The "eyes" have it...

The deed is done.   The plunge has been taken.  Caution has been thrown to the wind.  I have reached deep into Nigel’s pocket and had my eyes done!    

The consultation was detailed and thorough.  As you would expect, there were the obvious sight tests followed by numerous scans and measurements taken of the shape, thickness and general health of my eyeballs and cornea.  My enthusiastic optometrist treated me to vivid explanations of how the eyes deteriorate with age and how laser eye surgery corrects this.  He would have gleefully illustrated the entire procedure in explicit and graphic detail had I not stopped him – his idea of simple being my idea of gruesome.  Preferring to remain in the familiar comfort of blissful ignorance I requested that he focus on the anticipated destination rather than the route. 

I was advised that the best treatment for me would be monovision, where one eye was corrected for close work, the other for distance.  This, I was informed, would take a little while to get used to but, essentially, I would no longer need reading glasses and 20:20 vision would be restored.    Now that was what I wanted to hear!

The period between consultation and operation was a mere week.  That paltry week dragged like an eternity as I wrestled with a gamut of exhausting emotions ranging from moderate excitement to paralysing fear.  I lay awake at night, tortured with terror and trepidation, trying to convince myself that the nice people wouldn’t blind me.  I became racked with self-doubt and indecision and was ultimately overwhelmed by that feeling of isolation and helplessness having reached the point of no return – I had paid.  

On the day of surgery, I tried to retain a cheerful and confident countenance even as I signed the six-page consent form that effectively absolved them of all responsibility and gave them permission to gouge out my eyes and feed them to the nearest passing dog.  I fought the desire to run for the door and lied through smiling teeth when asked by the friendly receptionist how I was feeling.

I have no idea why I was surprised when I was taken into a room that looked like an operating theatre and saw a team of people dressed in surgical garb.  Laser eye surgery is surgery after all.   Despite the niggling worry that I may be sacrificing my sight to a complete stranger, the surgeon immediately inspired me with confidence.   I followed instructions and did exactly as commanded.  I found myself chattering away without a care in the world as if having your head gripped in a vice and your eyes clamped wide open was perfectly normal behaviour.  It has to be said that at the point when the surgeon says “no sudden movements” you find yourself praying to any god that will listen.  Whilst the smell of burning was ever so slightly disconcerting, the whole operation was over in no time.  Well, six seconds for one eye, four seconds for the other to be precise.

Needless to say I was positively giddy with relief when I realised that I was still blessed with sight!  Immediately after surgery my vision was slightly cloudy and my eyes felt a little prickly.  I felt in need of a little TLC for a day or so but managed to cope without it!   As predicted, the monovision procedure means that the eyes vie for supremacy for a while, until the brain becomes bored of the battle and your long and short vision adjust to being nothing short of perfect!

I don’t think I will miss the pilgrimages to the £1 shop to collect bucket loads of specs of every conceivable colour to match every conceivable outfit.  Specs to adorn every surface in every room, to nestle in every single drawer, to sit inside every single handbag, to perch precariously on the end of my nose and, of course, to park permanently on top of my head.

I can now look with pity on poor bespectacled souls as they scratch about in the depths of their purses desperately trying to distinguish one ridiculously small coin from another.  Now, instead of some passing youngster, I can be the valiant rescuer and smugly point out that they are clutching pennies as opposed to five-pennies and, just in case they’re interested, would they care to know the dates inscribed on them?

Gone are the days when I return from the supermarket having bought borlotti beans instead of baked, paprika instead of pepper and sardines instead of salmon.  No longer will I be required to take serious financial risks as I buy things whose prices I cannot see and no more will I be obliged to abort any spec-less activity because I can’t see, hear or even think without them!

Instead, I will be ferocious in my eagerness to be the first to get the menu and regale fellow diners of the delicacies detailed thereupon.  I will strut about the house wafting the newspaper, feigning interest as I read any small-print article, simply because I can.  I will file all the herbs and spices in my pantry not only alphabetically, but also, now that I know it’s actually on there, in ‘use by date’ order.  For the first time in years I will read the instructions for everything and rediscover the fascinating facts that adorn the backs of cereal packets.

I must say, however, that despite my obvious joy at my new-found sight … there are one or two unexpected drawbacks.  I have discovered that my house is filthy!  I can see muck in places where I didn’t even know there were places.  And, most horrifying of all, I can now see wrinkles on my face that I swear weren’t there before!

Needless to say, my X-10 magnifying make-up mirror has been confined to the bin and the number one spot on my ‘must do’ list has a new occupant …

….  A facelift!

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.

Xin Nian Kuai Le! (Or, Happy New Year if you're Chinese.)

There are very few places to eat on a Monday night in Scarborough, so a Chinese restaurant seemed an obvious choice for an evening out with my old workmates Lynne and Mary.

When I phoned to book I was informed that it was the Chinese New Year and there was a special banquet menu to choose from.  I should have put the phone down right there and then and gone for an Indian, but, on sensing my hesitation, the restaurateur quickly added that we could also choose from the standard menu.  Fair enough I thought, our choices won't be pre-defined, so I went ahead and booked.

Mary and I arrived a little early and waited in the bar area for Lynne.  Is it unreasonable, do you suppose, to order a drink whilst waiting in the bar?  No, that's what Mary and I thought too.  So I trotted along and approached the young English chap behind the bar and asked for a bottle of Pinot Grigio and a half bottle of Merlot.  You would have thought I'd asked him to slice me off a piece of the moon!  "I have no idea what that is!" he wailed, gawping at me with a confused and vacant expression on his face.  Somewhat dumbstruck I helpfully pointed to the items on the wine list, assuming that he could at least read and write.  Thankfully, the situation was rescued by one of the waiters and the 'barman' explained that he'd only worked here a week - perhaps imagining that that was an acceptable excuse for his incompetence.  To be fair, it was management's fault really.  When they put the poor guy behind the bar they should have warned him that there was a danger of somebody asking for a drink!

Lynne had arrived by now and the evening began in earnest.  I suppose we should have read the signs, perhaps been a little more observant, taken a bit more notice of our surroundings...but we were too busy catching up on gossip.  As it was, the restaurant was surprisingly busy.  The waiters were dressed in brightly coloured silk shirts and there was an anticipatory buzz in the air.  Maybe there will be dancing dragons at midnight, we mused.

Presently we were escorted to our table.  Passing many happy diners along the way, we were eventually placed in the farthest, deepest, darkest, draughtiest corner of the restaurant, almost in a spare room.  Perhaps this is where grumpy old women who don't want the banquet menu get to sit, I thought.  Little did we know that, before long, we would be immensely grateful for that table.

The party mood must have infected Mary because she suggested we look at the banquet menu.  We did.  There was a heavy, palpable silence, followed by desperate, darting glances in search of a means of escape, then the awful realisation that it was too late - we were trapped!  "Oh God!  No!" we groaned in horror as we read:

"Chinese New Year Banquet
Karaoke from 8.30 pm
Quiz
Raffle"


That explained it!  The happy diners, the sense of nervous apprehension as the would-be singing stars prepared themselves for their big moment; the expectant buzz of the quiz competitors in anticipation of glory and the promise of great prizes prompting the avid purchasing of raffle tickets.  There was no escape. Our helpful sloth from the bar had already delivered the wine.  We were going to be treated to a Chinese version of the "Wheeltappers and Shunters Club!"

We deliberately shunned the banquet menu and ordered from the menu for grumpy old women in the corner.  I'm always a little worried when they don't shred the crispy duck at the table.  It looked more grated than shredded and could easily have been swept up from under the fridge.  But it tasted better than it looked and as the wine was flowing nicely we'd decided that there was no other choice than to make the best of it.  We consoled ourselves that it was likely to be some time before the singing started as surely people would wait until they were drunk!

Not a bit of it.  Half past eight, on the dot, up gets the first budding popstar.  Before long the entire restaurant was swaying over their noodles in time to "Welcome Home..." and "The Road is Long..." We were treated to something unrecognisable from a group of ladies from Leeds and entertained by the odd Buddy Holly and Elton John.  At least nobody attempted Freddy Mercury!  There was a break from the performance whilst the quiz got underway and the competitors were positively belligerent in their zeal to be victors.  Despite our disappointment at the lack of dancing dragons, and the fact that we couldn't stay for the raffle, we did at least learn how to say Happy New Year in Chinese.

When we asked for the bill there was immense confusion over what we'd had to drink.  Our inimitable barman had "gone" we were told.  All got too much for him I suspect!

All in all, apart from the venue, the table, the food, the dodgy entertainment and the staff, we had a fabulous evening.  We haven't laughed quite so much in a long time and that, along with the wine of course, proved more than a little intoxicating.

So Lynne and Mary, thanks for a great night out.

Can we try Italian next time...?

Resolve or not to resolve?

Now that Xmas has been and gone it’s time to reflect on the year that’s almost over and look forward to the one that’s about to start.  That’s a perfectly normal and thoughtful thing to do and that’s as it should be.  Why then can’t we just leave it at that?  Why must we insist on cocking up the New Year before it even starts by setting ourselves unachievable goals in the form of New Year’s Resolutions?  Most of us have, at some point, fallen prey to the temptation of torturing ourselves with targets.  Again and again and again!

The top 10 impossible-to-keep resolutions that crop up year after year are generally concerned with stopping or starting something.  ‘Stop smoking’; stop drinking’; ‘stop swearing’; ‘stop eating so much’. ... All very negative don’t you think?   No wonder we’re all depressed before the year has even begun!   Even thinking about putting a stop to those deeply ingrained vices that have taken decades to cultivate is enough to make anybody miserable.   

On the ‘start’ side there’s invariably the ‘start exercising’; ‘join a gym’; ‘start another diet’ and for some strange reason - ‘start being nicer to people’!  What’s that one about I wonder?  Unless we resolve to do otherwise, do we normally set out to be horrible to people?  Having said that, we’re bound to be horrible to everybody – given the suffering we’re enduring as a result of the self-imposed denial of everything we love so much!  

Nobody will be surprised to learn that only 12% of people actually manage to stick to their resolutions.  How smug that little gang must be!  The rest of us, the remaining 88%, are doomed to failure.  Hardly surprising either then is it that February is such a miserable month?  By then the entire population is shrouded in a cloud of despondency and despair and the kind of self-loathing associated only with abject failures!  

So, unless you are 100 percent confident that there’s a place reserved for you in the elitist “12 Percenters”, then perhaps it’s time to put a stop to all this.   

Let’s consider our options. -

If we are positively determined not to be a failure then we can resolve to do absolutely nothing at all.    Start nothing; stop nothing.  Easy!

Perhaps too easy?  Is that too much of a cop out?  By not making any kind of resolution are we declaring ourselves already perfect, or are we so fearful of failure that we won’t even rise to the challenge?  Either way, the danger of beating ourselves up remains.

To avoid this completely we must make it our business to change the nature of these resolutions to something that not only can we keep, but also actively achieve. 

How about...

·         Join a wine club

·         Save for a face lift

·         Chuck away the specs and get my eyes done

·         Try out a new restaurant at least once a month

·         Cook and eat every single thing in the ‘Good Food’ magazine

·         Drink only champagne on Fridays... and Saturdays....and...

·         Treat myself to a new pair of shoes every month

·         Keep a diary of the all the fun things I’m getting up to...

Well that’s a bit more like it!  With that kind of happy list we could even inadvertently hit the ‘be nicer to people’ one. 

So whatever you decide, whether you resolve to resolve or resolve not to resolve or resolve to make yourself a happy list...

... Have a very very Happy New Year!

The Treadmill won't work if you just sleep next to it!

Haven’t we all done it at least once?  Haven’t we all been tempted at some point in our lives to buy a piece of exercise equipment in a desperate bid to get fit?     Well, I am no exception. I am now the owner of a glorious treadmill that stands proudly beside my bed like a sentry on duty. 

I have tried the gym, but I’m not a fan.  I’m not even a fan of exercise.  I really wish I was.  I wish I liked it even a teeny little bit!  I’m so envious of those people who exercise with passion and fervour and actually enjoy it.  And then there are those even more amazing self-disciplined people who don’t particularly enjoy exercising but do it anyway!  These people think nothing of pounding the treadmill for at least an hour at a time and easily clock up 50k a week.   For my shame, my entire family seems to fit somewhere into these two categories, all of whom think nothing to running the Great North Run every year, and do so seemingly effortlessly. 

Well, determined not to be the family laggard, the order for my treadmill was placed.  Bursting with enthusiasm and, like the road to hell - brimful of good intentions, I awaited its arrival with eager anticipation.  I even dashed out and bought the ‘gear’ which I’ve since decided is far too nice to get all sweaty in, so I keep that for when I’m not exercising!

My confidence did not diminish on its arrival.  I started slowly – walking not running, building up nicely to 3k, then 4k, maybe pushing myself to 5k on the odd occasion.  As a result of all this I would float around the house for the rest of the day basking in the reflective glow from my halo, dreaming of the odd half marathon that would soon be within reach...

Then I’m not quite sure what happened.  

Whilst my treadmill is not yet masquerading as a clothes horse buried beneath hordes of dressing gowns, neither is it as busy as it once was.   Nigel, who has a habit of being annoyingly right, finally said, “The treadmill won’t work if you just sleep next to it you know!”

In a very short time this inanimate object has developed some rather disturbing characteristics.  As the first thing I see when I open my eyes every morning it greets me like an eager little puppy and pleads, “Are we going for a walk today...?”   I have developed many excuses for not going for that walk, all of them feeble and pathetic.  Whilst I pretend to look busy and grapple with my conscience it begins to look less like that cute little puppy and more like an admonishing headmaster shaking his head in disgust.  I swear I can hear it tutting!

I seem to have brought the personification of ‘guilt’ into our home and now spend my days trying to justify myself! 

Don’t get me wrong, we’re still friends.  I haven’t given up on it yet.  Maybe our relationship would improve if I were to give it a name?   Make it a bit more of a friend?  How about Trevor?  

Trevor the Treadmill .... well, it has a certain ring to it!

Let's hear it for the NHS!

I realise that to lavish praise on the NHS is not a popular concept.  Indeed, it may even be unheard of.   We’re much more accustomed to the horror stories – and we all have at least one – regaling the ineptitude, incompetence, and negligence of that organisation and all who have the misfortune to work within it.  These are the stories on which our opinions are based.  They don’t even have to be ‘our’ stories, recounting our personal experiences – anybody’s tale of woe is usually sufficient to bring about our wholesale condemnation of that pitiful institution. 

Sometimes, however, I believe our rock solid, immovable judgements might be just a little ill-informed.   Sometimes it’s worth looking at the good things for a change and therefore taking a more balanced view.

Over the last few years, Nigel and I have gained insight into a network of professional health care and support that, whether accessed directly by us or co-ordinated via the Hospice, has operated seamlessly and without mishap.   

As the complexity of Nigel’s need has increased, so has the degree of support and provision of life-enhancing equipment.    We have benefited from the provision of a walker; a powered indoor wheelchair; a medical profiling bed; a shower chair; ventilator;  cough-assist machine and lifting hoist.   Over the next few weeks, thanks to the wizardry of computerisation, Nigel will be able, at the slightest touch of a button, to operate his bed and riser/recliner chair; open a locked door having assessed the caller through pre-recorded questioning; operate the TV, table lamps and make telephone calls on a hands-free phone.  We’ve had nothing to wait for and nothing to pay for and at every stage we’ve received training and ongoing support at home. 

In every case, we have been treated with consideration and respect and, whilst your heart might sink as the next piece of kit comes through the door, it brings with it dignity, independence and control.  Not to mention prolonged sanity.

A cynic might argue that this is just the NHS’ way of making us do all the work.  I would heartily disagree with that.  Enabling care to be carried out at home must be a more difficult and complex strategy for the NHS to pursue than any other.  I’m sure it would be much cheaper and much easier to condemn people to soulless institutions to be cared for by indifferent strangers; where the expensive equipment can be shared amongst many and where dignity and empathy don’t feature in the mission statement.

I would hate to be the one responsible for balancing the NHS’ books or to even venture close to that political quagmire.  But somebody has to allocate the budgets and make the financial decisions. 

I fervently hope that the NHS continues to make decisions based on compassion rather than cost.

Be free of your wardrobes!

In a bid to create more space in our bedroom for Nigel’s ever-increasing pieces of kit, we have ripped out the fitted wardrobes and reclaimed not only lots more space, but also the fabulous parquet floor that lay buried beneath the carpet.   Both space and floor now provide Nige with the perfect arena for practising his wheelies!

Being a bloke, Nigel’s gear was instantly dismissed as a non-issue, but obviously I was faced with the dilemma of how to decant all my paraphernalia into one measly wardrobe and two wholly inadequate shelves located in the spare room.  Impossible?  Ludicrous?  Beggars belief?

Not a bit of it!

I have been ruthless in the extreme.  I feel liberated, empowered, triumphant...even a teeny bit smug!

No longer am I held hostage by armies of clothes stationed in my wardrobe for no other purpose than to mock me.   No longer do I harbour those garments labelled:  ‘for when I lose a bit of weight...’  Equally, there is no refuge for those filed in the ‘in case I put weight on’ section.   Furthermore, all those items that have been waiting for me to suddenly look ten years younger so that they may once again adorn my person, have been well and truly axed.

I have banished without mercy those items of clothing spared in previous evictions simply because they were ‘nice’; ‘smart’; ‘expensive’; ‘worn only once in the last five years’; ‘never worn at all in the last ten...’.

I have finally got rid of all the fashion victim stuff I never liked anyway but didn’t want to admit to the stupidity of buying in the first place.  Out has gone the stuff that I even quite like but has nothing to partner it.  And no longer do I have shoes that hurt!

Not surprisingly my remaining attire fits easily into one robe and two shelves.  These clothes hang proudly like the chosen few - the elite, the special, the survivors!    I have regained power over my wardrobe and rid myself of the agony of gazing upon clothes I adore but look bloody awful in.   Now when I open my wardrobe door my clothes greet me like old, dependable, but perhaps uninspiring friends.  We’re at ease with each other.  I am not challenged to prise my person into anything inappropriate.  I know I won’t spend the day in pain; be forced to adopt a peculiar posture, or be obliged to hold my breath for hours on end.  

There is a compromise to be made of course.  As a result of my purge I don’t expect to waltz down the catwalk like a red-hot diva but I can at least expect some degree of comfort, I can expect to look reasonably ‘OK’, and unfortunately, a little bit dull !

Now, what on earth am I going to wear....?