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!

So, why no blogs?

Here I am, enjoying one of those rare moments when I have nothing much to do and, surprisingly, nothing much to plan for …  quietly wondering if my poor liver will survive another month … when it occurs to me that I haven’t blogged for a while. 

What an unfortunate term that is – ‘blogged.’  Is there a verb ‘to blog?’  Yes there is, I’ve just checked.  So here I am blogging, and once finished, I will have blogged.  Mmmm … sounds gross!  I can hear the conversation now -

“I’ve just blogged…” 

“Oh dear, try not to worry about it…”

Anyway, so, why no blogs for a while? 

I can’t adopt a ‘poor me’ expression and say, “well nothing ever happens worth talking about,” because that is such a lie!  The truth is that, with one exception, I’ve been caught up in a plethora of parties, a torrent of terrific trysts so time consuming that I have been rendered blog-less.  

Let me explain …

February saw the first ‘do’.  My brother Nigel’s fiftieth, hosted by my sister Paula and me.  A fairly modest little bash, catering for around thirty people.  All events in my family – no matter how small - demand many, many hours of planning.  And, obviously, you can’t plan without wine.  Lots of wine.  Can you?  Well, apart from the losing battle with my underwear, (see previous blog) this little ‘do’ passed without incident.

Then came March’s do – Tom’s seventieth.   This had been a full twelve months in the planning and all seventy – coincidentally - guests had been sworn to secrecy.  Poor Tom must have wondered why his big birthday was being utterly ignored, when a simple Friday is usually grounds enough for a bit of a celebration.   This do smacked of a covert military operation and Paula was in total command.  Performers of global renown had been secured via their agent a year in advance and at great expense.   The hotel was booked; table plans done, menus decided.  Even the posh frock was hiding in the wardrobe.  Sorted.

What could possibly go wrong?

And then came the phone call.

“Sorry, we’re triple booked.  We can’t accommodate you,” said the very brave hotel receptionist.

With murder in mind, I accompanied Paula to a meeting with the Manager.  Death threats proved ineffective, demands for compensation fell on deaf ears, and swearing that would shock the most seasoned soldier failed to intimidate this excuse of an hotelier, but at least it helped expel the tiniest bit of rage.

Dilemma!  A few weeks to the do of the century and no venue!

A thousand phone calls and as many wine bottles later, we discovered that there were only two venues available in the whole of Scarborough.  One pathetic offering - a shabby, draughty old function room at the Spa, where only the dirt came free, was instantly dismissed.   But the last  - our final hope - was perfect!  Far superior, far classier, and far more worthy of posh frocks than the original venue.  Within days the whole operation had been re-planned. 

 And still Tom had no clue.

The secret was kept right up to the point when Tom’s guests leapt from their hiding places and he was surprised again when his favourite performers, Paul Jones (think Manfred Mann) and Dave Kelly came on and wowed us all. 

So March marched on to April…

A perfect little pyjama party proved precisely the right prelude to Mel’s forthcoming wedding and we four hens clucked our way to Mel’s Newcastle home to indulge in girlie gossip, guilt-free grub and bucket-loads of beauty babble washed down with barrel-loads of booze.  Thanks to the wearing of jim-jams we didn’t have to suffer the indignities brought about by suffocating underwear or the agony of ill-fitting shoes.  The only pain we endured was the mild morning hangover that denotes a damn good do.  Just as it should be!

The merry month of May hosted Mel and Derek’s magnificent wedding.  A superb and lavish occasion made extra special by their chosen themes:  popular music to reflect their passion and a black and white colour scheme to echo their exquisite taste.    The magical mix of Geordies and Tykes made for a truly memorable day -  well, that is, the bits of it I can actually remember!

Of course all ‘dos’ away from home are tinged with sadness because Nigel can’t attend, and missing his sister’s wedding was particularly hard.  His illness now means he is confined to the house where, with the help of his carers, he can access his equipment.  Being away from home for any length of time is now too difficult and too stressful. 

As May merged into June, Nigel’s sister Tracey came to visit.  Both our birthdays are in June, and so, there followed a week of …  yes, well, you know the script by now!

Once July arrived you would have thought there would be some respite and I could take a break from all this fun?  Not a bit of it.  Paula and I took ourselves off for a weekend with Becky and indulged once more in gossip, food … and of course, the odd glass of wine.

Nothing else was supposed to happen in July.   The rest of this month was to be quiet.  It was a time to recharge the batteries in readiness for August’s activities.   

But then Dad died. 

Whilst not altogether unexpected, it was still a shock.   

And so an entirely different type of planning began in earnest.  How to capture, in a thirty-minute service, the very essence of the man?  How to celebrate his full and rewarding life, whilst mourning his loss?  How to ensure his funeral was worthy of him: remaining dignified whilst at the same time enjoyable?  How to remember and honour him, with equal measures of sadness and joy?      

Well, we did. 

He would have loved it.

Then, as is usual, July gave way to August. 

It is not possible, in my family, to turn forty and get away with not having a party -  however small that party may be.  And so, as Craig’s fortieth birthday dawned, we imposed on him and his brood an intimate family gathering.   The venue – Nigel’s Company penthouse on the beach, completely wheelchair accessible - was the ideal place to spend a few precious hours on a wonderful summer’s afternoon.    Of course there were balloons, a most impressive cake, simply excellent food, the best possible company, and, oh, I almost forgot to mention, one or two bottles of bubbles.  

As the August heat intensified, poor Nigel became desperate for a break.  Alarm bells sounded and pangs of panic persisted, caring carers begged for something to be done ….

Well, I’m nothing if not considerate, so I buggered off to Malta with Paula and Tom for a week’s holiday in the sun!  I mean, fair’s fair eh?

And when I returned, September had arrived and there was much to do!  The do of all dos, Nigel’s sixtieth, was about to take place.   There were two big reasons for this party.  Obviously, every decade birthday should be celebrated, and especially a sixtieth, but there was much more to this party than that.  We were celebrating the fact that Nigel is still alive.  Seven years ago he was given three to five years to live – and here he is.  Party time!

This particular shindig was not without its challenges – for Nigel’s comfort, the party had to take place at home, and there were over eighty on the guest list.  Nothing we couldn’t cope with!

As any event planner will tell you, good parties don’t just happen.  It takes hard work to make anything look effortless.   For me, the success of Nigel’s party lies in the memory of his beaming smile and that courageous and moving speech.   

You can’t plan for moments like that.

September slipped into October in a bit of haze and Danny turned forty before I’d even cleared up.

A relatively small affair this one, as Danny and Ellie were heading off to London to see a show.  Just a regular little Friday night family meal – with balloons and stuff, of course -

- I can’t imagine why the hangover lasted until the Monday.

So, in the past nine months we’ve had two fortieths; a fiftieth; a sixtieth and a seventieth: plus a wedding; a funeral; three girlie get-togethers and a holiday. 

Is there any wonder why I haven’t blogged?

Not surprisingly, we are planning a very quiet Christmas and New Year.  Indeed, not a single party is in the diary for 2015.  Yet. 

Who knows, I might even find time to blog? 

But perhaps, more importantly …

…  my liver will be saved!