Independence looks different when you’re living with myasthenia gravis

I celebrated Independence Day a little differently this year. While the rest of the country lit fireworks, grilled burgers, and gathered with friends, I quietly celebrated a different kind of freedom — the kind that comes from choosing a new path when the one you’re on stops serving you.

Last week, my book “Barrier-Free Web Design” officially went live on Amazon. It’s available in paperback and ebook formats. Soon, I will have an audiobook version that I am starting to narrate. That might take me a while to finish, since I have to record it in short snippets due to fluctuations in my ability to speak for long periods.

But I digress. This project took 16 months, countless drafts, and more than one moment when I wondered if I should just walk away from it. Last fall, after my editor friend reviewed the manuscript, it was nearly ready for publication. But something didn’t feel right. The book was good. It was solid, practical, and helpful. But it didn’t feel complete.

So I paused. I stepped back. And I gave myself permission to change course.

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That permission is something I’ve had to learn repeatedly while living with myasthenia gravis (MG). MG doesn’t care about deadlines, plans, or the “shoulds” we place on ourselves. It forces us to adapt, pivot, and rethink what we thought was set in stone. Sometimes that looks like changing careers. Sometimes it looks like changing care teams. And sometimes it looks like rewriting a nearly finished book because your intuition tells you it’s not done yet.

In my case, I added an entirely new chapter about artificial intelligence and accessibility — a topic that didn’t exist in the same way when I first started writing. I created infographics to make the content more digestible for readers who learn visually. I expanded my sources, grounding my beliefs in research and lived experience. And I reshaped the narrative so it reflected not just what I knew, but who I had become.

That rewrite wasn’t a setback. It was independence.

The freedom to start over

Living with MG means constantly renegotiating what freedom looks like. It’s not the loud, explosive kind celebrated on the Fourth of July. It’s quieter, more intentional. It’s the freedom to say, “This isn’t working anymore,” and then choose something different, even if that choice surprises people. Even if it disrupts expectations or means starting over.

I’ve changed careers more than once because my body demanded it. I’ve changed care teams when I felt unheard. I’ve changed routines, priorities, and entire life plans because MG forced me to reconsider what independence actually means. And every time, those changes led me somewhere better. They led me to a place that was more aligned with who I am now, not who I used to be.

Publishing “Barrier-Free Web Design” is a celebration of that kind of independence. It’s proof that changing direction isn’t failure; it’s growth, resilience, and the quiet courage of trusting yourself enough to pivot when something feels off.

I’m already drafting my next professional book, “The Barrier-Free Design Model,” and I’m approaching it with the same mindset: flexibility, curiosity, and the freedom to evolve. MG may shape the pace of my work, but it doesn’t limit its scope. If anything, it’s taught me to build a life and career that adapt with me, rather than against me.

Independence Day reminded me that freedom isn’t always loud. Sometimes it’s a whisper. A pause. A rewrite. A new chapter. A different doctor. A changed plan. A fresh start.

And sometimes, it’s a book you weren’t sure you’d finish — until you gave yourself permission to begin again.

Note: Myasthenia Gravis News 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.