I never knew how much it is possible to change — and how the things that bother you can shift entirely.
At the weekend, my wife and I were out with the dog (me on a ride, her on a walk). A little kid marched straight up to her, stared at me in the wheelchair, and asked, “What’s wrong with him?”
Yesterday I sat through a meeting with the neurologist discussing a PEG feeding tube.
Eight months ago, either scene would have crushed me — a cocktail of fear, self-consciousness, and depression.
I’m not crushed. I’ve adapted. I think many of us do.
It’s happening at breakneck speed, and sadly it will probably get much worse soon. Still, I intend to keep adapting — finding new footholds, new ways to live.
We’re all different; we cope in our own ways. But what’s the alternative?
It’s not easy. I’m genuinely scared of what’s ahead. Yet I’m positively stunned by the human capacity to adjust.
My biggest dread was losing dignity — becoming someone dismissed, overlooked, pitied, the “poor suffering soul.”
That fear lingers, but I’m confident the people who matter to me won’t see me that way.
You’ve probably noticed I’m writing at a furious pace. Partly because I know the ability may soon vanish, and I have things to say. Writing is my coping mechanism; each of us finds our own.
I watch caregivers in the Facebook groups give everything for their loved ones. It’s distressing and heart-warming in equal measure.
I can’t know how patients who’ve lost speech truly feel, but I sense many are at relative peace. A few people have told me I’m giving voice to thoughts their loved ones can no longer express.
I can’t speak for everyone, and I’m still far from the critical stages (please God), but I’m fairly sure most would nod — or signal somehow — that they’ve managed to adapt, at least to a degree.
Of course it fluctuates. There are moments of torment, restlessness, sadness. Surprisingly, they’re fewer than when I was a stressed executive sprinting through airports.
We adapt. We learn to adapt. PSP is a fast-moving fight — a rear-guard action. We pull back, regroup, and dig in at the next defensible line. For me right now, that means obsessive care with swallowing and balance.
Side note: For five years I’d sworn off red meat, denying myself steak and lamb cutlets. I relaxed the rule — then the choking started. Adaptation fail. Steak is off the menu for good. Onward.
We possess a tremendous capacity to adapt. Let that give us all some hard-won comfort
