I tend not to write (on here) about the many and major downsides of (me) being disabled – unless I am describing how I continually (attempt to) overcome those drawbacks – having learned, slowly but surely, over the last nineteen years, that, for me, having a positive attitude (if only in public) means that I cope more easily; and am not completely defined by the fact that my life and body have been seriously damaged by the recklessness of others. I also hope, of course, that those who meet me, and get to know me, can therefore similarly learn to ignore such negative aspects – seeing past the walking stick and hearing aids, as well as any visible pain (that may leak through the clumsy forcefield I erect) – concentrating instead on the happiness, creativity, intelligence, and frequent goofiness; rather than dwelling on being sympathetic to what they may perceive as my ‘plight’.
Yet, as an individual, there are innumerable core facets of my personality that have not changed in this time. Those that have, I would categorize as ‘growth’: aiding and abetting a maturity that, otherwise, may have taken much longer to emerge. I have learned patience; acquired stoicism; become more attuned to the world around me – especially the natural and the aesthetic. I have also realized that ploughing my own furrow – oft with little or no regard for those who would want me to fulfil their expectations, rather than (or even ignoring) my own thought-through desires – is the only way I will survive (or even flourish).
It would be easy to label such an outlook as ‘selfishness’: but I only have this one life (a truism, I know); and many – particularly the physical – facets of it (and therefore some of my ambitions) have already been snatched from my reach. This approach, then, to me, is more about making the most of my limitations: bringing a smile to those others who do care – and not just for me – by being vividly genuine.
When I have written on this blog about (my) disability, I have tended to follow three paths: the humorous (often in rhyme); what could be described as the general, objective, or political; or, as I mentioned above – particularly when I am reducing the subject to the specific: the way being crippled affects me – the physical mechanisms I use to try and get on with those aspects of ‘everyday’ living that are still open to me (although not actually every day…). There are therefore very few people who know and understand just how tough ‘being’ is for me; and, for most of the time, that is how I would want it to remain.
However, I have been told on numerous occasions that, by appearing so generally happy – which, in many, many ways I am – I often do myself a disservice. (One of the things you are taught on pain management programmes is not to fall habitually into that supposedly British response of “Not bad”, when asked how you’re feeling: but to remain honest, without, if possible, reducing yourself or the questioner to a pile of gibbering mush.) This then, is about finding a middle way – although not a compromise as such: just refining (and perhaps minimizing) the detail, without being dishonest. (After, all, no-one expects – or wants – a lavish exposition….)
Abetting such an aim – although perhaps counterintuitively – is my desire to live what life I have remaining (meaning both in a “threescore years and ten” way, as well as one limited in capability) to the full. I referenced Robert Herrick, recently: and yet there are (too-frequent) days when I am confined to the house – and often to bed – where that gathering of rosebuds is simply not possible. Those days, therefore, when I am out and about – although I would not go so far as to describe this as determined socializing: any interaction with others is more liable to be accidental, because of my Mole‑ish nature and dulling ears – are filtered through lenses of tinted joy; coloured with the success of (temporarily) subduing the demons of my disability; overcoming the limitations I am supposed to let rule my invalid existence.
As I have written before, I am no fan (in practice) of ‘pacing’ (despite my intuiting of its logical, proposed benefits): and will, on the rare days that I envisage the successful fulfilment of the tiniest potential, become an enthusiastic repudiator of any impediments – increased suffering; decreased energy, etc. – placed in my way. Short-term gain for long-term pain, no doubt. (And, almost certainly, countless days of worsened symptoms, as a result.) But the psychological benefits, for me, are reward enough: not only giving me something to write about, on here; but, more importantly, producing an all-encompassing glow of achievement that then motivates the next escape from the confines cruelly placed around me. (Some people never learn, do they?)
However, there is one particular pitfall to such a disposition (one which could be described, I admit, as fighting my own body; confronting my infirmities in what may be seen as quite an aggressive manner): one which comes from scheduling those “rare days”, rather than waiting for them to emerge through the mechanism of happenstance. And Saturday night was such a heffalump trap.
Continuing my musical “pilgrimage”, I had hoped to attend (and therefore had bought tickets for) the Orchestra of the Swan’s Christmas Concert at Holy Trinity, with members of my extended family. (I also had an invitation to review another concert, that night, in Bradford-on-Avon!) I can be (I will admit) a little bit of a Dickensian humbug when it comes to such seasonal celebrations – decades of being in, and running, church choirs can do that to even the staunchest musician (especially an atheistic one…) – but, obviously, the chance of enjoying any music (and from such talented performers) was enough to lure me away from my innate aversion.
However, for the last eight days, I have – despite short remissions for good behaviour (well, impatience, really; combined with stubbornness and stir-craziness) – been plagued with migraines of increasing severity: and I am still somewhat (at the time of writing) in a position where the left side of my body feels as if it has joined the Dark Side. Never mind the pain (which, on its own, I have learned to deal with): I also have very little vision on that side (insert Jeremy Corbyn joke here); and what I have is extremely light-sensitive. Additionally, on top of my usual tinnitus, I have hyperacusis – a cruel irony for someone losing their hearing. And, just to top all that, my movement is severely limited.
So this is where, and when, my ‘condition’ finally ‘gets to me’. Where all the psychological resilience I have constructed, crumbles. Not for the first time; and certainly not for the last. But the blinding reminder – in the same way that a memento mori may shock you into remembering your own fragile mortality – can be quite overwhelming: especially as proof that you don’t (and won’t) always win; that you can’t always get your own way – as other, more ‘normal’ people do – and that there’s a reason why the sheer exultancy of setting goals, making plans, ignoring limits, comes with its own equally harsh, depressing risk of consequential, unplanned-for, hurtful reality.
But if you don’t take those risks, then what is life about? I accept that I will never climb Helvellyn again: threading my way gingerly down Striding Edge. But I will never accept that I cannot at least make an attempt to see it again; or slowly explore easier, flatter parts of the Lake District at my own, bumbling pace (whatever the short-term consequences). And I will also play my part in overcoming those ‘social’ aspects of disability that stand in my way – more captions at the RSC; better hearing aid provision; ramps and handrails; self-opening doors – enabling easier access to the things most take for granted.
It is hard, though, to accept the disappointments that stem from being less able; less mobile; less (and simultaneously more) sensitive to sound; more riddled with pain. And, when even the smallest victory appears unachievable, inaccessible, it is hard to envisage future successes. They will come, though….
Prologue to an (as yet) unfinished play…
Once my world was the world, a world entire;
I made it mine, stamped my feet hard across
Vancouver’s islands and Pacific coasts;
Ascended tall Chicago towers, relished
Michigan’s shores, its pier, its peerless art
Made concrete; crossed the Seine at dawn; explored
Deutsch Kirchen; Dutch kerken – sang their echoed
Magnificats to an unknown godhead;
Wandered Swedish forests, paddled broad fjords;
Crossed seas; strode Highland glens and Lakeland fells;
Broke the back of Beacons; dark Pennine moors;
Rode ridgeways; saw spires; edged Midland waters;
’Til I found my home safe beneath Edge Hills.
My world – a world without limits; without
Unknown places that could be turned knowledge –
A fall of curtain too early;
Too soon before its call could play its turn;
All dramatis personae vanished, too
Soon, before their parts completed starring
Arcs across the heavens of their stagecraft.
Once my world was the world, the world entire;
Now it is a village, at best; a house,
When less better; a room; a bed; myself –
My world has shrivelled into my grey skin.
All know that with age comes unkind shrinkage:
Of height; of mind; of friends’ encompassing
Love, and life – a narrowing of knowledge
Expected: as arteries atrophy,
No new blood is made to warm our fingers
Or our toes.
But not too late; yet, for me,
Ever too soon; too far; too quick. Finis,
Before the second act has started on
Its way: ices yet to melt; drinks not drunk;
Rôles to be delivered; and plots entwined.
Too soon, too quick, my mind may be my world:
Complete as the sun; wide as planets; bright
As the moon; journeying as comets do
To fantastic destinations not known…
Shrunk to a stop: a black, marked point of
Pressed ink, deep within blank, bleached, milk linen –
An original space to be filled: with
All that was my last world; made new with new
Imaginings; explorations; visits
To the broadest limits of my new-found
Loam; and then beyond. I will not be bound
By infirmity or pain. I will face
Impositions; false borders of barbed wire
Erected by dull, slow expectation
Against the anarchy of thought; against
Sprinting regular creativity;
I will face them with joy and rare strangeness;
From my infinitessimal blot I will
Trumpet, demolishing establishment;
Will blast loud: shout My world is world enough!
Collapsed, my corner may well be; subdued,
Punctured, rendered miniscule; but not done.
I am not done. Not done. This is no end –
It is a chance; a vantage: not over,
But [grins] an overture! So, let’s not dwell on death:
But fill our heads with light; our hearts with spring’s bright breath!