In a country where not that long ago but certainly pre-Turnbull days, it would have been quite feasible to find oneself downing a scooner in shorts and T-shirt (I won’t say singlet) while standing at the bar of a hotel (read pub) next to the Prime Minister or other such exalted presence, equally dressed in a supremely casual fashion, I’m often asked why I choose to wear a suit even though I am to all intents and purposes having some time off, meeting friends or whatnot.
Equally, it’s perfectly acceptable to attend Church dressed like that, which makes sense considering the temperatures we see here in Summer. But perhaps it’s me. I used to think, ‘I know I’m allowed to, I just don’t feel I want to wear shorts and a T-shirt to Church.’
Most people I know associate wearing trackies (read sweatpants) with truly being able to unwind, kick back and chill out on the sofa, binging on [enter comfort food/TV series of preference].
Perhaps it’s the old all or nothing syndrome that seems to be running through my life like a never-ending winding river that never ever ends. I feel comfortable wearing a suit or wearing nought whatsoever. Go figure?
But perhaps we’re meant to never ever stop learning? My new carer who is already proving to be a fantastic support, is keen to find out more about PD. I’m sure she won’t mind me using some recent examples of learning opportunities to tie in with some bugbears of mine around people’s approach to PD and other pesky peccadilloes.
One day, I will write a kick-arse lecture dealing with some of the tricky ins and outs of PD relating to awareness and perception. Bear with me, I’m going somewhere with this..
Although wholly sympathetic and non-judgemental (that most postmodern quasi- value embraced by anyone younger than 35, it seems), I admit to being slightly irritated whenever I see yet one more listicle along the lines of Ten things not to say to a PD sufferer.
I do understand this dynamic and during the first couple of years, I too felt vexed when someone said: “PD, really? But you look ok, you seem sort of alright?”
And I’ve had my share of rippers: “Well, at least you’ve got it while you’re young!” was my favourite. What? So, you mean I get to enjoy it for maybe 35 years, instead of just the last 7 or 10 years of my life?
Just last week, a DSP/Centrelink caseworker retorted after I started our appointment by telling her I’d had to privately engage a carer: “I wish I had one of those.”
I said: “I wish I didn’t have to have a carer and I wish I wasn’t obliged to pay for it myself..” Turns out, sometimes it’s not a good idea to start with a joke.
Yes, civilians – even close friends – often don’t realise what it took the PD pilgrim to get to that social get-together where, by all accounts, one made such a reassuring impression. Nor will they realise that in most cases, their PD acquaintance will be paying for it in a commensurate dose of delayed follow-up agony the next day.
But my aim these days is to no longer to sweat the small stuff and this includes ‘small stuff’ (which, of course, may not be small at all to others even though I’ve decided it will be for me) proffered by fellow PD pilgrims.
After all, if this baffling bastard of a bloody disease – for which no one knows a cause, for which there is no cure, and for which there is no remedy other than endless tweaks to one particular drug cooked up in the 50s with the sole aim of slowing down the inevitable decline – manages to confuse, dissemble, dumbfound at every turn even those of us living with it as well as those medical minds forever trying to make heads or tails of it, how on earth can we expect those who find themselves for whatever reason in any of our social catchment areas to understand even one iota of it?
Here lies the rub. This should be where we come in. You can’t change your fate. You’ve got it, now what will you do with the remainder of your membership of the human fraternity while still shuffling around on terra firma?
We don’t all have to aspire to be the most engaging awareness advocate; you can easily find ways to make civilians think twice before they again might say or do something unhelpful, if only for future reference.
I was having breakfast in my local cafe the other day. The delightful staff and perhaps even some of the many tradies frequenting the joint know by now that on any given day, I might show up at 5.30am in a semi-dishevelled state, pining for a long black and a B&E roll.
Or I might emerge a bit later in a suit, on my way to a meeting in the city.
The other day I was having a hard time along with a small latte when two ‘ladies who lunch’ saw my latest acquisition, a rather gorgeous if fanciful walking stick.
While I had my coffee, I heard them semi-giggling and wondering what on earth this thing was this guy had with him.
“I know, it’s a back scratcher!” cackled Blonde Highlights No. 1.
When this kind of thing happens, I always have to double-check my perception settings as I do have both an innate underlying tendency towards paranoia as well as the – thankfully less severe – paranoia package that comes as a free add-on with PD.
As my speech is currently not great, I decided not to launch a sarcastic put-down. After all, how were they to know that someone with a walking stick can somehow still use his hearing function?
Finishing the last few sips, I abruptly turned my gaze from the world outside the window to look at them. Straight into their eyes, yet not in a mean or aggressive manner.
Just in a, shall we say, unmistakably determined and communicative way. It seemed to do the trick.
Oh yes, I haven’t forgotten. My new carer and I were heading to an appointment I thought I’d made with a new specialist here in Paradise, sorry I mean the Central Coast, and while it was a bright sunny day I had brought along my trusted brolly, a prized bit of merch I picked up thanks to the good people of MS at a recent telco event in KL.
And of course my carer had no way of knowing I’d been having some trouble walking the previous days, a new and disturbing development I’m attributing to having had to change back to Kinson following the disastrous Madopar episode.
“Well Richard, seems you were expecting bad weather today?” she said a bit later while we were taking a lovely leisurely drive around the countryside, which indeed was basking in golden sunlight, framed by a clear-blue cloudless sky.
“It’s actually for walking,” I answered. “My version of a cool walking stick.”
There was no harm intended or caused. But it contained a few lessons both ways to benefit from going forward.
- Don’t assume (too much) about PD if you’re not (yet) au fait. Most of us are happy to try and explain, inform, enlighten those who genuinely want to learn
- Don’t assume a civilian’s comment is necessarily meant in a hurtful way (I’m forever having to remind myself of this; the old paranoia again)
In the end – I remember novelist Thomas Keneally once saying this in a completely different context – “we’re all just stumbling pilgrims, doing our best to keep picking ourselves up whenever we fall down.” *