Two hours later I had to go home. The room was spinning, I was nauseous, and I had a tremendous amount of difficulty keeping my eyes open! What did they put in these things?
I called my husband who was working uptown, and told him I was going home. I called him again when I found myself in the subway scared to get on the train because the little blue monkeys were looking at me!
He met me at the subway where I was frozen in place, and then took me home, which is where I remained for the next couple days in bed. When I returned to work after my “illness”, I was fired—again. Thank goodness!
Within a few weeks my IBS resolved itself, and I was no longer “depressed”, but I was once again, unemployed. Oh—and I no longer took any more of those little blue pills.
Chapter Seventeen
Adult Autism Hurts
Childhood was fleeting. I’d entered the adult world, but try as I might to tread water the current continued to pull me under. The world around me was changing—swiftly. Old friends were growing, beginning careers, and starting families while I floundered. Everyone had a direction, a dream, a focus—not me. I seemed to tumble where the wind tossed me, never truly recovering before the next gust sent me sailing again.
Yes—adult autism hurts.
It hurt when I raced to my car to make my next class, and lost my footing, tumbling down the side of a grassy hill, right after it rained, and rose covered with mud dripping from my hair. I was a real sight in my next class; that was a memorable entrance.
It hurt when my high heel got wedged in between the elevator shaft and the elevator platform causing me to nearly break my leg and get hit in the head with the closing door on my way down to the floor. I worked the rest of that day with a limp, broken shoe, and torn stockings.
It hurt when I fell into the only hole in the street, the one everyone else slid over with ease. And when I slipped on the black ice and landed under the parked car.
It was painful when I took one step, and then tumbled end over end down half a flight of stairs and somehow ended up with both legs up on the wall. It is a good thing that townhouse was carpeted, it cushioned my fall.
I was not as lucky when I tripped over my own feet in front of my Brooklyn apartment, and flew down the concrete steps. The only thing that saved my face was the cheesecake it landed in.
Adult autism burned when I pulled my coffee mug out of the microwave, applying a little too much strength, and sent the scalding liquid raining down on top of me—or worse the times when my fingers failed to hold on to the mug altogether and it crashed into the kitchen wall.
It hurt when I misjudged the weight of the door entering the deli up the street, and I crashed face-first into the glass, and when I pulled at the pizzeria door a little too hard sending myself sailing backwards.
It hurt when my butt hit the floor and my groceries spilled out all over the sidewalk. Or, when I pulled at the cabinet door in my kitchen too hard smacking myself in the head with it.
It hurt last summer when I fell; face first, into a one-foot kiddy pool on vacation—holding my son.
But most of all—as an adult with autism, it hurts to feel completely and utterly alone.
So why can I not keep my feet underneath me, or apply the correct amount of pressure when lifting an object? Why do I walk into a room like an elephant in a china shop, or send the milk container flying across the room when it is too light? In a word—proprioception.
What is proprioception?
Proprioception refers to one’s own perceptions. It an unconscious perception of movement and spatial orientation controlled by nerves within the body.
Our proprioceptive system allows us to locate our bodies in space, to be aware of where our arms and legs are in relation to one another, as well as, where they begin and where they end. Proprioception helps us perceive the outside world, telling us whether our bodies are moving or sitting still.
This system helps us perceive the amount of force needed to complete a task, and then allows us to apply it appropriately. It helps us measure and perceive distances, allowing us to move through our world without crashing into everything around us.
Children and adults with autism often have difficulty with proprioception and very well may just be the thing that goes bump in the night…and the day, and at work, and in the streets. Poor proprioception may likely be responsible for those bruises, skinned knees, and torn stockings that plague our days.
It can be difficult to explain how we, those with Asperger’s Syndrome or Autism, can be so clumsy in our day to day activities, but so adept when we are intently focused. I spent a great deal of my life dancing. I could dance with the grace of a swan, and fall down steps on my way off the stage.
I believe the difference is the intensity of our focus. We can, for a short period of time, intensely focus on crossing a balance beam to get to the other side. However, it is impossible to sustain that level of focus in all our activities 24 hours per day. I am sure that I would never fall down again, if I could focus on every step I took to the exclusion of everything else—with no distractions and no interruptions.
While a “normal” person unconsciously perceives and is aware of each step they take, an autistic person must think about and focus consciously to perceive what comes naturally to others. If I do not physically watch my feet taking each step, I wind up on the ground.
“Alone. Yes, that’s the key word, the most awful word in the English tongue. Murder doesn’t hold a candle to it and hell is only a poor synonym.”
― Stephen King
I should have been happy, but I was hurting.
I couldn’t hold down a job. I was sick for no apparent reason. I was newly married, but feeling completely alone.
I never had very much in common with my friends to begin with, and now that I was married and they were not—we had even less in common. To make matters worse, I was quickly discovering I had nothing in common with my new husband either. What the hell is wrong with me?
Communication in our house was dwindling down to nothing. My brain was wide-awake first thing in the morning, and wanted to ramble on-and-on about whatever interested me at the time. My husband had no interest in my interests, and I had no interest in his.
What were his interests anyway? I truly don’t know. Maybe because it didn’t interest me, it didn’t register, or maybe he had no interests I deemed worthwhile at all. I absolutely hated walking around in the city—destination, no-where. I did not enjoy shopping, let alone window shopping. I found no purpose in looking around at things we may someday want to buy, when I had no money to buy it now. If I went to a store, it was to purchase something I needed, and even then I usually was not happy about it.
Mornings were not my husband’s favorite time of the day, but by the time nightfall arrived I was too wiped out to think. I had nothing left in me to talk about, nothing that was important to me. If I’d had a particularly over-stimulating or stressful day, there was no way I was listening to what happened in his. I just couldn’t do it. I couldn’t listen to him ramble on about what went on in the office, or focus on his feelings.
Listening to meaningless nonsense about people I did not know or care about made me want to gouge my eyeballs out—or worse, his.
“No one else’s views have any validity in your eyes,” he said.
“Because they are wrong.”
That was all there was to it, if the other person’s opinion, idea, or view was wrong, it was wrong. There was nothing in the world that was going to change my mind; nothing that was going to make something that was wrong, right—nothing.
Besides, isn’t that the point—it was my point of view he continually invalidated. He could not understand what I was saying; therefore, it had no validity. He blocked out my words, shut out my opinions, and cut off my spirit. Maybe I had made a mistake, maybe I was wrong, and maybe this guy was all wrong for me.
I had no one. No one to talk to at least that is the way I felt. No one to hold on to
, or who would hold tightly back. No one to tell me everything was going to be all right. No one to say, yes, me too, I know how you feel—no one.
Chapter Eighteen
Year One of Marriage Sucked
Within the first four months, he lost his job, started working two jobs—day and night, and then lost those two as well. I left a job that suited me for a “better one,” messed that one up, and got impossibly sick because of it. By our first Christmas, we were both unemployed.
He looked for work; I looked for something else I could “do with myself.”
In the winter of 1998, we bought our first computer, which is when I discovered I enjoyed tinkering with it, and I enjoyed typing. Maybe it is that repetitive soothing motion it offers. I purchased a learn-to-type program, and obsessively taught myself to type…40 words-per-minute…60 words-per-minute…125 wpm!
There was more running around my beady little brain than just typing. I was taking a home medical transcriptionist course. Medical terminology came easily to me; the structures of the words were formed logically, many times rooted in Latin.
The course took me only three months in total to complete. Now, I had a skill. I set out immediately to find another job. A week later, I was working as a medical secretary, and transcriptionist for an Osteoporosis Center.
The Center had two offices in Brooklyn; one downtown, and the other in Bensonhurst where I lived. Perfect, no long train rides into Manhattan. It lasted three weeks.
“We are going to have to let you go,” the office manager told me on Friday morning when I arrived at work.
I didn’t understand. I was not late; I’d arrived on time each day. My reports were produced on time, and accurately. What was the problem?
“You made a personal call from work, which is against our policy.”
“What policy? Am I three years old that I am not allowed to call home to see if I needed to pick up a gallon of milk on my way home?” I said.
“And, you were rude to patients.”
“Rude to patients? When was I rude to patients?”
Again, I hopped on the train to make the trip back to our small apartment with my head hung. I’d lost yet another job, and this time, I did not even know why.
In the late 1990’s working from home was a dream. No one I knew actually did it, and others thought I was crazy for thinking that I could make money without going to work in a job. This never made any sense to me. Having a job, working for someone else, making someone else rich—not only was not appealing, but was illogical. Of course, I was the only one in our house to see it this way.
Determined, if nothing else, I would figure out a way. The one sure-fire way to get me to do anything is to tell me I can’t; it could not be done—maybe it was just stubbornness. Stubbornness that paid off.
I began typing medical reports from home for a transcription company. I worked as an independent contractor acquiring all of my jobs over the Dictaphone system. When completed, the reports were transmitted over the internet directly into the dictating hospitals’ computer systems. No getting dressed in the mornings, trudging through the streets in the cold, or dealing with people in an office—I worked completely alone.
I had succeeded at something finally, and my confidence in myself was increasing. I had done what everyone said I could not; I made more money “not working” than going to work. That is how family, friends and neighbors saw me, as someone who did not work because I did not leave the house to go to an office—how ridiculous. I worked. In fact, I worked harder for myself, longer hours, and only got paid for production.
There were no paid sick days, no holidays, or vacation time. If I did not work, I did not get paid—simple as that, and it was fine by me. But to say I did not work, that was insulting. Other people could have a lazy day and simply show up at work and do the bare minimum—I could not.
My new-found wings grew only to be clipped, nailed to the ground, and stomped upon. I thought things at home were getting better; I thought we were communicating; I thought everything was fine.
I never could understand the need to get out of bed at 4 a.m. to tinker on the internet before work, and then complain you’re tired and don’t get enough sleep. I mean—that makes no sense, stay in bed.
Morning after morning my husband would get up before the sun to hop on the computer, and load up AOL. I didn’t understand it, but I didn’t question it—why would I?
Internet pornography crept into my life. I didn’t want it, I didn’t invite it, and I never saw it coming. What began as conversations in chat rooms, escalated to pictures, videos, and illicit chats.
My breath caught in my throat. I tried to speak but could say nothing as I stared at the computer screen. Message after message from women wanting to chat popped up in the right-hand corner of the screen. Now I know why he was reluctant, panicked even, to give me his password so that I could change a setting on our computer.
I could barely hear over the blood rushing through my ears and the thumping in my chest. I was frozen, my butt glued to my chair, but my fingers still worked—enough to dial the bastard’s work number anyway.
I screamed, I flung things, I cursed, I cried, and then—I left.
Two months and plenty of counseling later I found out I was pregnant with my first son. Again, life was changing—fast.
I was thrilled—over the moon. I have always wanted children, a family, a home filled with fun, love, and peace. I longed for the ideal romanticized family full of smiles and laughter. My husband was sorry; all was forgiven; life was grand.
For a short time I rejoiced, and then Grandpa died.
He didn’t look well; he didn’t feel well. Grandma set her tea aside, dropped me off at home, and drove Grandpa straight to the emergency room. That was the last time I saw him. My heart hurt more than it had ever hurt before, but I couldn’t show it—not with other people around.
I arrived to the funeral parlor early to sit with him alone. I sat there just staring, no tears, just blank, numb. My best friend moved away, my grandpa was gone, my belly was full of life, but I was empty. It was time to run.
I stood staring at the house—my house—with the sun streaming through the trees.
I was born here, and part of me died here. The haunting echoes of my childhood lingered in the halls. I could hear it; run from it. I bit my trembling bottom lip determined to hold back the tears.
My stomach tightened when I looked at the empty rooms, my vanquished memories. The ones I’d thrust off to someplace new—away from where the air was infused with freshly baked semolina from the bakery up the street. Away from where lunch was routinely a Sicilian slice from the pizzeria around the corner, or thinly-sliced prosciutto and fresh mozzarella still hot from the vat, spread across crisp Italian bread. There would be no salmerias or delis in the Mississippi delta—no fresh baked cookies, Italian pastries or ices in the summertime.
I took a last look at the two-story brick house I’d grown up in, and the children running through the open Johnny pump, and then at the taxi waiting at the curb. The baby wiggled in my arms, as if he knew more than I did at only eight weeks of age. One tear escaped from my eye.
Grandpa had stood in the same place that I did, in the shade of the dogwood tree. He’d worn a smile from ear to ear when he overheard the news. Three weeks later he was gone. I tucked a sonogram picture into his pocket as he slept in his mahogany casket. That was the beginning of the end.
My arms trembled as I looked up at the dogwood tree—my tree. Grandpa planted that tree ten years earlier, right in front of the house. He tore up the patch of concrete himself and then built a white fence around his gift. “See, a tree can grow in Brooklyn,” he said when he showed it to me.
My husband’s arm wrapped around my shoulder, “You ready to go?”
I nodded, and then watched him put the last of the suitcases in the back of the cab. The sounds of soft sobs drew closer behind me. I couldn’t speak, my chest hurt, and my feet felt cemented to the
stoop.
My father’s tears always turned his eyes the brightest of blues. That day my eyes were gray. I knew I had to do this; a new life awaited us—a new job, a new house, a new baby, a new place. It was my idea after all.
The sun shone through the trees, but days this bright should not be so sad. Deep breaths, I can do this, I can say good-bye to this place.
Chapter Nineteen
A Disconnected Mom
I sat in our three bedroom, two bath rented home in the Mississippi Delta rocking back and forth on the edge of my sofa, holding my temples as the baby screamed. Dishes piled up in the sink, mail on the dining room table, toys lay sprawled across the living room floor, and piles of VHS tapes sat in front of the hearth.
Clothes were heaped in the corner of the bedroom—piled as high as the unmade bed while the diaper pail overflowed. The curtains remained drawn to close out the light, to shut out the world.
He screamed, he screamed, and he screamed some more. If my son’s eyes were open he was screaming—even if they were shut he cried in his sleep. No one could explain it; not his pediatrician, or the Emergency Room staff; not my friends, or family back home; no one.
“He has colic.”
That was their answer—for an entire year!
“I was never so happy to have a job in my life,” my husband said.
Of course he was happy; he got to leave the house.
One of the bedrooms was converted into a modest office with an unstable desk, outdated computer, dial-up internet connection, and a kitchen chair. I transcribed medical reports for Queens Hospital in New York, transmitting my work over the internet. At least I was still able to make money from home.
Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism Page 12
