When growing older, surviving SMA is more than enough

When survival alone is extraordinary, the bar for other things seems higher

Brianna Albers avatar

by Brianna Albers |

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I’m listening to my caregiver’s daughter talk about life as a first grader when I realize …

I’m old.

I don’t know when it happened. One minute, I was graduating high school, and the next I was turning 30. The thought is terrifying. Where did all that time go? I remember the broad strokes of it all — writing, studying, playing Dungeons & Dragons with my friends in my parents’ basement — but the details are vague, blurry.

“I miss being little,” I tell my friends once my caregiver and her daughter have left for the day. “I miss feeling like I had potential.”

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The banner for Brianna Albers' column depicts a wolf howling against a background of mountains and trees, with the words

I owe my life to an incredible support team growing up

The world was wide enough

I sit with the feeling for the rest of the day, turning it around and around in my hands until it’s as smooth as a pebble.

I don’t miss being young. I had friends, but they weren’t the kind of friends I needed; I had dreams, but they were mottled by how much I hated SMA. I loved the world, but the world didn’t love me, a shy teenager with a degenerative neuromuscular disease who only wanted to belong.

Growing older has its benefits, like learning about disability pride and finding people who love me for me. I am, admittedly, a little less starry-eyed, but that’s a good thing. I know the world will try to confine me, just like I know I can overcome whatever obstacles come my way. There’s a realism I was missing at the age of 16, watching “Beauty and the Beast” in bed while my peers were living it up at homecoming.

But I miss the optimism. I miss feeling like my whole life was ahead of me. I miss dreaming about all the things I would do when I got older — because now I am older, and while my life is better than I could’ve imagined, it’s not the life I envisioned as a 16-year-old.

Later, I’m telling my dad that I miss being young. He laughs, because he knows exactly what I’m talking about. “You were told growing up that you could do anything you wanted,” he says. “And now reality is setting in, and you’re realizing that not everything is possible.”

He’s not wrong. But there’s part of the equation, I think, that is specific to SMA. Many of us should not be alive right now. Every day — every breath — is a miracle. So, at least for me, because my continued survival is extraordinary, it feels like everything I do has to be extraordinary on some level. I can’t just have a normal life with a normal job and normal ups and downs.

So I push myself to the brink of burnout. I try harder and harder until I have no energy left. Survival isn’t enough; I have to make every moment count.

What the living do

In moments like these, I find myself returning to a well-loved poem: “What the Living Do,” by Marie Howe. In it, Howe speaks to her younger brother, Johnny, who died from AIDS-related complications in 1989. She details a variety of mundane, everyday things, like a clogged sink or the headstrong blue of a winter sky. And then, like a prayer undergirding the rest of the poem: “For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking, I’ve been thinking: This is what the living do.”

Those mundane, everyday things that make up a life — Howe blesses them all. Buying a hairbrush. Slamming the car door shut in the cold. What her brother called “that yearning.”

“We want more and more and then more of it,” Howe writes, referring to life itself.

Most days, she lives in a perfectly ordinary universe. But then there are moments when Howe is gripped by a “cherishing so deep” that she is speechless. Those mundane, everyday things might seem ordinary, but they are, in fact, what the living do, which in itself makes them worthwhile.

My life is not what I thought it would be at 16. But it is still life. It is ordinary and stupendous, and sometimes, when I think to look for it, there is even magic to be found.

Survival isn’t nothing. Some days, it’s everything. And on the days when I find myself longing for “more and more and then more of it,” I will remember the girl I once was, starry-eyed and living in an enchanted universe.

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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.


Robert Stump avatar

Robert Stump

This is a pretty deep post, and I thank you for it. This is a topic I have had swirling around in my brain for some time now, with similar thoughts and conclusions that you have shared here. Yes, I have many mornings where my aide asks me for my plans that day, and my instinctive answer is always the same, namely "try to stay alive". My aide never likes my answer, but this is my truth: I have many obstacles I must avoid each day in order to continue taking that next breath, and I can't take any day or even a moment of that day lightly.

Just getting to the end of the day is usually enough for me. It's sad if I have to think about it for too long, but like you said in your post, there is magic here, and honestly it's not that hard to find. I have had to give up on some of the thoughts and ideas of what my life could have and should have been, but this eventually happens to everyone and not just us. We are given a small slice of existence to live out as long and as gloriously as we can, and some of us just have a slightly harder go of it.

Brianna Albers avatar

Brianna Albers

Thank you, Robert! I agree. I think so much of living with any disability - not just SMA - is learning how to divorce expectations from reality. It's hard, but I do think it helps us be more resilient and flexible. Hope you're able to find some magic today 💜

Tracy Odell avatar

Tracy Odell

Please don't despair, Brianna! My life began at 18, when I discharged myself from the residential "crippled children's" hospital, then again at 21 when I started working, again at 28 when I met the man who would be the perfect guy for me. By thirty, I had a great job, was married and had an infant daughter. My adult life was in full gear! I started slowing down at 50 but didn't retire until 60 on a bed of laurels I accumulated. Now retired, my health issues are dominated by the same ailments that affect other older folks - gall bladder, regularity and so on. I can spend my time as I wish with the line between advocacy and life being utterly entangled. I never imagined life as a senior citizen, yet here I am celebrating my 66th birthday with SMA 2, my husband of 30+ years, two grown daughters, three granddaughters, a handful of true friends and great attendants. Life ain't perfect; I am plagued by annoying physical issues, but still - 66! You're not old yet, Brianna! Your path will keep unfolding.

Brianna Albers avatar

Brianna Albers

Thank you, Tracy! That means a lot. Best of luck to you!


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