Chapter 18: Vision Quest

With his eye on the prize, our central character risks losing out on a higher purpose.

The morning we were discharged from the birthing center, I had an intense vision while driving Hope home for the first time. She and Iris were all grown up, and the three of us were singing and dancing together at a fabulous party. Jamie was there too but she was busy laughing at how goofy we all looked as she held back tears of sheer joy.

Ready for some light in the darkest year of our lives, we welcomed Hope Danielle Smith into the world with overflowing hearts. Shawnee Mission Birthing Center.

So incessant are my daydreams for a brighter future, I have to near constantly pinch myself to avoid driving into a ditch. Surviving ALS has consumed my thoughts and permeates almost every action I take.

This is not the first time I’ve had delusions of grandeur. In a world flush with my own crazy machinations, lives a hero protagonist who looms large and looks an awful lot like me. Like a movie reel running in my minds eye, I’ve watched this spitting image reach the pinnacle in sports, music, business and more. Whether it be the most influential singer-songwriter of a generation or the disrupter who turned the entire fitness space on its head, I’ve been there. I can’t even tell you how many times I’ve seen myself play in the NFL. At like every position for every team.

And no matter how bad I wanted it or how hard I worked, I always knew these fantasies of mine were mere pipe dreams. But it sure was fun to suspend reality and let my imagination run wild.

Now I question whether or not I’m doing that now with my desire to be (not just a part of but also a driving force behind) the first generation to defeat ALS.

My instinct says “No. This is the time you finally manifest the miraculous. This was always your destiny Scott. Your family needs you. This HAS TO work out.”

In large part due to our faith in this research trial I’m enrolled in, Jamie and I have been able to lean into that promising future wholeheartedly. And we are very much enjoying this period in our lives where we have the luxury to still have Hope to hold onto (literally in two senses of the word).

With that being said, it’s become very apparent to us both that we are quickly running out of reasons to remain optimistic.

Not long ago I wrote about the “quicksand” where I observed that the more I do to save myself, the worse I seem to become. It’s proven to be the case.

All the research and implementation hasn’t made a difference in my downward spiral. And to compound things, I caught a nasty cold virus that landed me in the ER. Combined with my bulbar ALS symptoms, I was unable to swallow or speak.

I’ve since recovered but not fully. My decline has only worsened as I now have weakness in every part of my body. Remember that ALSFR score of 42 that I was so proud of? Well, it’s plummeted to a 37 in a period of 2 months. Not a sustainable trajectory for survival.

As my father and I left the house this morning, bound for Boston and glory, Jamie and my mother both broke into tears. We all knew why. If this experimental drug doesn’t do what we are counting on it to do, this story doesn’t get the happy ending everyone’s rooting for. In other words, it’s miracle time.

The epicenter of ALS research: The Healey Center at Mass General.

But therein lies the real question I’ve been wrestling with: Does “happily ever after” even exist or should it remain relegated to fairy tales?

I’ve never told anyone but my wife this but when I was younger and living in the city, I used to drive aimlessly around Mission Hills, once again daydreaming of what another life might look like. For those of you not familiar with Kansas City, this is the highest net worth neighborhood in the entire state of Kansas. Gorgeous mansions with immaculate landscaping. Just think if Oheka Castle and The Breakers birthed a child and you’ll get the picture.

Now, do I think that rich people are happier? Not necessarily. The two largest studies posing this same question rendered conflicting results. While one found that happiness plateaus after exceeding an annual income of $75,000, the other reported that more money can indeed buy more happiness but is dependent on where it’s spent. Throwing away your financial freedom only to become enslaved by your possessions won’t yield happiness.

I bring up this seemingly random anecdote because I all too often assume that the grass is greener on the other side. “If I could only (fill in the blank) THEN I would be happy,” I’ve told myself.

I see this very phenomenon play out in my job all the time. Just check out my client transformations page and you’ll discover some of the most remarkably inspiring stories about individuals who set a goal and achieved it. You might think after they lost all that weight and got toned as hell, they would be carefree but you’d be wrong, that’s not how it works. More often is the case, a bit of a depression sets in for these folks following the wrap of the photo shoot. I can even hear the voice in their heads..

“I thought this would feel different. Now what?”

Turns out, being super sexy isn’t directly correlated with an everlasting life of bliss. Same goes with being rich or famous or prestigious.

That’s because happiness is not something that can be found on the other side of anything. It is not a destination. Happiness descends upon you when you least expect it while you are busy pursuing something meaningful.

You know when my clients were at their happiest? It was when they first started seeing progress and their confidence was on the rise. Or when they set a new personal record on deadlift. Or perhaps when they finally took control of what they were putting in their bodies. It was DURING THE PURSUIT of their lofty goals that my clients found something more meaningful. No superficial goal attainment such as body shaping can compete with the excitement, stimulation and adventure of the climb.

I know all this to be true and yet I’m constantly having to hack my own brain to avoid the carrot chasing, hedonic driven pitfall of believing happiness is a goal in and of itself.

Okay, now that we agree folks in Mission Hills are probably equally stressed and miserable about having to continually fall short of their own moving goalposts (more money more problems right?) we can get to the punchline. And this is a stretch but stay with me…

I’d like to attempt to apply this same logic to my current predicament.

ALS has taken multiple symbolic forms of the villain throughout this narrative. We’ve had guerrilla insurgents and giants for instance. But the scariest of them all was that dragon back in chapter eight. Archetypically speaking, dragons guard an important treasure. And being a combination of both a serpent and fire they also supposedly represent hell (or the Devil).

My first assumption was that the treasure must be a cure for ALS. Seemed obvious enough. If I could only face my fears, walk through the fiery hell and conquer the dragon, I’d be rewarded with my old life back. And then I would be happy. There’s that naive idea again.

I mean, what if I DID find a cure but then something tragic happened to one of my daughters? I would gladly go back to a world where I have to struggle with ALS if it meant I still had both my little girls. There’s no way around it, terminal illness or not, I don’t have time to sit around waiting for some magical universe to be revealed where I’m happy all the time. I’ve got shit to do. Suffering is inevitable and the only anecdote is to find and fulfill my purpose.

So after hours and hours of driving, daydreaming, and philosophizing I’ve reached a different conclusion for how this plot line arrives at something resembling a happy ending. Though I’m still hoping and fighting for that elusive treatment, there’s a treasure far more valuable that I covet. More meaningful. And I’m determined it won’t have anything to do with whether or not I die from ALS.

Because I want my life to be defined by how I chose to LIVE with ALS. Demonstrating love, humility, honesty, grace, gratitude and most importantly courage in the face of death is the greatest adventure to betide any man or woman.

Though it may look a little different (okay A LOT different), I’m still blessed with an opportunity to pursue my most ambitious dream; to be the father, husband and man I always aspired to be. Beating ALS will just be the cherry on top.