I’m going to blame my psychiatrist for this one… he praised the courage of my public disclosure of my diagnosis, but challenged me with “Why stop there?”. Now after the simultaneous beauty and chaos of Christmas and New Year, some personal reflection time…

I’ve been in hiding.

I’ve been working hard, sure, writing books and editing footage (not to mention preparing for another school year) – and holidaying hard – jetting off for a New York adventure with my wife, but the truth is; for the last few months I’ve been mirroring the insidious nature of this debilitating, cowardly disease as it prefers to be unseen.

It stalks in the long shadows of the night, like the pathetically staggering, drooling zombie from any one of countless Hollywood flops; and when the sun is shining, it blends in, camouflaging, patiently awaiting the solitude of dusk, when I will succumb to this painful, contorting monster that lurks beneath.

Most of my waking energy is spent shielding others from my torment within. Is your hand shaking? Quick, put it in your pocket. Are you focussing too hard on the throbbing pain in your leg, that you missed half the conversation? Quick, nod and smile – say something witty. Now, double check if anyone is looking suspiciously… are they onto you? Walk normally, run, ride, swing a golf club, anything to reassure anyone watching, judging. In being so determined to be a positive, hope filled  story, amongst the seemingly endless barrage of despair and negativity,  I’ve strayed from the path and sacrificed a pillar of my self-worth – honesty. 

And have I actually fooled anyone? Those in self-preservation mode, denying the impact on my life – our lives, lap it up like a broadway audience after free champagne at intermission. “Bravo, good show, old chap.”In turn I seem to bathe in the applause, gladly coming back for encore after encore. They mean well…as do I… and this is ok. If I can shield you from the gluttonous pain that claws out from beyond those of us fighting this disease, of course I will. But it is fool‘s gold.

So don’t look too closely, as you might notice that my 8 year old daughter tied my shoelaces this morning – because she was emotionally intelligent enough to notice my frustration (#prouddad). Or, that my beard is terribly unkept, because either; I cannot trust my hand at the moment and I’m too scared to trim it, or the apathy that grinds away at us ‘parkies’ drops my care-factor off the bottom end of the scale.

And certainly don’t ask questions that you (and I) don’t want to hear the answer to… “You look great!”works far more comfortably than “How are your symptoms?”Or an honest “How are you, really?”

However, those who know me best can see right through any foolish facade I invent. I know this. In fact, Ive never been, nor thought I could ever be so content to be told “Hey Toddy, you look like shit!”The immense weight and pressure that I put on my own shoulders (inflated by a (prescribed) drug fuelled sense of purpose and need to role-model, now further catalysed by my bionic $60k brain enhancer!) lifts. I can inhale and exhale, unwinding just a smidge. It’s refreshing and almost therapeutic to drop the pleasantries and BS Dr Seuss style commentary of “the places I’ll go”. “Chin up, it’s not so bad”- I get it, but if I’m already standing, dressed (albeit with the help of my children), and making myself available to talk to you – then you can take to the bank that I actually don’t need a pep talk. Though, I will accept a hug, a comforting hand on the shoulder, or even a playful punch in the arm – this is where the gold can be found.

It’s ok to tell me it’s shit. It is. And until there is a cure it will get worse. So if you notice me dancing on that stage for you, do me a favour – reach up, offer me your hand and help me down. Cheering me on only makes things harder.

Writing this is difficult, I really have to cage the insatiable part of me that wants to come off as a superhero. Triumphantly vanquishing this challenge as well as, or better than anyone else could, whilst desperately wanting to please those who support me day in, day out. And so I’ll end with this:

If the level of gratitude I hold – for the generosity and support, to access brain surgery (that has changed my life and helped immensely) – was some sort of treatment, I could easily cure myself and probably rid every other person under the gaze of this horrid ever-lurking creature of the shadows. Obviously this is beyond the realm of reality, but this gratitude can and does keep alight my desire to raise awareness, and to slowly but surely shuffle down this treacherous path, one crampy, crappy step at a time.