NLDLine

The Story of Me

By Alice G.

The world of sound, touch, and sight has been uncomfortable, even painful, for as long as can remember. I vaguely remember being very small and afraid of having my shirt pulled over my head, and I dimly remember the sliminess of finger paints. But much of my early childhood exists in the inaccessible recesses of my mind.

When I was a child, I didn't have the words to describe the sensations. My parents could see that I was experiencing discomfort and that I was not happy. They wanted to help me but they could not. I tried to help myself by using my imagination to escape the pain of over-stimulation.

My family lived in a large old house in Syracuse, New York. It had large  rooms, ornate doorknobs, and hiding spaces. Next to the house, there was a trellis. In the spring, the trellis came alive with leaves and brightly colored flowers. The flowers looked like delicate trumpets I don't remember ever picking the trumpet flowers. In the backyard, behind an unused and decrepit garage, there was a secret spot, full of weeds and tall grasses. Sometimes, I walked back there, and I imagined myself on a safari in an exotic place really far away.

In front of the house and from one end of the block to the other, there were tall trees. They were old, older than me, older than my parents, probably older than my grandparents. I believed that those trees had been there forever, and that they would continue to be there until eternity. I had no idea that they were already diseased and would soon die. They were cut down in 1967 or 1968 and the spots where they had once been sat empty and forlorn.

Living inside the trees were dozens of my imaginary friends. Their world was always cheerful. They came to school with me and helped me with my math. Unfortunately, they weren't any better at arithmetic than I was. I had another imaginary friend. She lived in the full-length mirror on the landing between the first floor and the second floor of that big old house. I was only vaguely aware that there was a closet behind the door, which was always kept locked. Because the door could not be opened, it held an air of mystery.

I looked at my mirror image and she looked at me. I talked to her. She looked just like me, but she was my exact opposite. I was right-handed, and she was left-handed. I wondered what her world was like. Did she have to go to school? Did teachers honk like geese in her world? Did the screams in her gym class bounce off of the walls and into her ears? Did snapping gum explode like little bombs? Did flying baseballs look like missiles?  How did she feel when her clothing scratched or when people brushed up against her little body?

When we moved away from the big house in Syracuse, my mirror twin stayed behind. She lived in only that one mirror that was my window into another reality. The tree people vanished when the trees were cut down. I missed all of my imaginary friends, but I did not seek new ones.

I neither knew nor would I have understood that grownups who called themselves "professionals" had already given me labels. They had already  found me to be strange and somewhat abnormal. My parents didn't see me as abnormal. To them, I was bright, inventive, and unique. But, in junior high school, the world went out of control. The hallways in which I had to travel between classes were chaotic and frightening, filled with hordes of people in constant motion. The cafeteria echoed like thunder. The schoolwork had suddenly become very difficult. An easy target, I became the object of teasing.

I was sent to a psychologist and a psychiatrist, who probed and tested me, trying to figure out what was wrong with me. I didn't understand the purpose of all of those tests and only minimally participated. I believed that I was being punished. My parents told me that, if I told professionals
about my problems, I would feel better about myself. I didn't understand that. The following school year, I was sent to a special school for emotionally disturbed children. In reports, that were written for professionals and not for parents or for anyone else who cared about me, the
psychiatrist said that I was a "psychotic little girl." That was in 1969. From my research, I have discovered that the word "psychotic" was used very freely then to describe children who acted oddly and who did not conform. 

After a year in that school, I returned to regular education and eventually graduated from high school and college. I never complained about discomfort but, every now and then, I wondered if I would grow out of my problems. Noise still hurt my ears, causing them to feel as if they were being pricked by hatpins, and I still felt aggressive when people brushed against me, although I tried not to act on those feelings. 

At that time, I was not aware that the pain of over-stimulation had a detrimental effect on every facet of my existence. Instead, I decided that I was not very smart. When I worked in clerical jobs, I couldn't figure out how to file the papers and answer the telephones, and type words and numbers and keep all of those tasks straight. When I was a social welfare examiner, I felt so confused by the multitude of forms that I had to fill out and by all of the competing voices in the office that my supervisor's supervisor told me that I was not capable of learning the job. So, I went off by myself to Guatemala to learn Spanish. In Guatemala, I entered a different world that moved at a slower pace, where I was able to learn and to experience life. And I proved to myself that I was still smart.

Later, I went back to school to become a teacher. I was thrilled with how well I was doing in school. I was on the dean's list and felt that I was clever indeed. But, in student teaching, I discovered that I could not teach the basic skills, such as arithmetic and phonics, because I had never learned them. In a class of more than thirty children, I was overwhelmed by the commotion. My supervisor, in an abrupt way, told me that I was not meant to be a teacher.
It was then that I actually chose to seek help. I wondered what was wrong with me. I wondered if I might be autistic. 

After my experiences in junior high school, I had tried hard to keep everything inside. I have seen psychologists, audiologists, speech-language therapists, and a neurologist. I have learned that I am not a lazy malingerer, stupid, or psychotic. I have discovered that I have a condition
that affects the nervous system, called a sensory integration/processing disorder as well as a central auditory processing disorder and learning disabilities. I am still trying to learn how to live with this and to have a successful career, something that continues to elude me.

As an adult, I have discovered that my sensory processing can make life very difficult at times and incredibly fascinating at other times. The pace of life continues to increase, while my processing speed does not. And the world is full of things that make painful high-pitched beeps, such as trucks backing up, microwave ovens, and subway doors opening and closing.
Supermarkets can be overwhelmingly loud and full of too many brightly colored things and harsh lighting. The man-made world is full of too many sounds, sights, and smells. But I love the natural world, with its variety of colors, textures, and smells.

Socializing is a challenge for a person with a sensory processing problem. One day, I went on a date to a fund-raising party. The goal of the organization throwing the party was to raise money to plant trees. I was immediately attracted to the large buffet table. But, before long, the room, normally used as a gym, was crowded and noisy. I found a chair to accommodate me and my plate and went to sit in a corner so that I could avoid the touch of other people.

My ears were beginning to ring. My date and I went to the smaller front room. Everyone talked at once, saying "Blah, blah, blah..." My date was happily participating in a conversation. Although I sat next to him, I didn't understand a word that he said. He seemed calm and relaxed. A speaker approached a makeshift podium and the crowd quieted down. What a relief, I thought. But the speaker used the microphone. The microphone offered a shrill squeal. None of the others covered their ears nor did they show any sign of discomfort. The speakers said lots of words. Sometimes, people clapped and whistled. The whistles were painful. Then the speakers stopped, and the crowd dispersed to different rooms. My date mumbled something at me. He had asked me if I wanted a beverage. I did not want food or a beverage. In fact, the combination of perfumes, after shave lotions, and stale cigarette smoke lingering on bodies and hair was beginning to make me nauseated. I could neither eat nor drink anything. I knew that, for
someone as food oriented as I am, loss of appetite is a sure sign that something is wrong.

Earplugs. They were in my pocket somewhere. But, I had waited too long. It felt as if someone were jabbing at my eardrums with seam rippers. I looked longingly at the door. But the exit was blocked by a horde of people milling around the door. I would never be able to get past that crowd. I would have to go around one of the sides. I did not want the crowd to touch me nor did I want to touch the crowd. 

The voices around me became increasingly distorted. I reminded myself that this was supposed to be fun. After all, this was a fund-raiser for trees. And trees are good. I have always had a special affinity for trees. But I needed a headache remedy. I was sure that fun shouldn't be quite this painful.

When I got home, I tried to relax. I felt a sudden urge to flap my hands as ferociously as possible. I gave in to that urge and got rid of a little of the tension. I tried writing in my diary but I couldn't think without getting my thoughts interrupted by the noise. Instead, I lay back in my bed and fell asleep. When I woke up the next morning, my ears still hurt, and my eyes felt puffy. It was too hard to get out of bed. 

The world of books, on the other hand, has always been a welcoming place for me. In books, I could find knights and crusaders, kings and queens, space aliens, and talking fish. I made up my mind that I wanted to be a writer, so that I could invent a world and populate it with characters from my mind. And so, I have.

It seems that I have had my processing problems all of my life. And I also know that they don't go away. Someday, I will have a little house in the woods, which I will share with my cat and maybe also with a dog, and I will draw and paint and write, away from the city and the noise. But, until then, I will have to live in the world of too many sensations and not enough quiet spaces.