Chapter 24: A Father in the Rough
“If there is any immortality to be had among us human beings, it is certainly only in the love that we leave behind. Fathers like mine don’t ever die.”
It came on slowly at first. My heart rate began to accelerate. My breathing became increasingly shallow and rapid. I could feel the world closing in. Jamie was on the couch next to my recliner, though I could no longer detect her presence. Only darkness now appeared in my periphery.
“Listen!” she exclaimed from the black.
On the baby monitor was the unmistakable voice of Iris. She was singing. I’d never heard her perform solo from her crib before. This was a first.
“Twinkle twinkle little star [long pause] how I wonder what you are.”
It was adorable. It was lovely. She continued.
“Up a-[made up words] so high, like a diamond in the sky.”
The widest possible range of emotions overtook me. We had sung that song together earlier in the day (well I spoke and she sang). On the one hand I had never been happier. For she remembered that moment. And not only did she remember but she had also been inspired enough to do something she’d never done before. On the other hand, I had never before experienced such an unimaginable sadness. Visions of me teaching her how to play guitar and us singing duets together in two-part harmony teasingly resurface. Robbed of my ability to reciprocate in the sharing of my musical talents, how will I ever effectively nurture my daughter’s obvious gift now?
“Twinkle twinkle little star, how I wonder what you are.” [end song]
I started to sob uncontrollably.
“Why are you crying?” puzzled my wife.
At this point, between the tears and onset of bizarre new symptoms, I could barely see anything. Oxygen had become the latest luxury to be taken for granted. And the most worrisome development: my limbs were paralyzed. Giving her no real information to work with, I responded, “Something’s wrong.”
My thoughts went straight to the worst. The tears dried up and my body went into shock. I had just received a feed through my PEG tube. Perhaps the contents were leaking into my abdominal cavity. Perhaps I was poisoned. No matter the cause, every fiber of my being told me I was about to die. That’s when I felt the inside of my brain explode.
“Jamie, my face,” I slurred.
I tried to demonstrate a smile but the left side of my face didn’t cooperate. It was a stroke, I knew it.
There was no coming back from this. Not with ALS.
As my heart raced out of my chest, I closed my eyes and prepared for the end. The real question now wasn’t “Am I going to die?” Rather, “What final image do I want to leave this world with?” I knew then what somehow Iris had known all along. So I replayed her sweet rendition of “Twinkle Twinkle Little Star” in my head on repeat until at last Jamie interrupted.
“I don’t see anything wrong with your face Scott. Open your eyes.”
My heavy, saline-saturated lids parted.
“Holy shit. Your pupils are like super dilated. Scott, I just think you’re really, REALLY high right now.”
It was true that I had also received a combination of THC and CBD through my feeding tube along with my nutrition. Countless pALS swear by the drug for the management of their symptoms, namely anxiety, excess salivation, muscle spasticity, and pain. Apparently, my loving wife accidentally overdosed me (so I was poisoned!) because it had a parabolic effect. In a state of paranoia, I mistook a panic attack for a stroke.
Further, the THC had a similarly opposing outcome from the intended one on my muscle spasticity. Even with my walker, I was so locked up I couldn’t get my legs to relocate me to the bedroom. Instead, my wife and I had an impromptu slumber party in our living room—Jamie on her sofa and I in my chair lift.
When the sun rose on the following day and I realized I was, in fact, not dead, the overwhelmingly predominant emotion was pure bliss. Despite a hangover that would persist for 72 hours, it was gratitude that oozed from every pore of my body. For I was playing with house money now. But much like one temporarily obeys the speed limit after getting pulled over (only to resume their reckless ways a few blocks later), so too went the way of my newly borrowed time. Because I couldn’t stop thinking about the profound sadness Iris’s lullaby had elicited. And in that obsession’s fertile soils, the seeds of a lost fatherhood, planted a year ago today, took root and flourished, transforming into something far more destructive than sadness: rage.
Growing up, my dad was the best. When he was around that is. He too was an entrepreneur. The proud owner of his own pharmacy, there were frequent long stretches where he wouldn’t see me and my brother (unless you count the picture he kept of us in his wallet). Knowing what I know now about business ownership, it’s no small miracle he was around at all. And it wasn’t a choice as much as it was a sacrifice. But to an awestruck young boy, this was incomprehensible. I just wanted to spend time with my hero. All the time for that matter.
When Dad was in our lives he was all-in. He didn’t (doesn’t) have it in him to NOT do his best work no matter the task. Be it carving jack-o-lanterns, dying easter eggs, coaching sports, reading bed-time stories, telling jokes, performing goofy impressions or dominating board games. I’ll reiterate: my dad was the very best. I vowed from an early age to be everything he was and all he was not when the time came for me to be a father.
My fierce competitiveness was no accident.
Fast forward from childhood to last year, October 2020, and the table was set to make good on my promise to be the GOAT. We had just weathered the worst of the pandemic and my personal training business was thriving. After doing my own Mark J. Smith impression for the past 10 years (working tirelessly 7-days a week), I had at last assembled my dream team. This meant I no longer longer needed to take on the same unsustainable workload by myself. Jamie was pregnant with Hope and Iris had come of age to start bonding with Daddy in earnest. In my head at least, it was time to reduce my hours at the gym and give my family what it needed even more than riches: me.
Later that same month we drove to Louisburg Cider Mill to go pumpkin hunting. Jamie was in the back seat with Iris. My favorite song at the time on country radio, Morgan Whalen’s “Chasin’ You,” came on and I cranked up the volume to drown out the sound of my blubbering. I had a devastating secret no one knew. I had a terminal illness. It wouldn’t be for another three weeks that I was given an official ALS diagnosis but I knew. I had confirmed my worst fears the night before when I thoroughly scoured the internet until 3 am. Jamie was pissed at me for staying up so late. This excursion with the family meant the world to her. She had no clue it meant everything to me.
When we reached the pumpkin patch I asked a stranger to take a picture of the three of us, which I NEVER do. On the inside I was falling to pieces knowing full well my fatherhood dreams were over. On the outside I was determined to give Iris the full dad experience while I still could. And wouldn’t you know it? The latter came naturally. I’d been given the perfect road map.
The infamous picture at the Louisburg Cider Mill.
In the year since that fateful trip it’s been impossible to see past the other daddy/daughter teams sharing in memories my girls and I will have to settle fantasizing about. Ten times these past five months I’ve traveled to Boston, and every single trip I’ve eyed a family at the airport departing for what I imagine is a fun, adventure-filled destination. Meanwhile back at home, whether it’s walking to school or splashing in the pool, I’ve been relegated to mere spectator. There’s no shortage of jealousy attached to that either. Whenever I spot a grandpa tossing a shrieking Iris into the air, I’m conflicted by the joy it brings her and the longing it invokes in me. They are my most cherished moments, squeezing uncontrollable laughter from my little ladies. Now I’m struggling to reinvent ways to do just that.
I’m not the only one finding it difficult to adapt either. In those immediate days following my diagnosis, I felt relieved that both of the girls were (or would be) too young to comprehend the gravity of our plight. I assumed they would grow up accepting my disability as “normal.” Add this to the laundry list of things I was wrong about.
While Hope thinks Daddy’s gibberish baby talk is the greatest, Iris knows something is wrong. How could she not? One of her favorite hobbies is watching old videos of daddy singing, dancing, talking, working out or playing with her. That has to be super confusing.
The awkwardness in our interactions is palpable too. Often (on bad speech days) it’s a staring contest until Iris inevitably decides to run away. I can tell she’s trying. But she doesn’t know what to do. And neither do I. There’s no roadmap for where we find ourselves now. What I DO know is how badly I want to scoop her up and sing out, “Daddy’s back!”
Lately I’ve even caught her “testing” me. This investigation was undetectable at first. Imploring me to pick her up or chase her around the house. These are things normal, heathy adults do with her all the time. I presumed she didn’t know I was no longer in that camp. However, the intentions of Iris’s investigation became undeniable when her playfulness morphed into frustration.
“Daddy walk faster!” She demanded while literally pushing my legs from behind.
“Daddy talk faster!” She ordered me when I attempted to quote Anna from “Frozen.”
One back-breaking day, after the full body of her research was in, she flat out concluded, “I don’t want to talk to daddy! I don’t want to talk to him!”
With each of those moments, my heart sank a little further into the bottomless abyss of my failing body. What little now remains above the surface burns with the hottest fiery rage imaginable. And it’s fueled by the unshakable inner monologue of “What could have been.” I’m actually thankful I’m currently so incapacitated lest I tear my own house asunder in a fit of anger.
I don’t see any other way forward than to accept my exceptionally unique new role as a father. Though I can no longer shoot hoops or kick a ball, I can still be present in my daughters’ lives. And I most certainly can be an example of strength and courage for them. Further, my guidance will live on in my writings.
The girls’ unique upbringing stands to be as exceptional as my fatherhood. Even with the added stress of Dad’s care and relative absence, Iris is already displaying remarkable feats of resilience, care and compassion. I suspect they are both going to thrive, not despite this adversity but BECAUSE of it.
Geology teaches us that a diamond can only form under conditions of extreme pressure. Once that transformation is complete, it becomes unbreakable. I’m blessed to have two of these rare gemstones. And someday, with a little loving polish, they’ll be the brightest in all the sky.
That being said, this anger I’m holding onto isn’t going away anytime soon. I’m not ready to allow it. For starters, there’s not a human emotion less constructive than the apathetic nothingness that is depression. Letting myself feel something other than despair, even if it’s sitting in a bonfire of anger, is a transformational necessity of my own. The flames serve as an uncomfortable reminder that I’m alive, as is my enemy. Even more valuable a cognizance — that this unbounded fury bursting from within me is but an indication of the boundless intensity of my love for my daughters. In that way, anger can be quite beautiful.
No matter the agony, I have moments like the following to break the vicious cycle of grief (even if only momentarily). Today Iris and I were playing Gabby’s Dollhouse on the iPad. She was seated in my lap and I in my wheelchair. Mid-game she all of a sudden leans back to stare up at me and boast another one of her bold conclusions.
“Daddy, you’re the best dad I’ve ever had!”