Chapter 26: Resolution (Part 1)
The New Year brings with it a much needed renewed sense of determination.
I’m seated on the banks of broken dreams and the seasons continue to flow by faster than my hands or eyes can type. ALS, as unrelenting as it is, is not the methodical river that carves out the Grand Canyon over the millennia. It is the flood capable of suddenly overtaking the dam. One day you can walk; the next morning you wake up and never take another step. In my case, it was my hands that were seemingly washed away overnight. Temporarily with it, my new identity as a writer and storyteller.
The transition to Eye Gaze has been both terrifying and infuriating. Terrifying because if I can not adapt to it somehow then I will have no reason to go on living. Infuriating because I refuse to allow that to happen despite the technology being extremely underwhelming. I’ve scrapped countless half-finished blog posts at this point, most due to lost relevance. Heartfelt stories of Thanksgiving and Christmas met the same fate as the very hands failing to scribe them: drowned in a sea of heartbreak.
Christmas Eve at the Wolverton household (Jamie’s family).
While I continue to decline, our 8-month-old, Hope, continues to hit growth milestone after growth milestone. It is a circle of life experience like no other, played out on fast forward.
Over the course of her first year, my daughter and I have swapped rankings in a multitude of proficiencies. Grasping objects, turning over, eating, sitting and standing up. Coming soon... walking and talking (she can already say “Da-Da” better than I).
As we converge in our physical capabilities we become forever bonded in our shared frustration of our limitations. I’m convinced no human alive understands better than I the cries of a helpless infant, unable to do that which makes us human in the first place. Communicate. Explore. Thrive.
Another commonality is our one-sided relationship with love. For neither of us stands a chance at matching that of Jamie’s. We’re both too selfishly consumed with surviving the day. The only fundamental difference being, in Hope’s world, you won’t uncover a filthy nest of shame the first stone you turn over.
Depending on how long it takes me to complete this writing, I dare say we just celebrated the New Year (no matter what, I’m not giving up on this chapter). It was only a few celebrations ago that we ushered in the worst period in Smith family history. The year 2020 to be exact. That’s when the universe introduced a pandemic and ALS into our lives. Jamie and I attempted to flip the script come 2021, when it was us who waved four middle fingers right back, introducing Hope. But now as I reflect on the past year in its entirety (as is customary for me), I realize that somewhere along the way I didn’t hold up my end of the bargain. I lost faith in our baby girl’s namesake.
My sweet Hope growing up before my very eyes.
Aside from the obvious chore of merely surviving the moment, the best explanation I have for this surrender to hopelessness is that it seems far easier to accept the losses than to fight them. Like a fire lacking oxygen, so too will disappointment turn to ashes without the fuel of ambition.
Now 2022 is upon us and with it the teasing whirlwind of possibility. As a former personal trainer I just can’t help myself when it comes to fresh starts and new beginnings. I always cultivated the attitude that goals were imperative to an intentional life. And what better place or time to address that process than the clean slate of a new year?
But I think it’s important to realize it’s not every 12 months we’re faced with a choice; rather, it’s every day that we live and breathe. No matter how dire the situation there is always some level of control we have, be it our actions or our reactions.
I want it known that I judge no person whose daily decision is to merely survive. For those of us staring down a debilitating, terminal illness, it’s courageous enough to have that goal. It’s just that that’s not good enough for me.
To double down on that, I’m of the controversial philosophy that nobody is “okay“ just the way they are. What a horrible thing to say to someone, especially if they’re suffering. You’re gonna tell me I shouldn’t strive to transcend my current predicament? That there’s nothing more I can be? I’m not buying that.
Maybe that’s my fatal flaw. Never allowing myself to achieve anything resembling satiation. Certainly makes foreign feelings out of fullness and satisfaction. But the benefit is I’m always hungry. And that strikes me as important in times like these. Besides, as I understand it, on the other side of the flood often lies abundance. Perhaps I’ll have my fill yet.
Less abstractly, despite the devastation, I desire a spectacular life. Always have. The instances are rare when I’ve suppressed my long-held, grandiose belief: “Why NOT me?”
A book deal in 2022. Why NOT me?
An ice bucket-sized #FlexOnALS challenge this upcoming ALS Awareness Month. Why NOT me?
A first-of-its-kind victory over ALS. Why. Not. Me?
But these are dreams that have been shelved ever since my research trial ended. Most days, unlike my eternally optimistic wife, I’ve already decided that I’m content with running out the clock. No, it’s more pernicious than that. I’m ignoring the clock all together. And that’s an unacceptable default choice going forward for me and my spectacular life.
So, if you were to ask me if I’m “okay” with who I am today I would tell you that no, I’m most certainly not. I have exceedingly more potential. It took baby Hope to remind me of that. For any time the two of us are together, I can see so clearly...
...the second you stop growing is the moment you start dying.