I can plan an entire outing around my daughter’s comfort without once wondering whether I’ll be comfortable too. I know to think about how far she’ll have to walk, whether there will be somewhere to sit, and how much energy she’ll need to get home. This weekend we’re going to watch the sunset over Manhattan from the Brooklyn side, and those questions came before where we might eat or where I might take pictures. I want her to be able to enjoy being there.
When we go to an arena, I look for accessibility tickets. We did it for Taylor. We did it for Bruce Springsteen. We did it for a baseball game. It’s part of planning when she’s coming with me, as ordinary as remembering the tickets. When I go somewhere alone, somehow all those questions disappear. I’ll stand for two hours or walk twenty blocks, and most of the time I’m okay. When I’m not, I get through it. It rarely occurs to me that I could have planned it differently.
I recently received an official diagnosis of the same syndrome my daughter has. It wasn’t a surprise. I’d recognized myself in it when she was diagnosed, but recognizing it and including myself in the planning seem to be two different things. I’ve lived in this body for sixty-three years. Whatever hurt was what hurt. Whatever I could manage was what I managed. I didn’t have a name for it, and I got very used to getting on with things.
For my daughter, I want an evening she can enjoy without having to push through pain to be part of it. For myself, pushing through still seems like an acceptable plan. I hadn’t noticed that difference until I started thinking about this outing. We have the same syndrome, but only one of us routinely gets considered when I’m figuring out where to go.
I’d like to tell you that realizing this means I’ll remember to think about myself from now on. I know me. I’ll probably be halfway through another twenty-block walk before the thought arrives. But now I have a question I didn’t have before: while I’m looking for somewhere my daughter can sit, can I remember that I’m allowed to sit beside her—not because I’ve earned the rest, and not because I’ve reached my limit, but because my comfort belongs in the plan too?
Omoiyari is kindness that begins with noticing what another person might need. I’ve practiced it so instinctively for my daughter that I forgot it was a way of moving through the world, not a role reserved for me to offer someone else. Maybe extending it to myself begins with the same small act: noticing. The distance. The pain. The need for a chair. The person who has been there all along. When I plan for her comfort, I want to remember to leave room for mine.
