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Today, I want to take a moment to be positive and full of gratitude. I know there are many potential negatives to focus on when writing a PSP blog, and so many of us living with this diagnosis are constantly caught between pain and joy at a holiday time. But for this moment, I am choosing to focus on the joy…and shock.
In just over an hour, my own special “holiday season” begins – a time marked by the birthdays of my three children. It is a simply special time of year for me, flooded with very happy memories spanning 23 years – it is the thing I am most proud of by a mile. On another far more minor topic on top of that, I truly can’t believe people are buying and reading my book, a book very personal in many ways about my journey, faith and PSP, which is exposing for a shy person like me.
To date, 112 orders have been placed – 93 in paperback – and there are already eight 5-star reviews. For a self-published author writing on the incredibly niche intersection of PSP, faith, and Judaism, the stats tell me that average lifetime sales are often far lower than what I’ve sold in just over a week. That isn’t just surprising; it is deeply humbling.
To those who bought the book because you know me: thank you. Your support is a lifeline. To those who bought it without knowing me at all: thank you. That means you found value in the work itself. Either way, knowing that I have created something of interest – or simply that I have friends and family who care enough to show up – fills me with a shy kind of pride.
I’ll admit, I am a complicated person. I detest “selling” myself (which is why you won’t find a purchase link in this post). Yet, I am also shy and super sensitive yet a total data freak; I confess to checking the order count about 50 times a day. I hope for reviews, yet I dread negative feedback. I crave privacy, yet when I commit to a cause – whether as a blogger and advocate on PD and then PSP, on LinkedIn, as a cantor on High Holy Days, or now as an author – I am willing to step into the public eye.
Some might call that glory-seeking. It truly isn’t. It is simply stubborn (some call it resilient) me, stepping up when it matters, using skills I have left to take a stand.
Whether I like it or not – and I don’t – I have PSP. It is gaining on me. But this illness has also thrown open a new window of opportunity to learn and grow. I know I shouldn’t care if I sell books or if people read this blog, but hand on heart? It does matter. It reminds me I am still here.
This sense of presence is vital to me right now because, as I mentioned, tomorrow kicks off a very special time for my family. I won’t embarrass anyone by sharing the details, but the anticipation has me looking forward to reliving cherished memories and creating new ones. It is a reminder that even with PSP, there are milestones worth celebrating.
As you celebrate this season and the approach of 2026, I hope you have those special times with your own families. If you have PSP or care for someone who does, I pray it isn’t too disruptive. This disease doesn’t always travel well, but I hope you find a moment of peace to enjoy your loved ones. And for those who have lost someone dear, may you find comfort in the memory of times past.
Thank you for supporting me (especially my wife!), despite my crankiness, mood swings, and impulsiveness. Today, I choose to be positive. I hope you can too.
