What would you do if you knew that your time was running out (your own, not a friend's or a family member's, difficult as that is, I know)?
Think about it...
Would you rush to cram in all the things you'd planned for the next thirty years and wouldn't now have the ability for?
Would you take it easier in the anticipation of making your body last a few years longer and hope that at a slower pace you could achieve some quality of living, albeit not precisely what you had planned?
Would you be so swamped with hopeless plans that total inertia would ensue?
Would you give up?
Would you ignore the situation and carry on living as normally as possible until your body put you in a wheelchair?
If there is one thing I have recently learned it is that being brave, positive, supportive of a friend and daughter in their illness is a far, far easier thing (and its still tough as hell) than being brave and positive for oneself.
A friend who has cancer decided that he would climb the four highest peaks in Britain and Ireland. Whether he reaches the top is irrelevant to the project, he will climb as far as he can. He is in Kerry at the moment with a crowd of friends, different friends for each peak! He is having a whale of a time, motivating and inspiring everyone around him which is truly amazing to see.
I know I refer to Eldest and her fibromyalgia from time to time, but she continues to amaze me with her determination that despite being crippled with pain and needing constant support and help with everyday tasks and living, this condition is not going to remove her future. At present she is back at University doing a Masters, hoping to be qualified for a more sedentary career, its not her dream but she adapts.
We all know of other people, young, old, not so old, who have suddenly had their futures diverted through illness and unlooked for disability. Some of them turn into amazing people who inspire others, I guess everyone has their level which they need to find.
Perhaps we can look at it as a shot across the bows, an early warning that one is not immortal (did we think we were?) and had better get on with real living. Maybe we are the lucky ones, others have their lives snuffed out with no warning who were definitely not ready to go.
People say 'where's there's life there's hope', but have they have ever considered how it would be living with chronic, debilitating, incurable, long-term pain knowing exactly the prognosis and the destination, if not the time frame? Can they imagine waking up every single morning (if indeed they have slept) feeling they have simultaneously been beaten up, run a marathon, got early Alzheimer's and maybe a dose of 'flu?
We can be cheerful, optimistic, smile when we can't move, try not to break other people's crockery or fall over in public and embarrass you, we can take well meaning useless advice and platitudes with a gracious smile, and judgemental attitudes with an even wider gracious teeth grit, we don't look ill so we can pretend for your sake that this disease is temporary because we know your mind can not contend with our problems, we can try not to resent your comments that since we are looking good and laughing we must be 'better', but still we know there is no hope for improvement, the pain is turning our brain to mush and our time is running out.
Go with your happy optimism, we will try to buy into it where we can but please do not presume to know what it is to be us.
And yet, underneath the pain, disability, fear, endurance, black humour, we remain the same person we always were.
Welcome to our new world.