Family, fatigue, and the fine art of showing up

A week ago, I packed up my cane, wheelchair, and excitement and hit the road for a cousin’s wedding. It was a six-hour drive each way, the kind of road trip that used to feel impossible when my myasthenia gravis (MG) was more unpredictable. But now that we’re settled in Wisconsin after a move from another state, and things are more stable, visiting family feels doable for the first time in years.

And let me tell you, it was a crazy, whirlwind of a trip.

We stayed at my aunt and uncle’s place, which gave me a comfy and familiar home base between events. I used my fancy walking stick for the wedding ceremony, which helped me feel a little more dressed up while still keeping me steady. For the reception, though, I knew the wheelchair was the smarter call. Receptions tend to be a mix of standing, talking, laughing, more standing, and even more talking. It adds up fast when you live with MG.

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What I forgot to factor in was just how much socializing can drain the battery. Physical fatigue is one thing, but the mental load of conversations, remembering faces, trying to stay present, and being “on” for hours? That’s a whole different beast. Hubby and I ended up leaving the reception before the dancing really got going. Part of me was bummed, sure, but the wiser part of me knew it was the right move.

Overall, it felt like such a win. A few years ago, I wouldn’t have been able to take a trip like this at all. Now? It’s hard, yes, but it’s possible. And that word — “possible” — feels like such a gift.

We arrived home Sunday evening, and by Monday morning, I was dragging tush. Tuesday didn’t feel much better. You know the kind of tired when even brushing your teeth feels like running a marathon? That kind. My speech was slower, my energy was in the negative, and I was counting down the hours until my next intravenous immunoglobulin infusion. I know it’ll help me bounce back, but in the meantime, I’m moving through molasses and trying to be patient with myself.

Trips like this one are a reminder that MG doesn’t just affect our muscles — it touches every part of how we plan, travel, recover, and engage. It means budgeting spoons like they’re gold coins. It means choosing between the ceremony and the dancing, or planning rest days before and after anything big. It means showing up however we can — and letting that be enough.

But it also means celebrating the wins. Like getting to see my cousin say “I do.” Or finally hugging relatives I haven’t seen in nearly a decade. Or hearing that some family members are now planning a trip up here this summer because they realized how close we are. That’s the kind of connection I’ve missed. And now that I’m in a place where travel is doable, I want to say yes to it — even if I have to say yes differently than I used to.

Living with MG means constantly recalibrating. It’s not about going back to who I was before; it’s about honoring who I am now and finding ways to keep moving forward, even if it’s a little more slowly, and even if I need a few more breaks along the way.

And honestly? That still feels like progress worth celebrating.

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.