January 14, 2008
Monday

I fell into the online journal world (now known as the blogosphere, I guess) in 1999 when, bored and lonely on a gray day in January in my first year out of the classroom, I cast about for something to do. A search for “journal writing prompts” led me to two discussion lists, Diary-l and Journals.  I started reading the sites of the list participants, and it wasn’t long before I said to myself, well, I can do that! Within two weeks I had a domain name and space at Dreamhost, I was registered at Diarist.net, and I had a few readers so interested in what I had to say that they signed up to be notified when new content was available. I joined groups (they were called web rings then),  made some friends, and even got invited to be a speaker at the first JournalCon, held in Pittsburgh in October of 2000.

Among my fellow speakers, and someone whose site I had been reading for as long as I knew such sites existed, was Rob Rummel-Hudson. He was living in Michigan when I first came to know his work, managing a music store and awaiting the birth of his first child. I advised him about the unavailability of snacks at the rest stops on Pennsylvania’s interstate highways when he drove to New Haven, Connecticut for a job interview. I read him through the New Haven years and into the Return to Texas (his home state), a move undertaken because Rob and his wife Julie believed they would be better able to meet the needs of their daughter, Schuyler, there.

I remember the day in 2003 when I read about Schuyler’s diagnosis. I was in Virginia at a writers’ workshop that had been disappointing. I’d gone to a community library in a town about fifteen miles from the ramshackle summer camp that was hosting the workshop, for a change of atmosphere and to catch up on my e-mail. I was using a dial-up connection at a terminal in the children’s section of the one-room facility, at a table so low my knees didn’t fit under it as I sat at the child-size chair provided. I read the very bad medical news about Schuyler, blinked, took a deep breath, and breathed a prayer for this fiercely agnostic man who has little use for conventional religion. Not long afterward I wrote to him to tell him I was praying for him, not because I thought he’d be all impressed and touched, because he wouldn’t be, he might even be angry, and not because I thought prayer was going to help him, but because it helped me, and it helped me to say it. And all the while I was aware of how hollow that might sound, coming from a woman he barely knows (and probably doesn’t remember meeting anyway) who,  compared  to just about everybody else on earth (then and now), has very few problems.

I just now read again the piece Rob posted when the diagnosis was first made. And it still fills me with a tremendous sadness. Schuyler has Congenital Bilateral Perisylvian Syndrome. It is also called Congenital Perisylvian Polymicrogyria. It is an extremely rare neurological disorder that is characterized by partial paralysis of certain facial muscles, an inability to speak, a risk of epileptic seizures, and certain difficulties with eating and swallowing. In the words Rob sometimes uses, Schuyler’s brain is broken. Permanently.

In the four and a half years since the diagnosis Rob has continued to write online about his life, with the focus coming to be more and more exclusively his life with Schuyler. He has grown as a man, as a father, and as a writer. Schuyler uses a device that speaks for her, an Alternative Augmented Communication device (Rob calls it the Big Box of Words), a “portable touch screen with programmed word keys that allows her to express herself audibly.” One post he wrote that brought me to tears told about Schuyler losing her umbrella (her new umbrella) by leaving it on the school bus. Rob talked to her sternly about this carelessness. (Schuyler is a special needs child but she is tough and strong and perfectly capable  of keeping track of an umbrella and Rob and Julie don’t mollycoddle her because of her disability.) He heard her typing out something on her BBoW. “Sorry,” the robot voice said. Then he heard some more typing. “Sorry, Daddy.” (“That sound you hear? That’s my heart breaking,” he wrote. Mine too.)

And I’m writing about him today because we are thirty-six days from the publication of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter. This book has been in the works for two years, I think, and I’ve been following its progress not only because I care about Schuyler and her parents, but because as a wannabe writer I hope someday to go through the same process of being offered a deal, submitting the finished manuscript, going through the editing process, and being able to put my own countdown widget on my sidebar.

I used to be a devotee of women’s magazines, but these days I rarely buy Woman’s Day or Family Circle or Redbook, especially since that one stopped publishing exciting new literary fiction. I mean, really, how many articles on conquering clutter and losing weight do I need, especially since I haven’t been able to do either of those things no matter what plan I follow? But after reading Rob’s post today, I went out and bought the current issue of Good Housekeeping. (I might have let it go until tomorrow, but I had to go out anyway to get something to try to alleviate the symptoms of Day 4 of The Cold That Won’t Bow to Zi-Cam.) Dr. Phil and his wife are on the cover promising me that I can fall in love again, lose 30+ pounds without trying, and look five years younger fast. Inside, though, but not thought by the cover designer to be worthy of attention, is an excerpt from Rob’s blog.

My copy of Schuyler’s Monster is on order at Amazon just waiting for publication day. Go take a look yourself, and at Rob’s site. I think you’ll find it worthwhile.

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margaretdeangelis [at] gmail [dot] com (replace the brackets with @ and a period)