• Sun, Feb 3 2008

What’s It All About, Eli? (2): Keeping the Faith

“…there might be a deeper meaning to the series as a whole. This is something I touched upon on my own post for today (autism and spirituality–maybe they’ll get that angle right).

wrote one commenter after watching ABC’s new legal TV drama, Eli Stone: In reading responses and commentary on the show, I’ve been struck at how often people have talked about faith—a New York Times editorial about the show is entitled Eli Stone’s Overleap of Faith—and stating that they appreciate the show because it brings other topics into the discussion about autism. While the court case that Stone successfully argues involves vaccines and “mercuritol,” a stand-in for thimerasol that is claimed to have caused a child to become autistic, it is matters of faith and spirituality that people seem particularly to be eager to hear about in regard to autism.

It does seem to me that people—certainly parents of autistic children—want to make sense of their experience; they want, they need, some kind of support to get through each day. Some focus themselves on uprooting why their child became autistic, and the belief that vaccines or something in vaccines directly caused a child to become autistic provides a straightforward answer, a simple answer such as can be explained within the time frame of a one-hour TV show. But life raising an autistic child is—like child-rearing as a whole—a 24/7 matter and a real representation of what it’s really like, and real explanations of what causes autism, are perhaps too large, too messy.

That’s why my preferred metaphors for describing what life with Charlie is like are those of the journey and the long and winding, rocky, road, around whose bends who knows what adventure awaits; it’s why I also think of our life with Charlie as an epic, as a long narrative full of exploits and travels not altogether unlike, if you will, the stories in the ancient epic poems of Homer, the Iliad—-the story of Achilles in the Trojan War—and the Odyssey—-the story of Odysseus’ long journey back home to Ithaca. I do think of my son as the hero of such an epic (and have written of him as such): Certainly the courage, bravery, determination, sheer will he displays in trying to write the /s/ of his last name, to pedal over a few more streets with Jim, to wear a stiff new pair of basketball shoes, are equal (in this mother’s eyes) to Achilles standing before the walls of Troy or Odysseus facing the Cyclops. Certainly I feel myself to sometimes be in the role of Achilles’ mother, the sea nymph Thetis who tried to make Achilles invincible by dipping him, while a baby, into the waters of the River Styx: I feel I’ve done everything I could to help and protect him, but sometimes things just don’t work out and I become a witness to the suffering. Certainly I sometimes feel I’m standing up for Charlie and my belief in him just as Antigone stood before King Creon in Sophocles’ tragedy, and tells him that is it the laws of the gods she following in breaking the king’s law and burying her dead brother, who was Creon’s enemy.

I don’t know what it is about life with Charlie. Somehow, so often, things seem to be in sharper focus, small things become the stuff of great concern and of celebration. Casual conversations begin not with pleasantries about the weather, but with “he’s been up since 3.30am and I have to.” Trips to buy a basket of groceries become the stuff of household legend, not to mention visits to the dentist and in the barber’s chair. The other evening Charlie and I went out for a pre-dinner walk. Though it was to rain the next day, the sky was so clear that I could see a full zodiac of constellations: I sighted the Big Dipper, Cygnus the Swan, the hunter Orion, all duly pointed out to Charlie who was happily sloshing through some dead and muddy leaves. The ancient Greeks used those same stars to navigate their ships, I thought, rather grandiosely, and here Charlie and I are, looking as ever for a way to chart our meandering course, seeded with surprises.

I am not at all sure if Charlie will ever be able to read any ancient literature; simple, single words are a challenge enough for now. He never gives up, we never give up, and sometimes it’s just a dogged faith that keeps us going on—last and first, a simple faith in Charlie, that he can.

And to me, that’s why Charlie’s story is a part of a much bigger, and (just to sound a grandiose note again) a timeless, story.

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  • http://www.revolutionhealth.com/blogs/resilientmom resilientmom

    Kristina,
    Perhaps we, the parents of children of autism, possess an innate passion. Is that the root of faith? I’m not certain, but when I researched a synonym for the word passion, the first definition was “rage”. I found that interesting. Is it rage about autism that we feel? The following descriptions of passion meet my pulse as well; words like fervor and zeal, distress and impatience all fall into descriptions of passion. Probably at one time or another, my personal plight with autism has evoked all of these emotions; in the name of faith. Without faith that my son will get better, my passion will be silenced.

  • http://www.autismvox.com Kristina Chew, PhD

    Just to be etymological—-”passion” is from the Latin patior, pati, passus sum,” which means to suffer, endure, and those are the two things that I associate with “passion,” along with (as “fervor” and “zeal” imply) a whole lot of strong feeling. A whole lot.

  • http://daisymayfattypants.blogspot.com Emily

    Kristina, the “Passion of the Christ” uses passion in that oldest, original sense. I think of it now more in terms of fervor, which I think is probably its much more common use these days, as when people in love refer to their passion for one another (surely, they do not mean suffering or enduring of one another, at least not at that stage). Certainly, my children are my passions, probably in all of its meanings. My husband, on the other hand, has proved so far simply to be my passion in its most positive, romantic sense.

  • http://www.autismvox.com Kristina Chew, PhD

    My view is a little shaped by seeing variations on patior, pati, passus sum, in what I’ve been reading—Shawn has a post that captures a lot of what I was feeling writing my own post.

  • Regan

    It is an epic. I believe that life is an epic, and well beyond the reach of an hour drama punctuated with ads, or even the most well-crafted piece of cinema. There are middle of the night moments, moments of uncertainty, moments with tears, moments where you wonder “what now?”, moments where it is mundane and wonderful for that simplicity and flow, moments where the heart smiles and forgets its troubles, and moments of such indescribable and unexpected beauty and love that you feel your breath stop.
    Could any Hallmark moment or an Eli Stone measure up?
    Kristina, thank you letting us share your and Charlie’s epic.

  • toxic

    thimerosal

  • http://daisymayfattypants.blogspot.com Emily

    Perseverate much?

  • http://www.autismvox.com Kristina Chew, PhD

    @Regan, thanks for reading and sharing so much!

    wonder if more trollings will be dropped ….

  • http://crimsonthought.blogspot.com/ Cliff

    Actually, if I really wanted to be a jerk, I’d note that the spelling is technically thiomersal, but I’m really not going to argue technicalities.

    I, also, really also would like to mention how much I have enjoyed reading your epic. Indeed, it is of the most engaging I have ever read (and yes, I did read most of the classical works).

    Cliff

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