Is it me...?

I’m finally coming round to accepting that I must have a problem.  Not drink – that goes without saying – but another, irritating little personality flaw that is threatening to ruin all my social activities and render them fraught with frustration.

I believe I am not alone.   Many of us, to some degree, suffer from this condition.  Perhaps even you.

Nigel once bought a book in an airport entitled: “Is it me, or is everything shit?”  If that title conjures up a smile, or prompts an understanding nod, then, I’m sorry to say that there is every chance you are already amongst the afflicted.

 

I’d like to think, like all grumpy old men and women, that my particular malady is age-related, but, not so.  I’ve always been this way.  However, it would appear that my disorder surfaces primarily in environments where people gather to eat and drink.

I have long since abandoned the good old cafe as a potential mid-morning meeting spot.  A quick cuppa and a snack in a café never quite did it for me.  There was always something …

… tea too strong, or not strong enough; leaky tea pot; coffee too cold; cup too fat; too much butter on the teacake; not enough butter on the teacake; chairs too hard; too many pushchairs, too many kids; too many grown ups – in fact, too many people!   Yes, I realise that to go to public places and be perturbed the presence of the public might suggest a problem.  

Pubs are off the list too – for eating at least.  (They’re okay for drinking – strangely, I don’t find that at all annoying!)   Bad pictures of food on sticky plastic menus sporting a splodge of hard-baked tomato ketchup just don’t make me feel hungry.  Added to that, if you manage to find a table away from the mind-popping fruit machines, then you are likely to be seated in sight of one of a dozen TVs with god knows who blaring out god knows what.  Or, they could always have the football on!

Anyway, I now opt for the relative serenity of Scarborough’s hotels for my brunch and lunch meets.   But, not surprisingly, given my condition, these trips are not without tension.  Apart from the obligatory presence of a gigantic TV in even the best hotels, there is one particular hotel that has everything going for it:  luxurious and cosy settees arranged in friendly groupings; an inexpensive, leather-bound menu; welcoming and polite staff; easy-listening music that remains in the background unless you’re stupid enough to sit right under the speaker.  (Yes, I have.)  Perfect.  You would think.

But, for some reason, they house the lectern where they file their knives and forks right there in the cosy, quiet, relaxing lounge.  And once our order has been placed and we are trapped, one of those welcoming and polite members of staff feels compelled to inspect every forking knife, fork and spoon the hotel possesses, flinging them back in their receptacle with a flourish, from as far away as possible, pausing only to grab entire handfuls to give them a thoroughly noisy rattling.    Why?

Could it be to see how long it takes for my irritation to turn the milk in my latte sour?  Or, perhaps to encourage me to sod off home?

Well, their encouragement generally works.  And apart from that, the food is remarkably average.

Another hotel, with all the attributes of the former, has its very own Mrs Overall, whose particular compulsion is to bring out her beloved Henry as soon as we are seated, and, despite the extremely large and deserted lounge, focuses her energetic vacuuming entirely around our table.  Why?

It’s not that I actively pursue perfection.  Not at all.   I certainly don’t expect it.  But on the rare occasions when I do encounter it – my outpourings of gratitude border on the positively nauseous.

In spite of the countless imperfections I encounter, I rarely complain.  I’m English after all.  I just sit there, disappointed.

I have though, with age, become more confident in asserting my will.  So, when entering a restaurant and the waiter takes me to a table and says, ‘Is this table okay?’  I often find myself responding, ‘Well, actually, no, it’s not.’  The reasons for this are numerous.  It might be too near the door, or a draught, too close to the man with the very loud voice, too near the open kitchen, too near the loo … and so it goes on …

I have wondered that maybe I should do everybody a favour and stay at home, just give up on the whole thing.  But no.  That would be quitting. 

Still, accepting that it is utterly impossible for any establishment to get a tea or a coffee just right, I will be rescheduling my brunch meetings in favour of lunch, which means we can go straight for the wine.  I mean, you can’t get a glass of Pinot wrong can you?

Well …  I suppose the glass might have lipstick on it, or the wine not sufficiently chilled, or…

Oh dear ... I think it is me!

Dan the Man and poor Mary Ann ...

Fiddling around in my family tree on an otherwise dull Friday afternoon, I came upon a set of my great-great grandparents - Daniel and Mary Ann McLenahan.  Something had brought them from their native Ireland, either together or separately, to settle in Fleetwood, where I assume they were married in 1860.  This assumption is based on the arrival of their first child in 1861.  I’m also guessing they were Catholic.  This less-of-a-guess is based on eleven more bundles of joy bursting onto the scene every eighteen months or so for the next twenty-one years!

12 kids!

I realise that oodles of kids in those days was not unusual, but all other unions amongst my ancestors – even an Irish/Spanish pairing – called it quits at eight.

So, can we place responsibility for this huge family at Catholicism’s alter?  I wonder?   

Perhaps Daniel McLenahan was a pious, sensitive man?   Perhaps he came home from work, gathered his loving and ever-growing family around the table for some nourishing broth, shared a few bible stories and indulged in a spot of hymn singing, while the beautiful and blooming Mary Ann sat busily knitting bootees for gift from God number ten … and eleven … and twelve?  And when all the little ones were tucked up – top and tail - four in a bed, Daniel would reach beneath the sheets for Mary Ann and whisper … “It’s God’s will…”

Or … perhaps not.

As they say in all good detective stories – this doesn’t quite fit the profile.

Daniel McLenahan was a pattern maker in a foundry – a skilled craftsman, a grafter.   Two of his sons were iron moulders – most likely at the same foundry.  He would probably leave for work at dawn, his boots clattering over the cobbles of Fleetwood’s streets.  He would most likely work a twelve-hour shift and then, sweaty and knackered, head for …

… the pub!

“I’ll just give Mary Ann time to get the little ones to bed,” he might have thought, as he downed his first pint.   “Well, the wailers at least.  I mean, six kids under twelve can try the patience of any man.”  Being the considerate type, he would doubtless stay in the pub long enough for Mary Ann to shift the wall of steaming washing from around the fire so he can warm his feet when he gets in, give her chance to rid the house of the stink of mucky nappies.   Get his tea ready.  Tidy up.

Considerate.

And then, more than a few pints later he’d get home, slap a couple of kids round the back of the head, chuck his burnt broth at the wall, and perform his nightly ritual with poor Mary Ann.

Or … perhaps not.   

But there must have been a time when Mary Ann gave up on mourning her lost waistline.  Too tired to care about what was left of her swollen body, scarred with livid, purple stretch-marks, there would have been a point when she let it go straight to hell.  She might even have imagined that if she didn’t bother with how she looked, Daniel might just leave her alone.

For years she might have been too damn tired to find joy in any one of those twelve bundles and when her exhausted body finally gave in, at the age of sixty-four, she might have thanked God, with her final breath, that at last, it was all over.

Or…

They might have been two people doing the best they could.  Just getting on with it, like people did.  They may very well have loved each other completely, and every one of their twelve children may have brought them bucket-loads of joy.  The iron men and women of the McLenahan clan might simply have been hard working, law-abiding, god-fearing, ordinary folk.

Who knows?

But whatever the real story, the widowed Daniel moved in with his other Mary Ann, one of his seven daughters.  For the next fifteen years before his death, at the age of eighty-eight, he just might have been nursing a broken heart.

Quite the man, Dan.

MND - Eight years on

Nigel has been living with Motor Neurone Disease for eight years.   He continues to defy the prognosis he was given of three to five years and, I suspect, will do so for some considerable time yet. 

The first five years of Nigel’s illness, charting his increasing disability, was explored in my blog “Five years ago today” (10 February 2012).  Back then we were still adapting to our changed world.  We had come to terms with the reality of disability and had completely re-evaluated our understanding of the term ‘quality of life’.  We were determined to face the many challenges ahead with resolution and optimism and tried to approach each day with patience rather than frustration.   Nigel’s indomitable character and spirit remained in tact and his zest for life was in no way diminished merely because he was in a wheelchair.

And so, eight years into the disease, perhaps it’s worth taking a look at how things are right now.   

Just the other day Nigel said, “It’s the little things, now, that make me happy.”

Things like his socks being on right; the duvet arranged ‘just so’; his T-Shirt smooth across his back; his legs elevated in his wheelchair at precisely the same height; not too much toothpaste on his brush…

 … the list is long …

Little things.  And yet vast, when these are the things you can’t control.  Nigel’s carers and I have had to learn to get these things exactly right.  Every time.  These little things represent the difference between having a good day or the need for calming medication.  Because when they are not right – like the itch he cannot scratch, it drives him mad.

Motor Neurone Disease is a creeping paralysis.  It strips its victim of the ability to move, speak, eat and breathe - sometimes quickly, sometimes slowly.  Whatever the pace, the outcome is always the same.

There is much now that Nigel can no longer do for himself.  But to dwell on this would be negative and not at all the kind of thing that Nigel would appreciate.  Better then to look at what he can still do, without help.

·      He has the use of his five senses.   Massively underrated on the whole, as most of us breeze through life barely noticing them. 

·      He can think.  Quite possibly the greatest gift of all.   I’m sure Stephen Hawking would recommend it highly. 

·      He can breathe.  Always handy that.   In Nigel’s case, his breathing is supported every night by the use of a ventilator.     

·      He can still swallow, hold his cup, sip his tea through a straw and enjoy the occasional bottle of beer.  Whilst ever he can swallow, he can continue to appreciate the taste of food and drink.

·      He can communicate through speech – but with increasing difficulty and decreasing clarity.   But, most importantly, he can communicate. 

·      He can operate the controls on his wheelchair, recliner chair and profiling bed.   This gives Nigel choice as well as control.  He can choose to turn left or right, sit up, lie back.  We can only understand how precious those choices are once they are taken away.

·      He can operate his iPad and the mouse for his laptop.   These enable him to challenge the actual proportions of his world.  Technology has given him the universe and kept him part of it.  He can connect with family and friends – real and virtual, and spend days absorbed in a huge pile of ‘things to do’.   This gives his life purpose.

·      And finally, he can laugh.  Which he does.   Every single day.

Not a bad list Nigel would say.  Not bad at all.

Of course, the list will shrink.  We know that.   In Nigel’s case, it will shrink slowly.   But ultimately, Nigel may be left with no more than his senses and the ability to think.   This is Motor Neurone Disease. 

Medical intervention could potentially support major functions such as breathing and feeding, but it will be up to Nigel how far he chooses to engage with these.

But we’re not there yet.  That is the future.  Right now we have the present.  We have today.  And there is very little point in moping about today when tomorrow will be worse.

Now, eight years into MND, the mainstay of our lives is to be found in routine and procedure.   The same things are done every day, in the same way.  Nigel and I, and also his carers, have become so fluent in carrying out these procedures it’s almost like dancing.    There are forty-two separate steps in the procedure for getting Nigel to bed.  Every stage, in both order and execution is vital to ensure Nigel’s comfort.  We try hard to get things right, and when we do, we are rewarded with a little kiss on the hand. 

It’s the little things...

Most of the time, you find comfort in the familiarity of routine.  It becomes normal.  It keeps you sane.   But there are times when the very thing that keeps you sane threatens to send you insane.   There are days when the interminable, mind-numbing sameness is too much.  These are the days when frustration triumphs over patience.  Well, in my case at least.

Nigel, however, rarely surrenders to frustration.  Astonishingly, he continues to endure his condition with unceasing good humour.  If a positive attitude could impact on MND, then Nigel would hold the cure.   I can think of only two occasions when Nigel has complained of cabin fever – both during a long winter - a feeling of being imprisoned not only by his body but also the house.  

And even then, he jokes his way out of it, just as he guides me through my darker days.

“It could be a lot worse…” he will say.  And of course he’s right.  It could be a lot better, too, but, essentially, we still have much to be grateful for.

We could live in a dismal little town.  But we don’t.  We live a two-minute walk from one of the most beautiful views in the country.   

We could be skint.  We’re not.  Okay, we can’t enjoy the fun-filled lifestyle together that we used to, but we can make our home as comfortable as we want, we don’t have the stress of work, and we don’t need to worry about paying the bills.

We could be without the support of a wonderful family, but that’s not the case.  We can call on any one of them for anything at all, any time at all.

We could not have the very best of care.  But we have.  Nigel’s carers, one of whom is our daughter Ellie, are the best there is.

Apart from bringing me back from my gloomier moments, Nigel has insisted that my life is peppered with events – days out with family, weekends away, even the odd holiday.  “There’s no point in both of us being in jail,” he says.  This selfless approach to the potentially isolating nature of MND is an indication of Nigel’s strength of character.   Whilst he is forced to endure an ever-shrinking world, he has ensured that I do not.

It was hard at first, to take a step back, to take advantage of a little bit of freedom.  Nigel had had MND for six years before we even considered having help from carers.  And whilst I will never be able to leave my bag of guilt behind, having even the smallest thing to look forward to, is better than nothing at all.

We are all of us constrained by circumstance - whether it’s work, money, health or people.  Few of us have the freedom to make all of the choices we would like.     None of us can determine the direction our lives will take.  None of us can choose our future.  

MND takes you to a place that nobody would choose to be.  It leaves you with very few choices, and the choices you have are stark.

But you can choose how you deal with it.  

There was only ever one choice for Nigel.   He has chosen to enjoy what’s left of his life in any way and every way he can.  Even though he may reach the point where only technology keeps his body alive, mentally, this disease will not beat him. 

He is the strongest, most courageous man I have ever known or, indeed, will ever know.  I am proud to have spent the last forty years with him, and I will treasure every day of the time we have left.   

No matter what the future holds, we will face it together.   And I know that, even on the bad days, we will find a way to cope.

But there is one day that I fear more than any other …

… the day he stops laughing.

Thief in the night

“Ooo an early night…” I thought happily, as I tucked myself in and reached for my Kindle, preparing to re-read the chapter I’d forgotten from the night before.  “… Lovely!   I’ll just have a few minutes.”  

Nigel was settled into the control centre that is his bed -  iPad securely clamped in and accessible; headphones on for listening to the music that invariably wakes me up at 3.00 am; the soft ‘whoosh…whoosh’ of the ventilator providing a passable impression of Darth Vader; tissues close to hand to catch a sudden sneeze; eye-drops for reviving those tired eyes and a couple of sweeties for potentially peckish moments. 

Sleep would be some time off for Nigel as he had to attend to much correspondence on Facebook before getting stuck into a bit of on-line poker.

It wasn’t long before I gave up trying to care about the characters in this book and, like the little dogs, who’d been snuggled up and dreaming doggy dreams for hours, I drifted off to sleep.

The first thing to spook the dogs turned out to be nothing.  But, recognising that their barking was a little more strident than usual, and because I needed the loo anyway, I did a little naked patrol around the house on my way to spend a penny.

One o’ clock and all’s well.  Nigel was still engrossed in his poker game, the dogs were calm once more, and, as everything was now as silent as the softly falling snow, I was back asleep in seconds.  

There was no false alarm the second time.  This time the dogs’ sudden barking was frenzied, hysterical and incessant.  Something was wrong. 

Contrary to what you might expect, I didn’t leap from the bed.  I got up slowly and took the time to put on my jim-jams.  (No sense in being humiliated as well as murdered!)  The dogs’ querulous chorus continued as I joined them in the hallway.

Nigel, oblivious to everything but the next turn of the card, played on.

The first thing to strike me as odd was the tea-light holder and candle on the floor.  What kind of gust of wind could have swept in and lifted that off the shelf I wonder?  I picked it up and noticed that the spare bedroom door was open, and the light on.  I didn’t leave the door open did I?  I never leave the door open.  Don’t want the dogs going in.  And surely I didn’t leave the light on as well?

Had I been watching this on TV I would shake my head in disbelief and say, “You wouldn’t do that would you?  That’s just stupid!”  But, as this was not fiction, and common sense in real life is rare, I walked slowly down the corridor towards the bedroom, and the now quiet dogs, tiptoed along behind me.

Armed with my tea-light holder, I went into the bedroom, not quite sure what I was expecting to see. 

A tray filled with miscellaneous bits of stuff that might come in useful one day was spilled out on the chair.  I didn’t leave that there did I?  Perhaps my brain was still fogged with sleep, because I tried to remember if I had.  I then noticed that the TV was not was where it should be, and the door which leads from the bedroom to the conservatory was open.   

Then I saw the smashed window and the conservatory door open to the elements and the darkness of the garden.

So, like a fool, I went in.

It all happened very quickly after that.  I’m not sure who was the most surprised.  Although why any of us should have been surprised I really can’t imagine, given that it was obvious from the minute the dogs started barking that there was someone in the house and surely intruders expect people to be at home when they intrude?

But, surprised, we were.

“What are you doing?” I demanded, stupidly, as the shape of, what I later described in my statement as a “tallish, broadish” man, loomed before me.  (Should have no problem finding him then, eh?)   Another, smaller shape, completely obscured by the taller, broader shape, was behind him.

Almost choking with fear, and in a voice I could not recognize as my own I yelled, “Get out!  Get out!  Get out!”

And, thankfully, they did.  They got out.  Stumbling through the door, the way they had come, they fled into the night. 

Perhaps it was the power of suggestion?  Or perhaps just a bit of good luck.  But get out they did.  Empty handed.

Right, better see if Nige has finished his poker game.  He’s going to want to know about this.

I was in a bit of a dither as I relayed these events to Nigel and remained in a dither when I asked Paula and Tom to come down from their flat upstairs and also when I phoned the Police. 

The frustration that Nigel feels at being unable to do anything in circumstances like these is unimaginable.  Five years ago he would have strung them up on one of his scaffolds.  He can still, however, be strong for me, by simply being there.  And that is enough to make me feel safe.

The police arrived in a flash.  Patrol cars were searching the area within minutes and a dog team was despatched from York.    Capture is probably unlikely.  A tallish, broadish shape and the back of a head in a blue hoody aren’t all that much to go on to be fair.  They wore gloves, as any self-respecting thief would do, so there are no prints, but, because it had just snowed a little, there were footprints – some of which also bore the unmistakable evidence of dog poo – obligingly left by our two little superheroes.

It was after four when the police finally left.  As sleep was now out of the question, I cleaned the house, made a curry and did the washing.  Like you do.

We later discovered that the thing that first spooked the dogs must have been the thief attempting to break into Paula and Tom’s flat, as clear damage from a screwdriver was evident on the lock.

When something like this happens you inevitably ponder on a number of “what ifs.”

·      What if the dogs hadn’t barked?

·      What if the thieves had come into our bedroom? 

·      What if they hadn’t left when I yelled at them?

·      What if … what if … what if?

Also, because of Nigel’s vulnerability, you can’t help wondering if you were a deliberate target. 

But wondering things like that can send you mad.  So, we will tighten our security where we can, keep some handy ‘even-Julie-can-use-it-weapon’ by the bed, and carry on as normal.

But first, we will treat our superhero little dogs to a big fat bone, and have them measured for a red cape!