29 and going on 19: A golden retrospective
Months ago, I had an idea for a column. I wrote it down with the intention of revisiting it around my golden birthday on June 29: “Diagnosed at nine months, given nine years to live, and going on 29.”
I thought it was cute at the time, a hook I could use for my annual birthday column: Look at all of the nines in my life, and now I’m turning 29! But the joke has taken on more meaning over the past several months.
The odd one out
When you are given nine years to live, you inevitably develop a strange relationship with time. It feels unreal in a lot of ways. There’s how the world processes time, with the universally recognizable stages of childhood, adolescence, and adulthood. Then there’s how you process time, which is to say that, on any given day, you feel like a child in an adult’s body, or a teenager cursed to stay the same age forever.
Maybe that’s dramatic. But I’m feeling it more and more these days. All around me, people are achieving the typical, young adult milestones, and I’m over here with my “Star Wars” pajamas and parental units-slash-best friends. It’s all jumbled in my heart and in my head, to the point where I feel adrift.
I think everyone feels that way to a certain extent. But SMA only sharpens the perceived disparity. Like Taylor Swift sings on her latest album, “All my friends smell like weed or little babies.” What happens if you don’t fall into one of those two categories?
Finding an anchor in my past self
Earlier this year, I started joking about being 19 again.
Part of it was the quarter-life crisis I’ve been writing about for months. My 20s were supposed to be this raucous whirlwind of a decade. Instead, they were mottled by depression, heartbreak, and disease. I wanted to do it over again, knowing what I know now.
More than anything, though, it stemmed from a deep confusion. I wasn’t sure who I was anymore. My childhood, adolescence, and adulthood had become a tangled mess, to the point where I could barely identify where I was in life — and where I wanted to be. So I went back to when I felt the most “me.”
I started with the things I loved at 19 years old, namely “Doctor Who.” The 60th anniversary of the British sci-fi franchise featured, to my surprise and delight, a woman in a wheelchair. The titular character’s time machine, the TARDIS, was even renovated to include a ramp.
To some, that may not seem like a big deal. But it felt like I was being invited to reclaim the things that had shaped my younger self. “Doctor Who” was one of them: a silly little show that had informed everything from my taste in storytelling to my politics and personal philosophy. I fell out of love with it sometime in college, but here it was a decade later, calling me back to one of the truest, most unapologetic versions of myself.
I did the same thing with music, curating a playlist of songs that I had loved when I was 19. Some of them were bangers; others I distinctly remember listening to on the sly, convinced that my taste in music was something to be ashamed of.
I even started to reclaim my writing. I’m not there yet — I still have a lot to untangle, particularly when it comes to prioritizing what brings me joy over what is commercial. But I’ve made progress, which feels important to acknowledge as I turn 29.
Celebrating my past and future
There’s something about birthdays that I find soothing. Existentially frightening, too, as every year, I get a little bit older. Still, I find comfort in the inevitability of it, not to mention the ubiquity.
Every year, we get a little bit older. Every year, we become a different version of ourselves, honoring our past incarnations by becoming something even better. Isn’t that incredible?
It doesn’t matter how lost I feel. My 19-year-old self is somewhere inside me, as is my 9-year-old self, and my 9-month-old self. They’re all me. And with my golden birthday comes an opportunity to celebrate my past, my future, and everything between.
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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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