May 27, 2025
In the positive serendipity that sometimes happens on the Internet, I recently ran across Bill Martiner’s Twilight Journal. I strongly recommend you find the time to visit and slowly, deliberately, read as he documents his journey with ALS.
You may recall my own father had ALS and left us way too early, back in the mid-90s.
Even though we knew from the literature what ALS was, we grew to describe it as “the opposite of Alzheimer’s Disease:” your muscles and ability to move, even breathe, would slowly fail you while your mind remained trapped within.
Reading Bill’s posts have given me a gift. A view into what perhaps my father felt as ALS slowly took him from the world.
Much like Bill, my dad contrived ways to soldier on. But Bill is a WRITER and an observer in ways we all aspire to. With the technology we have now, he writes using his eyes only, surrendering to that which he cannot fight, and digs deep to write amazingly poetic posts as he sees oneness with the world and all its things. Knowing that soon he will be a part of the same cycle of rebirth.
It’s essential to remember that, despite our struggles, the blessing we hear on Ash Wednesday is the truth: “Remember that you are dust, and to dust you shall return.”
Related to that, one of my dear childhood friends passed on this last year from ALS. Sadly, he wasn’t diagnosed until the very end. I wrote this little bit to share with his family. Enjoy…
Sam Stokes was one of my first friends.
We were thrown together in the way kids are, because their parents were friends, and we just naturally fell into the rhythm of it.
One of the first times I went to his house was early some Summer morning. Maybe I was being dropped off for a playdate, or maybe it was so his Mom could take us both to vacation bible school. In any event, his house was to me a Muskogee mansion: one of the classic homes that they now call “Founder’s Place” – big, pre-WWII houses just west of downtown with columns, verandas, porticos, and lots of land. I didn’t know the reference at the time, but I felt like Nick Carroway being ushered in to Jay Gatsby’s bedroom – where Sam was barely awake, wearing a gray plaid robe and changing while we talked.
Over the years, and since we went to the same church, we hung out a lot. Sam was a year older than me and had two older sisters, so to an only child like myself it was electric watching how they teased and interacted. His parents were incredibly cool.
One of the highlights: our two families (and who knows who else) decided to co-host a Hawaiian style luau party, complete with a roast suckling pig with an apple in its mouth. It was held at Sam’s house, and to this day that party remains to me a memory of what a great party in a Hollywood movie looked like. Sam and I ate, wandered the various rooms taking part in conversations, drink punch, and continued to sneak bits of ham all night. We felt so grown up.
Fast forward a few years, and Sam decides that Muskogee High School needs a mascot. This was either his Junior or Senior year. Up until the 2000s, Muskogee’s combined public schools had no graphic representation of what a “Rougher” was…old Central had a bulldog, but that didn’t get brought over until the late 2000s. So Sam decided it was something like a cougar. We used to joke that it was a “R-r-r-r-rougher,” in the same way that Tony the Tiger said “G-r-r-r-reat!” Maybe it was derived from the fact that he was able to find a full-size cougar costume that fit his frame, but no matter. He’d take his place near the cheerleaders and do flips and whatnot. People in the stands at first REALLY didn’t like it. The cheerleaders would look at him like he was stealing from them. They heckled and…cat-called? Over time, he won everyone over. He would eventually even do stuff with the cheerleaders.
I admired Sam for his determination: he decided what he wanted to do, and did it. He didn’t do it to enhance his college entrance essays or anything; he just did it because he wanted to.
Like people everywhere, our parents kept us each in the loop with what the others were doing, but as people aged even that became less and less. We drifted on in our lives, and like everybody, social media became our way to touch base. A poor substitute, but when separated by 2,100 miles it’ll have to do.
When I learned recently from Susun that Sam had ALS, it was a gut punch. Being that my Dad had passed from ALS back in the 90s, I knew the nasty and brief road that lay ahead. Prayers for a speedy and painless release were in my thoughts, along with grace and peace to his family.
Rest in Peace, R-r-r-r-rougher.