No one can pretend that PSP is a friend. It’s not nice to watch yourself or a loved one decline at a horrific speed to a condition that, in its final stages, combines the worst of Parkinson’s and Alzheimer’s. I certainly don’t face it with joy, and it’s far from comedic – as the decline happens in real time, it can feel paralyzing.
Many sadly view everything through this lens, where everything becomes secondary to or defined by the disease.
The truth is, my situation feels far less severe compared to many others’ struggles. Simple examples from my perspective include losing loved ones, enduring the pain of war, navigating abusive relationships, experiencing chronic physical pain (thankfully not my daily reality), watching children or loved ones suffer while feeling helpless, or facing the emotional toll of financial ruin.
In short, the world God created is filled with challenges and pain. Why this is so, is beyond my understanding, but I know the balance of good and bad, joy and sorrow, is far above my pay grade. It doesn’t exist in isolation and I believe overall is for a reason and for the good.
As a former consultant, I’ve explored frameworks for dealing with this challenge. Like always, I decided to build my own shown below in this 2×2 grid:
What’s Important to Me (y-vertical axis)
It’s not PSP. It’s my family, celebrating and engaging with them, and the things that give my life meaning, writing, mentoring, learning etc. It’s financial security for my family. It’s living according to my faith. PSP affects these, but it is not them.
What My Practical Time Is Spent On (x-horizontal axis)
It’s not PSP. In total, PSP takes up little time, likely because it has no treatment, making it low-maintenance. My time goes to the activities above but also to living – watching sports, playing chess, eating (too much), sleeping (too little). Exercise is partly for PSP, but it’s a necessity regardless.
When I map these factors, PSP’s impact on my daily life and bigger picture is minor. It’s not white noise, but it’s genuinely not such a big thing.
Some might say this is a logical, not emotional, response, but I disagree. My mental state focuses on what brings meaning, and those things make me happy, satisfied, and feeling blessed. This has taken work!
There is, of course, fear, I’m not a fool. Shabbat was tough because of eye issues and the realization that walking to synagogue is no longer possible. But the vast majority of the time, we laughed, played games, chatted, and discussed other topics, like my daughter’s English and Arabic homework (she’s in grade 10).
We had fun! We laughed! And yes, I felt a bit sad.
Having been caught in the rat race for so long, I’ve gained a new perspective. A year ago, work consumed both axes of my grid. That’s the most profound change in me, more than PSP, though PSP forced it.
No question, I wouldn’t choose PSP, heaven forbid. But I won’t let it take over.
Looking forward, there’s fear, but so far, reality hasn’t matched my fears. If someone had told me I’d be retired, unable to walk, and wheelchair-bound, I wouldn’t have imagined feeling as positive as I do.
It all depends on whether you let it dominate and define you or vice versa.
I choose the latter.
