SMA shapes how I navigate a season of personal growth

Some seasons of growth don’t ease their way in; they break you open just enough to let the light shine through again. I’m in one of those seasons now, a chapter filled with reflection, honesty, and tenderness I’ve avoided for years.

My disability doesn’t define me, but living with spinal muscular atrophy (SMA) significantly influences the way I experience these moments. It shapes the lens through which I learn, heal, and rediscover myself, making every lesson feel not just significant, but deeply personal.

I’ve always described myself as a butterfly, delicate but determined, changing quietly in ways most people never notice. But even butterflies don’t transform without a period of stillness, confinement, and surrender. A metamorphosis isn’t graceful; it’s a complete dissolving of what was, so something more authentic and beautiful can emerge.

That’s where I am now. Growth is asking me to sit inside my own cocoon of truth, to release the versions of myself built from survival, people-pleasing, and self-neglect. I’m learning to be gentler with my transformation, to honor the discomfort that comes before the wings, and to recognize that becoming isn’t about perfection; it’s about finally allowing myself to emerge as the person I’ve been all along.

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My Beautiful Journey Toward Personal Growth

Reclaiming my identity

For years, my identity was shaped by roles, expectations, and the emotional labor of caring for everyone around me. I became adaptable to a fault. I knew how to show up, how to serve, how to encourage, and how to shrink my needs for the comfort of others. But somewhere along the way, I forgot the sound of my own voice.

This season of growth is showing me how to pause long enough to listen inward. I’m hearing the parts of me that went silent, the parts that needed gentleness instead of performance, compassion instead of resilience, presence instead of pressure.

Living with SMA means navigating a world that often expects gratitude for the bare minimum while simultaneously demanding proof of independence. Finding my voice within that tension feels like an act of reclamation. It’s me taking myself back.

People often see my disability and call me strong for simply existing. Their intention is kind, but that kind of praise encouraged me to appear “OK” at all times. So I learned to swallow my discomfort. I learned to carry my pain quietly. I learned to stretch myself thin because I believed that strength meant never breaking.

But now I’m unlearning every one of those survival tactics. The masks are finally coming off.

This season is teaching me that true strength isn’t silent suffering; it’s honesty. Strength is saying, “I’m overwhelmed.” It’s asking for help without apologizing. It’s letting people show up for me without making me feel like a burden. Living with SMA makes these lessons even more profound because every decision, every routine, every adaptation requires truthfulness about what I can and cannot do. Pretending I’m invincible only leads to exhaustion and emotional disconnection. I refuse to keep abandoning myself for the sake of the comfort of others.

For most of my life, my worth felt tied to how much I could give to relationships, communities, and responsibilities. I believed my value was measured through productivity, selflessness, or emotional labor. And living with a disability in an ableist world often reinforced that belief.

But something is shifting.

What growth looks like for me

I’m learning that my worth is not conditional. My existence has value even in stillness. My presence matters even when my body can’t keep up with what society expects of me. My heart is enough. Period.

There’s grief in letting go of old identities, but there’s also an unexpected freedom. It feels like returning home to myself after years of living stretched too thin.

Living with SMA means walking a delicate line between acceptance and longing. It means holding space for what I wish were easier, while also cherishing the beauty and uniqueness of the way I move through the world. It means grieving without drowning, and celebrating without pretending loss doesn’t exist.

This season, I’m allowing myself to hold both.

I can mourn the complex parts of my life, including my physical limitations, the constant dependence, the negotiations for accessibility, while also being deeply grateful for the communities that hold me, the resilience I’ve cultivated, and the depth of empathy I carry. These emotions don’t contradict each other; they coexist, just as autumn holds both decay and breathtaking colors.

Some seasons announce themselves with fireworks. This one arrived like a cold breeze, subtle but undeniable, a truth I could no longer ignore.

Growth for me right now is quiet, but transformative. It’s:

• choosing rest without guilt.
• practicing boundaries with compassion.
• letting myself be fully seen.
• writing my truth even when it feels raw.
• reconnecting with parts of myself I lost while trying to be strong.

Living with SMA shapes this process in ways I’m still discovering. My body requires intention. My emotional world requires gentleness. My spirit requires honesty.

And for the first time, I’m finally giving myself all three.

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.