Bookworm

Dialing Down the Firehose

"Politics, celebrity gossip, business headlines, tech punditry, odd news, and user-generated content. These are the chew toys that have made me sad and tired and cynical. Each, in its own way, contributes to the imperative that we constantly expand our portfolio of shallow but strongly-held opinions about nearly everything. Then we’re supposed to post something about it. Somewhere." [Merlin Mann]

Amen, brother. 

True story:  I was in Barnes & Noble yesterday and wandered over to the area where they keep journals and notebooks.  I freaked out when it appeared that they were no longer carrying Moleskine notebooks and immediately began thinking about Twittering about it!  (As it turned out, they're still carrying them -- they actually upgraded to a stand-alone display case in a more prominent location with a better variety.) 

[And of course it doesn't escape me that I felt compelled to respond with a "Me, too!" to Merlin's post. . . but hopefully the continuing introspection that accompanies the post will balance that out.]

There's so much stuff out there.  I think Firefox, much as I love it, has made it harder for me to stop gorging on the online equivalent of junk food.  FF gives me the ability to open multiple windows in tabs and restores my last open session when I launch it again.  So, instead of saying, Guess I'll check my email while I eat my sandwich, I go from Gmail to Yahoo mail to my fantasy baseball team to Google Reader to Typepad to Twitter. . . and then begin the cycle again. 

Since my time is limited (both in terms of leisure time in a day and the inescapable fact of mortality), I should aim for more wheat and less chaff.  More time with family and friends and less time with people I will likely never meet.  More reading and writing and photography and music, fewer hours mindlessly surfing online.

Schuyler's Monster by Robert Rummel-Hudson

This afternoon I finished reading Schuyler's Monster: A Father's Journey with His Wordless Daughter, a nonfiction memoir by Robert Rummel-Hudson. I could have read it more quickly than I did, but wanted to savor it.

I've been reading Rob's online writing for years and had followed the news of his upcoming book with great interest.  There are a few bloggers/journalers I've followed for so long that I know more details of their lives than I do some close relatives.  The Internet can be a strange phenomenon that way. 

It's the story of the beautiful Miss Schuyler, Rob's and wife Julie's daughter, who has a blazing spirit, a vibrant personality, and a "monster" in her brain.  The monster's name is congenital bilateral perisylvian syndrome (CBPS) which falls under the umbrella of disorders called microgyria.  After some rocky times when their separate, yet equal, pain almost drove them apart, Rob and Julie became a force to be reckoned with and centered their life around finding a true home for their family, specifically a school system where she wouldn't be forgotten or marginalized.

The book basically blew me away. This is no "blogger book" -- this is a book.  So, go read it, already!

Silence

Recently, Schuyler has begun to outwardly express her own awareness of her monster. She has this thing she does now to explain it, a whole story told in gestures and sign language. She gently touches her throat and shakes her head. She then touches her head with her finger (the sign for "think") and then draws a line down to her mouth, signifying how the things she wants to say don't make the trip from her brain to her mouth. I like how she recognizes that her voice is broken, but her mind is working. It's important for her to know that her thoughts are there, and they are magnificent. [Fighting Monsters with Rubber Swords: No Blue Fairy.]

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The mama was happy because the baby wasn't crying.  And the baby. wasn't. crying.  So I wrote in the chart 'patient may be out of bed in mom's arms,' which was a flimsy, ridiculous order, but the only order I have written in the past two weeks that's actually been worth a damn. [Six Year Med]

These two posts were near each other in Google Reader this morning and they both made my heart ache. 

Thinking Out Loud | Articles - Multi | D Magazine

Link: Thinking Out Loud | Articles - Multi | D Magazine.

Robert Rummel-Hudson lives in Plano and serves as the coordinator of communications for UTA’s School of Architecture. His 8-year-old daughter, Schuyler (pronounced Sky-ler), has polymicrogyria, a neurological disorder that has deformed the speech center of her brain, making it impossible for her to talk. This month brings the publication of his well-reviewed, touching memoir, Schuyler’s Monster: A Father’s Journey With His Wordless Daughter (St. Martin’s Press). A week before Christmas, D Magazine asked Schuyler a few questions via e-mail. She uses a device called a Vantage Plus that also speaks words she types.

Best Thing I've Read Today

"After exhausting themselves, the four of them climbed into the giant, jacuzzi-sized cup of coffee and began the whole "So who are you and what's your scene?" discussion. Before it got very far, Schuyler ran over to us and grabbed her Big Box of Words.

WHat happened next stopped us in our tracks. And by us, I don't mean just Julie and I, but rather every parent in the area. We all sat, silently mesmerized, as Schuyler began demonstrating her device and asking questions of all the kids present. The four turned to six, and then eight little kids crowded around the giant cup, fascinated by this hard-playing, hard-laughing little girl with the robot voice. All the adults watched in wonder as a crowd formed around one little girl." [Schuyler's Monster: The Blog]

Beautiful post

"Schuyler has always had a strong association with Christmas, being born four days before. It's no coincidence that her middle name is Noelle.

I took her to see Santa today."  [My Beloved Monster & Me]  Lovely post -- go read it!!

In Defense of Rachael Ray

. . . not that she needs it. . . I visited the Boston Globe page today to check out a work-related article, and saw a link to an article about R.R.  It talks about a LiveJournal community dedicated to their dislike of Ray.  (I tried to post a comment there, but it's set to "friends only" commenting.) 

I can understand creating a fan site because you like someone or something, but it seems like a lot of generation of negative energy to continually look for bad things to say about someone you don't know.  [Editor's note: Complete disclosure: I do occasionally post negative things about people here (often someone with the initials GWB, who, frankly, deserves it) -- I'm no angel -- but I don't base the whole site on that.]

I really like Rachael Ray.  I'm not inspired by each and every show, but I always learn something I didn't know and I have incorporated a few of her recipes into my regular routine this year. I like her on-air personality because she seems down-to-earth and talks about how certain foods or ingredients remind her of special occasions or family members.  Of course she has some shtick -- tell me anyone who's on television for the number of hours she has been who hasn't repeated themselves or who doesn't have a catch phrase or two that drives you a bit nuts. 

To the folks who have nothing better to do than post negative things, I challenge you to find someone or something to praise and write about that.  Create an "alternatives for people who aren't inspired by R.R." site or something.  Tell us what chefs you think are talented.  Write about your favorite recipes.  Generate something positive. 

What is a Conservative?

"Sullivan has. . . been forced to ask himself the question that many conservatives have been forced to ask themselves: If I am a conservative, and I detest many of the things this conservative administration is doing, then what kind of conservative am I and what kind of conservatives are they?

“The Conservative Soul” is Sullivan’s answer to that question. His book is important, not only because he is willing to re-examine his own views relentlessly, but also because this is a moment when conservatism is in tumult, with old alliances breaking down, new divisions widening into chasms." [Books - Review - New York Times]

R.I.P Jessica

"She was thirty-three.

Her name was Jessica."  [Cancer, Baby: Goodnight, sweetheart] 

I did not know this woman and didn't encounter her blog until after she passed away.  I'm not entirely sure why I'm posting a link. . . her writing is vivid and sad as she writes about her journey toward motherhood that turned into a cancer battle.  She wanted what so many of us want -- a family, a long, healthy life full of the things long dreamed of.  But on Mother's Day weekend, she passed away.

Independence Day

"On our way home, I asked Schuyler if she enjoyed ordering her own food like a big girl. "Yeah!" she said, using one of the very few words that she can articulate within the very narrow range of sounds that her monster will allow her to produce. Then she started one of her monologues, gesturing and jabbering excitedly in her strange little moon man language. It breaks my heart, of course, knowing that she's got so much to say and I'm missing almost all of it. I listened and I watched her as we drove along, nodding when it seemed appropriate." [Independence Day]

Go read this post.  Seriously.  Beautifully written and heartbreaking.  And reminds anyone who needs reminding to savor the special moments we're blessed to spend with loved ones.