Memory walking for dementia awareness

Down where the spirit meets the bone....

Lucinda Williams is a much lauded star of Americana, though her recent tour of the UK only improved on Elvis Presley by three dates (one of which was Bexhill-on-Sea). Despite that I found myself at the front barrier of the Shepherds Bush Empire stalls on Sunday September 3^rd armed with my iPhone and an enthusiasm for her songs, eagerly recognising tracks which are now embedded in a certain American psyche – though not, perhaps, that of the current presidency….

Lucinda was born in 1953, two years after her parents married.  Afflicted, but not destroyed, by her father’s spina bifida, she rose gradually through the ranks of would-be singer/songwriters to become award winning and celebrated, with the continuing support, on stage and off, of her father, the poet and academic, Miller Williams. 

Miller Williams was a poet who championed the power of everyday language and who delivered a poem (Of History and Hope from Some Jazz A While) at the Capitol for President Bill Clinton’s second inauguration

We have memorized America,

how it was born and who we have been and where.

In ceremonies and silence we say the words,

telling the stories, singing the old songs.

We like the places they take us. Mostly we do……

If we can truly remember, they will not forget.

Tall and thin, Mr. Williams was also economical of speech, but he loved to tell stories. He was admired in literary circles for his direct, plain-spoken style.

According to his obituary in the New York Times, he was a workhorse, publishing 37 books of poetry and prose, both of his own and of others in translation.  He taught at the University of Arkansas in Fayetteville for more than three decades and was the founding director of the University of Arkansas Press. His home there was a salon for writers and others, with a guest bedroom that hosted both the hard-bitten poet Charles Bukowski and Jimmy Carter.

He died on Thursday January 1^st 2015 in Fayetteville, Ark. He was 84.

The cause was complications of Alzheimer’s disease.

Which led to Lucinda’s poignant song, If My Love Could Kill which she performs at Shepherds Bush, noting that it was for her father.

Not everyone realises that Alzheimer’s disease is a death sentence.  And, quite understandably, many people are unaware of the various other forms of dementia, all of which lead the same way, even though, as a representative of the Alzheimer’s Society said to me the other day: we have a saying; if you meet one person with dementia, you have met one person with dementia….

Today, one week later, my daughter Hannah and I help marshal 4,000 people walk 9.5 kilometres through London raising money for research into and awareness of Dementia. 

This Memory Walk is a moving event, as almost everyone is walking in memory of a loved one who has suffered and died from Alzheimer’s disease, or another variety of dementia, such as my wife Amanda’s Frontotemporal  Semantic Dementia.
  

Memory Walk is a sponsored walk for all ages and abilities to unite together to raise money to defeat dementia. The walks are spread across England, Wales and Northern Ireland and each walk will take on a different route through either a city, woodlands or a park; as of today there are still 26 walks to take place this year.  In Scotland there 13 organised walks still to happen.

This year over 110,000 people will walk united, against dementia. The aim is to raise over £9 million. 

We meet in early morning sunshine at the Honourable Artillery Company, just off Finsbury Pavement near Moorgate station in east London.  The volunteers are briefed and we set off for our Marshal Points as the first walkers arrive wearing blue tee shirts, or, in some cases, custom-printed tops.  

Despite the awfulness of this stealthy, miserable condition, the mood here is upbeat, and families, friends, and individuals mill around exchanging stories, writing cards for the Memory Tree, or just enjoying the event.

Hannah and I are stationed just near the approach to Tower Bridge, close by the Tower of London, around the half way mark.  Over the best part of a couple of hours thousands of people pass by: people of all ages; people of different ethnic or religious backgrounds; people with red hats.....

people with children in pushchairs; people with friends or relatives in wheelchairs; people who struggle up the steps, and people who are fit and healthy, who offer sweets to marshals.....  

Almost everyone displays a card, showing a message or a name: walking for Nanny Bobby; Grandad H; Daddy – Donovan Benjamin..... 

This gentleman is walking for Gwendoline Joyce.  She was his wife of 59 years.  She died in June.  Towards the end she weighed 40 kilograms, and couldn’t eat, as she couldn’t open her teeth.

However, despite.....  it is a marvellous day.  There is so much love about.  The fund-raising is brilliant, but the real power is in the togetherness of people who have suffered loss and pain, but who survive and share.  

The walkers all pass by, and the clouds gather.  A light rain starts to fall.  Hannah and I return to her new (just moving in....) flat in Kentish Town, where Amanda sits by the bricked up fireplace.

The title of Lucinda Williams’s most recent album, Down Where the Spirit Meets the Bone, is a slightly altered line from one of her father’s poems, which reads in its entirety:

Have compassion for everyone you meet,

even if they don’t want it. What seems conceit,

bad manners, or cynicism is always a sign

of things no ears have heard, no eyes have seen.

You do not know what wars are going on

down there where the spirit meets the bone.

The Madness of King Lear

Dementia, by any other name.....

At the end of Act three, Scene six of King Lear, Shakespeare's most abstract and extraordinary tragedy, Edgar, the legitimate son of the Earl of Gloucester, who has been driven to assume the cloak of insanity by his half brother Edmund's scheming, makes this pronouncement:

When we our betters see bearing our woes,

We scarcely think our miseries our foes.

Who alone suffers, suffers most i'th'mind,

Leaving free things and happy shows behind.

Edgar has witnessed Lear's dementia, through the eyes of Poor Tom, but he momentarily steps out of his own disguise to comment to the audience on the loneliness of madness.

We two alone will sing like birds i'th'cage.....

Almost two years ago I watched Simon Russell Beale as Timon of Athens, at the National Theatre, while Andy Murray was beating Federer on Centre Court. For some reason that combination of events caught my imagination and I included it in my blog piece on Timon. This Wednesday, at the National Theatre, I watched Simon Russell Beale descending into hell and oblivion as Lear, while simultaneously Andy Murray's lack of aggressive forehands led to his downfall against Grigor Dimitrov in Wimbledon's men's quarter-final match, IBM analysis has suggested (as quoted in The Daily Telegraph).

I won't pursue the links between these late eclipses - I will simply take them as circumstantial turns of Fortune's Wheel, though I cannot help but think of Gloucester's words:

As flies to wanton boys are we to th' gods;

They kill us for their sport.....

Anyway.....  in 1967 I studied King Lear and still have my Cambridge University Press copy, much annotated under the guidance of the terrific John Davison, a teacher who not only would chase his class around the school to refresh them halfway through a double lesson, but who would then fold his almost seven foot frame into a Porsche 911 at the end of the day to disappear in a dust of latin phrases as we wearily wandered home.....

The bare facts are these:  Lear is King of pre-Christian Britain, and wishes to retire. He divides the kingdom in three parts between his daughters and then expects them publicly to earn their shares by declaring their love for him. The older two women, Goneril and Regan, exaggerate; the youngest daughter, Cordelia, declines to play the game.  In a rage Lear disowns her and splits the kingdom in two, on condition that his older daughters look after him and his hundred retainers. Very quickly, however, this proves too much and both women turn him away.  Losing his sanity Lear spends a night out in a storm, supported by three faithful followers.  War breaks out between the King of France, who has married Cordelia, and Britain. Lear takes refuge with Cordelia at Dover, but her forces are defeated and they are imprisoned. Treachery, which stems largely from the sub-plot, complicates the ending and all the family die, leaving the state to be governed by Lear's eldest son-in-law.

In 1968, prior to our exams, we shuddered in the cavernous Shakespeare Memorial Theatre, Stratford, as Eric Porter stripped to his underpants to rail against the weather and Cornwall shucked oysters out from Gloucester's eye sockets to splat them on the stage.....

I was affected.  The play, never mind the actors, nor directors, had gripped me, and the intense web of theme and nuance has never since left me alone. The profound emptiness of the line Nothing will come of nothing reverberates through the caverns of my hollow mind; the sallow bleat of The gods are just and of our pleasant vices Make instruments to plague us pricks me in my irresponsibilities; and the crushing sadness of I have no way, and therefore want no eyes; I stumbled when I saw.... twists my heart and causes tightness in my chest at times when the cinder path of life seems to burn my feet.....

But my teenage years have long gone, and the clouds of smoking fires' smouldering embers are hazed and dark.  When we discussed Lear and his madness in that temporary classroom, I only partly comprehended, despite the power I sensed that welled up within the play. I grasped, I think, the intricacies of plot and subplot, the parallels of good and evil in the offspring, the paradoxes of sight and sightlessness, the ambiguity of Nature and the complexities of love. But I did not understand the meaning of madness.

But now, perhaps, as I have learned what a poor, bare, forked animal I am, the gossamer veil which fences in the sane has been revealed in all its intricate nothingness.  Be Kent unmannerly when Lear is mad.... See better, Lear, and let me still remain The true blank of thine eye......

From Eisenstein to Bacon, the frightening paradox of spectacles

It is about perception, and sight - insight, foresight, hindsight.  We do not always see the meaning, the importance, the relevance, the joke..... Here below is Lear in confused rage with his daughter Regan (who, although she will not tolerate his excesses, would put up with him alone):

And here is Simon Russell Beale's Lear disrobed, pensive, quiet, discussing dementia with a host of strangers as if it were a game of chess.....

Where is the madness in a quiet mind?  Like the clapping of one hand it is impossible to detect.  Is Lear mad when asleep (the Doctor wisely recognises that rest will cure)?  The word mad derives from the Old English for foolish, though today it has more overtones of rage, as in a mad bull. Insanity and dementia both come to us from Latin, with the first having connotations of an unhealthy condition, and the second implying being out of mind, deranged - out of control.

Just how far Shakespeare intended consciously to depict or explore madness in this play we can only hazard, but it is not incidental that Lear trades quips with his Fool (Prithee, nuncle, tell me whether a madman be a gentleman or a yeoman.  Lear.  A king, a king!) And it is not accidental that in Shakespeare's play Lear travels from apparent control (even if foolishly mistaken) to a complete lack of discipline, made most clear in Sam Mendes's production when Lear suddenly bludgeons his Fool to death in a bath.  

But Lear is not the only one who may be mad....  Why does Cordelia so resolutely defy her father? She is perhaps little more than an impetuous teenager, stubbornly holding principles that will do nobody any good, but the scene rapidly spirals unnecessarily to crazy outcomes (not unlike, incidentally, Juliet's last encounter with her intemperate father, Capulet).  Why do her sisters flatter the King their father so and then turn him out of house and home?  Why does Edmund run so wildly against his brother, and his father, and then play so riskily with Regan and Goneril?  Is Kent not rash and foolish to risk death rather than accept an unjust banishment?  And what need is there for Edgar to mimic a bedlam beggar so vividly?

Simon Russell Beale as Lear, about to banish Kent

What lines can be drawn?  To touch on two quite different stories currently in the news, was Oscar Pistorius mad when he shot Reeva Steenkamp?  And was Rolf Harris mad when he sexually assaulted young women?  What is apparent is that both men behaved aggressively and (seemingly) out of character; there is talk now of Pistorius having a split personality (which I thought was old-fashioned psychobabble for bi-polarity).  But can't the same be said for Harris, who on the one hand sang about two little boys with three legs, and on the other fondled the queen... Or am I confused? At what point is there an excuse for any individual to lose their balance?  Where is there reason for unreason?

Enter Lear asleep in a chair......

It is Lear's love for Cordelia and her response which provides the counterpoint to the horrors of the play. Having rested and been re clothed, Lear is woken, gently.  He is confused, and initially he protests:

You do me wrong to take me out o'th'grave:

Thou art a soul in bliss; but I am bound

Upon a wheel of fire......

Where have I been?  Where am I?  

And for a moment things look up. There is hope of restoration.  The evils may be past, and the catastrophic falling out, which sparked off so many ills, could be healed. Lear shows humility (I am a very foolish fond old man) but Edmund, Regan and Goneril are still at large, and there are more woes to come.  

Juri Jarvet as Lear in Grigori Kozintsev's 

1971 film

Some years ago, my dear cousin Isobel, then in her early thirties, took her life at Beachy Head. This is one strand that affects me now when I see Edgar lead his father supposedly to the heights of the cliffs near Dover. And then to see the blind man fall, to hear Edgar's wondrous explanation, is to feel those last few moments of a young life slip through the air.

Then, at Putney Vale cemetery, she was laid to rest, and I still see my uncle waving goodbye at the graveside.  Howl, howl, howl! Parents are not meant to bury their children.  This feather stirs - she lives!  

My uncle today, like my mother, is old, and has dementia, perhaps not unrelated to the shock of his daughter's death.  He does not rave, Spit, fire! spout, rain! so we will not proclaim him mad, but his mind wanders, and vague thoughts recur.

My mother, having fallen violently one night and lost an eye (which led then to the trauma of general anaesthesia and the operating theatre), muddles words, and is less than steady on her feet.  Old beyond accurate diagnosis, she may have Dementia with Lewy Bodies, the same possibility that provided Simon Russell Beale with some tics for his Lear, though the name is not important.  The condition will not get better.

The core of the play is dementia. The plot concerns politics, and family strife, love, Nature, and tyranny, but the all-pervasive theme is dementia. What happens when your father becomes demented and his habits are unsupportable?  What happens when you cannot see the mistakes you have made and believe the world is against you?

At the end of King Lear, the dead rise and evil is undone; the cast all appear together, bow, and disperse to their ordinary lives.  We stood to applaud at the end of the final performance of the Mendes/Beale collaboration at the National.  I felt uplifted, catharsised (if such a word is permitted), inspired (and could not give a toss about Murray's eclipse).  But outside the theatre our minds will continue to decay, and many a soul will degrade as dementia progresses.  The tempest of life goes on.

Poor naked wretches, whereso'er you are,

That bide the pelting of this pitiless storm,

how shall your houseless heads and unfed sides,

Your looped and windowed raggedness, defend you

From seasons such as these?

Order is restored - the entire cast take a bow after the last performance

It would be nice to think that at the end of the play, when Edgar re establishes his sanity, his words are optimistic:

The oldest have borne most: we that are young

Shall never see so much, nor live so long.

But as yet we cannot stop the tide. Shakespeare never heard the name of Alzheimer, nor Lewy, nor ever saw a prescription for donepezil hydrochloride, nor had an MRI scan, but he knew too well the distress that visual and audible hallucinations may cause, the difficulties of memory loss, mood swings, confusion, and even perhaps the problems of progressive non-fluent aphasia, or semantic dementia, though,

What’s in a name? that which we call a rose 

By any other name would smell as sweet;

(and will still have thorns.....)

In 2012 in the United Kingdom 800,000 people had some form of dementia.  

One in three people over the age of 65 will develop dementia.  

By 2021 there will be over one million people in the UK suffering from dementia.

And as yet there is no cure.

Lear was not alone.

So, so; we'll go to supper i' th' morning

http://alzheimers.org.uk/site/scripts/documents.php?categoryID=200120

https://www.dementiafriends.org.uk/

http://www.lewybody.org/

If you would like to help support the Alzheimer's Society please go to 
http://www.alzheimers.org.uk/

Please note that many of the pictures above have been borrowed, but borrowed in the hope that their use will be pardoned as illustrative and promotional material.  There is no intent to profit from their use.