How a locked restroom door has inspired more exercise

My twin with MG describes a frightening but consequential predicament

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by Allen Francis |

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I’m a New York City native now living in Manila, Philippines. I enjoy living here, but the infrastructure is lacking, and the streets aren’t always physically safe. Once I went on a long-distance walk and badly twisted my ankle. It took about two weeks before I could comfortably walk on it, and the experience made me appreciate the need to be more careful, as I live alone in a developing country with only moderate healthcare options in the big cities.

It also made me remember that I’m aging and should be more cautious. That’s something I share with my twin, Aaron, who lives in New York City and has myasthenia gravis (MG).

On a recent video call with Aaron, I told him about twisting my ankle. I was embarrassed about it because I’m a klutz on my feet; I’ve fallen on my face in the street another time, too.

Aaron, in response, told me a story that he’d kept secret for five years. The tale unnerved me. It made me realize how dangerous it can be for him to leave the house if he’s not fully vigilant and mentally prepared.

The bare bones of the story: Aaron got locked in a supermarket bathroom and couldn’t escape for several minutes.

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Aaron was diagnosed with MG in 1999, when he was 24. We both recently turned 50. Since our family didn’t speak openly about his MG for decades, he and I have been making up for that over the past several months.

After I told Aaron about my walking accidents, he told me about the embarrassing restroom event, which he’d not shared with anyone.

Five years ago, he told me, he went to the local supermarket and, while there, needed to use the restroom. As he was about to leave that space, he realized he couldn’t turn the round, frictionless, stainless-steel doorknob. He needed a firmer grip and pressure than his MG-weakened hand could muster.

“It was a heavy metal door,” Aaron said to me. I could feel his embarrassment as he spoke. “I couldn’t open the door.”

Aaron told me he didn’t think he was having an MG flare-up. Nonetheless, he was trapped in the bathroom for over five minutes. He didn’t want to yell for help, but he worried about how long he’d be stuck.

Finally, he used the inner lining of his jacket pocket to get a firmer grip on the doorknob, which worked. Before then he was starting to panic and get angry, which doesn’t help his condition. It’s good he stayed calm long enough to get out. Getting angry could’ve triggered a flare-up and more muscle weakness.

We discussed how we both need to be more careful as we age, but it was a hard subject. We’ve discussed how we must exercise more often and watch what we eat.

Aaron told me that he changed his mindset, as well as his practices, after that supermarket incident. He now makes sure someone knows where he’s going whenever he goes out. He tries to avoid public restrooms if he’s alone. He also makes sure his cellphone is fully charged when he leaves home. And if there’s a heat wave, he avoids going outside unnecessarily; in fact, he avoids the outdoors if he feels weak, whatever the season.

The restroom scare still compels him to exercise as much as he can to keep MG weakness at bay, he said. I understand why Aaron kept this tale a secret, since he hates pity and is determined to do as much as he can on his terms. Still, I’m happy he told the story and how he’s responded.

Aaron is largely a homebody now because of MG, but I’m happy he has these contingencies for when he goes out. I asked him if he’d considered getting a MedicAlert bracelet. He said yes, but he hasn’t done it yet.

It feels so odd having these “old guy” talks with my twin, even though we need it. We’re not as young as we used to be, but even so, Aaron refuses to let MG trap him to a lesser lifestyle. That makes me proud of him.


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.

Diane Martin avatar

Diane Martin

When my daughter was a toddler, back in the early 1980s, I was cautious and avoided public restrooms for precisely the reasons Mr. Francis describes. I have had MG since 1983. Once we were driving somewhere, and she needed the toilet, so I stopped at a gas station. I couldn't turn the knob inside the bathroom, and we had to resort to shouting and pounding on the door for about 15 minutes. My daughter was frightened and in tears; I was exhausted and upset.

A few years ago, I got trapped in an airport disabled bathroom for the same reason, with the same result. I nearly missed my flight. When will builders and designers learn to consult disabled people?

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