Noah’s Arc

7 Feb


When I was eight years old, I tried to kill my brother.  It wasn’t a real grownup murder plot, it was kid murder plot. Alright, maybe it wasn’t a “murder plot” at all, but in my eight year old brain, it was a brilliant way to get rid of the source of my problems once and for all. The situation (or should I say “plot”) was this:

My brother Noah and I were visiting our Grandpa Natey in Florida. Natey decided (probably against his better judgement) to take us tubing on the nearby lake.  The rule was, while either one of us were taking our turn on the tube, it was the responsibility of the sibling in the boat to tell Natey if the rider on the tube had fallen off. I took the first turn and had an uneventful ride. When it was Noah’s turn, he awkwardly boarded the tube. Natey cautiously accelerated to the standard kid-dragging speed as Noah bounced gently on the black tube (I used the word “gently” tongue-in-cheek, as an adult, I have no memories of “gently” tubing). Noah lasted approximately a minute and a half on the tube.  I watched (gleefully) as his scrawny, red life-jacketed body sprang energetically off the tube into the murky Florida water.  (This is where my devious plot kicks in.)  I DIDN’T TELL NATEY.  The sound of the boat engine stifled Noah’s desperate shouts as the boat lurched across the lake. I watched my bobbing brother become smaller and smaller and reveled in my new found freedom. About two minutes had passed and we were halfway across the lake (my brother was visible, but barely). Natey turned around and realized that he was dragging an empty tube.  “ARIEL, WHERE IS YOUR BROTHER?”  Defeated, I pointed out behind the boat to where you could see the tiny red life-jacketed figure bobbing in the water and quietly said, “back there, probably.”

◆◆◆

My older brother Noah has Asperger Syndrome.  Asperger’s is an autism spectrum disorder characterized by an array of symptoms, including, but not limited to—social and communicative problems, inappropriate behaviors, and unusually intense fixations of specific subjects. Furthermore, Asperger’s often exists in conjunction with a variety of other conditions such as tic disorders ( like Tourette syndrome), depression, anxiety, Attention Deficit Hyperactivity Disorder, and Obsessive Compulsive Disorder (I’m fairly sure Noah has all of these, but maybe it’s just four out of five). Asperger’s wasn’t widely known about in the United States until about 1981 (the year of Noah’s birth), and wasn’t added to the Diagnostic and Statistical Manual of Mental Disorders until 1994. Growing up, I didn’t know what Asperger’s was, but I didn’t need a name for a condition to be acutely aware that Noah was different, very different. As we grew older, his differences became more pronounced, as did their effects on my small family.

One of the most frustrating (and interesting) symptoms of Asperger’s in an inability to understand the social queues and nuances that are vital in normal everyday interactions. For Noah, identifying the spectrum of human is emotion is like playing a game he can’t win. He often can’t tell someone is angry, sad or annoyed just by looking at them. People with Asperger’s often learn to gauge other’s feelings by memorizing the meaning of different facial expressions. If Noah is able to recognize someone else’s emotions, he usually can’t understand why that person feels that way. It’s not that he doesn’t feel the emotion, it’s as if there is a disconnect in the empathy synapses in his brain. Just because Noah doesn’t properly gauge and empathize with the emotions of others, it doesn’t mean that he doesn’t have feelings like everyone else. Noah is an extremely caring person. He knows the feelings of love and acceptance, although he often doesn’t know how to attain them.  Throughout the years, he has led several misguided attempts to win approval.  Although heartfelt and genuine, these attempts have usually ended in nothing short of a mess.

My mother often tells the story of one of Noah’s ill-fated attempts to gain approval with the lighthearted sentiment that only a mother could have. It was 1985, Noah was four years old and I was a spritely two. At the time, my mother drove a dark brown Toyota Camry. She often said that she loved the car, but hated the color. Early one evening, my mother was in the kitchen preparing dinner while Noah and I played in the backyard. Some time had passed when she realized she could no longer hear the familiar sounds of our play.  She proceeded into the backyard, but there was no sign of us. She frantically searched the house until she found us, in the garage. Noah (with me as his dutiful accomplice) had ventured there with a clear intention, “to do something nice for mommy.” By means which still remain a mystery, Noah managed to move and erect a ladder, gaining access to a lofty cabinet which held all of the household supplies deemed “not safe for children.” In that cabinet, Noah found a bucket of white house paint and two paintbrushes. He managed to transport the paint and brushes down the ladder and pry open the lid. Noah and I proceeded to haphazardly paint both the exterior and interior of my mother’s brown Camry (including the windows and the wheels). I was too young to have any memories of my mother’s reaction, but I can only assume that the lighthearted sentiment my mother has about the event was developed in hindsight. Fortunately, with the help of my older sister and the garden hose, she managed to remove most of the still-wet paint, but there were forever traces of white paint on both the inside and out of the car to serve as a reminder of my brother’s genuine, but misguided favor.

◆◆◆

As we grew older, the relationship between my brother and I grew more strained. When I was six and Noah was eight, my mother remarried and we moved from St. Louis, Missouri to Overland Park, Kansas. With this life changing event, in combination with the the symptoms of the Asperger’s (and other disorders), Noah’s behavior seemed to become progressively more bizarre and unstable. Addressing his health concerns had always been both a physical and emotional drain for the family (primarily my mother), but it seemed the hospital visits were becoming more frequent and longer, sometimes lasting weeks at a time. His erratic behavior began to effect my life in ways it hadn’t before.

We were in a new city, at a new school.  As a chubby tomboy, I found it extremely difficult to fit in with waspy blond children around me. Noah was in the grade above me and fitting in for him was not (and never has been) a possibility. As I mentioned before, people with Asperger Syndrome tend to strongly fixate on very specific topics like german automobiles, civil war history, or the 80’s pop singer Tiffany. These preoccupations often become completely life encompassing, to the point where it can effect the person’s gauge on reality. In 1989, two years after the release of the cinematic masterpiece ROBOCOP, my brother had become completely obsessed with cyborgs and androids. Noah’s infatuation with these humanoid robots became so intense that he began to wholeheartedly believe that he was indeed an android. He wasn’t pretending, he legitimately thought that underneath his skin was an organized system of titanium, wires, and circuitry. Unfortunately, this belief was not widely accepted on the playground at Trailwood Elementary. As if Noah were not ostracized enough, marching through the playground with his fingers outstretched like guns, using his best robot voice to declare, “I. AM. AN. ANDROID” didn’t help. While almost all children pretend, there is a world of difference when a person can’t distinguish the fantasy from reality, and our peers quickly recognized this difference. Kids can be cruel (let’s be honest, kids can be assholes). While their cruelty and mockery didn’t usually have a dramatic effect in Noah’s alternate universe, it had a resounding effect on me and my reality. The kids on the playground didn’t recognize his disability. That’s one of the hardest things about Asperger’s, those with the disorder usually look pretty much the same as everyone else (except for a tragically bad fashion sense which seems to be shared by them all). Because the kids at school couldn’t specifically identify what was wrong with Noah, it was unanimously agreed upon that whatever was wrong with him would fall into the catch-all of being “retarded.”  Because I was his sister, I was unquestionably “retarded” as well. The taunting and teasing was unrelenting. I was weird, fat and “retarded like my brother”. After two years at Trailwood and countless times coming home after school in tears, my mother decided to switch me to another local elementary school to finish out my primary education.

While the separation during school time was successful in alleviating much of the taunting (I was still a chubby tomboy), it didn’t mend the deteriorating relationship between Noah and I. As we reached adolescence, there was almost nothing left. While I defended him fervently against the teasing from the neighborhood kids, at home, I could not stand to be around him. Everything about him infuriated me. I hated the endless stuttering chatter about subjects I didn’t care about. Moreover, I couldn’t stand the tics. It felt as if there was never quiet in the house. If he wasn’t letting out a little forced cough everything thirty seconds, he was bouncing or rocking in his seat, which usually produced an unnerving, repetitive series of squeaks. Even after we went to bed, I could hear Noah sitting on his bed, bouncing in the darkness. Sometimes I would scream at the top of my lungs, “NOAH, STOP BOUNCING,” but the metallic chrirps of the bedsprings would only stop momentarily. Due to his fascination with the inner-workings of things, Noah would also systematically dismantle and destroy my possessions, sometimes burying their components in the yard, never to be seen again (except by the occasional lawnmower blade). My mother would explain, “they’re just things,” but they were my things.

◆◆◆

When I was twelve and Noah was fourteen, Noah decided that he was going to move to New Hampshire to live with our father.  Before I knew it, Noah was gone.  For the first time, the house was quiet. Overnight, it was as if I had become an only child. The emotional distance that had been growing between me and Noah had transitioned into a real distance. At first, this was more than a relief, it was a kind of emancipation. I was no longer living in the shadow of my brother and his illness, yet the freedom was a double edged sword.

The relief in his absence slowly changed into a feelings of guilt and regret. I have often looked back at the time I spent with my brother and felt shame in how I treated him. I’ve grown to understand that my intolerance and bitterness toward him was a natural reaction to his behavior.  Noah was a destructive force in my life, both tangibly and intangibly. From fueling playground taunts to inexplicably burying my toys in the yard, I often felt as if nothing was safe. I craved the kind of sibling interaction I saw in the households of my friends, a far cry from the interactions Noah and I had. I was resentful of the time he took from my mother, although I knew it was necessary. All of these pieces added up to unavoidable conflicts.

Over the years, I’ve spent time volunteering with the developmentally disabled. I worked as a nanny and paraprofessional for a little boy whose autism prevented him from learning how to speak, yet I still failed to reach out to my own brother. I have seen Noah only a handful of times over the past fifteen years and our communications have been limited at best.

I’ve slowly began to reconcile the well of emotions that surround my relationship with Noah. This year, I will be turning twenty-eight and Noah will be turning thirty. I’ve only recently began to speak to my brother on a regular basis, and it’s well worth the awkward conversations. With the sense of perspective that can only come with age, I’ve learned that sometimes focusing on the past can cloud a vision for the future.  I’ve realized beyond the awkward dialogue, relentless fixations, and exasperating tics, Noah is my brother. I have learned to love him for all the things he is, was, and will be. He will always remain an irreplaceable part of me.

I wanted that Skor

3 Feb

I was going to continue on from the last piece with an account of my mother taking a Skor bar away from me at the pool one summer.
Nah.

the weight of things not on the scale

19 Jan

I’m getting really tired of hating my body.
I’m not sure I know what my body looks like.
I know my measurements.
34-26-36.
I weigh 117 pounds
I am 5’4’’.
I scoured the internet the other day to find proof that I was overweight and I couldn’t do it. Why do I look at myself and see what I see? Why is my wardrobe filled with hoodies and cardigans meant to cover up a body I’m desperate to hide?
Sometimes I have to take pictures of myself with my digital camera against things I can physically measure the size of.
When I was young, my grandmother and mother didn’t want me to be fat, they wanted me to fit in. My mother put me in a diet program at a local hospital when I was twelve. We had booklets about diet choices and exercises that we’d have to fill out. We were supposed to put stickers on this sheet to show the activities we completed. I have a diagram of one piece of pizza permanently burned into my head. The diagram showed how many calories each of the ingredients in the pizza had…cheese, meat, veggies, sauce, crust. On the opposing page was a chart of how long one would have to do an activity to burn off those pesky pizza calories. While this information is important to know, it had a serious impact of my relationship with food and the perception of my body.

My mom didn’t have the most healthy relationship with food. She constantly skipped meals (she’s nearing 65 and still does). She excused her eating habits, citing the years she was sick growing up. She said she couldn’t eat. I don’t doubt that she was sick, or that the illness effected her ability to eat. When she got older and was no longer sick, I think her idea of a “healthy body weight” was what most people would consider to be underweight. I don’t think that my mother had a clear cut eating disorder, but “fat” was a death sentence, an idea probably learned from my grandmother. I grew up regularly hearing “do you really want to eat that Ariel?” It was humiliating. REALLY humiliating. That’s probably why I remember it so well.

…to be continued…

***If you are my mother and you are reading this, it’s meant to be cathartic, not a crucifixion.  I love you. ***

Love the next

18 Nov

I heard an interview of Loretta Lynn on Fresh Air the other day. Here’s a little piece of it that has really stuck with me-

GROSS: Your husband, who we’ve spoken a little bit about, died in 1996, and you didn’t perform for a while after that. How has your life changed since he’s been gone?

Ms. LYNN: Well, not for the better. I mean, I miss him so much, you know? He kind of kept things going, like me recording, and he’d always tell me how good I was, you know. And that always helped a lot. And he would say, you know, we need to get a new record out – or whatever. He always kept me moving. And if it hadn’t been for him, I wouldn’t have been singing, period. Because he thought I could sing and that’s – he put me to work.

GROSS: You know, as – so many people are, I think, kind of baffled a little bit by the relationship, because it seems in some ways to have been a very rocky relationship. And at the same time, you stayed with him throughout…

Ms. LYNN: We had a – I think we had a relationship – we fought one day and we’d love the next, so I mean, that’s – to me, that’s a good relationship. If you can’t fight, if you can’t tell each other what you think – why, your relationship ain’t much anyway.

 

Maybe I’m looking for validation, I don’t know.
I think sometimes the people that push your buttons the hardest are also the ones that push you to be better a you.

I failed to Fart in the Arch.

15 Sep

I didn’t fart on the arch this time. I made a deal with myself that I’d fart in (or in very close proximity) to any national monument I encounter.  It wasn’t really a deal, I suppose. More of an understanding…but with promise? I don’t really know.  I fart a lot and I figured the average trip to a national monument lasts, I dunno, two hours, right?  Well god damn it, I didn’t.  I know you’re disappointed.

plus pain relief!

18 Jul

I’ve been wallowing too long.
I’m done feeling sorry for myself.
My year thus far has been one giant pity party.
I’m sorry for this and I do that wrong.

I am the only catalyst I need to start living my life.
I used to think of myself as a “free spirit”…albeit, I hate the phrase “free spirit.”
I let the weight of the world smash me into this little mold I don’t fit in.
I’m bustin’ out.

I’ve let the fear of failure,
the fear of being alone eat away at me.
Luckily, failure and fear didn’t have much of a taste for me.
Too jewy.

I’d say I’m putting my best foot foward,
but I’m putting both feet forward.
I’m taking a big fuckin’ jump into living my life the way I want to.

Feel free to come along, but remember, I’m captain.

All sussed out

2 Jul

Today I thought of the phrase “Irony for Assholes.” I’m not sure where I’m going with it, if anywhere…but it keeps buzzing through my head.
Also, I think Radiohead is excellent stripper music.
And also, learn empathy.

Tomorrow.

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