Shawna Barnes

Two years ago, I was living a life that felt like mine. I had purpose and direction. I had a body that mostly cooperated. I was building things — businesses, platforms, routines, dreams. I was moving forward. Now, I’m not. Instead, I’m being fitted for a ventilator. Not “maybe someday” or “if things get worse.” Daily noninvasive ventilator breathing support. Every single damn day. And I have to use my BiPAP at night. My breathing muscles have decided they’re done negotiating.

Last week, I promised a friend I’d drive her to a surgery. It wasn’t my appointment, but anyone living with myasthenia gravis (MG) knows that showing up for anything requires its own kind of preparation. I spent three days doing what I’ve learned to do before any major commitment: resting, banking energy, using my BiPAP, and trimming my activity down to the bare minimum so I wouldn’t accidentally overspend.

I used to love summer. I wasn’t just a “summer person” — I lived in it. I was an outdoor lifeguard and swim instructor, spending entire days in the sun, water, and heat without thinking twice. My body used to thrive there. Until it didn’t. Myasthenia gravis (MG) arrived, and summer became something I watched from behind a window. The heat became my nemesis, a barrier. I now spend June, July, and August tucked inside with the air conditioner running, watching the season I used to love pass me by.