I have a neurological condition you’ve probably never heard of. I feel a bit weird about including this, because it gives me the vulnerabillies, but I’m going to do it anyway as I think it’s important to see the person behind the screen, sometimes.
Two and a half years with PPPD
As some of you know, two and a half years ago I developed a functional neurological disorder called PPPD: persistent postural-perceptual dizziness.
Basically, it is a software issue with my brain—also known as a neural circuit disorder—where my brain misinterprets sensory input. It’s working on overdrive to make sense of where I am in space, and making constant errors that it can’t correct.
Our brains make prediction errors all the time. Think about miscounting the steps in the dark and thinking there’s one more there, but there isn’t. That jolt happens to me dozens of times a day as my brain mis-predicts what’s next.
It makes me feel dizzy, unsteady, swooshy, tunnel-vision-y, brain fog and mental fatigue, derealisation and intense anxiety, basically because my brain doesn’t know where I am in space and it hates that. On a bad day every physical and eye movement can trigger a fight or flight panic response. On a good day it can feel like I’m looking at the world through frosted glass. The last few months, it’s been mostly bad days.
I’ve been in brain rehab for 2 years, am working through various medications and therapy options, and sometimes it has mostly been manageable. But the last several months it has been progressively getting worse. I’m working through next steps with my people. I’ve got great doctors and therapists on the case and my family have been an incredible support.
I’ve had to give up things that really matter
But I’ve had to pull back and give up things recently that I have been so sorry to lose. One of those decisions was to resign as Chair of Queensland Writers Centre due to my health, as I’ve got to focus on recovery and adjusting to what my new normal is. I have loved serving as the Chair on the QWC management committee and all the work I have done with the centre over the past years. Even though I won’t be around at events in person for a while, I can’t wait to see everyone again when I’m back on my feet (literally).
I’ve also had to give up some festival appearances I was going to do. I’m still around for virtual events and look forward to continuing to engage with our fantastic community online in the meantime.
It’s been a source of focus to continue working on Spec. Fic. Society projects in the meantime during this rough ride. Holometabola is one of the transformative ingredients in my life at the moment, giving me small steps to focus on when doing much more than a few minutes work at a time has been beyond me.
As I continue to adjust to what I can cope with now, there might be more changes I have to make—and being ok with that is something I’m still working on.
It’s a work in progress. Thanks for reading this far, so I could share this.