Voy Por Ustedes

I like a good late night, made for TV movie. One of my favourites is the Langoliers, adapted from a Steven King novella. In the film, a small group of strangers travelling on a cross-country flight find themselves in a weird parallel universe where all the other people have disappeared. While everything around them looks real – it’s all curiously inert. Food tastes bad, matches don’t light and sounds don’t echo.

After a time, the passengers realise they have passed through the usual rip in the space-time continuum and are now trapped in a slice of time past. It seems that as time moves on, it leaves dead copies of reality in its wake and they are stranded in one such copy. Nature isn’t keen on leaving dead copies of reality lying about and deploys armies of piranha like creatures called the Langoliers whose job it is to gobble up all those dead copies of reality and everything in it. Can our heroes outrace the ravenous Langoliers? It's a good movie, and it's also a good metaphor for living with a grotty terminal disease.

Elementary mathematics can be employed if one wishes to determine whether life is worth living. Simply add up all the cool stuff and add up all the nasty stuff and if the cool stuff adds up to more than the nasty stuff then you’re good to carry on. How you value these things is up to you. The problem with something like Cystic Fibrosis, is that as it advances, it gobbles up all the good experiences Langolier stylee and you're left with a smaller and smaller port folio of goodies with which to justify the toleration of a harsh, sometimes painful, and always exhausting lifestyle.

Early on in ones CF life, things are relatively simple. Joy and mirth can be had from anything from playing scrabble and football, to rolling about in a graveyard with the girl from Boots. All of those things combined are more than commensurate to the relative inconvenience of the odd trip to hospital and the odd course of wicked strength drugs and perhaps a little teasing about ones wheezyness and slender build.

As CF progresses, scrabble, football and even the girl from Boots no longer become sufficient to compensate for the increasing burden of a decreasing lung function and the supplementary literal and metaphorical goo that comes with it. One then becomes dependant on the more inspirational experiences life has to offer as the Langolier effect continues to make previously joyous experiences redundant in our quality of life equation. Of course by definition, the more inspiring the experience the more infrequent it’s occurrence. And herein lies the real bastard element of a deteriorating body.

With CF at it’s most advanced state one has to start looking beyond personal experiences for motivation. Not even a first kiss, or a 95th minute winning goal in the Champions League final or a lottery win can produce the kind of life affirming pleasure one needs in order to, well, in order to affirm ones life.

One starts to feel that if you’ve kissed one girl, you’ve kissed them all. Football has by now become just a game. And what’s the point of having money if you’re too knackered to go out and spend it? By now, to gain the required level of motivation to keep going, we’re in the realms of meeting our soul mate (ha, nonsense), longing for world peace (I know, I know) or marvelling at the stars and the enormity of their beauty (can you spell tenuous?)

One also needs to draw inspiration from the lives of inspirational people, Socrates, Nelson Mandela, Mohammad Ali, Jonny Kennedy, Wile E. Coyote and perhaps given the hell that has been George W. Bush, Barack Hussein Obama (maybe).

This all sounds very gloomy, but bear with me, I haven't finished yet. Some dude once said, “The dead know only one thing, it is better to be alive”, I don’t think I’ll ever agree with that, but until you have found the grit to finish the last dram or passed out under the table I don't think you can call it quits. Only when you have realised all of your dreams and ambitions or been truely Langolied will you have earned the right to shuffle off to the blissful nothing from whence you came.

Which ever side of advantage you happen to sit, I’ve begun to think one almost has an obligation to remain alive and by alive I mean actually living life, not just sentient, out of respect for the lives of those from whom real inspiration is drawn and for those who were never afforded the opportunity to experience life one way or the other.














To the faithful departed