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While my journey is defined by Progressive Supranuclear Palsy (PSP), a rare and challenging condition, the lessons I’m learning extend far beyond it. Some have noted that the insights gleaned from navigating this path – totally unwanted but challenge accepted – resonate universally.
I’m not an arrogant person, at least I hope I am not, but I feel fortunate to have chosen to chart my journey from the moment of diagnosis. It didn’t unfold as I imagined. I thought I’d write occasionally about the latest 10k run, new treatments for Parkinson’s, and my clumsy “Ben moments” – like the time I walked into a lamppost and apologized to it. Life had other plans. PSP took center stage, and writing – my coping mechanism – accelerated as the pace of change did. Looking back, I realize these reflections aren’t just about PSP.
They speak first to those facing other terminal illnesses or serious conditions, where families wrestle with pain, sadness, and the need for coping strategies like humor or expressive writing.
But they also touch on something broader: our general human experience. Ultimately, we all face the same end; the only difference is when. For those with conditions like PSP, that reality is stark, underscoring, for all, the importance of caring for loved ones and making our wishes – especially around end-of-life care – clear while we still can.
It also touches the kids and grandkids and wider families of those who are suffering. We may see a man or woman in a wheelchair or bed, unable to speak or articulate themselves. Yet we should know that they are far more than that. They are probably looking at you with loving tender eyes and you should know that they have a whole life of real living behind them and remembering that may unlock a very different perspective.
If I were to distill a broader message, five pillars stand out:
A Positive Attitude and Endless Resilience: Viktor Frankl said, “Everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.” This truth rings especially clear in challenging times. It’s easy to say and much harder to live, and I don’t always succeed – but I strive.
A Nurturing Support System: The unwavering presence of family and friends has proven to be an indispensable lifeline, a critical resource that must be actively cherished. You go into battle with illness alongside those who stand with you, and having a strong squad by your side is invaluable. Invest in it all the time.
A View Outside of PSP: Each day, it gets harder. Illness can become a vortex that consumes everything. Keeping a window open to life beyond PSP is like letting in a fresh breeze – it reminds me that PSP must not be the center of the universe or of my families (despite the blog ).
Keeping Grounded: Humor or at least distraction matters. For me personally, I find genuine laughter in life’s absurdities. PSP provides plenty of material (far too often in fact). Even now, as I write this in the middle of the night, struggling to see the screen, with aching neck and shoulders, confined to the downstairs of my home – my “day of work” replaced by yoga, pilates, physiotherapy, and perhaps more yogurt or a smoothie – I chuckle at the absurdity. None of this is what I would have chosen six years ago (and all of which I would have thought I would detest), but laughter lightens the load.
Faith (or a Sense of Greater Meaning): For me, faith is rooted in G-d. Others may find their anchor in philosophy, nature, or purpose. Without my belief in a Just and True G-d, who I trust guides me on a path He knows I can handle and has a reason for, I would truly struggle. This doesn’t mean I understand why these things happen – I don’t. I can’t explain why bad things unfold. But I hold onto the conviction that there is a reason, even if it’s above my pay grade.
I can genuinely say I am a happy person (I may not be in 30 minutes after Yoga or for the few moments after a fall or choke, but broadly). That happiness exists despite – and perhaps even because of – the challenging path I’m on. Trust me, I would rather a very different path because at 50, no one wants this. But life is about how we deal with the situations we are given.
This blog, initially a personal therapeutic outlet to reinforce these views, has evolved into something more. As PSP continues its unpredictable course, I hope that in some meaningful way, my reflections help others navigate their own challenges.
One final note – I have so much to learn from others, and in fact I have been fortunate to have some friends who sadly (they have not been so fortunate) to be in difficult situations and I have truly been shaped by them. This is a mutual learning process for all of us. I just happen to be on a Phd of a specific section of life at the moment.
