There’s no connection between how hard you fight and how well you fare

I have a beef with the way we talk about disease and disability in the United States. I didn’t pay much attention to it until my second child started having seizures when she was 17 months old. When things were bad, she had as many as 60 a day. When things were “good,” she had about 10 a week. This went on for 16 years.

During that time, we heard a lot of bad war metaphors. She was a brave soldier. I was the warrior mama. And eventually, we won the battle against epilepsy with a powerful weapon: a laser that burned away two spots in her brain. 

But the truth is, there’s no connection between how hard you fight and how well you fare. The truth is that people get tired of hearing that things are not going well (and so they stop asking). The truth is that some things can’t be fixed. (Even though brain surgery stopped my daughter's seizures, it couldn’t reverse the brain damage those seizures caused.)

So you slog away. You try to create a sense of normalcy amidst the quiet chaos. You do everything you can to help your child live up to their unique potential. You look for moments of joy amidst the grief that never really goes away. 

This week, Susan Senator wrote about one of those joyous moments for us. Susan’s 33-year-old son Nat is profoundly autistic. Nat loves athletics, especially swimming and mountain biking. But sports that rely heavily on interpersonal dynamics and communication — like softball — are challenging for him. 

“The arcane rules of softball probably make little sense to him,” Susan writes. “When do you run? When do you stop running? It depends on the situation, of course, but Nat craves absolutes, he needs certainty.” 

But at one recent game, under the golden glow of a late-August sun, it clicked. For one brief, beautiful moment, Nat knew to run for home. And Susan was there to see it. 

Stories that center tough topics like epilepsy and autism can go very wrong, very quickly. They can feel like emotional tourism or trauma porn. They can, to use a sports metaphor, swing and miss. But when they’re done well, the reader hears the echoes of their own dreams and disappointments in the writer’s words. And Susan does it well. 

The theologian and author Kate Bowler reminds us that there is no cure for being human. But creating connection helps us survive. And that’s what Cog is all about.

Thanks for reading.

P.S.— Moving to a new place can be hard. We want to make it easier. This week, WBUR is launching a new project, the Newcomer’s Field Guide to Boston, to help our city’s newest residents navigate everything from the MBTA and local politics to the inside scoop on restaurants and neighborhoods from Hyde Park to the North End. Forward this to a friend, family member, coworker who’s new (or new-ish) to the city so they can sign up for our Field Guide newsletter today — it’s a great way to say “welcome to Boston.”