Chapter 23: The Man in the Mirror
Things go from bad to worse when our war torn warrior is ambushed from behind.
To me, the beauty of dreams lies in their nonsensical limitlessness. Just last night I had one such dream. And in this particular fantasy I still had ALS. However, unshackled from any given law of biomechanics, I discovered that as long as my heels never touched the ground, I could RUN as fast as I wanted. This was an exciting revelation for this former fitness fanatic. No more schlepping my decrepit ass around with a cane. More importantly, no more wheelchair rides. I was in ecstasy.
Upon waking to reality, my body’s endless potential evaporated. This morning I labored for a good five-minutes to pry myself loose from the rigor mortis like clutches of my motorized bed. The battery had died overnight near rendering me a prisoner to my own mattress. Once upright, I was eager to attempt my newly found running technique. For a warmup, I thought it best to try standing on my toes first. Fortunately, there was a recliner shaped bed nearby to break my immediate fall.
“How stupid can you be Scott? You’ll never run again.”
After coming to terms with gravity still being a very real thing, I grabbed my cane and hobbled into the bathroom to initiate the day. It is here where, each and every morning, I am confronted by another reality. To enter, I must first confront the man in the mirror.
He wouldn’t strike most others as at all threatening. Unable to groom himself, his receding hairline is fully exposed, exaggerating his age. His face is tired and trembling to match it. The glaring sores of BIPAP mask wear and tear mar the canvas of a nose. His slumped, bony shoulders, prominent collar bones and winged scapula painting the perfect silhouette of frailty. Regardless of his vulnerable appearance, this man strikes fear into my heart. We just had the bittersweet pleasure of seeing what love looks like in the previous chapter. Well, may I present to you: What dying looks like.
Before and after ALS (10-months post diagnosis).
Over my fourteen-year long career as a personal trainer, it was not at all uncommon to cross paths with a client who literally wouldn’t look at themselves in the gym mirror while working out. Even at my insistence that it would greatly enhance their technique, they would unapologetically disregard the advice. Further probing usually revealed that this individual hadn’t looked at themselves in ANY mirror for a very long time.
As a person who has spent an embarrassingly absorbent amount of time staring at their own reflection, this always struck me as sad. But our culture can be harsh on those who aren’t the complete package. And I understand that package very much includes our aggregate standards for physical beauty. Irregardless of how my profession has long reaped financial benefit from the associated insecurities, it’s a shallow truth I’d just as well leave in the box. I can honestly say that all of the above is NOT why I got into the fitness business.
I’m brushing my teeth now and I catch myself starring at the floor to avoid my eyes from ever finding the wall in front of me. Should they stray north, I know what they would come upon. An image of a sickly man with a blend of toothpaste and saliva dripping from his chin (as profusely as the definition of dripping allows).
The negative self-talk continues, “You’re disgusting.”
Trauma from my adolescence resurfaces to haunt me once again. For long before there was a man in the mirror, it was a boy who would appear. And he too had an observer with a detrimentally distorted point of view.
Seen by himself as awkward. Skinny. Weak. Ugly.
Others evidently scouted the same thing. Because come 7th-grade, the boy was bullied and harassed a good deal (though he would say it was a BAD deal). Impressively enough, a few students actually had it worse. So the boy tried his best to be grateful for his, albeit still low, relative standing in the food chain. While he was a magnet for asshole alpha boys seeking to torment, he may as well have been invisible to the girls. For that second part the boy was actually thankful. It spared him the burden to formulate coherent sentences on the fly. He was also quite shy.
The following school-year was a different story all-together. The most popular girl in all of middle school was overheard divulging a well kept secret. She thought the boy was cute. Along with the entire 8th-grade female contingent, our lucky protagonist caught wind of this gossip. And just like that his social trajectory was forever altered.
In a flash, the other students saw the boy in a new light. Or perhaps they we seeing him for the first time. Either way, doing his best Patrick Dempsey impression in “Can’t Buy Me Love” (minus the borderline prostitution part), the boy started to believe the hype. As his confidence grew, the boy’s transformation snowballed. Dating older girls, excelling in academics, sports and music, and taking a vested interest in his wardrobe for the first time, the road began to roll out behind him.
This meteoric rise reached a crescendo when the boy finally grew into his body. Kindred to the mirage of my ability to run again, the now young man’s bullies seemingly evaporated overnight. They too were replaced by mirrors (another former adversary he no longer avoided). And when the cosmic dust finally settled, that awkward, skinny, shy little boy stood tall as one of the most accomplished and popular students in his class. Henceforth, he would be affectionately known as “Scottie Too Hottie.” Suddenly, the future was as limitless as his dreams.
9th-grade formal at Lawrence West Jr. High
As it pertains to drug use, the magnitude of “high” one experiences is directly proportional to the rate of consumption. As long as that rate holds constant, so does the amount of dopamine flooding into your brain. But when that consumption inevitably starts to lag, well… there’s surely a place in hell for that sinking feeling. And, if I may boldly transition back to first person, this substance abuse phenomenon is perfectly analogous to my transformative teenage experience. For I quickly grew addicted to the sudden attention.
My senior year, donning a new six-pack, I managed to book a modeling gig posing as the Greek mythological character, Icarus. Completely oblivious to the irony, I was destined to discover the consequences of flying too close to the sun myself. When I could no longer sustain the perfect person I was trying to be, I crashed. I crashed hard. Never had I felt so low, isolated, and hopeless. Something deep inside me on a biological level had been triggered. That was the first time I wanted to leave this world.
I’ve never told anyone this, but buried deep somewhere in the underbelly of our home, is a very, VERY detailed suicide letter. Truthfully, it was more of a suicide game plan. I penned it 22-years ago whilst tumbling from the heavens. My parents saved me from its implementation. Oddly, even after all this time, I’ll occasionally sneak down to the basement to re-read my swan song script. A reminder of what happens when you have clinical depression and you deny yourself grace.
Nowadays, should my eyes accidentally locate the mirror, “Scottie Too Hottie” is nowhere to be found. A body that took a lifetime to methodically build has been haphazardly torn down in a matter of months. A once beautiful now labored smile is endanger of joining the same fate. My sadness over these superficial losses has lessoned over time with acceptance. Nothing like a muscle wasting disease to deliver the coup de gras to any remaining incongruous vanity, am I right? What’s more, it’s been made crystal clear from the constant showering of love I’ve received that my really, really, really ridiculously good looks were never my defining quality after all. Despite the sweet nickname.
And yet I find myself seemingly back at square one in an existential rebuild amidst the deepest, darkest depression I’ve ever known. The losses in my independence and identity have come swiftly the past two months. Too rapid for me to appropriately honor and grieve. Much like my inability to live up to impossible standards back in high school, the failure to provide an example of hope for the ALS community I’ve grown so close to has cut me off at the knees. Where the adrenaline fueled “high” of being the first person to defeat ALS once reigned supreme, apathy has thus descended to usurp it.
In my last entry I pledged to let go of the many things I have no control over. But right now I’m not even motivated to do all that in which I still possess agency. I can barely will myself to do rudimentary tasks such as brush my teeth. How in the hell am I going to pull off something that’s never been done before?!
Even Jamie asserted that I need to re-engage in the fight. She’s feeling lonely at the front lines. And to make matters worse, I’ve been doing everything in my limited power to escape the guilt from that. Safe to say, I’ve been monumentally routed.
It would be easy to pin all my recent struggles on ALS. However, I believe that it’s had less to do with misfolded proteins in my motor neurons and more to do with a deficiency in mood regulating neurotransmitters amplified by a really defeatist attitude.
Something else transpired last night around 2am and unfortunately this time it was not a dream Jamie’s slumber was interrupted by a disturbing sound. Spoiler alert, it was not Hope or Iris. She was subsequently subjected to a particularly intimate duty involving my care. Details aside, while that unfolded I heard myself say something I never thought I could possibly yearn for (again).
“I can’t wait till you don’t have to deal with this shit anymore.”
In her optimistic nature, my wife presumed I was alluding to a time and place where I’m cured of this horror show of a disease. But that’s not what I meant.
In yet another plot twist, it turns out I’m not up against a dragon in this tale. Rather, I’m facing a two headed hydra. And it has me caught in a pincer attack. While I’ve been fighting to staunch this new foe in ALS, my long time nemesis, depression, has swung in to ambush me from behind. Not to detract from the unmatched efficiency of ALS, casualties from depression are, as it happens, more prevalent. 47,500 lives lost in the U.S. alone per year to be exact.
Later this morning, after I painstakingly completed the chores of brushing and dressing, I beckoned for reinforcements. One man answered the call. He is my therapist. I hesitate to use that title as he attended my wedding and no longer accepts payment. Long have we known one another.
I’ll say it was my dear FRIEND then who quickly appeared in my living room. We compared fantasy football drafts and discussed fatherhood. You know. Guy stuff. Then we pivoted to the more pressing matters most guys avoid.
Near the end of our discourse, he reminded me of something I said to him back when I first diagnosed. That this was always going to be my story. All of it. Even the losses. I was never entitled to the life I once thought I would have. And in that intellection, when hope is fleeting and I’m feeling low, I can find a new purpose to hold onto. A more inspiring legacy to bestow upon my two daughters than an infinite case of trophies.
That there once was a man, who loved them so much, he could see past all he wasn’t nor ever would be to demonstrate what beautiful actually looks like. Not in the least, the spirit of a father who would never, ever give up on himself.