Hello my spangly darlings! Thank you for all the support for Handshake and general nice messages you send me. 😘
As you may gather We are still on the audition trail. This is the big one - the Royal Conservatoire. Whilst my daughter does the stuff, I’m in the cafe surrounded by the thespians and lovies. I’ve been approached a few times making sure I’m ok and wishing my daughter the best of luck. It really is a big family here!
So far, Mr Parkinson hasn’t shown up but it’s been an intense few days, I wonder what these dancers, movement specialists, actors and singers would make of PD.
I know how it impacts my painting and writing but no one sees me wrestling through that…if I were a performer, I’d be on display.
But when you have Parkinson’s so much of it is a performance. A juggling act of ok vs not ok. Of on vs off. Of will vs apathy. We wonder if our shakes, drools, rigid smiles will land on an unsympathetic audience. Or if they find a listening medical supportive audience.
Time into this disease has me less interested in making an audience happy. I don’t apologise for something that is frankly, not my fault nor under my control. But I also don’t want to be in the limelight. My daughter thrives on stage, communicating a story through emotion, voice and act. I am an artist by inclination, essentially an introspective soul. Parkinson’s takes an aspect of that privacy away.
When people have a chronic illness they are exposed. Bodies pierced, bruised, stretched, rattled with pills. Integrity queried, patience stretched, judgement applied. The very act of so called normal function is challenged. Everything becomes a performance. Even in private.
The circus required just to meet basic needs is now being pushed even further where care is denied or weighed against an impossible scale. As if being ill wasn’t enough.
But it should be enough. The agreed medical system says I’m ill, if you are reading this, it probably says you’re ill. So why doesn’t society always agree?
Because compassion isn’t on the agreed list, but productivity is.
Fuck that.
In the face of such brutality all we can do is support, connect and stick up for each other.
As ever give me thoughts and messages.
With love
E xxx
I watched the short doco of Michael J. Fox. And in the apple tv show, Shrinking, Harrison Ford is a therapist who has PD. Information is getting out there. I'd like to write about my grandfather and PD, there's so much to unwrap, I don't know where to start. He had an entire clan helping to take care of him.
I'm a big believer in this: "all we can do is support, connect and stick up for each other." For everything. Illness. Building up each other. Helping each other.
Utterly, utterly spot on. If a specialist says I'm ill, why must I jump through hoops to prove it? I've been arguing this since I collapsed in 1997, and I've had enough 🤬🤬🤬🤬