I’d intended to write this at the end of last year but, as you’ll see, a few things got in the way.
At first, I was putting together a pretty dark piece about having Parkinson’s for the last 10 years. It was full of introspection and a lot of soul-searching, mostly about how somewhere along the way I’d forgotten how to be me. The spark for that actually came from the song How to Be Me by Ren. Wish I could claim that idea as my own, but sadly not.
Then apathy kicked in, which is one of the less talked-about “benefits” of Parkinson’s, and the whole thing stalled.
And then I got a phone call, completely out of the blue, at very short notice.
Which brings us to… okay, so here’s a sentence I never thought I’d write: on 1st April this year — yes, April Fool’s Day — I had successful brain surgery.
To be more precise, it was the first stage of a two-part procedure called Deep Brain Stimulation (DBS). For the first operation, I was awake while the surgical team drilled two small holes in my skull and carefully inserted two wires into my brain. A week later, I went back under general anaesthetic so they could implant the device in my chest that would eventually send signals to my brain and connect everything together.
After that, I had to wait around six to eight weeks before the device was switched on.
The difference has been incredible. Life-changing almost feels like an understatement.
Anyone living with Parkinson’s, or any other chronic illness, will probably understand what I mean. Every day used to involve carefully planning even the simplest activities. Things like having a shower, going for a walk, eating meals, driving or using public transport all needed thought and preparation.
That alone was exhausting before I’d even done any of those things. Add in going out for dinner, travelling to see friends and working a full-time job from home, and it could be overwhelming at times.
I’ve just come back from a cycling holiday in Greece where I cycled for six consecutive days.
Last night, I went out for a beer and some food without giving any of it a second thought.
It’s been quite emotional and, yes, there have been plenty of tears, but all of them happy ones.
To all the family and friends who have supported me over the last ten years or so, you know who you are — thank you.
Those two words don’t really seem enough, but they’ll have to do for now. ❤️
