Finding out that you are sick is always pretty rubbish. But what if you discovered that you were never going to get better? That instead, you were only going to get worse? How would you feel if everyone around you told you that you had no hope, that the only thing ahead was deterioration and misery?
For people with Parkinson’s (disease) this is just daily life. Trying to remain positive when everyone around you is busy eyeing you up with rounded sad-eyes sometimes becomes a bit of a drag. (Pardon the pun. If you have dopamine deficiency, you’ll understand.) How do you deal with people’s confusion, fear and the worst one – deep sympathy?
These days I tend to just tell random people that I have Parkinson’s. It’s usually met with a blank expression. That’s OK. Not many people know what it is. I often say “this is where you don’t know what to say, that’s OK. I had no idea what it was either. Don’t feel awkward, let’s just move on.” I tend to talk a bit about what it is, very top-level stuff, and reassure the person that it’s not contagious. As far as we know. It usually goes down well. But occasionally you get someone that suddenly wishes to share their story.
My absolute favourite is “My Dad died of Parkinson’s.”
Well thank you. That’s great. You’ve just told me you believe I’m on a life sentence. (What people never actually think about is that ALL of us are on a life sentence. None of us are making it out of here alive.) I replied to the person that said this to me “people don’t die OF Parkinson’s, you die with it.” They vehemently disagreed with me, to the point where I just said “Oh, OK then.”
Then there was the person that came up to me after discovering I had the evil deficiency during a short talk I gave at a business event. “You know, my Uncle had Parkinson’s.” (Here we go, I thought,) “he was just like you and full of life. But he went downhill so fast in his fifties. It was awful to watch. (Bet not as awful as for him) Now he’s in a home and can’t do anything for himself.”
Wow. I mean, just wow. I would like to point out I’ve heard this story twice from different people. I don’t dispute their authenticity, but could they not try to – I don’t know – THINK?! I just smiled at them and nodded. I pondered many responses.
“Gosh, I have all this to look forward to.”
“Thank you for telling me I’m doomed.”
“Hey, you might get killed in a car accident next week.”
“This is like telling someone with cancer they’re going to die.”
OK so that last one is a bit harsh even for me, but honestly. I guess when you read stuff like that you stop being surprised that some people still keep their Parkinson’s diagnosis secret. There is such a lot of mis-information and strange attitudes.
What can we do about it? Well, I personally feel that we need to stop hiding it. That’s easy for me to say, but it is what I beleive. I firmly stand by the opinion that we will only stop prejudice and discrimination if people truly saw how many of us there are. Furthermore, as the disabled community continues to scream at the able – “We’re still here!”
There is a huge slice of society that is ignored and disregarded due to the ignorance and / or bias of others. Yes, Parkinson’s is degenerative. Yes, there is no cure. Yes, on paper it looks bleak. Yet there are so many of us fighting as hard as we know how. I’m nearly eight years post-diagnosis. Do I know I have an awful disease? Yes. Can I stop it? No. Yet I take my medication and exercise my little socks off doing what I can to stave it off as long as I can. More on that later. If I had listened to all the official information I think I would have curled up into a ball and wasted away by now. I am certain that I would be in a worse place physically. There is an element of luck, my progression appears slow. How much of that is down to my own dogged determination to not go down without a fight I will never know. Others push as hard as I and will not be so lucky. Does that mean we just box them up and ship them off?
My point is this. It’s OK to admit you don’t understand the nature of someone’s disease or disability. I have been guilty of saying the wrong thing. Many, many times. I have learned to simply say something like “I’m sorry, I don’t know what that is.” Most people will heave a sigh of relief. It’s OK to say “Could you explain that to me, I don’t understand what it is.” Chances are the person you’re talking to will be delighted.
I despise my ailment, my affliction, this, call-it-what-you-will, this thing that tries to claim me. Many will say I’m fighting a futile battle. Perhaps I am, but it appears to give me more time to spend with my friends and family doing crazy things like leaping off jetties into lakes, roller-skating and loving living my life. That’s it really.
Until next time.
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