Two Narratives of Decline Redux: Or Where's That Piece on My Own Disabilities I Promised You?

Remember when I wrote this post about Benjy's decline and my own simultaneous one? About how my Tourette's and my meds and whatever else was making me sick and hurt and exhausted and all that lovely stuff was getting in the way of life and work and writing? And I told you I'd be writing two posts for the Missouri Review blog, one about parenting Ben and the other about my own "troublesome parts"?

I tried to write the second post but exhaustion and ticciness got the better of me. Often it takes me months to write an essay or a story. Sometimes even years. Not only because of my child's issues but because of the pieces of me that often do not work.

Stay tuned, though: I am finally able (and willing) to write publicly about my own struggles, and the Missouri Review is looking forward to that second piece, whenever it emerges.

Beauty and Disability

Raise your hand if you watched the Miss America pageant over the weekend. Go on, don't be embarrassed.

My hand is not raised, and I am sorry for it. If only I'd known what that pageant had in store I'd have been glued to the screen.

Now, I am not a fan of beauty pageants. They emphasize all the wrong things, suggesting that women are the sum of their physical parts. Don't be fooled by the "talent" piece. Yeah, some of those women are talented. In serious ways (although the more serious the pursuit -- classical piano, for example -- the less likely, in my limited viewing experience, that girl is to win). Some of them are crackerjack roller skaters or baton twirlers, too.

And some of them are not, shall we say, the brightest stars in the firmament.

Which brings me back to that emphasis on the wrong things. Because I firmly believe that how you look in a swimsuit is no measure of your value in this world. (You might have deduced from this statement that I do not look good in a swimsuit. If so, you would be right, but I stand by my assertion.) To me, Elena Kagan is beyond beautiful and cool. So is Elizabeth Warren. And my favorite college English prof, with her heavy coil of black hair and her imperfect figure and glasses -- and that brilliance that lit up the room.

But I digress. What this post really is, is a CELEBRATION of the Miss America pageant. Because this year it was all about disability. Well, okay, A LITTLE about disability.

One contestant had autism.

Another had Tourette's.

A third is having her breasts removed to protect her from cancer, just after the pageant.

What????

Hey, this pageant was about ME. Autism, Tourette's, and surgical breastlessness. I SHOULD HAVE BEEN UP THERE. Those other ladies could have stayed at home, because I've got all three issues covered! (Okay, it's true I only have autism by proxy. Maybe Benjy could have competed with me.)

Joking aside, I think it's pretty cool that our cultural standards of beauty have expanded just a wee bit to accommodate certain forms of disability. I doubt we'll see a woman with cerebral palsy up there anytime soon, although I am quite certain there are some real beauties among them. Nor will we see plus-size women or women whose beauty shines more from within than without -- the beauty of wit, intelligence, warmth, and kindness.

Readers, change is slow and painful. Many of our cultural values seem to me misplaced, but I feel the teensiest flutter of hope that we may be evolving toward greater enlightenment.

I'll get back to you in about ten years and let you know if I was right.

This Lonely House

This house is so lonely without Benjy in it, I could cry. I woke up in the middle of the night to use the bathroom, and peeped into his dark, open bedroom. Because for a tiny moment I had forgotten he was gone.

His narrow bed with the white down comforter was empty.

I caught my breath and when my heart calmed I went back to bed. I woke Lars and told him I missed Benjy. "Me too," he said. "And the sad thing is I have so much work on my plate right now I probably cannot even visit him."

Because Benjy is back in the hospital, the same one I wrote about last October when this blog was born. He knew he was struggling beyond our ability to help him, beyond the collective abilities of all his outpatient mental health professionals, and he wanted to go. We left him last night at peace with his surroundings and himself.

It reminds me of the story of Mary Lamb, early 19th-century writer/intellectual and sister to the essayist Charles Lamb. I only know about Mary Lamb because in some college English class we read something by her brother, and the Norton or Oxford anthology offered a little blurb about them.

Apparently, Mary Lamb was intermittently "mad" (yes, the Norton or Oxford editors chose to use that word), and whenever she felt the madness coming on she would calmly and patiently ask for her strait jacket, and Charles would strap her up, and they'd walk to the nearby lunatic asylum. (Forgive me that -- it's what they called them in the 18th-19th centuries, and you'd be better off in prison. Really.)

I can't help thinking about Mary Lamb when I think of Benjy's understanding of his own needs, his willingness, and even sense of relief, when we told him we thought a hospital stay might be in order. He WANTED to go. (Except Mary Lamb stabbed her mother to death, so I hope the similarities end there! ;)

What Benjy said was: "I need to take a break from things. Life is too hard right now, so I need to step off it." He didn't mean permanently. What's wonderful and beautiful this time is that he is NOT suicidal. He is just completely non-functional, at school and at home. Deeply depressed. Withdrawn. sleep-dysregulated (sleeps all day at school, up all night at home). Unable to eat much. Ticcing so severely his body is never at rest.

For us, that may be the hardest part. Watching him tic relentlessly. Of all the things that make Benjy different, that one is the most public, the most obvious.

I know that one very well, thank you. It is a curse. There's chemical help for it, but at the very least it makes you fat. At the worst it makes you a cognitively blunted, fat zombie. It makes you walk and talk funny. It makes you need glasses, and to drink water every ten minutes because your mouth is dried out.

(HALDOL, I'M TALKING ABOUT YOU.)

I once swore I would NEVER, EVER make any child of mine take Haldol. The Soviets, according to my father, gave it to political dissidents to render them metaphorically impotent. So I was sure as hell not going to give it to any kid of mine.

Now, looking at my poor Benjy, I have to wonder what would be best. Because he's going to have to choose his evil. Would he rather be a weirdo due to the tics, which are exhausting to boot, or due to being a fat zombie (see above)? I'm afraid that may be a choice he has to make.

What is it about our family that we tend to be given shitty choices?

The Universe: OK, Anna, you can either have breasts and ovaries or I'll give you a fifteen percent chance of surviving into your forties. Quick, you don't have much time to decide!

Me: Uh, can I draw again?

Somehow, life doesn't want to reshuffle and give you anther hand. So you have to make dowith the one you got. Ben got the one that gave him Asperger's and Tourette's and OCD (I haven't even mentioned that DX yet) and mental illness. I got the one that gave me Tourette's and the breast cancer gene. Poor Saskia got the one that gave her what appears ever more convincingly to be lupus. (Did I mention that the day before yesterday her painful knees, thought by her rheumatologist to be runner's knee and not the arthritis caused by Lupus, because her knees were not hot and swollen, have now become hot and swollen? Troubles come in groups around here.

All I can say is, thank god Lars is completely normal. Except he's barking mad in his own, endearing ways.

Anyway, I am bracing myself for a lonely day, with no Ben to pick up at two-thirty (or hang out here with, as the case might have been) and Saskia out at a volleyball game until 7:30 or 8, and Lars no doubt working late.

Thank goodness for the Hellacious Hound, that's all I can say.