‘So Many Fade, but I’m Still Here’: Reflecting on 2022’s Small Changes
Winter in Singapore isn’t like winter in many other countries. Not much changes in terms of the weather. It might be cooler on days when the Fates are kind, but for the most part, conditions stay hot and humid. We don’t get glittering blankets of snowfall or sheets of ice, only downpours of rain. No one bundles up; we all wear our T-shirts and shorts and whatever else is in our spring-through-autumn wardrobe. The only real changes are decorations in the city, the introduction of holiday menus, and festive cheer widening the smiles on people’s faces.
I’m not knocking the lack of change in weather. I tend to be change-adverse myself, and according to my neurologist, extreme temperature changes can irritate my nerves that are affected by chronic neuropathy.
But looking back on 2022, winter in Singapore is an apt metaphor for how I feel about the year: Small changes have occurred, and I’ve had glimpses of joy and reasons to celebrate, but for good or ill, everything has remained mostly the same.
Mistakes in finding change
At the start of January, I wrote about how I skip New Year’s resolutions to avoid disappointments, but I still cling to hopes, wishes, and dreams for the future — the miracles that could happen if I keep moving forward and refuse to quit.
I was optimistic about advancing my career in games journalism, had great topics planned for my column, and was working on personal poetry and short stories. I made a writing playlist that hinted at the themes of the column entries I’d be publishing each month. I wanted to dust off the pieces of myself that grief for my body blew apart in 2021 and make something beautiful out of them.
But 12 months later, my growth as a games journalist didn’t meet my expectations, a number of column topics weren’t written according to plan because of curveballs life threw at me, and I haven’t worked on my poetry or fiction at all. The pieces of myself blown up by 2021’s grief are still jagged and sharp enough to cut, now sometimes lost among the pieces shattered by the grief that 2022 brought to multiple areas of my life.
On the dullest and worst days, I feel stuck. Like the miracles I’ve been waiting for will never materialize, and I should just give up and quit everything. Those days keep coming with what feels like increasing frequency. On better days, when the skies are more of a faded blue than a lifeless gray, I’m trying to reframe where I’m at and focus on the good that happened to me this year.
My girlfriend, Hannah, and I acknowledging that we didn’t want to resist our romantic feelings for each other tops the list. I unfortunately can’t spend the rest of this column singing her well-deserved praises due to the word count limit, but I wouldn’t be where I am today if it weren’t for her love and support. Without her, the past two years would’ve been much lonelier and bleaker.
While I haven’t made as much progress as I would’ve liked as a games journalist, my writing has grown stronger and I’ve stepped out of my shyness as I learned to conduct interviews. I’ve even launched a site, Finally Playing, where I’ll be writing reviews for games I’m only now getting to play after creating a setup that’s compatible with my SMA’s progression.
And most importantly, I’m alive. I don’t know why or how, but several months ago I survived a severe infection and traumatic hospitalization that nearly ended in my death. Realizing this, two songs about receiving one’s due — “Hamilton’s” “Wait For It” and Taylor Swift’s “Karma” — have been on loop in my head. The last line from “Karma’s” bridge, in particular: “Ask me why so many fade, but I’m still here.”
I have to believe there’s a reason I’m still here. I have to cling to the notion that the miracles I’m working toward are waiting for me in the wings — a fulfilling career, a robust and diverse writing portfolio, and, if I’m feeling ambitious, access to disease-modifying therapies to halt my SMA’s progression. After all, my relationship with Hannah was a miracle itself once upon a time. Why can’t the others happen?
So as 2022 closes, I’m looking to the last song on the writing playlist I made for the year. Sara Bareilles’ “December” is a bittersweet ode to the month she, Swift, and I were born in. Its themes about letting go and gaining a new perspective, like what I’m trying to do, are encapsulated in the last lines of another great bridge: “And I’m starting to believe in the power of a name/ ‘Cause it can’t be a mistake if I just call it change.”
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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