a memoir
It’s funny the things that trigger memories. For me it was my husband snoring last night. it made me think of all the times over my lifetime that have been particularly difficult because i am sensitive to certain sounds. I feel like i always have t o defend the truth, “Its a real thing, and no I have not outgrown it.”
For most children the world can be a wonderful undertaking. A candy land filled with unknown sights and new sounds just waiting to be explored. Sensations stimulate the human appetite to know more. The smell of brownies for example baking in the oven, makes you want to know where that smell is coming from and can you eat some, where is the smell of dog poop on your shoe makes you cover your nose or want to get away from that smell. Children are curious and their senses help them taste their environment. I remember my 6 month old daughter putting seaweed in her mouth at the beach, eating flowers and trying dog food. she was curious. For children the world can be a place of adventure or a place of fear and uncertainty, and most often a little of both. For a child with sensory disorder the world can be a frustrating and sometimes ominous place constantly bombarded by sights and sounds.
When I was growing up the world was always an amusement park, it was an intimidating and overwhelming place screaming at me from a hundred different directions, pulling me this way and that, what should I pay attention to, so many loud sounds drowning me in a sea of senseless noise, and lights and options. Now that I am an adult It’s the same, I have only learned how to manage it better by educating myself about myself and my needs.
We lived tucked away in a small suburban town lacking the lights and noise of the city. Perhaps I was sensitive because of that. I lived in an even smaller world hidden under the shadow of my mother’s broken wing. I wonder if the silence of this world trained my ears, or was it written in the original blueprints of my unformed frame?
In the picture I am about 11 years old. My father’s dream of traveling across the country in a loaded RV begins small, small as in a used pop up camper, three kids and an old Toyota pickup truck. We are at a family campground not far from Disney World. My stepbrother and I are heading to the pool. Chris is an extrovert, for me it’s loud, disgusting and crowded but I go. I ask my father if he has seen my nose clamp for the pool, becasue i hate getting water up my nose and i somehow at 11 havn’t seemed to learn how to prevent it, or i have but the idea of blowing snots out of my nose into the water where i swim is too much to bear. I am wearing flip flops and a t-shirt that just barely covers the bottom of my bathing suit. My legs are long and skinny and seem out of proportion to the rest of my body. A pair of goggles sits atop my head, because i can’t tolerate water in my eyes. “Look in the drawer where we keep the wax for your ears.” the wax was for my dad’s horrible snoring that triggered what I now know is misophonia. It must have struck my father as funny when he said that because he called to me, “and once you find them come out here for a minute I want to take a picture of you and Chris before you leave.” I whine and tilt my head tiring of the endless mandatory photos we have to pose for. “This will just take a minute.” He said in a hypnotic voice he often used when he wanted something. Chris and I are posing for the camera, “Kim, put your nose clamp on.” “Daaa-aad?” “Just do it, please!” “Kim…put the wax in your ears.” His humor was being lost on our over-heated preoccupied minds, no one caught on.
My dad was the sort of man who made a habit of coercing us into doing things, like trying on every pair of sunglasses in CVS, followed by, “oh beautiful” or scrunching his nose and shaking his head, “nah, try these ones.” I think it entertained him to mortify us, but at teh same time it sort of made us brave and not take ourselves so seriously. At a Chinese food restaurant even though you didn’t want to try the soy sauce in your wanton soup, somehow he was able to talk you into it. He wouldn’t take no for an answer, especially when he thought he was on to something big. “Now pull your goggles down.” I was like a little masterpiece to him in the moment. I also had eyeglasses and it was very likely that I had to wear my prescription glasses under my goggles because even at the age of 11 my eyes were not as sharp as my ears. Click, click the camera snapped away. “Oh, Kim” I can still hear him say, “Honey, you’re a real beauty you know that?” “one of a kind.” Even though he was joking and I wasn’t in any way beautiful, I never doubted that he really did believe it.
At this point we just wanted to get to the pool. I can almost hear my stepmother saying, “mike, let them go to the pool.” in her agitated voice when he is taking too long. I wasn’t aware that my dad was always trying to capture those looks of ours that would help him remember later in life. We didn’t seem to catch on, we were tired and hot and in reality this was a fairly normal look for me. what made it a really exceptionally funny picture other than i was in the awkward age, was that this particular vacation caught me just after a desperate and failed attempt to cut my own bangs. Two words come to mind about that endeavor, ‘short and crooked.’ Anxiety is no respecter of persons.
“Okay perfect.” he determines and takes a few pictures. Ironically I think when he used the word ‘perfect’ to describe me, everyone caught on. Chris turned his head to look at me, catching a glimpse of my get up, he started laughing. Even I giggled at my necessary precautions before flashing an evil eye at my overzealous father. “Honey I just want to remember you like this forever.” The truly funny thing is he didn’t need a picture to remember me like that, I am still that quirky girl who needs all those apparatuses to get through the day. Last night I was seriously wishing for some ear wax as I lay in bed listening to my husbands, long rhythmic nose gargles. I get the chills just thinking about that sound. At the time, I didn’t know there was a name for my sensitive ears. I’m certain my parents merely pegged me as thin-skinned annoying kid, with moody undertones and a lot of maintenance. It seemed I was always yelling at people to ‘be quiet!’ I didn’t know why. I only knew I didn’t like loud noises. I couldn’t process them. i still can’t, they make me crazy. It’s not all loud sounds but certain pitches. They say its not an ear problem but a brain issue. Yeah if you knew me that makes sense.
The ear wax was something special we purchased every camping trip. Due to the tight quarters in our pop up and the limited space my bunk was always rather close to dads and dad like many middle aged men snored unsympathetically. Sometimes it would drive me to sleep in the truck, scrunched up and alone while everyone else slept right through the torrent of loud repetitive and chainsaw like melodies which ripped through the core of my being bringing tears to my eyes. Pillows were powerless against his “night song”, even the wax only seemed to gently mask what sounded like his mucus glands boiling in a pan on a hot stove. I was exposed and vulnerable to all the sounds that flooded over me like a tidal wave, daily. My mom’s whistling almost made me end it all. Still to this day when my teenage son whistles i just about jump out the second floor window. Most of my memories are tied to trigger sounds that I heard and felt deeply. The dog barking early in the morning elicited my less than graceful response as I leaned out my bedroom window and screamed at the top of my lungs “Casey shut up!” My mom’s boyfriend, Bruce made a plethora of irritating sounds, scraping his ice cream plate during a movie, with a slow repetitious scratch, scratch, scratch, metal against glass, or reading the newspaper out loud in a whispered tone that faded in and out periodically, his snoring was worse then my fathers.
I still struggle with sensory overload and processing confusion. It’s very difficult for me to block out “racket.” High pitched sounds and tedious recurring noise are the hardest to bare. A chainsaw or lawnmower and children’s high pitched squeals. Now I know what “hurts” my ears, and I am able to tell people in my family. Whistling is one of the seven deadly sins in my home. I have to leave the room sometimes when I am overwhelmed or overloaded, or I use my words, “that hurts my ears,” while covering my ears to show how uncomfortable it is. Sometimes music or white noise helps, but sometimes white noise becomes the irritating sound wave for example a fish tank or a humidifier might be soothing to some but ear splitting and distracting for me. A kid in class chatting to his neighbor behind me can break my concentration and send me into a silent frenzy.
As a child my world began and ended each day with loud sounds, voices on the school bus, shouts in the cafeteria, teachers screaming, and then of course loud breathing and snoring. This left little room for concentrating, learning, or exploring my world, it made me want to run and hide frequently. Some of those things I can control today, some I still have to cope with. These sensitivities will always make me moderately different. Maybe I don’t stick out as obviously as when I headed to the pool with all my gear, but enough to cause friction between me and the perpetrators, my husband snoring, my son tapping his pencil on the table, and drumming his fingers on the edge of the counter or my daughter humming out of tune at an unusually high decimal. In some ways I am that girl at the campground weighed down with all my baggage, all the burdensome remedies which steal my wings yet get me through this intimidating world.
my faith place 