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I’ve used the hurricane analogy before, but only with hindsight for mild storms. The last few days feel different. It’s not a Category Five – those are still very very far away, hopefully – but it’s at least a low-level hurricane. I had calm for weeks, the eye of the storm. Some thought what is termed a ‘plateau’ would last and some told me not to be negative about the PSP unabated returning. I hoped so too, but deep down I knew better. The storm was coming. And now, it’s here.
It started Friday with a fall, then two out of three days of incredible slowness, balance issues, and shutting down completely. Less freezing, more like the battery running out suddenly powering down to lights on only…sitting in a wheelchair, at home, or in the car as a passenger, completely out of it.
Most of today was lovely. I spent time with my sister, my mother, and most of the family at my sister’s house. We laughed, shared stories, and for most of the time I felt almost normal. I even had a sleep in my nephew’s bed. But a few minutes before leaving, everything changed. I started what I can only call a forced shutdown – not a freeze. My eyes literally wouldn’t open more than 1% or 2% for the entire journey home. I couldn’t speak properly and had to be guided to and lifted into the car. Thankfully, I stopped driving months ago. After a few hours of sleep, I feel better – well enough that I then managed in typical fashion to drive my my toes into a wall when guiding my wheelchair from the bathroom to where I am sitting now (pure stupidity not PSP :-)).
(For those unfamiliar with PSP: these episodes can happen when the brain struggles to manage movement and energy. It’s not sleep, and it’s not a faint. It’s a sudden loss of voluntary control – eyelids won’t open (sometimes called eyelid apraxia), speech stops, and the body feels completely drained. Rest usually helps, but it’s a stark reminder of how unpredictable PSP can be.)
Why share this?
Because just days ago, I was euphoric, I wrote a book in under a week! I knew the plateau wouldn’t last, and sadly, I was right. Sometimes I’m told I’m too positive when writing about this devastating disease, sometimes too negative. Tonight, no one will accuse me of being too positive. This is a glimpse of what’s ahead. Yet…
Does this change the message of the book I proudly published last week?
No. It reinforces it. This is my challenge, and I need to dig deep. I couldn’t write another now book two days after publishing, but I hope and pray for another plateau. I’m grateful I got the chance to get my message out and that I published when I did, it felt right, and I trusted that instinct.
Even in this storm, there’s joy. Time with my daughter’s soon-to-be family was incredibly special, as well as lovely moments with my own family and friends. And the pride of publishing a book about my faith, something unique for me. Now I wait nervously for reviews, but even when PSP roars like a hurricane, life still has quality. That’s priceless.
And here’s something that truly lifted me: receiving photos from people holding their first copies of my book. My young nephews don’t really know much about PSP, they just see an uncle who has a car as his way of getting around, and they constantly want to drive it around the house. That’s cute and makes my day feel very special. Life has a way of going on.
These are hard things to write about, but this is my journey. My plan for the next few days? Rest. Plans often make Him above laugh. Who knows? Maybe I’ll plateau and write another book (a joke – but with me, who knows?).
The storm will pass, or at least ease in phases, with calm in between. A lull, a plateau, will hopefully return. And even in the darkest house, there are moments of light. My faith remains strong, as does the love of those who support me.
