Why Be a Hero?

Once upon a time, my boss at a high-profile business lobbying association entered my office, saw me looking wan, understood that I was sick and sent me home. “Don’t be a hero,” he said. “We don’t do rocket surgery [malapropism fully intended] here.” This was long before the global pandemic proved the wisdom of keeping one’s germs to oneself, a time when people generally still saw showing up, no matter what, as a sign of strength. I went home and respected him even more for it.

I’ve thought of that exchange more than once since Duchenne hit the scene more recently. I am both an emotion-driven and a practical person, and at times the two are at odds. I’m still trying to define in some measurable way how to both just live and to do the things I need or will need to do to make that possible. How to show up and act normal while also acknowledging that ours is already a different sort of normal.

Charlie can currently still fit in a stroller (Duchenne boys tend to be of short stature, regardless of steroid regimen) today, but there will be a tomorrow when we’ll need a new solution. We can still get him up the stairs to the second floor, but that won’t be true forever. As it stands now, Charlie will end up in a wheelchair—an absolute certainty unless science solves it sufficiently first (my most fervent wish). Do we plan now for that day or let hope lead? How much room do we make for Duchenne in this moment, here and now?

We’re still figuring that out, but I’m trying to let practicality win here and there. I’m trying to see having a handicap placard just in case not as a sign of weakness, but of strength. Sometimes, it takes some courage to take the assist where it’s available. I’m learning (or trying to). Because it’s really not at all heroic to struggle more than you need to, in the name of pride or principle.