The last few weeks have been rather tough. In fact, rather tough doesn’t really even begin to cut it. Yet on we go. The world continues to turn for us, though sometimes it’s hard to understand how everyone else is out there living their lives like nothing has happened. Death has a strange way of making you look hard at your existing life. It left me wondering many things. My life, how long I may expect and how much good quality of it I can reasonably expect.
You’ll be surprised to discover I don’t really like thinking about this. I have come to realise that Parkinson’s progresses in a strange way. One day you’re fine, the next you find yourself really struggling to bend down to perhaps dry yourself after a shower, or to pick up more of that endless stuff the children drop onto the floor. I caught myself thinking “oh that was difficult” then realising with horror that this was probably down to my condition and not age.
Some of my friends have slowed down / allowed themselves to relax a bit about exercise. In my ‘other’ life I perform stand-up comedy, (yes, really) and often hear lots of jokes about going to gym. Or rather, not going to the gym. It’s such a laugh, I bought a gym membership, one day I’ll visit it, hahahahahahaaaa. Whenever I hear these jokes I feel strange, empty and more often that not, angry.
Those of us with Parkinson’s don’t get a choice over doing exercise or not. Well. Clearly we do, but personally I like being able to walk, run and chase my children about. I have said this before, but I will say it again; I hate exercise. It’s annoying, takes up heaps of time up that I could have better spent reading / gardening / having fun, and I can’t do it well. Only this morning I attended a Pilates class (“Pilates is soooo good for Parkinson’s you know”) and had to blink back tears a couple of times as I struggled to contort my body into a strange shape and try to remain dignified.
Yet still I go. At least once a week to Pilates and then twice more to some kind of rigorous class. Why? Because I can feel that despite my Parkinson’s I am making progress. I may even manage to roll like a ball sometime. I have a ‘hollow’ back and it curves the other way. Whilst everyone else (even the fat old ladies) rolls about laughing, smiling and having fun being silly, I jerk about maniacally, trying desparately to right myself.
I feel silly, I feel awkward. Ungainly and ugly. A stupid thing. What am I doing here? Look at that graceful beautiful creature next to me holding her feet with her hands as she does this roll-thing effortlessly. It’s hard. It’s so hard. I feel tears rising and I try to blink them back before anyone notices.
Yet. Afterward I feel wonderful. I keep going. Soon I can lift my taibone a little whilst everyone rocks. Perhaps… perhaps one day I will make it. But I won’t if I sit at home feeling sorry for myself.
Believe me. I have plenty to be sorrowful about. I am sad about the breakdown of my marriage. I ache for my children when they are not with me. I am financially unstable and try not to think about the future. Like so many others I was denied greiving with my family due to Covid-19 when my Mum died. I learned this week my friend’s husband has a cancer that is terminal. I took my children to a funeral of a classmate last week.
Then there’s this neurological disorder I have. It goads me. I realise sadly I do need more medication. This saddens me because I know it means things have got worse inside my body.
So I fight. I fight because I have no choice but to put myself through this daily if I am to survive this with quality of life. I fight because I want to dance with my children. I want to dance for myself. I sing, though my voice may be altered, I sing. It’s not always pretty but I refuse to be quieted.
On I go. I’m not special. I’m not a fighter or a warrior or anything particularly brave. In fact, I’m just a woman with a scary neurological issue that currently cannot be fixed. I just want more time, like we all do. Not a patient, not someone to be pitied. I’m still here. I want to be me.
Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.
Find out more at her personal site below.
Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)
Find out more at her personal site below.