Chapter 26: Resolution (Part 2)

A reflection of the entire story carries us forward into ACT II. The central figure gets his hands on a new weapon. A final showdown looms…

There’s this foundational scene at the beginning of “Jerry Maguire” (a guilty pleasure of mine), where the protagonist (the movie’s namesake, played by Tom Cruise) has this crisis of conscience. He stays up all night penning 25 pages of hard truths that his sports agency has long ignored in the name of the almighty dollar. Perhaps more courageously, he offers an alternative path forward. A mission statement, if you will.

With the utmost sincerity and honesty, the man pours his heart out onto paper and in doing so, reveals the most vulnerable pieces of his makeup. To read that 25-page manifesto is to know who Jerry Maguire is (or at the very least, who he is striving to be). He sends a copy to literally everyone in the company before realizing he’s just sealed his own fate.

The eloquent manuscript, mistaken for audacious memo, falls on deaf ears. Maguire is terminated immediately for insubordination. Only one person is inspired by the mission statement’s virtuous promise. And we’re all indeed thankful Renée Zellweger’s character (despite misbranding it a memo herself), was so moved lest we live in a world without “You had me at hello.’’

In an altogether different scene buried deep inside a real-life story (featuring another short, attractive protagonist with dark hair), a young father with a wife 4-months pregnant, discovers he is terminally ill. There is no cure. His doctor tells him the dire prognosis: he’ll become increasingly paralyzed until he can no longer move or breathe, most likely dying inside 2 to 5 years. Ironically, the diagnosed has dedicated his life to health and fitness.

The aspiring family man is thus plunged into the not-so-shallow decision of how, when and who to tell this gravest of news. Should he keep his condition concealed for as long as possible? Many fine folks before have taken that approach (particularly stubborn men), and not just with ALS. A person’s health is a private matter after all. Why burden anyone unnecessarily with such a heavy load? Furthermore, who wants to be pitied in perpetuity?

But the terminal father chooses an alternative path. For though joy when shared is twice joy; pain, conversely, when shared is half pain. And he suffered unbearably.

The young man decides to tell everyone all at once. I mean EVERYONE. The necessary conversations far too painful to repeat a hundred times over, he seeks refuge in the dregs of all civilization: social media.

His first post he titles “The Fight Begins." Between blood draws for a local research trial, the one-time personal trainer turned Guinea pig hurriedly hammers out his dilemma on his phone and hits send. It’s little more than a few paragraphs of matter-of-fact press release regarding the diagnosis. A memo, if you will.

Now, this was meant to be the final chapter in my blog. What I was planning on included focusing my writing efforts on a book instead. But after months of reflection (and zero fresh words on paper), I’ve concluded that direction would be the wrong strategy.

If "The Fight Begins" was intended to be merely a memo, then what followed was the mission statements of all mission statements. For what started as a way to disseminate information in one fell swoop (about my condition) to all my friends and family soon morphed into something entirely different: an engine to spread ALS awareness to those who knew little, a companion to pALS and cALS suffering in relative isolation, a platform for advocacy and (perhaps most notably) a conduit stretching far enough into the future that my two daughters might someday know who their father was and how much he loved them.

Selfishly, it was more. You may not even realize this but human beings predominantly sort their thoughts out by speaking OUT LOUD. Otherwise it’s just abstract nonsense pinging about their heads. Unfortunately, I can no longer have conversations to accomplish this basic necessity. This blog is my voice. And I need it not only to think but also to untangle my emotions. So what you are reading is me processing the most intense suffering imaginable in real time. That can’t be accomplished by writing a book inevitably stuck in the past.

The headshot for the book that will never be :(

When I was first diagnosed, a mutual friend connected me with Brian Wallach, founder of I Am ALS and definitive leader of the ALS advocacy movement. Inescapably inspired by his drive, I wanted to become him. A legend and a hero. The epitome of a warrior. We have since become friends and business partners. But what he told me when we first spoke radiates from my heart to this day.

"You should use your voice fully. Gain insights from multiple people and build your own conclusions and style. Be true to you."

Translation: "Don’t try to be me."

I’ve always been a moldable student, given the right teacher, so I obliged. I uncovered and subsequently harnessed my own unique super power: vulnerability. Turns out I’m no writer. I’m just a guy crazy enough to share his diary with whoever desires to read it. Jerry Maguire has nothing on me.

Despite this whole narrative traversing nowhere close to resembling the happy ending I heavily foreshadowed (recall I was supposed to be the first to survive ALS), chance has thrown me one last life line to cling to. That research drug trial in Boston that we sacrificed everything for? They just offered me Open Label Extension. That means I’m going to receive the most promising ALS drug therapy available for realzies. Zero chance of placebo. This go-round when I travel across the country for some white coat to stick a gigantic needle directly into my spinal cord, I’ll at minimum know "this isn’t saline."

All aboard the hope bandwagon once more!

But buyer be aware, our newly found faith is about to be abruptly tested. For I already know what happens in chapter twenty-seven. And I can assure you the REAL fight is only now just beginning…