Schuyler’s Monster

Extraordinary Books: Schuyler’s Monster

I hesitate to review authors on their literary technique; it would be akin to me critiquing igloo architecture. However, I will address content within the books I post on Nobody’s Normal. I recently finished “Schuyler’s Monster: A Father’s Journey with his Wordless daughter” and it absolutely fits on the Nobody’s Normal bookshelf. Robert Rummel-Hudson writes from the familiar, at least to me, perspective of a dad coming to grips with his child having a disability. The shock of the diagnosis, the instant sense of ignorance, the struggle between the professional’s expertise and the parent’s intuition, etc. While living in this extraordinary culture has moments of beautiful sunsets, it also has hurricane moments and Rummel-Hudson’s family weathered a few storms.

Reading of their intense battle with the Special Education teacher, the school board, and the system were reminiscent of the frustrating moments my friends have shared. Schuyler (pronounced, Sky-ler) was bullied by the teachers who were trusted to look out for her, using her inability to speak as their cloak. It was an appalling account. I enjoyed his retelling of their discovery of communication devices; he calls it her “big box of words.” Jeni and I have been there, along with many of you – the rose of technology and the thorn of expense.

Schuyler has something called Bilateral Perisylvian Polymicrogyria (BPP); I’ll let the author explain.

The monster has a family name, an imposing handful of syllables the doesn’t feel natural on the tongue no matter how many times you say it. Polymicrogyria. Despite its heft, however, the word breaks down into very easy pieces. Poly, or “many.” Micro, or “small,” and gyria, which are the folds in the surface of the brain, the things that make a brain look like a brain. A typical brain is composed of many different folds, but in a brain afflicted with polymicrogyria, there are too many of these folds and they are smaller than they should be.

As you might guess, mom and dad were ignorant of BPP prior to Schuyler’s diagnosis. Just like Jeni and I were ignorant of Cerebral Palsy, and most other extraordinary parents were before their child was diagnosed. It’s indicative of our Normal culture. Struggling to allow their wordless daughter to communicate, striving to get an accurate diagnosis, and investing their entire selves into their daughter’s world were catalytic for their own drifting apart. Rummell-Hudson frankly shares the destructive patterns that led to infidelity in their marriage. Their’s is a warning for all extraordinary parents to heed.

The author also shares some deep struggles he has with God, or the idea of God. Who among us hasn’t asked difficult questions? Who is immune from doubt in light of personal struggle? He is unflinching in his retelling, honest and real. Ultimately, for Rummel-Hudson. the most profound question he ponders is how Schuyler is so radiant and hopeful in spite of her diagnosis. “She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closes to God.”

(Please be aware this book has some rough language, deals with some unfortunate decision-making, and has at least one incident where a description that, while truthful, was unnecessary to the story and depicts immoral behavior. Schuyler’s Monster is compelling and it will resonate with many, but its a PG-17 read. Just FYI.)