Being sick is no joke. I may poke fun at things that have happened to me whilst living with Parkinson’s, yet I can assure you it’s no laughing matter. Having said all that, it’s also something I have to deal with. If I am to lead a somewhat normal life, still play and laugh with my children, and live a life that’s full, I must learn to put Parkinson’s in its box.
This is not easily done. I’m not being flippant about the seriousness of the situation. However, I am determined that my life, and the loved ones around me, should not be marred by my diagnosis. I mean, of course in some way it is, that cannot be avoided. We don’t talk seriously about it much, it’s scary, frightening, and full of unknowns. However, everyone’s lives are full of the unknown. That doesn’t mean we don’t go there.
Still. I cannot hide the fact that this is happening. I finally understand the awful, painful reality of that word ‘degenerative.’ I’m terrified as to how much more I will experience symptoms that one day I may not be able to control. Yet for now, I can continue with my life. To the untrained eye I appear perfectly healthy, yet occasionally I find things hard to do. Perhaps my arm aches, my legs hurt. Overall this does not affect my abilities, but sometimes, unmedicated, left untreated, it can.
Exercise helps, as I have written before. There was a study this week from Catholic University of Rome’s Faculty of Medicine and the A. Gemelli IRCCS Polyclinic Foundation about this very subject. I try, I really do. Yet I have a full time job, four children, an ex-husband that does his best yet in reality I’m still left with 90% of the parental ‘donkey-work’. I must keep house, do dull stuff like laundry and cleaning, and then there’s this crazy idea that I should have a personal life. My fiancee (gosh I feel young writing that) and I don’t get a lot of time just the two of us. That’s OK on the whole, we both have children and understand they are the ones that come first in our lives. Yet – (and this is my point) sometimes we feel that we’re short-changed.
For me, I have given up most things for myself that I do for myself. My entire life I have yearned to play the piano. I now fear this may well be out of my reach forever. To play reasonably anyhow. I used to play the clarinet. I took it up when my daughter was born. I was pretty good. Then my son was born and I had to stop having lessons. Besides, I had a corporate full time job and two small children. I had no time for my clarinet lessons. I floated the idea once and surmised I may in time be able to teach others myself. I was told that this idea was ridiculous, there was no way I could do that. I was given a saxophone for Christmas that year. It was beautiful and RED. I loved it, but was saddened and a tiny bit angry too. I felt it was a reminder of everything that I wanted, but could not attain.
I’m 16 years older now. I still cannot play the saxophone properly, though I did finally get some lessons. A month after I began my new partner had a cardiac arrest and almost died. That put paid to those lessons. So much for my personal life, I occasionally think I’m cursed. I watch my 18 year old daughter engage in music tutoring after only 4 1/2 years of tuition and I feel wistful for what might have been. Music was my first love and the only subject I ever snagged a top mark in. Yet my children needed me there and to be honest, I don’t REALLY regret it. I loved my time as their Mum at home. I mean, my career nosedived and my music skills are still shambolic, but as I watch my children grow into strong, independent young people I am happy that I was an integral part of making that happen.
The sad thing of course is that there was supposed to be the ‘other side’ of parenthood. The years when they have flown the nest and possibly decades of ‘just the two of us’ loomed. Parkinsons throws it all into question. Or does it? For myself, I choose to allow it to focus my life. To bring into sharp clarity the fact that I need to drink every drop, squeeze every last dreg out of this consciousness that we call life. Parkinsons be damned. I’ll climb those hills regardless and scream from the rooftops. I’m not going down without a fight, and I will live my life to the full with no regrets.
Carpe diem. Until next time.
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