Imagine if every time you spoke about an event in your life, someone told you how you were going to die? They can totally relate to your situation because they know someone or knew someone in
that exact a similar situation, so they feel the need to detail how your demise will be.
You got your first car? My uncle had a car once. He died in a fiery crash when he was hit by a speeding driver on the highway. Terrible terrible thing to happen. Horrible way to die.
You’re pregnant? My great great grandmother had three kids but she died in childbirth on the fourth. Dreadful thing to happen. So tragic.
You got the flu? I watched my sister go through the flu. Slowly and painfully it ate away at her. She was a brilliant teacher with a great career until the suffered for years with the flu and then she finally died. It was so hard to watch.
This is pretty much what happens when people who have just met me, even complete strangers, discover I have Parkinson’s Disease.
I may reveal it because it is relevant to the meeting, or because I feel the need to explain my symptoms. I may reveal it because I’m asked why I’m on a mobility scooter when I’m only 40, or because for the 57th time this week I’ve been asked if I’ve hurt my leg because I walk funny. I try to keep it to a pretty simple I have Parkinson’s Disease. Sometimes, depending on the situation I may need to elaborate…. “which affects my balance” or “it makes my muscles rigid and so it’s difficult to walk at times”.
It’s met with a variance of responses:
But you’re so young!
How long have you had it?
Isn’t that what that actor from Back To The Future had?
Lately though I seem to be coming into contact with more people who knew someone who had it and they have their story to tell about it. It’s not a story that ends well though and it’s a rather awkward conversation for me to have. They basically detail their pain, the person’s pain and how I’m going to die.
On the most recent account of it, I ended up cutting the conversation short because quite frankly I was annoyed that in that particular situation I was forcing myself to nod in an understanding way and listen to someone recount something that was completely irrelevant to me and served me no purpose what so ever.
It was at my own front door. A charity collector (and my haven’t they changed from the old days where someone knocked on your door with a bucket and you scrounged around the house for change to drop in and they wished you a good day and left). He was collecting for a generic cancer charity and had his best friendly personality on trying to engage me with what a lovely complex I lived in before he launched into his well rehearsed speech about how many people are diagnosed each year blah blah rely on services not provided by government blah blah my important donation blah blah yeah look dude I’ll save you some energy and stop you right there.
At that very moment I was using all my energy just to stand at the door and stopping my over excited affection hungry dog from trying to get past. I am broke. Like when my pension lands in my bank it’s about two hours before I’m back to a bank balance of $2.11 kind of broke. No I’m not signing up with my credit card details to donate every month. If you had a bucket for coins I’d probably scrounge some together to throw in but since you don’t I promise you I buy daffodils and pink ribbons and cancer council sunscreen every year but I just don’t have the capacity to sign up to monthly contributions when I can barely pay my own rent.
He understands. He tells me it’s great that I support all the causes cos blah blah blah cancer bad blah blah blah have you known someone affected by cancer? Uh.. yeah. Yeah I have. Who, what type (why why must he know all these details… why am I still standing here being so damn polite when I could just slam the door and go take the planned nap he interrupted – damn me and my polite values). Mate, there’s a list. I know many many people who’ve both survived and died from many many cancers. It’s sad. Very sad.
Perhaps he felt like he hadn’t related to me enough to reach that KPI and commission he so very much needed. He just had to drag more out of me. He proceeded to detail the kinds of services those people would have used and how without said charity they’d have very little or no support. Mate, I know what it’s like. I have Parkinson’s Disease, believe me there’s stuff all support for people like me!
Crap. I wanted to kick myself. I wanted to kick the dog. I wanted to crawl into a ball on the lounge and die right there.
Oh! You have Parkinson’s! My grandfather had that. He was a brilliant man. He did blah blah blah for a living, designed blah blah….. it stole so much from him. He was just a mess in the end. I hated seeing him like that. Shaking so much he couldn’t even drink from a glass, not even able to walk himself to the bathroom. It dragged on for years before he finally died from it.
Well we don’t die FROM Parkinson’s but yeah, the complications from it can cause death.
It killed me to watch him like that. To see a man who was so brilliant deteriorate the way he did. Such a cruel and horrible disease. I have no doubt the expression on my face spoke volumes. OH!, but you you’re so young I’m sure you’ve got plenty of years ahead of you, ummmm, how is it affecting you? Are you doing okay?
Whah? I assured him I was fine but I wouldn’t be if I didn’t get myself down for my nap before the kids came home from school, wished him good luck in his endeavours and promptly closed the door. Which I should have done when I initially cut him off. I really didn’t need to be reminded of how my life will (most likely) end. How Parkinson’s Disease
is going to already is, stealing away my life from me. My independence, my freedom, my fun, my youth, my dignity.
Yes, We are very aware that Parkinson’s is a cruel, relentless disease and that it will take away so much from us and yes we are well aware that our loved ones will have to watch this while it’s all happening to us, breaking their precious hearts while our courage, our stride, our resolve and eventually our bodies.
You don’t need to remind me.
If the only way you can relate to my situation is to tell me the bad stuff, it’s probably best to keep it to yourself. I don’t need you to detail how I’m going to die. I need support. I need to be able to access my community. I need to be allowed to be on disability support pension without being labelled a welfare burden. I need to know that I can still be bulk billed for the medical services that I depend on to survive. Most of all, I need to keep up the fight.
After all, when someone reveals their cancer diagnosis, that’s the first thing you tell them isn’t it? You can fight this. Not, you’re going to die crippled in palliative care with no hair on a morphine drip.
Please stop telling me how I’m going to die.
I’m still young enough to go out and get hit by a bus tomorrow. Parkinson’s is not my death sentence. It’s my life sentence.