I am living my best life, one MG moment at a time
Living in the moment means expanding my definition of what a good life looks like
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Living your best life sounds like a big and overly simply goal, the kind people put on vision boards or stitch onto throw pillows. But living with myasthenia gravis (MG), I’ve learned that my “best life” isn’t a sweeping transformation. It’s not a grand plan or a 10‑step program. It’s a moment‑to‑moment practice built from tiny choices that look ordinary from the outside, but feel revolutionary from the inside.
MG has taught me that the only way to live fully is to live locally and present in the right here, right now, inside the moment I’m actually in. Not the moment I wish I had. Not the moment I planned for. The moment I’ve got.
Some days, that moment is being thankful that my intravenous immunoglobulin infusions are the following day because my legs feel like I’m dragging them through 5-foot-high snow drifts. Others it looks like me side-eyeing my hubby while I paint the second coat of dark blue on an accent wall in my home office.
Living my best life one moment at a time means that I’ve stopped waiting for the perfect day. There’s no such thing. Instead, I take the good days by the horns and do my best to be smart about chasing that feeling of being a productive member of my household. Work/rest cycles are nonnegotiable and have helped me have more good days.
Having more good days because I am learning how to better pace myself and that the work/rest cycles are not a suggestion means when the not-so-good days hit, they’re not as negatively impactful. I am better able to accept them for what they are and give my mind and body the rest and recovery they undoubtedly need.
One moment at a time
Living moment to moment doesn’t mean shrinking my life. It means expanding my definition of what a good life looks like.
It means noticing the small wins:
- The morning I shake the muddy head in two hours instead of four
- The afternoon I walk up and down the stairs (twice!)
- The day I was able to teach a barrier-free design website and SEO workshop where I was required to talk for four hours and my voice never worried
It means letting those wins matter. It also means letting the hard moments matter — not as excuses, but as my truth. MG may be a huge part of my life, but it is not the whole story. When a moment is rough, I don’t pretend it isn’t. I acknowledge it, adjust, and move on to the next one.
MG may shape my moments, but I get to shape the meaning of them. And when I stack enough intentional moments together — the gentle ones, the gritty ones, the triumphant ones, the messy ones — that’s where my best life actually lives.
Not someday. Not when things get easier. Not when symptoms behave. Today. Right now. This moment, and every moment, one at a time.
I challenge you to start living for the moments and chase your best life.
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.
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