Chapter 19: A Tale of Two Men
“It was the best of times, it was the worst of times.”
One of the most famous opening lines in literary history and apropos lead in for this next chapter. The stark contrast in experiences this past week define my existence as I struggle to reconcile what I can only describe as two entirely different men inhabiting the same feeble body. And while there may have been no guillotine present in my story, there certainly was the anticipation of death. Yet my head I keep, only to find a more comfortable spot resting upon the shoulders of a fresh character in my journey. That character’s name is Tom Watson.
Last week I was honored at the annual Joe McGuff Golf Classic at Lion’s Gate. The event was originally established to honor the prominent Kansas City Star journalist who had ALS. Royals Hall of Famer, George Brett, and all-time great pro golfer, Tom Watson, have been the featured celebrities for their obvious connection to the writer and their involvement with the ALSA Mid-America Chapter whom golf proceeds are raised for.
It was a first class fundraiser all the way. There was a bunch of press prior to the kickoff and while that was going on, participants and my family were treated to breakfast and a Bloody Mary bar. After the first tee shots went off, Jamie and I drove around the course in a golf cart and visited with the various groups, each of which had their own celebrity. After the round was concluded came dinner, followed by a fireside chat with George, Tom, and former all-pro Chiefs quarterback, Trent Green. Lastly came an auction and the awards.
But in between the feast and the fireside, emcee Stevens St. John of 810 Sports Radio came to the podium and told my story (in great detail no less) before offering the mic up to Jamie and me. What came next is legendary.
As we made our way up we both trembled. We knew we were going to be asked to say a few words but neither of us took the time to plan out what those words would actually be. We were too busy having fun running around looking for range balls with Iris and rubbing elbows with famous people!
Jamie spoke first. “Scott and I have a mutual friend who set us up. When she showed me his picture I was like ‘this can’t be real.’”
The picture she was referring to was a well oiled, shirtless me donning a well rehearsed “Blue Steel” facial expression.
She continued, “I thought he was going to be a real asshole.”
Jamie stole the show at the 2021 Joe McGuff Golf Classic. This was the moment the crowd turned on me.
Everyone erupted in laughter. From that moment on the crowd was captivated as they were taken through each and every human emotion, Jamie improvising all along the way. I was just so proud of my wife as I watched her command the room. If you didn’t understand the horrors of ALS coming into the event, you most certainly did when you left. And when her speech was over, there wasn’t a dry eye in the venue, including George Brett.
It was standing ovation worthy and rewarded as such.
She handed the mic to me and it’s at that moment when I realized that my partner had done me no favors, forcing me to follow a performance of that caliber.
Having been a long full day of activities and conversations, my speech was particularly fatigued at this point. I knew I needed to keep it short and to the point.
“I used to be good at these type of things,” I slurred.
As I fumbled to find the next words, my pseudobulbar affect or PSA started kicking in. PSA is a condition that often accompanies ALS, making it difficult for one to regulate their emotions. This did NOT help me formulate my thoughts into anything resembling spoken language. My audience sensed I was struggling and came to my rescue,
“You’re doing great!” One man yelled.
“Take your time!” From another.
I did take my time, and when I finally composed myself I said this;
“When I wake up in the morning, I tell myself that ‘today I’m going to have a good day.’”
Then there was a long dramatic pause followed by, “And today was a very… good… day. So thank you for that.”
It wasn’t a standing ovation worthy performance like Jamie’s but evidently it was a standing ovation worthy effort because that’s what I received.
Then came a surprise.
Tom Watson came up and said some extremely moving words of hope, thanks, and encouragement. I believe that most people there were shocked to hear about our refusal to accept the prognosis of certain death. Everyone seemed to be fascinated about our quest to find access to experimental treatments. No one was more fascinated than Tom Watson who had pulled me aside earlier to learn more about this trial I’m in.
You see, Tom Watson lost his good friend and long time caddy, Bruce Edwards to ALS 17 years ago. He has since given a lot of himself to advocate for those suffering from this always fatal disease.
So he thanked me for giving them all hope (he made sure to tie our daughter Hope into his delivery as well) that a cure was not only imminent but would be here in our lifetime. The golf icon was moved to tears as he spoke and I knew he was thinking about Bruce. Next he presented me with a signed photograph of his famous chip-in just off the 18th green at Pebble Beach to win the 1982 U.S. Open followed by a long embrace that I’ll certainly never forget for as long as I live.
Even though the three big names thereafter took the stage, it was Jamie and I who remained in the spotlight. As the fireside chat commenced, a queue formed to pay tribute to us, learn more about our story, and offer assistance. We felt not only an overwhelming sense of love but also that of respect and even admiration. The icing on the cake was that both sets of our parents were there to see the display. It truly was a good day.
The following week I made a video with my friend Sarah with the goal of creating a campaign that had the potential to go viral for ALS Awareness Month. We nominated a few individuals in the Kansas City fitness world to accept the challenge and pass it along and before we knew it the #FlexOnALS movement was born.
The call to arms (pun intended) was quickly answered and embraced by our peers, our friends, and our friends’ friends. And before the week was over some 1000 individuals had drawn #FlexOnALS on their bodies, flexing for the camera and all those whose muscle has wasted to the point that they no longer can.
My feed on Facebook and Instagram looked like I accidentally stumbled into a bodybuilding forum. Everyone from the entirety of my life from my beloved fitness family and bandmates to long lost elementary school acquaintances and ex-girlfriends appeared in front of me to flex in solidarity and write messages of love and support.
This overwhelming once in a lifetime experience left me feeling confident that I was a force to be reckoned with. As the weekend arrived I departed for Boston for the fourth time in a four week span, filled with hope and feeling like I could change the world. But nothing lasts very long with ALS. And in an instant the best of times was suddenly over…
Golf icon, Tom Watson, surprised me with a generous gift and a whole lotta love.
It started with a pair of socks. If you’ve been reading, you know by now how much I despise the bastards. But my neurologist thinks I should wear compression stockings while flying because I’m at an increased risk for blood clots due to my medications. I comply. Problem is, they are really tight by design. And that does not bode well for someone who basically has a club for a hand. So the man who started the #FlexOnALS challenge and hangs out with celebrities has to have his wife put his socks on for him. That knocked me down a few notches. If I was a 10 going into the weekend I’m now an 8.
Cut to a scene at the airport, there’s a guy having a really hard time schlepping his ass down the terminal. Yup, you guessed right. He is in fact yours truly.
“Get the fuck out of my way,” an evidently super important woman mutters under her breath as she races out from behind me.
Not long after that came a more spiritual insult. From behind again I hear, “Jesus! Why do people walk so slow.”
The sad part is that I was walking as fast as I could without tripping over myself. Actually, the really sad part is that people are assholes when they are in a hurry but I digress.
I’m at a 6 and I haven’t even boarded the plane.
Cut to 40,000 feet above all the people living their hurried lives below and I’m just praying the girl next to me doesn’t try and start up a conversation less I have to tell my “I’m not drunk. I have ALS” joke again for the umpteenth time. It’s pleasantly silent until my dad (who always accompanies me) from all the way across the aisle turns to ask a question.
“What do you want to do for dinner when we get in?”
With face mask buried deeply into my weakening mouth I attempt to respond. As expected, he doesn’t understand a word I’m saying/grunting. We’ve been playing these charades all morning. I’m beyond frustrated at this point. So I try again, as loud as possible.
“LET’S ORDER SOME FUCKING PIZZA!”
He understood me that time but not before I received a bewildered stare from everyone in a 3 row radius. We moved well past “drunk” joke territory and straight into "severely mentally handicapped.” Now don’t get me wrong, there’s nothing derogatory about the mentally handicapped. It’s just that I’m NOT mentally handicapped! But no one on Flight DL661 would believe me if I said that.
I’m a 3.5.
Not soon enough we land in Beantown. Here’s where I pray no old ladies ask me to help them retrieve their luggage from overhead, but who am I kidding? At this point, no one in their right mind would dare engage the raging crazy pizzamonger. As we loiter in the aisle, the girl next to me literally struggles to dislodge her suitcase for a full minute. And while she is in her own personal hell, I keep my head down where it belongs, in Shametown. Population of one.
When what to my wandering eyes does appear? Untied shoelaces! And they’re mine of course!
The folks in front of me are starting to move so I don’t have ample time to tie them (clubs for hands). I guess I’ll just have to risk what little pride I have left and walk the plank…err exit the plane.
Now, I’m betting you know what’s about to transpire. And you’re right but it doesn’t play out like you’re visualizing.
I actually do manage to disembark the aircraft without incident. But then I decide the bottom of the bridge is the appropriate place to lace ‘em up. So for a second time I have a nice little audience but these folks aren’t here to cheer me on, they’re here to maneuver around the guy who takes two minutes to tie his shoes. I manage to accomplish the small feat and after doing so for my grand finale I try and stand up. I get most of the way there when my 2-hour flight legs suddenly betray me and I go face planting into the door of the plane. True story.
I’m a zero. And that’s exactly what I felt like.
Though Tom Watson’s shoulder wasn’t there to comfort me I heard his voice. It felt like a lifetime ago but that previous week while I was busy being heralded as a hero, Tom pulled me aside to tell me something that got me out of that airport.
With his hand on my shoulder he said, “Do you wanna know what Bruce used to tell me when I was having a really bad round?”
Long dramatic pause.
“We carry on.”
This chapter is dedicated to Bruce Edwards