In my life with SMA, I strive to find the balance between joy and sorrow

I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills.

So, when my friend told me as we rode in the car one day that my balance was really good, I burst out laughing. And then, right on cue, we hit a pothole, and I flopped around like a rag doll, letting my body prove her wrong.

“No,” she said as we continued on. “I mean the way you balance joy and sorrow in your life.”

Oh. That.

Hearing that warmed and resonated in my chest, stirring up a whole catalog of battles and victories, losses and gifts. I could write a book about the different ways joy and sorrow have braided together over the years. But the thread I keep returning to is what it means to hold both while living with SMA.

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Joys and sorrows

There have been real celebrations in my journey with SMA — milestones reached, illnesses I’ve recovered from, birthdays passed, surgeries I survived. I still remember earning a perfect attendance award at school and my family celebrating because it represented a miraculous year without hospital stays. And of course, there was that time when the U.S. Food and Drug Administration approved an actual medical treatment for SMA. What a surreal and amazing day!

But there’s also pain and struggle, and some seasons are longer and heavier than others. SMA’s progression means continual grieving — about strength that used to be there, over independence that used to be easier. There are things I cannot change or make right, and I feel deeply the burden of living in a broken body.

Strangely, SMA has also opened doors I never would have had access to otherwise. I’ve met the governor of North Carolina. I’ve ridden in Santa’s sleigh in the Macy’s Thanksgiving Day Parade. I’ve spoken on prominent platforms like the Muscular Dystrophy Association Telethon and even on the floor of the House of Representatives. How many 12-year-old girls do you know who can say they’ve done all that?

And yet, I’ve also felt the sting of broken and unjust systems. Sometimes it’s a narrow doorway, and sometimes it’s a web of red tape that turns basic access into an obstacle course. Those moments can be disappointing because they’re not just inconvenient; they’re reminders of what I cannot do because of my diagnosis.

The most enduring joys, though, have been with relationships, especially the remarkable people in the disabled community who have taught me so much about courage, resilience, and strength through their own powerful and inspirational stories. But loving a community like this also means sorrow and walking alongside friends through setbacks, hospitalizations, and losses that can’t be explained away.

What centers and grounds me

When I practice balance on an unsupportive surface, I can’t lean too far to either side. I have to find what centers me, what keeps me from tipping over. That’s what I’m learning to do emotionally, too. If I cling only to joy, I become fragile and unrealistic. If I give in only to sorrow, I become hollow and hopeless. The balance is not in pretending that either doesn’t exist; it’s letting both tell the truth, without letting either one take over.

For me, that center isn’t my health, my opportunities, or even the people I love, because all of those can change in a moment. My steadier hope is rooted in someone greater than me, a faith that reaches beyond what I can see right in front of me.

Some days, I still flop like a rag doll when life hits a pothole. But I’m learning that stability doesn’t come from a life without jolts; it comes from returning, again and again, to the things that ground me.

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.