Have you ever received, or delivered, bad news by text? Ever telephoned someone knowing they were out and you could drop a bombshell in an answer phone message? Or heaven forbid fit the revelation in 140 characters on Twitter. No me neither. I confess to prevaricating over how to tackle a thorny issue to the extent that events overtook and the communication was conveyed by a well meaning third party.
On Saturday, for the second time, I found out my current status in a copy of a letter from the Neurologist to my GP. Although I had worked it out (as previously mentioned) seeing it in black and white is somewhat sobering. Yes I no long have Relapsing Remitting MS; I have graduated to Secondary Progressive i.e. the sand in the egg timer is running out more quickly than before. Hmm using the egg timer analogy could be interpreted as my having an hour glass figure which I don’t!
Of course I could sit and cry, alone in the privacy of both my house and my head; and yes I’ve done that on occasions too. But on the other hand if time is limited it’s a shameful waste of precious moments of ability. As many of you will know there is nothing more depressing than weeping alone; dawn and twilight should especially be avoided as the Dylan Thomas quote ‘rage against the dying of the light’ comes to mind.
The definition of love is supporting someone you care deeply about to take a route that could ultimately deprive you of their presence. The definition of arrogance is saying to someone facing a life of increasing disability and dependence that you don’t understand because in your family you don’t know how to do anything other than cope. Oh if twas only that simple. I have received both responses over the last few days both from friends with whom I thought I had a close relationship; times like this have the tendency to cleave open cracks it seems.
Life is like a kaleidoscope, ever changing, shifting, shaking component parts forming new images each time. The impact of one microscopic fragment floating in any direction creating a new experience; a new (dis)ability to deal with and accommodate. A new perspective as the colours fade slipping from definition to shades of taupe or gray (the contemporary stylish twist on grey), a wave of sludge incrementally engulfing, depriving, corroding; a slow insidious attrition. I refuse to abuse the term sumami in this context as it devalues the impact of the real thing.
Sand grains dance bumping against each other, removing the rough edges needed to engage dynamically. Smoothed out gliding directionless like a personal hierarchy of class – the further up the ladder the less one has to encounter the rough edges as one is able to pay someone to act as an interface (oiling the wheels as it were) – all the pleasure with none of the pain. Only that is a case of choice opening up whereas a degenerative condition is about exactly the opposite; an absence of choice.
So the question is, once again, how to take advantage of the time I have with the ability I have? As a meticulous planner the speed of change poses a challenge; there is no time to prevaricate. A new notebook is probably not justified; except perhaps a small stylish electronic version to slip into a sophisticated handbag. I’m hankering after a red number; a ruby jewel colour me thinks. This frankly superficial instinct is beginning to p**s me off; surely I should be considering the technical specification, the guts of the device, the enabling power etc but no I’m starting with the ability to accessorise! In my defence the weight is important too!
If you were planning the next twelve months on the assumption that one has to prioritise the important what would you start with? Spending time with significant friends and family? Visiting places you’ve always meant to see? Yes these have been put at the top of the list but not ahead of losing weight so my BMI is normal for the first time in decades! I know this is a slight macabre leap ahead in time but one does sometimes feel sympathy for ones coffin bearers; I’d hate my parting deed being simultaneously putting the backs out of four strong men!
My gorgeous brother is a strapping lad with a serious portfolio of outdoor pursuits which I’d hate to deprive him of. He’s wonderfully pragmatic but his generous spirit would be tested if when asked why he wasn’t rock climbing any more he responded ‘well you see it was all fine before my sister’s funeral; she was a bit of a big lass the size of which a grown man should never be asked to shoulder’!
So suggestions ladies as to what should feature on my forward plan for 2012-13 – no Dilys I’m not joining you on a sky dive assuming as it might be for spectators! The need to make a difference features high in my prioritisation criteria as it would be selfish or self indulgent to squander limited time on one’s self (in my opinion)! Well off for a Slimfast shake (smooth banana or indulgent chocolate) before popping into town for a Genius appointment at the Apple Store where I am confidently assured the camera on my (relatively new) I-phone will be fixed. (For the avoidance of doubt although there are indeed Slimfast tins in my cupboard I have no intend of spoiling my delicious (low fat) Almond milk by adding the evil powder to make a shake!)