For Pity’s Sake

“For pity’s sake, please hurry up.” It’s a phrase I used to say often, a reflection of my impatience with waiting. But now, the word pity carries a very different weight for me as I navigate life with PSP.

Pity is something I’ve feared deeply. I don’t want it. I don’t justify it. My concern has always been that as I move further into the realm of disability and require more intensive care, both physical and mental, people will look at me with pity. That I’ll be seen as “less than” because of my condition. And that terrifies me.

Why? It’s complicated. Part of it is stubbornness. Part of it comes from having been a control freak for so long. Part of it is the belittling feeling that pity can bring. And part of it is the simple belief that I don’t deserve it.

Of course, the standard response is: “Why care what other people think?” But the truth is, I’m not refined or evolved enough to be unaffected by others’ perceptions. Maybe that’s a character flaw, but it’s real.

Then a very close friend said something yesterday that truly helped. They told me they don’t see me as pitiable because of how I’ve been handling the PSP journey and who I am/what I’ve done. I probably shouldn’t feel pride in that, but I do. I’ve tried to face this path with positivity, fighting to maintain a sense of meaning and quality of life, and keeping PSP in context, not letting it define me.

I’ve read many posts from caregivers in PSP support groups who say the hardest part is losing their partner, not just physically, but in mind and spirit, as the disease progresses. I don’t expect, eventually, to be any different. At some point, I’ll fade. But I hope a glimmer of the “me” that’s fought so far remains. A bit of stubbornness, a smirk, a humorous moment, or an annoying gesture, something to remind my wife and kids that I’m still the person I’ve always tried to be.

Disability is tough. Watching the descent from the summit isn’t easy, and I know it’s harder for those around me. But as I’ve said many times (and probably sound like a broken record), the positives  far far still outweigh the negatives. The descent has a purpose, as all stages of life do, even if I don’t understand it. So far, the fear of the future has been worse than the reality at each stage and I hope and pray it continues.

Just this past weekend, PSP took a backseat to laughter, conversation, and joy with close friends. Yes, there were a couple of falls and moments of lost balance, but they didn’t define the experience.

Illness later in life comes layered over a lifetime of experiences and a unique personal DNA. We’re all different. From my perspective, looking out at life from a disabled person’s window, I can say that while the challenges are real (and many more are coming), I don’t feel I deserve pity. If anything, pity my children, who I still manage to annoy, and my wife, who has to put up with me. (I’m joking, of course, they’re amazing people who don’t need pity.)

Tomorrow, renovations begin at our house with the knocking down of an interior wall. So my dog and I have retreated to the hills, and my sister’s place, for a few days. It led to one of the funniest moments I’ve had in a long time: my 3-year-old nephew insisted on sitting on my wheelchair and drove it round and round the car park. There wasn’t a trace of pity on his face. In fact, he’s insanely jealous of my wheels. And – it was actually a lot of fun and was not a clever idea!

Wishing everyone well as we each navigate life’s ups and downs.