Schuyler's Monster by Robert Rummel-Hudson

When we tried to explain polymicrogyria to her when she was very young, she fixated on the idea that there was something in her brain causing mischief. People assume that “Schuyler’s monster”, the term I used even before my book to describe her brain malformation, was a metaphoric creation of my own. She loved dragons and sea monsters the most, and as a baby, she fell in love with a King Kong figure I had in our apartment. Looking back on Schuyler’s life, her love of monsters goes back to the beginning.

Schuyler was upset because the poster thought that monsters represent things that are bad. “I understand that poly is not a real monster and I am not dumb,” she said.īut it quickly became apparent that the thing that bothered Schuyler the most was not the besmirching of her dear father (insert deflating ego-balloon sound here) or even the suggestion that she wasn’t smart enough to understand metaphor. Schuyler was less forgiving, not just in defense of her father (although that part was incredibly sweet), but also because she felt like the poster was insulting her intelligence. Even in a case like this where I feel okay with my word use, I also value the discussion. I didn’t take it too personally my use of language is worth examination, and I’ve certainly made some huge mistakes in the past. So it was that Schuyler witnessed an exchange I had with someone who took a very dim view of my use of the word “monster” in describing Schuyler’s polymicrogyria. They are almost always people on my feed as well, and so we end up reading a lot of the same discussions. In particular, she’s accepted friend requests from people with disabilities from time to time. Schuyler is becoming more and more active online, and has begun pushing the door open to friending people beyond her immediate circle of real world friends and family. Art by Laura SakoSchuyler told me, “You should write about this.” So I shall, and she’s going to help.

Schuyler's Monster by Robert Rummel-Hudson