Living with Spinal Muscular Atrophy (SMA) is an ongoing lesson in surrender — a constant balancing act between strength and fragility, control and acceptance. As my body continues to change, I find myself facing emotions I never expected: fear, frustration, and at times, a deep sense of helplessness. This blog is my honest reflection on what it feels like to lose control — and how, even in the middle of that loss, I’m still learning how to live fully.
There’s something deeply unsettling about watching your body slowly change and not being able to do anything to stop it. It’s like standing on the shore, watching the tide pull pieces of you away bit by bit. You can’t hold it back. You can only watch, brace yourself, and hope the waves are gentle.
As I’ve grown older with SMA, I’ve had to face the quiet truth that my body is deteriorating. Tasks that were once simple now take more effort, more assistance, more time. And while I’ve always prided myself on being strong, independent, and resilient, I can’t ignore how the changes make me feel inside. It’s not just the physical loss — it’s the emotional unraveling that comes with it.
I’ve always had quite a controlling personality. I like things organised, planned, understood. I like knowing what’s next. But lately, I’ve started to realise that maybe my need for control comes from being so out of control so often. When your body doesn’t always listen to you, you learn to control what you can — your routines, your environment, your emotions. It’s a survival mechanism. A way of saying, “I can’t control my body, but I can still control something.”
But even that control feels like it’s slipping. There are days when I feel like life is racing ahead, and I’m standing behind a glass window, watching it unfold without me. I can see it all — the moments, the opportunities, the laughter — but sometimes I feel like I’m not part of it. I’m just observing, wishing I could reach through the glass and grab hold of it before it passes me by.
It’s a lonely feeling. Because no matter how much love and support I have around me, there’s a part of this journey that is deeply personal — something no one else can fully understand or carry for me. I can’t comprehend doing it alone, yet I know that, in some ways, that day will come. The idea of being completely dependent, of losing more of what little control I have, terrifies me.
And then there’s the ticking clock. That persistent awareness of time — how fast it’s moving, how fragile everything feels. There is still so much I want to do, so much I want to see and experience. And sometimes, I lie awake wondering if I’ll have enough time. If my body will let me. If I’ll get the chance to live out all the dreams still sitting quietly in my heart.
These thoughts aren’t easy to share. They come from a place of fear, but also truth. Because I think it’s important to say that strength doesn’t mean pretending everything’s fine. Strength is allowing yourself to feel all of it — the fear, the sadness, the frustration — and still choosing to keep going.
So, while I may not be able to control what happens to my body, I can control how I respond to it. I can choose to keep showing up. I can choose to be kind to myself when I’m scared. I can choose to see beauty in small moments and joy in the days that don’t go as planned.
Maybe losing control isn’t entirely a loss. Maybe it’s an invitation — to let go of the things that were never really mine to hold in the first place. To find peace in the chaos. To trust that even when I can’t control my circumstances, I can still create meaning within them.
I don’t know what the future holds. None of us do. But what I do know is that my story isn’t finished. My body may be changing, but my heart is still strong. My voice is still here. And as long as I have that, I’ll keep fighting for the moments that matter.
Because even when life feels like it’s slipping through my fingers, I’ll keep finding ways to hold on — not to control it, but to cherish it.
I don’t know what the future holds. None of us do. But what I do know is that my story isn’t finished. My body may be changing, but my heart is still strong. My voice is still here. And as long as I have that, I’ll keep fighting for the moments that matter.
Because even when life feels like it’s slipping through my fingers, I’ll keep finding ways to hold on — not to control it, but to cherish it.
