When I tore my ACL and had it replaced, or when my appendix nearly ruptured, the pain was intense but simple to understand. There was a clear cause and a clear fix.
Progressive Supranuclear Palsy (PSP) is different. It is strange, almost surreal. The brain controls everything, yet with PSP, it does so unpredictably, sometimes fully, sometimes partially, and never in the same way twice.
The Relentless Progression
Yet it keeps on progressing, and study after study indicates it induces a terminal result in just a few years, but it is hard to imagine sometimes. Living with PSP feels like trying to grasp something that is constantly changing shape, even as you know where it ultimately leads.
When the Brain Plays Tricks
Doctors tell me my eyes are perfectly healthy, yet my vision is deeply compromised. Today, I could not read my book in synagogue. My eyes are fine, it is my brain.
I move slowly, my muscles feel rigid, yet I have no injuries. I work out diligently: Pilates, acupuncture twice a week, cycling most days, yoga nearly every day, and physiotherapy twice a week. Still, the brain overrides it all.
Balance? Forward is okay. Backward? Impossible. Standing straight means falling back.
Symptoms shift like shadows. One day, all of them; another day, just one. Sometimes they change hour by hour.
The Physical and Emotional Toll
My throat muscles are compromised, putting me at risk of choking and possibly needing a feeding tube. Yet again, it is not the muscles, it is the brain.
And it is not just physical. PSP affects mood and mind: apathy, rage, insomnia, anxiety. It must also be confusing for caregivers and family. There remains no cure or treatment, and the condition inches forward relentlessly.
I am not saying anything about other illnesses, but the brain is simply a strange beast.
Fighting Back
I am endeavoring to fight it and keep living positively. My resolve even produced a published book in a week. Yet PSP feels like a strange, ever-evolving bedfellow: always present, always shape-shifting.
Other neurodegenerative diseases also impact in similar ways often target memory or cause tremors. PSP feels unreal, yet it is painfully real. It plays games with my mind, literally.
I am shape shifting too
PSP is a shapeshifter, unpredictable and relentless. But while it changes form, my determination remains constant. It has changed my life beyond comprehension in every way. I do not dwell on what I have lost. I am also a shapeshifter and am responding by finding new meaning and avenues of continuing to be without trying to compare and contrast with what was and what could have been.
