

There is no doubt that, as Nigel’s journey continues, we will face more challenges, disappointments and even horrors.  And, whilst there may well be a few tears, there’s an awful lot of laughter and hopefully joy left in us yet.  This dreadful disease may attempt to rob Nigel of everything he has, but it will never rob him of his character and his spirit.

Nor will it rob him of my complete and unconditional love.