|group therapy on The Bob Newhart Show|
Who in the special needs world doesn't hate group therapy at a certain part of the proverbial "journey?" Is there anything worse than listening to people from different tribes drone on and on about their experiences coping with whatever messed up situation has befallen them? Is it just me that would rather hash it out, ad nauseum, only to those in my tribe -- especially when things really fall apart? You know: misery loves company, et al. I'll always remember the zing of recognition I felt when I read People Like That are the Only People Here: Canonical Babbling in Peed-Onk, the great short story by Lorrie Moore that I carried, crumpled in my purse, for many years as I trudged around New York City with Baby Sophie.
A beginning, an end: there seems to be neither. The whole thing is like a cloud that just lands and everywhere inside it is full of rain.
The first person I met back in those days was my friend Jody whose daughter Lueza had suffered a traumatic brain injury at birth. We participated for a bit in a local support group for mothers of children with severe "issues," but it was our shared sense of dark humor that bound us together. During the dark days pre-internet, it was Jody who told me about a newsletter called "Mothers From Hell" -- a sort of antidote to "Welcome to Holland." She was (and is) the sort of friend who Moore so perfectly described in her short story in one of my favorite passages:
She loves her friends, especially loves them for coming,
since there are times they all fight and don't speak for weeks. Is
this friendship? For now and here, it must do and is, and is, she
swears it is. For one, they never offer impromptu spiritual lectures
about death, how it is part of life, its natural ebb and flow,
how we all must accept that, or other such utterances that make
her want to scratch out some eyes. Like true friends, they take
no hardy or elegant stance loosely choreographed from some
broad perspective. They get right in there and mutter "Jesus
Christ!" and shake their heads. Plus, they are the only people
who not only will laugh at her stupid jokes but offer up stupid
ones of their own. What do you get when you cross Tiny Tim with a
pit bull? A child's illness is a strain on the mind. They know
how to laugh in a fluty, desperate way-unlike the people who
are more her husband's friends and who seem just to deepen
their sorrowful gazes, nodding their heads with Sympathy.
How exiling and estranging are everybody's Sympathetic
Expressions! When anyone laughs, she thinks, Okay! Hooray: a
buddy. In disaster as in show business.
So, I'm back for less than twelve hours, and Sophie is having one of her days. She's already had five giant seizures, and I've had to pull out the Diastat and administer it. She's going to miss her first day of Communicamp, and I'm going to spend the better part of the day probably worrying that this is it, the beginning of the end. That's what I do on days like this, that and laundry.
Pulling through is what people do around here. There is a
kind of bravery in.their lives that isn't bravery at all. It is automatic,
unflinching, a mix of man and machine, consuming and
unquestionable obligation meeting illness move for move in a
giant even-steven game of chess--an unending round of something
that looks like shadowboxing, though between love and
death, which is the shadow? "Everyone admires us for our
courage," says one man. "They have no idea what they're talking
I'm not in a support group, anymore, at least not like the olden days, but I do have you. And you and you. I'm grateful for that.
Take Notes. In the end, you suffer alone. But at the beginning
you suffer with a whole lot of others.
***All excerpts are from Lorrie Moore's short story. You can read the whole thing HERE.