Dear R & R,
I wonder how old you are now. Presumably old enough to understand the enormity of what you are about to read.
May 6, 2021. The day my life changed forever. Being told that I have an incurable, degenerative neurological condition at the age of 36 was many things, but most of all, it was infuriating. How dare life hand me such an unfair card, especially when I have two very young kids to look after and my whole life ahead of me?
Why me? Why me? Why me?
Parkinson’s disease made me realize that life is short and time is precious.
So, whilst the world started battling Covid 19, little did I know that I was unknowingly battling an invisible monster that was slowly raising its ugly head: Parkinson’s disease. To be specific, Young Onset Parkinson’s disease.
When my symptoms first started, I put it down to postpartum strain as did the various doctors I met. Perhaps nobody suspected it in someone like me—a woman in her mid thirties. My symptoms were often undermined, sometimes ridiculed. After almost three years, I received a diagnosis. I was scared of course, but mostly relieved, as I finally knew what was happening to my body.
Processing this news was hard, but what was harder was helping our family and friends process it. The news was often met with denial and/or toxic positivity. As a culture, speaking about rare physical and mental conditions makes us uncomfortable and we wish it away with our defence mechanisms. This is hugely unhelpful to the person living through the condition. However, I am convinced that the two of you are empathetic young men. Perhaps Parkinson’s can take some credit for this.
Parkinson’s disease made me realize that life is short and time is precious. It gave me insight into who really cares and helped identify what I like to call “surface level” relationships. It made me more ambitious, as I am aware that my body today is the best that it can be thanks to the condition closing in on me slowly—day by day. It taught me to be grateful for my life and to appreciate the beauty of everyday moments.
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Finally, it made me celebrate the small wins and to never take a healthy body for granted.
I don’t know what tomorrow holds. I don’t know how my condition will progress. I don’t know if and when a cure will be found. This life, however, needs to be lived and live it, I will. You both know this far too well, know me far too well, to think that I would approach this in any other way.
I have often wondered whether you found something amiss in the way I moved, walked and danced. I am sure you must have because there were snippets of conversations that you had with me about “my hand working slowly” “messages sometimes go slowly to the brain, Mummy” and so on.
I want to remember being surrounded by pure innocence and unconditional love.
I sincerely hope that you don’t define me by my condition. Perhaps that’s why I strived so hard to give you both a normal childhood. The reason why I am jubilant when you sweetly respond by saying “writer” when someone asks you what your mother does.
When I look back at our photos, from when you were both little boys, I don’t want to remember the struggles. I want to remember being surrounded by pure innocence and unconditional love.
I want to remember that day at the park where you both ate loads of ice cream. Not that I was finding it hard to walk.
I want to remember your squeals of excitement as I opened a new tub full of colourful Playdough. Not my shaky hand as I tried to gain control over a pair of scissors.
I want to remember all of our crazy dance moves. Not my awkward attempts at seemingly simple steps.
I want to remember our numerous reading rendezvous. Not me trying to slowly turn the pages.
So, I try to focus on the positives. Because however much I would like to, I cannot stop time from slowly robbing us of these precious years. And when I look back, I want them to remind me of happiness—not hardship.
Be brave and be kind. The rest will fall in place.
Lots of love, Mummy.