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.