I’d say it’s what separates us, not from the beasts, but the bestial. Creating the future, renewing a learned past - these are reasons to strive. Writing for and with love, taking and framing an image, stretching new melodic skins onto old skeletons of song… it’s how we manage to fly. It’s how we stay you and me, not us and them.
Unlike Osk, who seemed to establish his own tactical task force wherever we lived, scooping up neighbourhood feline troublemakers as sidekicks (including the memorable ginger behemoth Watson, with whom he used to scope the street from the safety of the shed roof), Jelly has the intelligence gathering skills of a sponge cake.
Anyway, somewhere in between my 'and then you should've done this' and 'why didn't you say x and y, rather than z', and 'for the love of monkeys and the general public's eyesight, you didn't honestly wear that heinous shirt did you', something he was saying about the dating extravaganza we were picking to pieces finally penetrated my cloud of self-congratulatory cumulo-waffle.
"Most people don't talk about how dates are progressing as a tender process, do they?" he asked.
"What?"
"She said I was 'part way through the tender process' and that she was judging me on my submission. I'd like to think there was irony involved, and I think at the time I may have given an admittedly weak "haha, yesssss, quite". Looking back, I'd have to conclude, computer says no on the presence of Fabulon or other aids to achieving crisply pressed linen."
So - the great day has finally arrived. No, it's not my birthday, although thanks for thinking of me. It's not Christmas, or Hanukah, or even Festivus for the Restivus - not quite yet.
It's even more momentous than that.
Yes, you guessed right.
One's dignity may be assaulted, vandalised and cruelly mocked, but it can never be taken away unless it is surrendered. - Michael J Fox
Today is, of course, World Parkinson's Day. And yes, I may have my little joke with the title of my post, but that's OK, because I have Early or Young Onset Parkinson's, I have had it for a very long time, and if I'm not allowed to laugh at myself, I don't know who the hell is.
Last year I wrote a post called Stone Cold Fox which seemed to attract a fair bit of attention; sadly I think not because of my amazing prose or pertinent and poignant message, but because it featured a photie of me wearing - well, wearing my epidermis and not a hell of a lot else. Bad luck this year my friends, as I found this freaking FANTASTIC Cyanide & Happiness cartoon, and if there's anything that appeals to Parky people, it's black, black, black humour - because if we don't laugh at ourselves, there's definitely bound to be someone else who will get in pretty damn fast.
We have actually come a long way in just the last 12 months when it comes to finding out not just more about why Parkinson's is, but how to actually beat the bugger off for good. For an easy to understand guide to what Parky is all about, rather than me trying to explain it (because let's face it, I am just a little bit biased), I suggest going to the Michael J Fox Foundation for Parkinson's Research's website and reading here. It's sensible language, it doesn't try to blind you with science or doctor garble, and it will help both the newly diagnosed AND their family and loved ones.
30 people a day are diagnosed with Parkinson's in Australia. Of those 30, 6 are of working age. I am 42. I have had Parkinson's since I was 29. I am incredibly, incredibly lucky in the level of Parkinson's that I cope with - but I admit that at times it is tough. I have what are called 'dystonic spasms' (and yes, Mike Fox gets them too) and at times they are so severe it makes it hard for me to talk. They hurt. A lot.
If I am on the phone, I sound slurry, as if I have had a stroke or have been drinking heavily (I wish, jellyfish). I recently had a health professional who should have known better insult me terribly by insinuating that yes, I was indeed bombed out of my skull and that I was making up these so-called spasms.
Suffice to say there were a few tears and then more than a small amount of Kate Stone style wrath (not pretty. Think Oscar the Grouch crossed with Darth Vader crossed with Miss Piggy).
People with Parkinson's, especially younger people, tend to try to hide their condition because there is still so much ignorance about it. Thankfully this is changing; but what would be even more amazing and wonderful is a cure. I have some super, super friends who are doing everything they can to make this happen, and there is one in particular whom I have to give a scream out to.
I am lucky enough to be a part of a wonderful women's netweaving group called LBDG, in itself a massive giver back to the community, and run by the most inspirational rockstar I know - Janine Garner. One of the gorgeous members, Tanya Grausam, runs a fabulous not for profit organisation 'Cocktails With A Conscience'. Not only is she allowing me the privilege of helping her get CWAC up and running in Perth, the first event of the year is benefiting - yes, you guessed it - Shake It Up, the Australian Parkinson's NFP associated with Team Fox, run by the dynamic Caz and Clyde Campbell - Clyde having Early Onset Parky like myself. Tan is also running the Great Ocean Road Marathon in honour of her gorgeous Grandfather who has Parky and is kind enough to include me in the mix. So sponsor her or I will come and sit in your garden and shake at you! And come and drink yummy drinks and give us lotsa cash at our CWAC event in your city!
A lot of people think having Parkinson's is about despair. As someone who has it, I beg to differ. I don't deny there are some very long, dark, deep, teary moments. I also don't deny there are some 'why me?' thoughts. But you know what? Ultimately the answer to the why me question is this...
'Why not?'
Am I so bloody special or holy or blessed or without stain that I deserve to be without a little pain?
No.
And for every shake, every frustration with trying to write neatly, every spasm, every trouble swallowing, every bit of fatigue...
There is a bit of understanding. That one day - I will feel better. And so will everyone else who feels a hell of a lot worse than me. And I have to say a thousand thank yous to Shake It Up for making me one of their heroes in 2013. Not deserved, but wow - tears of gratitude and absolute joy.
So shake, rattle and roll this April 11. Straight to a Parkinson's donation box.
And help us find a cure.
Or I'll accidentally whack you during a spasm.
Seriously... it'll totally be an accident.
Heh.
“I have no choice about whether or not I have Parkinson’s. I have nothing but choices about how I react to it. In those choices, there’s freedom to do a lot of things in areas that I wouldn’t have otherwise found myself in.” — Michael J Fox
Today is April 11. It means very little to a lot of people, unless it happens to be their birthday, or perhaps a wedding anniversary. To me, and to a surprising number of people under the age of - well, let's just say not so old, it means a hell of a lot.
Today is World Parkinson's Day. And I, like 10% of all people in Australia with this condition - I actually refuse to call it a disease - was well and truly diagnosed under the age of 50. It is not reserved for the elderly; it is not something that should not be discussed.
The fact is that six million people worldwide have Parky and it isn't going away anytime soon - not unless we talk about it, and raise awareness - and most of all raise bucketloads of money to find out what on earth causes it.
I seriously believe that if it wasn't for Mike Fox coming out of the Parky closet there would still be a misconception of this bugger of a thing still being seen as something that only happens to little old men shuffling around in their jammies, forgetting where they are and shaking uncontrollably. And sadly, that is something that is the fate of many with Parkinson's - but then again, it's pretty much the fate of everyone once they reach a certain age.
But I am not old. I am not shuffling around, bent over. I do not sit around in my jammies - well, not unless I feel like it. And unless I forget to take my meds, or I am very very tired, you would be hard pressed to see my tremor. I do sometimes lose my balance and my handwriting is appalling, and sometimes I get what I call 'the stares' but so what? I am not sure that qualifies me as an invalid. I make fun of myself before anyone else can (usually the Dread P - he has a very strange interpretation of the word 'special') because my goodness, it would be very dull indeed to take this thing seriously.
There is a reason why I have posted a photo of myself wearing - well, wearing myself.
Because this is what someone with Parkinson's looks like.
Someone who takes care of themselves. Who is fit. And active. And healthy(ish).
And I am damned if Parkinson's is going to beat me down.
However.
I have had it for 11 years. I am so very lucky to be in a good place, after some dark times. I know the horror moments of what E Onset Parky can bring. I have had my share of nights spent with my muscles locked in total rigidity - including my jaw, which no doubt gave some people the benefit of my not speaking - and I have cried many tears of pain and frustration and anger.
And the trouble is I never know when those days may come back. Just like Mike Fox, just like the amazing Clyde Campbell, founder of Shake It Up here in Australia, just like my beautiful friends Sacha and Suey. We never know.
So today - give some cash. Just a little. Think about really cool people like Marty McFly himself. He and I can't go Back To The Future just yet - but we can do everything possible to raise awareness and funds.
Is it wrong to say I would quite like a de Lorean if someone wants to give me one?
Yes. Yes it is.
Oh well.
I blame Parkinson's for the impure thought.
Snigger.
