Faith Is a Massive Factor for Me

One of the PSP-related charities wouldn’t let me write a post about faith. The benefit of having my own blog is that I can actually write what I like, so I figured I can’t leave this in the background any longer.

I’m not preaching a particular faith to anyone – that’s not my place – nor do I believe that those without faith are any different. This is purely my experience.

Faith is probably the biggest single factor that keeps me positive and focused on moving forward. Family is probably the second, but they are deeply intertwined.

It’s not the belief in an afterlife that drives me. I do believe in one, but I have no idea what it would look or feel like, and frankly, it’s way above my pay grade. What I do believe is that I was created with a mission and a purpose by G-d, and that this challenge is something I have the capabilities to rise to. It’s not out of my reach.

Whether I have a terminal illness or not, I believe I have a role to play. I am useful – and to be very honest, I see it.

In my personal opinion, I have a much greater purpose now than I did during my 28 years as a consultant. That work was important, but it doesn’t compare to the time I now have to write, discuss, debate, and support people with PSP and other conditions. My writing and advocacy – for my country and about faith – have become central to my life.

I would never have chosen PSP, and I still wouldn’t. It’s a horrible disease. My eyes are failing (this screen is increasingly a blur), I’m slow, walking is hard, and my balance is shot. I know I’m still early in the storm. But PSP has given me so much meaning and precious time with my family – time I didn’t really have before. As a partner in a big firm, I was constantly travelling or working.

I last wrote about faith in January 2025, when I still believed I had Parkinson’s. After writing this post, I went back and reread that one. What strikes me is not only the similarity in tone and belief, but also how much deeper my faith and sense of meaning have become – even as the diagnosis worsened from PD to PSP, and my physical condition declined from running 5Ks to using a wheelchair. The direction has been undeniably negative, yet my spiritual clarity has only intensified.

I figure that most people have their share of good and bad times. I’ve had both. Wonderful years – getting married, having kids, going to university. But also dark times – poverty in my youth, family challenges (an understatement), and other difficulties I choose to keep private.

Right now, however, I am satisfied. In some ways, I’m the most content I’ve ever been, despite the impending further stages of PSP. The pain and discomfort are more than outweighed by this sense of purpose.

People will disagree with me – some strongly – but in my view, if I’m to be given a certain amount of sadness and suffering, I would much rather it be me than my loved ones. And if I had to choose, I’d prefer physical suffering over emotional or psychological pain.

I would never say I’m lucky. I’m not. I have PSP – an enormous challenge. But I do believe I’m blessed. Faith is the key for me.

Viktor Frankl, in his incredible book Man’s Search for Meaning, wrote two quotes that inspire me deeply. He wrote this after surviving three concentration camps, including Auschwitz:

“Those who have a ‘why’ to live, can bear with almost any ‘how’.”

“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.”

With a ‘why’ we can bear the ‘how’ and attitude is something we can choose.

As I said at the beginning, this is a deeply personal blog. I thank G-d (who I believe is a universal one not limited to one faith) for the blessings He gives me and for the opportunities I have had. I need to do more to connect to Him and am working on it and I have hopefully lots more to contribute despite declining physical capabilities.

I wish everyone well.