Regularly, I’m asked a question that seems simple on the surface but is profoundly complex in its depth: “What would you do if you woke up one day and had 24 hours without Spinal Muscular Atrophy (SMA)?”
At first glance, this might seem like an invitation to a world of infinite possibilities, a chance to step out of my routine and experience life from an entirely different perspective. Yet, every time I encounter this question, I find myself grappling with the sheer impossibility of providing an answer. Not because I lack the imagination or the words, but because it’s hard for me to even conceptualize this alternate reality.
You see, SMA has been my constant companion – the only reality I’ve ever known. This isn’t a story of an able-bodied individual who faced a life-altering event and had to adjust to a new normal. SMA is my normal. Therefore, when it comes to missing out on experiences or yearning for a life different from my own, it’s not a feeling I harbor. I don’t long for what I’ve never known.
Living in Effingham, a place in the middle of nowhere, my options for a fun night out are limited, generally revolving around a local bar scene. But even this, I can enjoy in my wheelchair. There’s no SMA-free requirement to relish a good drink and the company it brings.
This leads me to wonder, what’s the takeaway from such a profound question? If there’s a single lesson to be gleaned, perhaps it’s that it’s completely okay not to fantasize about a life without SMA. It doesn’t indicate a failure of imagination on my part; rather, it signifies a level of comfort and acceptance of my reality, even though there are undoubtedly moments when I wish things were different.
But, let’s indulge in this hypothetical scenario for a moment. If, by some magic, I found myself free of SMA for 24 hours, what would I do? The truth is, even in this imagined freedom, I don’t see myself straying far from who I am at my core. My disability, after all, has not been a barrier to defining who I am, my values, or my interests. Perhaps I’d venture out more physically, maybe take a long walk or try activities that are challenging in my current state. But these actions wouldn’t fundamentally change me; they’d merely be experiences, additional threads woven into the rich tapestry of my life.
The question itself, though well-intentioned, subtly hints at a common misconception – that those with disabilities are always yearning for a ‘normal’ life, a life akin to those without disabilities. It reinforces the notion that our lives are lesser in some way, always on the brink of wanting, of missing out. But this perspective fails to acknowledge the richness of our experiences, the unique lens through which we view and engage with the world.
The reality is, my life with SMA is full of its own joys, challenges, and triumphs. It’s a life where I have forged deep, meaningful relationships, found my passion and purpose, and learned to navigate the world in my own unique way. It’s a life where my disability does not overshadow my abilities, my aspirations, or my achievements.
So, perhaps the real takeaway here is a broader, more universal truth – the importance of living fully in the reality we have, embracing it with all its imperfections and challenges. For me, living with SMA is not about constantly longing for a different life but about making the most out of the life I have. It’s about finding joy in the ordinary, strength in adversity, and purpose in every moment.
While the question of what I’d do with 24 hours free of SMA is intriguing, it doesn’t define my everyday reality or aspirations. My SMA is an integral part of my identity, but it doesn’t confine my existence. The essence of my life, the core of my being, remains constant, with or without SMA. It’s a life I’ve learned to navigate, cherish, and celebrate, one day at a time, with all its complexities and simplicities. And perhaps, that’s the most significant takeaway of all.
I’d like to make this blog a bit more interactive, so I’ve created a Google Form that lets anyone send in questions or topics they would like me to explore. You can even submit anonymously, if you wish.
Tell me what you want me to write about. Nothing is off-limits, but I don’t guarantee I will create a post based on your input.