Finding beauty in an ordinary day with SMA

When someone asks me what a good day looks like, my answer probably isn’t what they expect. It doesn’t necessarily involve accomplishing a long list of tasks, doing everything independently, or having a day when my disability doesn’t get in the way. For me, a good day is much simpler. It’s waking up feeling well, having meaningful conversations, laughing with people I care about, and making time for what brings me joy.

I’ve lived with spinal muscular atrophy (SMA) my entire life. As someone with a progressive condition, I’ve experienced changes in my physical abilities and support needs over the years. I cannot do many everyday activities without assistance, and much of my day involves coordinating with others to make things happen. Sometimes even the simplest plans require preparation. Getting ready, participating in activities, or going somewhere can depend on having someone available to help. That isn’t always easy, especially when I want to be spontaneous or when plans don’t work out as expected.

But I’ve learned that I don’t want the logistics of living with SMA to define the quality of my day. Some of my favorite days aren’t particularly eventful. They might involve working on a project I’m passionate about, writing, connecting with my community, or spending time with people who make me laugh. These moments matter because they remind me that my life is about more than managing a disability.

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Some days, my body doesn’t cooperate, my energy is limited, or things take longer than I expected. On those days, I try to permit myself to adjust my expectations. Sometimes that means accomplishing less than I originally planned. Other times, it means finding another way to participate. I’ve learned that a meaningful day doesn’t have to be productive. Resting, enjoying a favorite activity, or simply having a peaceful afternoon can be just as valuable as checking something off my to-do list.

I also think society has a very narrow understanding of independence. We often associate it with doing everything without assistance. But for people with disabilities, independence can look entirely different. I may need someone to help me physically, but that doesn’t mean I cannot make my own decisions, express my preferences, or direct how I want my life to look. There is a difference between needing assistance and giving up control over your life.

For me, independence means having choices. It means being able to pursue my interests, maintain relationships, work toward my goals, and participate in my community with the support I need. I don’t believe needing help makes someone less independent in the ways that matter most.

Of course, I feel frustrated sometimes. I wish I could do something without having to coordinate with another person, and that my body would cooperate with my plans. Those feelings are real, and I don’t think we should have to pretend otherwise. Living with a progressive condition means constantly adapting. What worked for me a few years ago may not work the same way today. My needs change, and I have to find new ways to approach familiar activities.

I’ve also learned not to compare my current abilities with what I could once do or measure my experiences against someone else’s definition of a successful day. Some days, success means making progress on a personal goal. Other times, it means getting through a difficult day and recognizing that I’ve done enough.

I wish more people understood that those of us living with SMA aren’t necessarily looking for extraordinary moments every day. We want opportunities to experience ordinary life, too. We want to make plans, spend time with friends, pursue our passions, and enjoy the little things without every experience becoming a conversation about our limitations.

If there is one thing I want people to understand about living with SMA, it’s that needing help and living a fulfilling life are not mutually exclusive. I can acknowledge the difficult parts of my disability while still appreciating my life. I can experience frustration without losing sight of what brings me happiness. I can need assistance and still have dreams, ambitions, and plans for the future.

My good days may look different from someone else’s. They may involve more preparation, additional support, and adjustments along the way. But they are still good days.

I don’t measure the quality of my life by how much I can accomplish without help. I measure it by the experiences I have, the connections I make, and the opportunities I have to keep becoming the person I want to be. Sometimes, a good day is simply a reminder that, despite everything, life is still happening. And I’m grateful to be living it.

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.