This week I completed a set of questions for Parkinson’s Life magazine. It got me thinking about how people perceive those with Parkinson’s Disease. My talks cover that off too of course, and it’s something I’ve pondered myself. I sometimes wonder what my friends truly think of this, and my efforts to continue life as normally as possible. I know some of them think I’m crazy. Some of them think I’m deluded and I’ll drop dead early, and some of them think it’s great and I’m going to be just fine regardless of my affliction.
In the end it doesn’t really matter what any of them think. This is ultimately my fight, my battle. Not only physically, but mentally. It would be oh so easy to simply give in. Instead I’m at the gym most days, and despite my fear of falling over my own feet, today I have vowed to get out and go running again.
I hate running. But I hate Parkinson’s more. I despise this thing that’s taken me by surprise. Stealthily trying to hold me back, contain my body and with it, my spirit and drive to succeed. I hate going to the gym, but cannot deny the marvellous improvement I felt in my limbs as I’ve grown stronger. There’s this odd correlation between exercising and feeling better in general, so I shouldn’t be surprised that it helps with the Parkinson’s symptoms. It’s an odd feeling though, realising that one side of your body feels remarkably more tired, and yet you know inside that it’s actually complete tosh. Really there’s nothing wrong with that part of your body. Your brain just doesn’t know it.
What scares me more is the knowledge that the workings inside me, that I can’t really control, are also affected. (Skim ahead now if you get squeamish.) I thought it was really strange that every time I went to the hospital or doctor they’d ask about my movements. No, not my awesome dance moves, (though they’re on fine form) but my bowels and my poo. Why are they always asking about poo? Until one day my Parkinson’s Community Educator (STOP calling them our nurses, it makes us feel like shit) explained that it’s because Parkinson's affects your internal workings too. It was actually quite sobering. Damn. I guess one can always turn to prunes, but… damn. Another thing to add to the list.
Finally, there’s the old issue of guilt. It’s bizarre but for a while I actually found myself almost apologising for not being badly affected. Thankfully I came to my senses a while ago, but it’s a weird thing. People are constantly saying “you look fine” and “you’d never tell” as though that makes it all good. I know they mean well, and it’s kind of nice. However; eventually you begin to think “wait, do they actually believe me?”
Don’t they realise that they might not see it, but it’s always there, lurking like the unwanted Dark Passenger (thank you Jeff Lindsay) that it is. I often wonder if my husband and family are actually sick of hearing about it. I sure am, but it’s hard to explain. It’s ALWAYS there. Every step, and increasingly in my arm. I wonder if I’ll still be able to type quite so well, play the clarinet and piano, just do all the stuff I love so much. My head often wants to lean to the left. I feel myself doing it and force myself to sit upright and straight.
It’s true that you never really understand something until you go through it yourself. Even the wonderful people of Parkinson’s NZ, with all their knowledge and understanding, don’t really get it, though I know they try. I am grateful, and will be forever grateful, for all their help but some still seem to miss the mark. I met a relation of someone linked to the charity, who upon discovering I myself had Parkinson’s exclaimed in horror, “Oh my God that’s awful! And it goes through you completely when you get it young.” Thanks mate. I suppose it was better than the friend who told me her aunt had been “just like you, she tried to pretend she was just fine at first”. I replied “at least it won’t kill me,” to which she answered, “well, not for 20 years.” Wow. I was literally stunned.
What am I trying to say? I suppose I’m silently screaming that I’m still here. I’m still me, still know my own mind, still have dreams and ambitions. I’m still Kitty Fitton, the woman who has drive and the determination to succeed and make my plans come to fruition.
I’ve met some amazing people along the way with this awful thing. I guess that’s one silver lining. I’d like to think that I can count these people among my new friends. We’re a little global network of people completely and utterly immersed in fighting against our own bodies, but it brought us together. We share irritation and very real pain at what has happened to us. We’re told that this degenerative, incurable disease means there is nothing we can do. But we go on. We embrace new opportunities and experiences, we educate, teach others and try to inspire those that have given up that there is life and there is hope.
Never give up hope. We can always do better. I suppose that means I should put on my running shoes and go give that another go.
Until next time,