🎤 MY LIFE WITH FTD 🎧
CHAPTER ONE: pajamas have no pockets
Last year I was dignosed with frontotemporal dementia (popularly known as FTD). It's some sort of weak sister form of Alzheimer's Disease which has been around for 100 years. With no cure or treatment, patients live an average of 8 years after diagnosis. FTD is the cover term for a frequently misdiagnosed group of brain diseases that eat away at personality and language. For some, FTD evolves into Alzheimer's, but for many it just remains, relentlessly chipping away until nothing remains of the kindly, intelligent gentleman you once knew, perhaps even loved. And he likewise loses what you meant to him, As a writer, I hate telling tales that have no hope of a happy ending. That goes against my basic desire to spread smiles and laughter (often at my own expense!) to make the world a better place.
But I write this primarily for family and friends who have been with me on this long journey from cradle to dumpster, along with others who have joined in recent years (Godbless Facebook). I hope you have had a few smiles along the way. I know I certainly have. I once asked one of my (seemingly countless) physicians how long life lasts. His less-than-helpful response: "From the instant we are born we begin to die. So pick your own number, and try to beat it. That will be seventy-five dollars, please." My number was always 100. I felt I was entitled to a full century of troublemaking and poetic pondering. After all, my mother's dear mother Mildred Hussey Scott, had made it to 105, without much complaining. I realized that as a male I had to knock at least a decade off that number, but 96 was okay by me. But 75 was not. Heck, O Holy Arbitrator, I'm just getting started! I still have to figure out how to write the Great American Novel. (I welcome suggestions. I know many of you harbor a similar desire, and I wish you well.) So it's a numbers game, is it? If so, then I begin my countdown clock, and sharpen my pencil to meet 2024 with a case of hugely gratifying exhaustion and sense of pride in my final literary submissions, hopeful that a bed is awaiting me somewhere between Kurt Vonnegut Jr. and Ray Bradbury. Hey, shut up! This MY dream blog.....
My first thought was to try and summarize my life, but I know you all have somewhere else to be, and all I have to work with is what is rising to the top in my brain this day, so know that I promise to return to this blog once yearly (probably more frequently than that!) for as long as I remain intelligible, and I will hit upon key life moments each time.
I had a good chuckle last week when I complained to my loving wife, Lorie, that my current pair of pajama pants bottoms had no pockets. She gave me that "you idiot!" look, and assured me that NO pajama bottoms ever had pockets. Since she is always right, I crawled off into a corner and lamented my crumbling memory, but I still think I'm right.
My Balance class: Every Thursday morning at 8:00 I join 15-20 other boomers in a one-hour fun group activity at the Plainfield Senior Center in Plainfield, Connecticut. I don't get out much anymore, so that could be why I enjoy this so much. I seem to have become the "Norm" of this group. If you remember the character from Cheers who was always greeted with cheers of "NORM" whenever he entered the bar. Well, for reasons that I do not understand I receive cheers of "BEN" whenever I enter the Senior Center. It's a powerful way to start the day. Here we are in our Christmas group photo. That's me on the far right (as if you couldn't guess).
Our parents always looked out for us and kept us far away from any hint of a criminal lifestyle, right? Then why do I remember my dear Father (gone now these 20 years) sending me to the grocery store to purchase cigarettes for him. "Get yourself a comic book while you're at it," he said, handing me a twenty. What would be my next step toward adulthood, a beer run? They are lucky we did not all turn out to have careers in waste management. (That only works for those of you who have seen "The Sopranoes.")
Comic Books: My childhood was marked by my appreciation of comic books, especially several Walt Disney titles, and very especially Uncle Scrooge.
Today, our youth mainly know Scrooge through the popular Ducktales TV series, which is fine, but it misses what hooked me and changed my life. The comic books introduced me to the writing of Carl Barks, easily the greatest story teller of the form, and he did it without superheroes and the usual ton of comic book violence. Barks did not invent the Uncle Scrooge character, but he made Scrooge the ultimate voice of wisdom in comics. Every story was fun, of course, but it also contained a very cool history lesson, plus frequent opportunities for time travel to explain in art and text where the history came from. Carl Bark's Uncle Scrooge was responsible for my love of history and story telling of all kinds. I actually learned to read through my mother's patient re-reading of these ten cent masterpieces to me. I was soon reading them without help. I realize I am disclosing to my fellow second graders why I was such a good reader. They thought I was just a show off. Little did they know I had just been on a magical journey with Uncle Scrooge and his equally ignorant nephews Donald Duck, Huey, Dewey, and Louie. Oh, the places we went and the things we grew to love, all without leaving the comfort of our middle-class homes. The comics had a recent reboot, occasionally reprinting one of the classic Barks tales, but not much chance they will impress any member of the current generation. Their loss, to be sure. Now back to the man who told me to buy a comic book in the first place.
My poor dad was always haunted by a World War II incident aboard ship that turned his young brain to tunafish. He had a rocky life thereafter, and I especially remember an episode where he decided to buy a general store in the tiny burg of Springfield, Maine, population 500, which already boasted 5 general stores. We had one busy weekend each year when the Springfield Fair was in full force. The rest of the year, customers were in short supply. They were fun times for me, however, as my dad paid me five cents for each beer or soda bottle I could find, which I did patrolling Springfield on my bike. Since there were many beer parties around the outskirts of town, I made out. I saved the money until the following year's fair, and lived like a preadolescent king for that one weekend.
Oh, those were the days!
Then there was The Kingston Trio. 50 years ago that would have been like saying "then there was The Beatles." That was how big that fun-loving folk music band was, circa 1962. For a time they accounted for 25% of Capitol Records gross earnings. They even had a star on the Hollywood Walk of Fame. 10 years after the Trio left Capitol the company required a widening of their front driveway, and the Walk of Fame star was removed by back hoe.
No attempt was made to relocate it. Hang down your head and cry, Tom Dooley! I was unabashedly one of the group's biggest and most loyal fans. In fact, in 1986 I co-authored a book about them titled "The Kingston Trio On Record."
It's initial printing of 5,000 copies sold out over the course of 15 years, and used copies can now be located on EBay for around $100.00 (more if signed by anyone besides the authors!). No money was made by me from the labor of compiling this book (which I remain very proud of), but it did lead me to some liner notes work on various Kingston Trio CD reissues (including the compilation "The Capitol Years"), as well as Germany's Bear Family Records two box sets, "The Kingston Trio: The Guard Years" (named after original member Dave Guard) and "The Stewart Years" (named after Guard's replacement John Stewart). I also was tapped to do the same for CDs by the Chad Mitchell Trio and the Serendipity Singers. Then my liner note profitability star fell, and my career in the music industry ended unceremoniously.
But yes, at least I can say I once had a book published.
Well, a hundred other disassociated topics occur to me, but I had promised brevity, so....
I should mention that my long-suffering spouse, Lorelei, will undoubtedly feel obligated to finish this blog for me once I am no longer capable of typing and have lost my mind entirely. I hope you will be as good to her as you have been to me.
Lorelei Benjamin
photograph by Megan Cunningham
Much of the medical terminology and diagnoses mentioned here are from the New York Times article "The Vanishing Mind: When Illness Makes a Spouse a Stranger" by Beatrice de Gea, Nick Harbaugh, Soo-Jeong Kang, and Nancy Donaldson.
Until next time, hunt down the scoundrels who made you get rid of your comics collection, and see that they are properly compensated.
Love and mercy (to quote Brian Wilson),
Ben
