Waverley Singers’ performance

On Saturday 19th March 2016, we were represented at the Waverley Singers’ performance of Bach’s St John Passion in Aldershot, and benefited from the retiring collection.

We gave a short presentation about MND and the work of the Association, the last part of which was a reading by Rosalyn Landor of  MND Trustee Mark Stone’s piece about the impact of MND on him.

Rosalyn Landor reading ‘MND and Me’ by Mark Stone

Mark had read this on Radio 2 in October last year, and the BBC broadcast the programme again on Mark’s death in early February. The audience at the concert were greatly touched by the reading, and asked if we could make it available.

Here it is:

‘MND and me’

by Mark Stone

‘Up and down, up and down
I will lead them up and down
I am feared in field and town
Goblin, lead them up and down’

(Midsummer Night’s Dream, Act III, Scene ii   –  William Shakespeare)

As Puck to the lovers in Midsummer Night’s Dream (Shakespeare’s ‘MND’?), Motor Neurone Disease has proved a rollercoaster ride for this mere mortal.

It has changed everything; not ‘nearly everything’, but literally everything. Good, bad, or indifferent – whatever else, everything has changed.

It has brought out the best in people – and the worst in people, including, of course, me. But everything has been transformed, whether subtly, or dramatically, by the experience of gradually losing facility – and knowing that there’s nothing you can do about it.

Well, you can, of course –  mentally, psychologically, spiritually. But physically, the die has been cast and you are on a journey that you cannot alter.

The process is subtle, gradual, inexorable:

snip, you can’t keep up with your family in the street;
snip, you can’t control your foot against the rip at the beach;
snip, you can’t drive;
snip, you can’t do the stairs without using the banisters;
snip, you’re no longer safe in the shower;
snip, you need crutches outside;
snip, you can no longer visit your parents’ house;
snip, you can’t get to your kids’ rooms;
snip, you’re breathless every time you walk;
snip, you need a wheelchair;
snip, you can’t get into a normal car;
snip, you can’t get into your own house;
snip . . . snip . . . snip . . .

Time – and people – are the most precious things of all.

Time wasted is impossibly cruel, an abomination, an unspeakable injustice.

Time spent well, especially when shared – massacring madrigals with friends, Bach & Bruckner at the Proms, dappled sunlight on old church walls – is the greatest gift of all.

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