I’m grateful to MG for teaching me how to live life fully

There’s a French saying I’ve always loved: “croquer la vie à pleines dents,” which literally means “to bite into life with full teeth.” It’s used to describe someone who lives passionately, who devours every moment of joy, adventure, and beauty with intensity.

That expression has always defined the way I live. It’s almost animal instinct — the urge to connect deeply with everything, to be excited by the smallest details, and to throw myself fully into life. But then myasthenia gravis (MG) invited itself into the equation, and everything shifted. Suddenly, loving life became harder. It became a challenge. A fight.

Now, let me be clear: I’ve never liked comparing illness to a battle. In a battle, you choose to fight. You prepare for it. You have something to win or lose. Illness doesn’t work like that. It imposes itself on you without warning. No declarations, no strategy, no mercy. You have nothing to win and everything to lose.

Recommended Reading

May 1, 2025 Columns by Sarah Bendiff

An open letter to my younger self about life with myasthenia gravis

The hard days

There are days when I want to give up and cry myself to sleep. For example, I’ve been trying to start working out at the gym for three months now, but every week, a different muscle starts hurting. I keep saying, “Next week I’ll start for real.” But MG keeps showing up.

Right now it’s spring, and for some reason, this season always brings a flare-up for me. I wake up in the morning not knowing if I’ll be able to follow through on my schedule or if I’ll have to cancel everything I’d planned. Work, meetings, projects — my entire world feels on hold.

My work means everything to me. I’ve launched several personal and professional projects that I genuinely love. And while I thought going digital would make life easier — hello, flexible schedules — I somehow forgot that entrepreneurship comes with its own chaos. You don’t work 9-to-5 anymore. You work all the time.

The birthday breakdown

Sarah Bendiff is fully happy with her donuts. (Photo by Dounia Bendiff)

For my birthday this month, my sister planned a beautiful surprise party. I woke up feeling energized and excited, looking forward to celebrating at 3 p.m. But MG, of course, decided to join the guest list. My body completely crashed at 11 a.m.

You know what I did?

I took a long nap from 11 to 2, asked my sister for a full-body massage (thankfully, she said yes — birthday perks!), and then I forced MG to come party with me. I didn’t cancel the day. I adapted it.

I paced myself, stayed calm, and made intentional choices to protect my energy. There were a bunch of activities at the party location, including pottery and archery. I’d had been dreaming of trying archery all week, but when the moment came, I chose pottery.

Why? Because it was gentle. Because it was doable. Because it meant I could continue to be a part of the fun. And instead of being frustrated about what I couldn’t do, I allowed myself to be excited about what I could do.

That’s when I realized what “croquer la vie à pleines dents” really means. When you bite into an apple, you’re not biting into every fruit. You’re choosing that apple. Fully. With intention.

Loving life with MG doesn’t mean chasing every thrill. It means choosing the thrills that are available to me in the moment and savoring them with everything I’ve got.

Gratitude in disguise

Most importantly, MG has taught me to fully embrace each moment, because I know what it’s like not to have access to moments. I’ve lost them before — whole days, weeks, even months stolen by exhaustion and pain.

And that consciousness? That’s something people spend years developing through yoga, meditation, and self-discovery. I didn’t go searching for it; MG gave it to me. In that way, I’m grateful.

I’m grateful that MG made life harder, only so I could appreciate the best parts of it even more.

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.