How I’m facing down the ‘End of Youth’ with SMA

My dad had a handful of stories he liked to tell when I was growing up, like repeatedly playing a favorite vinyl record. One was about me loving music since I was an infant.

“You’d stop crying when I sang,” he’d say.

As a child, I regarded his recollection with suspicion. I still do, somewhat. My dad, God bless him, has a pleasant demeanor but not that pleasant of a voice. At the same time, I can’t help but imagine scenes of my inconsolable newborn self and my dad trying everything to soothe me while rocking me in his arms. It’s not like I remember anything from my earliest years, nor have I presented any behavior contrary to his claim.

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Readers of my column can perhaps attest to the fact that I process much of my life and emotions through music. Lyrics from pop singers to Disney films are scattered across my entries. It’s by listening to artists tell their stories through song that I can find the words to tell mine. In another life — one without SMA and weak lungs — I might’ve followed their footsteps into recording booths to create my own albums.

I don’t know what makes music so conducive to my brain’s processes or why other art forms don’t work as well for me. Save for my brother, Gabriel, who plays guitar as a hobby, none of my immediate family members have musical bones in their bodies. It’s something that just is.

‘Arms and hearts wide open’

One of the most cathartic songs I’ve been listening to lately is Ed Sheeran’s “End of Youth.” It was released on the last of his mathematically inspired albums, “-” (“Subtract”). In describing the album on Instagram, Sheeran recounts his then pregnant wife’s cancer diagnosis, the sudden death of his best friend, Jamal Edwards, and an infringement lawsuit alleging he plagiarized Martin Gaye’s classic “Let’s Get It On.”

“I was spiraling through fear, depression, and anxiety,” Sheeran wrote. “I felt like I was drowning, head below the surface, looking up but not being able to break through for air.”

When you go through my columns, a similar picture emerges of me with my head under the waters of fear and grief. In the past two and a half years, I’ve experienced trial after trial, from moving to a new place for a while before returning home, to losing functions in my body due to SMA and fighting a Sisyphean battle to stabilize SMA’s progress. There have been moments of relief and joy, like when I began writing professionally and entered into a new romantic relationship. But they feel few and far between.

Yet, in my mind, I couldn’t describe what was happening to me until I heard Sheeran’s song. As it turns out, all this time I’ve been grieving for my youth.

When I listen to “End of Youth,” I become aware of all of my sadness, bitterness, and the consequences of my bad habits. These include an inability to muster the emotional energy for messages, a tendency to withdraw and isolate, a disregard for the same advice I give others, and a past that tears me down when I try to grow. Memories fade into tears.

After watching adults in my life become jaded in one way or another, I used to tell myself that I’d never let it happen to me. But when Sheeran sings, “We spend our youth with arms and hearts wide open/ And then the dark gets in and that’s the end of youth,” I recognize that a certain spark I’ve had has long been dimmed.

‘It’s all part of life’

We SMA patients are no strangers to grieving our past selves. We do it all the time, as our bodies succumb to the disease and we reminisce about what we were once able to accomplish. But this grief — this recognition that my 20s are perhaps the last years of my life when I’ll approach the world with curious, innocent openness — feels different somehow.

I don’t know what to do with these thoughts and feelings except to process my loss with my earphones in place, after which I tell myself two things: The first is that I’m not the only person who isn’t like Peter Pan — forever youthful, free-spirited, and naive. We all eventually must leave the early phases of life behind.

The second is that I have to make every present moment count, before the future sweeps it all away. If I must grow up, I must do it on my terms and minimize the possibility of having regrets as much as I can. That might be difficult with SMA, but isn’t everything?

Endings make way for new beginnings — and new music.

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.