Because my spring and early summer were rough I completely skipped Autism Awareness Month. I didn’t put out the blue light, I didn’t write anything, I didn’t care. I’m going to post something now—six months later—because I do care, and I want to acknowledge the month. I wrote this short journal essay almost fifteen years ago. My family and I have come a long way since then. . .
There But For the Grace of God Go I (2001)
I firmly believe that my son and family provide a service for other families. And we really don’t have to do much . . . but exist. Our struggle with his severe autism makes people feel grateful they’re not us. We strengthen marriages, provide a shining example of what not to expect when you’re expecting, and we shed light on the true meaning of dysfunction. It’s funny, (not really) when I’m having a conversation with someone and they’re bitching about all the petty stuff going on inside their home–maybe their kid stepped on his retainer, or the air conditioner went out, and then I suddenly sense the eureka moment. The Look At Her It Could Always Be Worse moment. They don’t have to say anything. I hear it in their uncomfortable silence, and it doesn’t bother me. Really it doesn’t. I’m gratified when my family members or random grocery shoppers or airline passengers breathe a sigh of relief after they’ve observed my non-verbal, “testy” child crap on the floor or scratch my skin off in public. A sigh of “There but For the Grace God Go I” relief. I’m grateful that in some small way I’ve made a contribution to somebody else’s well being. My life makes them feel lucky.
Now, what I don’t like is the silent treatment I get from friends. I need to hear about all the shitty things they’ve gone through that day. They don’t have to feel guilty because they couldn’t possibly have it as bad as me. Please– people have it as bad and much worse. Everybody has something. Everybody. I am still your friend and confidante aren’t I? Nothing’s too “trivial” for me. Don’t make me feel worse than I already do because you don’t think I can help you. Or listen to you. Tell me what’s happening in your life. I WANT to hear bad things. And good things too. Please provide me that service. It’s okay to be happy around me. It makes me feel human again.
It’s time to go home. The escape-away has been successful and I’ve actually completed a few projects. Kind of. I’m beginning to wonder if I have some adult form of ADD. I have to reward myself with a food item or crappy TV show every two hours just to get anything done. In the old days I could sit for hours and hours and work or read or write. Working now on a bed or in a chair just makes my back hurt.
And speaking of hurting, this break has slowly melted away some of my anxiety. My arms aren’t itching all the time, and I can move my head from side to side. Useful when you’re trying to drive. Before, the muscles in my neck wouldn’t allow me to turn my head.
I’ve decided that I almost like the beach. I haven’t minded the cold, rainy weather at all. I’ve enjoyed my routine of combing around barefooted in 55-degree weather. I walk in the water because it’s actually warmer than the sand. It would’ve helped to bring some sort of coat or sweater, but the “briskness” has kept me alert. And you should see my biscuits! My sea biscuits. They’re a thicker form of the sand dollar. I’ve gotten greedy about my treasures. I go scouring at least twice a day to snatch them out of the hands of dog walkers. Usually my only competition are the metal detector people.
So, I’m ready to leave and see my family. I miss watching Scooby Doo with my son and arguing with my daughter. Nobody’s missed me though. Jordan’s only called me once. My husband has called me three times. He wins the prize. Every time I phone home my various family members are visiting with my mother in rehab. They put me on speaker, but I know they don’t want to talk to me. They’re deep in conversation and preoccupied with Mom’s health and they ignore me. How cavalier. The only thing worse than me not getting attention, is me not being needed. I didn’t realize how needy I was about needing to be needed. But I must admit that I’ve appreciated just being by myself. Last night the waiter felt so sorry for me when I walked into the restaurant and said, “Just one,” that he gave me an extra nice table near the window and winked at me all night. Funny how people assume you’re kind of pathetic when you’re eating alone. One is not the loneliest number.
Anyway, with just a few hours left I’m going to really, really concentrate on writing. And I will not snack in front of the TV. Speaking of, I’ve discovered yet another show. It’s so awful and fake and ridiculous that I’ve become addicted. It’s called, Botched, and it’s about a bunch of really screwed up people who go to a pair of media hungry plastic surgeons who can fix their screwed-up screw-ups. (I’ve learned not to eat when they show the actual surgeries.) I realized when I observed these people—most of them look like they’ve been made out of clay–that it might not be such a good idea to get work done up the road. Dammit. Something to ponder on the long ride back home.
What a day! The sun was shining so I took a thirty-minute break to beach comb. I was looking for an intact sea biscuit or sand dollar. I always loved scouting for shells in Galveston when I was a child. The water was pea green and kind of slimy but my siblings and I didn’t care. My father would drag all of us down to the beach from Houston for an afternoon of soggy french fries and family fun. We were forced into our garage the night before to blow up grainy, smelly, inflatables for our trip the next day.
Mom hated the beach and the sun so she always wore goggles on her face and a beach umbrella on her head. Dad would tar and feather us with that greasy, orange Bain De Soleil, and then we’d get whipped by 30 mph wind gusts afterwards. By the time all the ritual was over it would be about 3:00 in the afternoon. We’d have about two or three good hours to enjoy ourselves. And we did.
Today I exploited my study break and did some things I never do. I walked outside barefooted and made my way to the water in stretched-out purple shorts, an old black sports bra, an open shirt, greasy hair, and no make-up. The real me was awful and delightfully liberated. It didn’t matter how I looked, I knew I was beautiful on the inside. I patted my stomach, which was fish belly white, and noted my legs were a little wider than usual. I started to ponder the idea of pulchritude. Not in a deep way though. I was distracted by the pain of broken shells under my feet and the hope of finding a treasure. Maybe it’s easier to be trim and fit when you’re young because you’re always showing off your skin. When I was growing up in Texas everyone was either wearing a bathing suit, tennis gear, or those really ugly short shorts you saw in basketball games. And you had to hold your stomach in all day.
I liked not holding my stomach in today. And I let out my thoughts too. “Why can’t I live forever? It’s so beautiful outside!” It’s a narcissistic notion. The idea that you should live forever and not deny the planet the pleasure of your company. But just think about how much you could accomplish if you had an infinitesimal amount of time! Think about what you could achieve! And you could spend more time with your family. (That might feel like an eternity.) I would love the opportunity to grow old with them. My daughter and I could do old lady things together, and my son might have better cognition so he could yell at me, and my husband could try to outwit and out-exercise me. (Ha! That’s hardly a competition.) And then I realized as I was sinking into the earth that I was being self-indulgent. It was time to find the perfect shell and return to my lair. On the way back to the beach house I noticed something sticking up out of the ground near the wooden staircase. I carefully dug out a sand dollar from deep beneath the sand, and it was perfect.
I’ve tried to launch my blog five times since March. Every time I began a light, innocuous post my family was hit with more drama. Ironic when you consider my theater background. But I’m an actor who firmly believes that all drama belongs on the stage. I’m tired of Drama Queen and Drama Mama jokes. After our spring and summer I don’t find them funny.
Anyway, after a few attempts at writing I finally realized I couldn’t launch anything until I launched my daughter off to college. My tears haven’t completely dried but I know I must stash the Kleenex and move on. My intention with this first post was to impress myself and others with my keen, witty observations about everything–family, politics, contemporary culture, society’s triumphs and shortcomings, and whatever else moved or disgusted me. I began my literary masterpiece on March 31st, and by the next day—April Fool’s Day– it was all over. Unfortunate circumstances had morphed my piece into a meandering tale of personal woe. Spew. So I killed it.
Fate, Providence, Luck, The Furies, The Stars, Karma, etc., thumbed their noses at my family through April, May, and June. I’ve recovered my balance now and would like to share some highlights, (and low lights) of our spring. Please feel free to comment, or simply nod your head.
It all began on March 31st when I was trying to avert a health crisis with my very charming mother who’s in her eighties and looks like Betty White. We’d been to several doctors during the week to address problems with her legs and balance. While she was experiencing her last blood draw of the day, my teenage daughter was experiencing her own bloodsucking event. Her unstable, former boyfriend called her after school to tell her he had a knife to his throat and was going to kill himself. About a minute after she drove off to rescue him she was hit by a driver speeding through a school zone. She didn’t call to tell me her ex had unraveled and that her new car was totaled. Probably because just that morning I warned her to stay away from him; he was radioactive. My warnings didn’t prevent the ugly scene that followed with the police and an ambulance, etc.
A little while later, in the wee hours of April Fool’s Day my husband screened a phone call and played back a shaky voice on our voicemail. My mother had fallen and broken her leg. This was after she had crawled around banging into walls for a few hours. The doctor visits and labs and fancy walkers couldn’t stave off her neuropathy and Restless Leg Syndrome. She had fallen asleep standing up, and then hit the floor. Two minutes after my husband rushed over to her house my severely autistic, epileptic son had a seizure. Normally this wouldn’t be a problem but I hadn’t anticipated it and was unprepared. I couldn’t wake my daughter up to help me with his postictal thrashing because she was sleeping off her own trauma.
My husband secured my mother in a hospital and waited to leave the next morning after he knew she was comfortably knocked out on drugs. Then the day after my mother’s accident, on April 2nd, we met my daughter’s new boyfriend who had just arrived from out-of-town. He was sweet and attractive, but homeless. (He’s Dutch so we liked telling people he was taking a gap year.) I had no idea how long he was going to visit, or even where he was going to stay. My son was a challenge and I wasn’t ready to run a boarding house.
Anyway, we couldn’t quite figure this boyfriend out, (or his headband) so we asked him a few questions. “How do you get around without a car?” (This is Amurica after all.) “Where do you sleep at night?” “Where do you bathe?” He promptly educated us about his lifestyle. He hopped freight trains, slept on people’s floors, and broke into college dorms to take showers. I was waiting for him to produce the kind of knapsack I used to attach to a pole when I went trick or treating as a child.
My husband and I were still trying to dissect this relationship when my mother had her leg surgery five days later. I was at the hospital every day meeting with social workers, filling out forms, visiting with Mom, and then feeding her cats, watering her plants, fetching her mail, playing with her cats, and doing everything I needed to do but spend time with my son and supervise my daughter and her new companion. It didn’t help that it was spring break and she was running around unfettered. Some nights I was too numb and tired to care.
Anyway, we eventually found a good rehab facility for my mother, and on her very first day there, about two hours after she checked in, she was rushed away in an ambulance for a completely unrelated medical emergency. (I’m not even sure the rehab place caught her name.) So I visited with Mom in another hospital about 45 minutes away and divided my time between her, her cats, my daughter’s covert activity, and my son. When my brother arrived from LA at the end of the month to help me I was stumbling around in a fog of worry and fatigue.
After back-up arrived, I made a run for it. I headed to a beach house I’d bid on earlier in the fall at a fundraiser. I knew I wouldn’t be able to stay the allotted week but it didn’t matter. I’d take an hour, a day, half a day, anything. And I wouldn’t allow one person, creature, or crisis to hijack my plans. I was supposed to finish a project that required complete focus, (oh how I laugh) and I needed a writer’s retreat that wasn’t fancy, expensive, well-authored, well-appointed, or distracting. I fled to the beach in the rain.
So this, my very first official blog post, has turned out to be nothing more than background material. Or rather an account, a detailed explanation, an expository gem, a set-up to elucidate the following posts. They’re in date order because I need that. I will continue with what I recorded at the beach. . .