Most of my friends and family will remember me pestering them to watch Kathleen Kiddo’s startlingly informative and elegant video A Mountain at my Gate ..
.. and how it inspired me to try and look beyond my own diagnosis, believing I too might yet have some goals left to achieve.
Of course, it’s worth bearing in mind that once you’re plucked away from the rat race and the daily cares and worries of most other fellow Earth dwellers and you’ve been reeling for a couple of years while trying to find a way of dealing with this crappy card some creepy cosmic croupier has dealt you – in clear bold letters framing that Big Picture view familiar to those who haven’t sailed through life unscathed but have learnt some ‘actionable take-outs’, is the message that whatever you choose to do while you see your time running out, better had be about something more than merely making sure you yourself are comfortable.
To me, that’s no longer a satisfactory definition of a life worth living. It has to be about contributing, doing something out there for others; new frantic and frazzled sufferers, as well as their carers, husbands and wives, partners, families and friends.
And of course, I still have a bone to pick the size of the part of Uluru you can’t see, around that ole Satan called Sifrol.
But I doubt I will ever be able to manage its sinister and nefarious repercussions myself, let alone be in a position to help anyone else, apart from jumping on PD fora and watching out for those ‘Hi guys, my husband/wife/whatever’s been prescribed Sifrol. Any thoughts?’ shockers.
This is when I come swooping down like a mad Milie Cyrus wrecking ball shapeshifter’
Thoughts? Yep, like regrets, I’ve had a few ..
In short, I was impressed how in that 5-minute clip, Kathleen Kiddo, often without any words at all, answered some of my posse’s earnest questions better, more coherently as well as much more lucidly than I, could ever hope to do. F
The 2-second bit where she fumbles with the belt loops on her jeans and those bloody belts that never ever fit properly, got me right in the smacker when I saw it first.
Now, year 5 since diagnosis, I still haven’t got around to investing in a solid hole punch, a perennial problem my Butterfly Princess fixed for me in the wink of an eye.
And don’t forget these things also become more and more tiresome for YOPD Pilgrims themselves.
What I am able to do now and the way in which I manage to do whatever it might be won’t be a stable situation for any foreseeable time.
What I mean is, the only thing we know about this freaky-deaky disease is that no matter what, it ain’t gonna get better.
That’s not being negative, it’s being realistic. I think the most insulting thing anyone can do is pretend to know better than the person standing stammering and shaking in front of you..
I almost caught up with Kathleen Kiddo during my last telco journo jaunt to Silicon Valley but the demi-gods of travel logistics and UB40 hit single based domestic calamities stood in our way.
However, I must ask her about this brazen gal doing a bit of a dance about Comtan. (The Comtan Ladies sing this song, Dopa! Dopa!)
That, then, of course reminds me of this little piece of knowing film satire:
But anyway, about that medical jazzercise dame? Hmmm ..
Must be a relative of Kathleen’s staying with her or something ..
No surprise though, that I do sort of like the cut of her gib.