In Harry Potter (yes – I am a big fan), one of the most intriguing elements is the name you can’t mention – “He Who Must Not Be Named.” In my current life, there’s a topic I’ve come to call “That Which Must Not Be Named.” Like a shadow that once loomed large, it’s a fear I am learning to accept and face. Unlike Harry, who had to step up and defeat Voldemort, I have accepted it and, to be brutally honest, am not paying too much attention to my fear.
Surprisingly, I was asked about “That” a couple of days ago, and as I feel positive about the answer, I wanted to share it. It kind of surprised me, and I believe it’s relevant for many. People close to me are often shocked by my frankness – please know that this post comes from a strong, good, and positive space.
A professional asked me during an evaluation earlier this week: “Do you think about death? How do you feel about it?” It’s a real question on many levels and applies to all of us, no one beats the clock, and no one knows when it will come.
From a spiritual perspective, it’s also a very relevant question for me. As I still hope to lead prayers on the Jewish New Year, one of the verses I will chant says: “Who will live, who will die; who in their due time and who before…” With a disease like Progressive Supranuclear Palsy (PSP), it’s something that clearly crosses my mind.
Initially, after my diagnosis, the thought of it (“It” is more comfortable for me) and the potential period before it, when I may not be able to functionally live, was pretty constant. It drove me to make sure that the things my family would need were taken care of as much as possible: financial planning, end-of-life instructions, a will, etc. It was, for me, a rushed checklist approach to life, and it gave me important focus. As the Brit in me started to deal with it, it also gave me a fair amount of black humor to work with.
But since that was largely completed, I’ve found relative peace with my diagnosis and retirement. I can honestly say that it’s not something I think about for 99.999% of my time, nor does it especially worry me.
Apart from keeping up my daily routines, exercise, prayer, sleep, learning and writing, family time, stupid humor (aka annoying my kids), mentoring, watching sports events on TV, and playing chess, I care much more deeply about the quality of the life I have and, far more importantly, about the present and the futures of those around me: my wife, kids, siblings, mother, etc. Now is not the time for Dark Clouds!
I know it sounds like a cliché, but it’s how I feel and my reality. While I don’t have remaining ‘bucket list’ items, I want to enjoy life and give meaning to it for however long I have.
I also have a list of items between me and my Maker that I need to improve and work on. I know my grades need a lot of work, one of the reasons I’m praying and working on aiming for much much more time 😊
Do I have fears? Yes, many. Is this one of them? Not especially. Is it on my mind? Not significantly.
Why not? I can’t really answer that definitively, but I think it’s the realization that the practical things are hopefully taken care of, some of the “Why worry” attitude that it is simply something I can’t influence by worrying about it, peace due to my spiritual perspective, and a positive approach to life. I think in an odd reference back to the title, like naming Voldemort to strip away his power, acknowledging “It” has helped me disarm its hold over me.
Apart from the above – which are all selfish – life is not about “me” or “I” and removing this gloom is also critical to those around me. Helping myself I think will help them.
If someone had asked me 5 or 10 years ago, I might have brushed it off, unaware of how a diagnosis like PSP could sharpen life’s focus. I know others facing similar challenges might not find the same peace, some may wrestle with fear or uncertainty daily, and I can’t claim to have all the answers. But at least from this sample size of one, it has not, so far, proven to be as big a concern as I once thought.
I obviously can’t speak for anyone but that is how I feel, at this moment.
One Response
Good morning Ben, from Bonnie Scotland,
I am finding your posts very inspirational as well as seeing you as incredibly brave.
I have had my diagnosis of PSP confirmed (as much as my Neurologist is willing to commit!) My circumstances are nothing as severe as yours but coming to terms with it is obviously similar.
A trip to Texas to watch the Dallas Cowboys v Washington Commanders in October this year comes from my bucket list.
I have been trying to reduce the “noise” of life and give my head the opportunity to write poetry (absolute beginner) and follow some wonderful people on Substack. are you a member by chance?
I have started to follow Vera Herself who has recently visited a bookshop near Istanbul and writes wonderfully of her experiences.
As they say here in the Borders of Scotland – safe oot, safe in.
All the best, Alex