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Tourette syndrome
Dec. 12th, 2012 12:35 pmHi Folks,
This is my article that won first prize in the 1999 Jack London Writing Contest. I hope you find it enjoyable and informative.
Scatterbrain
Accomplishing anything was more difficult for me than for others. Keeping jobs was especially hard. When I tried to figure out why, I couldn’t; the reasons I was given for my rejections were varied.
I grew up in a sheltered, critical environment where approval was hard to come by, so I didn’t begin adulthood with confidence. Dad kept his work separate from our family. He left for work early, and returned in the evening wearing a suit and tie. I knew he worked as an architect for the government and that he was a supervisor until he retired. He never brought me to his job site, nor did he talk much about his work.
Mom was a full-time mother and homemaker and attended various self-enrichment classes. When I started working, she seemed to think I should automatically know how to perform well—as if I could pull such knowledge down from the ozone with no role models for how to be a good worker.
My social skills suffered as a result of the years I spent rejected by, and isolated from, my peers because of my nervous quirks, such as head jerks, sniffs, squeaks, and other strange noises that I had trouble controlling. Therefore my employers wrung their hands over my lack of good judgment. It was as if everyone else was given a manual for how to perform well on the job but me.
My brain had a bad habit of switching things around when I was unaware so that they got out of sequence, misaligned, backwards, and generally botched. That happened the most with things involving visual detail, such as balancing my checkbook. I balanced it time and time again but never got the same balance twice. I forgot to write down the amounts of purchases, reversed numbers, put the decimal point in the wrong place, punched in the wrong numbers on my calculator, and skipped entries in my checkbook. That caused me such frustration that I swore, cried, and banged my desktop. I didn’t handle frustration well at all and the most upsetting thing was, I didn’t have a clue why I was so scatterbrained. I assumed I was just stupid.
Doing my own things was hard enough, but when I worked for others, it was no longer just my problem. My bosses discovered my errors and became angry. Like the time I worked in a plant nursery. The job involved displaying pots of geraniums on long wooden shelves in a large green house. There were many rows of shelves, and they all looked the same. When I first started the job, my boss, Bill, stood smiling over his large belly at my neat rows of geraniums, obviously pleased.
A few days later, however, I got the rows of shelves confused and put some geraniums on the wrong shelf, so I carried them over to the right one. After I’d moved a dozen pots, I realized that the geraniums were on the right shelf the first time so I started moving them back—only to find that it looked like the wrong shelf again, and suddenly I couldn’t trust my own eyes, my own brain, to tell me what I was looking at. It was as if there was a little green trickster following one step behind me, sabotaging everything I did.
“What’s this?” Bill asked when he found me moving the geraniums around. “Can’t you tell these rows apart?”
“I got them confused,” I said as my anxiety rose.
“You don’t concentrate very well,” Bill said. “You’ve just got to try harder.”
When I finally got the geraniums arranged correctly, the task had taken me three times as long to accomplish. Bill stood a few rows away, smoking a menthol cigarette and watching me, his previous smile replaced by a growing look of irritation. Is there something else I did wrong? I wondered, or was he just upset about my getting the pots arranged wrong? Perhaps he noticed my nervous quirks, which I could suppress for several hours. Although I tried to disguise them by coughing and fidgeting, people often gave me odd looks that I was too embarrassed to acknowledge.
Just try hard and it will be okay, I told myself, but it wasn’t okay. The tension built as my errors multiplied, until Bill fired me a week later.
Similar things happened at other jobs as well. If I would just try harder and pay attention, my employers told me, I wouldn’t screw up. Sometimes they thought I had a bad attitude, when I actually was desperate to do well. Once a woman I worked with in a cafe accused me of stealing from her when I divided our tips because I confused a five-dollar bill with a one. Some bosses verbally abused me, which only increased my stress so that I made even more errors.
My scatterbrain problem, as I called it, became my big, deep dark secret. I had to be sure no one found out, lest I lost another job. During interviews I felt like an imposter, covering for myself with false confidence so they didn’t know I was a scatterbrain. If I told them I had trouble doing things right, I knew they wouldn’t hire me. Who would?
I didn’t like conning people during interviews, but I couldn’t depend on my parents’ financial support and I had to earn my own living. I didn’t usually lie outright, just stretched the truth a bit and omitted telling potential employers I’d been fired. Sometimes I pulled the act off and got hired; usually I didn’t. I was too subdued, nervous. One woman told me I seemed depressed. “We need people who are more ‘up,’” she said.
“We noticed this vulnerability about you,” another woman explained to me on the phone, making me feel like my secret was written across my forehead.
Whenever I found a job, I was usually fired within three months. Sometimes I started the job with an inner knowing I would fail, that the job setting was ripe with things for me to switch or forget. But I always started each job with a fresh case of denial. That problem won’t come back, I’d think. Not on this job, with these people, or in this location.
But it always did. A building tension would permeate the air as my boss became increasingly cold and distant toward me, and I’d fill with foreboding. It’s happening again, I’d think. They’ve discovered my horrible secret. Then that inevitable day would arrive when my boss summoned me to her or his office. Here it comes, I’d think, she or he is going to fire me. And they would.
Whenever I lost a job, I was engulfed by feelings of failure, humiliation, and shame. What’s wrong with her? People must have thought. They told me I didn’t learn quickly enough, lacked initiative, worked too slowly, and didn’t dress appropriately. I tried to learn from the feedback so I didn’t make the same mistakes. I dressed nicely, took notes, and tried to learn what needed to be done so others didn’t have to tell me. But I always managed to upset someone.
After graduating from college and losing five jobs, I washed dishes in my college cafeteria. I worked alone in the dish room and the door had to always stay closed. “We have to keep the door closed so we don’t offend the poor, innocent customers with the sight of dirty dishes,” my boss said. The arrangement suited me just fine. I was so paranoid to be seen working for fear someone found something I did wrong that I panicked whenever anyone entered the dish room. Fortunately, I kept the dishwashing job until I quit and moved back to my hometown. But the problem followed me there, and I felt like society wanted me to climb behind a rock and die. What possible use was I to anyone? I wondered. What was wrong with me?
At first I thought it was my lazy eye. A visual specialist explained to me that my eyes were strained from the effort of keeping my vision from going double. That caused me trouble with visual details, paying attention, keeping organized, and even sleeping and relaxing, I was told. So I did visual training with an optometrist, but it didn’t alleviate my symptoms.
I took a meditation class. The teachers gave psychic readings and healings, and they said that my problems were caused by “beings in my space”. For lack of a better explanation, I believed them. I thought that if I took their classes, I would learn to “clear the beings out of my space”. The teacher kicked me out of the class because of my nervous quirks.
Suspecting I was dyslexic, I had myself tested at the Department of Rehabilitation. “You’re not dyslexic,” the gruff-mannered, middle-aged social worker explained when we went over the results. “Your reading and writing skills are way too high for that. You’re just so preoccupied with what’s going on inside yourself that you don’t pay attention to what’s going on outside. You just need to pay attention, that’s all,” she said, waving her hand at me in a gesture of dismissal. I felt foolish, and she made it sound like I could just stop being a scatterbrain anytime I wanted. But I couldn’t.
After more job failures, I worked in a cafe for the next four years. The job was menial and low-paid for a college graduate and I didn’t enjoy the work much, but I feared doing anything else. Finally I was financially independent from my parents. Finally I had a job I could keep.
So I worked at my humble job in the cafe, grateful that the managers were too lax to notice many of my foibles and too easygoing to care about the ones they did. I learned to compensate for my shortcomings by being efficient and courteous to the customers.
During my four years at the cafe, I got my Master’s in psychology and later completed the 3000 hours of counseling training required for my Marriage and Family Therapist license. Then I studied for the state licensing examinations. One of the materials I studied was the Diagnostic and Statistical Manual for Mental Disorders, Revised III, or DSM III. It was in that manual that, at age thirty-four, I discovered my true diagnosis, the reason for my difficulties.
Diagnostic Criteria for 307.23 Tourette’s Disorder
‘ . . . motor tics . . . vocal tics . . . causes . . . distress or impairment in social or . . . occupational functioning . . . clicks, grunts, yelps, barks, sniffs, snorts, and coughs . . . associated symptoms . . . distractibility . . . social discomfort, shame, self-consciousness . . . depressed mood . . . learning disorders . . .’
When I first came across the diagnosis, I panicked. The description on the page sounded exactly like me, irrefutable proof on paper that I was in fact a raving, abnormal, crazy freak. Horror washed through me like freezing ocean water. I didn’t want to have that bizarre, unattractive disorder. It couldn’t be true. I do not have this, I argued with myself. But every time I opened the DSM III to study, that diagnosis lurked within the pages, daring me to read it again. I avoided it at first, but the tension increased like a heavy weight pressing on my chest, until I was drawn to the page with a strange, morbid fascination.
One day as I sat at my desk staring at that awful diagnosis, I felt my denial drain from me, in its place flowing a warm, peaceful sense of surrender. I could no longer deny the truth. I had Toilette’s Disorder.
It was over a year, however, before I noticed the words “learning disorders” on the page in the diagnostic manual, so I didn’t yet connect my Tourette’s with my scatterbrain problem.
I was also terrified of telling others what I had, especially my boyfriend Ian.
“Grunts, yelps, and barks—ha ha!” Ian laughed one night while I studied, as he read the diagnosis over my shoulder. He didn’t have a clue that I was the one he was laughing at. Oh God, I thought. I could never tell Ian. I felt like a gay person hiding in the closet, and I told no one but my therapist. She didn’t know much about Tourette’s, however, for while she agreed I had it, she didn’t tell me anything more about it.
My therapist referred me to a neuropsychologist, who ran me through a battery of tests. I told him about my Tourette’s, but he apparently didn’t know much about it either. When I read his assessment, he didn’t diagnose me with it because, he wrote, unaware of how I suppressed my tics, he didn’t notice them in his office. The assessment did say, however, that I was mildly to moderately impaired on half the tests. His diagnosis, if it can be called that, was “some kind of atypical attention-deficit disorder”.
Feeling just as mystified as before, I talked with my therapist about my symptoms, all the while hoping she could tell me their cause. But she couldn’t.
Years later I learned from some literature that my scatterbrain problem was caused by being learning-disabled, another symptom of my Tourette’s. My quick temper was another common symptom.
Tourette’s is a neurological disease caused by an imbalance of dopamine, serotonin, and norepinephrine in the brain, causing it to send signals to certain parts of the body, including the vocal cords, to move against the person’s will. It is non-contagious and usually genetic. There’s no known cure.
I told my family, and Ian, now my husband, about my Tourette’s, but they didn’t believe me. “You’re just nervous,” said my sister. “Everyone makes mistakes sometimes. Besides, diagnosing yourself is stupid.”
“We don’t know for sure that’s really what you have,” said Ian.
Feeling indignant over not being taken seriously, I went to see a neurologist. “I know I have Tourette’s,” I told Dr. Taylor as I explained my symptoms. “I just need you to concur so my family will believe me when I tell them I have it.”
Dr. Taylor stood in his white lab coat, arms folded, leaning against the counter of his office. “There’s no other diagnoses”, he said with an amused smile, “that it could possibly be.” He scribbled “Tourette syndrome” on his letterhead and handed it to me. “You can show this to your family, and I’ll make a plaque for them with those words on it too.” We looked at each other and laughed.
My dad later admitted that his deceased sister had symptoms like mine, as well as himself when he was a child. Knowing the name of my problem brought a new acceptance of myself. No longer did I berate myself for being unable to control my tics or my learning disorders. Finally I could tell others I was neurologically impaired, and ask for acceptance rather than endure scorn for my symptoms. I could see my past through a new lens of understanding, and for the first time, I dropped the feeling of shame I’d worn like a cloak for my entire life.
I am a licensed Marriage and Family Therapist and author of the realistic fantasy The House at 844 1/2, about a mother and her 12-year-old son who both have Tourette syndrome. I live in Palo Alto, CA with my husband, two children, and our hyperactive poodle. I can be reached at ejl@elizabethjohnsonlee.com, or visit me at http://elizabethjohnsonlee.com.
This is my article that won first prize in the 1999 Jack London Writing Contest. I hope you find it enjoyable and informative.
Scatterbrain
Accomplishing anything was more difficult for me than for others. Keeping jobs was especially hard. When I tried to figure out why, I couldn’t; the reasons I was given for my rejections were varied.
I grew up in a sheltered, critical environment where approval was hard to come by, so I didn’t begin adulthood with confidence. Dad kept his work separate from our family. He left for work early, and returned in the evening wearing a suit and tie. I knew he worked as an architect for the government and that he was a supervisor until he retired. He never brought me to his job site, nor did he talk much about his work.
Mom was a full-time mother and homemaker and attended various self-enrichment classes. When I started working, she seemed to think I should automatically know how to perform well—as if I could pull such knowledge down from the ozone with no role models for how to be a good worker.
My social skills suffered as a result of the years I spent rejected by, and isolated from, my peers because of my nervous quirks, such as head jerks, sniffs, squeaks, and other strange noises that I had trouble controlling. Therefore my employers wrung their hands over my lack of good judgment. It was as if everyone else was given a manual for how to perform well on the job but me.
My brain had a bad habit of switching things around when I was unaware so that they got out of sequence, misaligned, backwards, and generally botched. That happened the most with things involving visual detail, such as balancing my checkbook. I balanced it time and time again but never got the same balance twice. I forgot to write down the amounts of purchases, reversed numbers, put the decimal point in the wrong place, punched in the wrong numbers on my calculator, and skipped entries in my checkbook. That caused me such frustration that I swore, cried, and banged my desktop. I didn’t handle frustration well at all and the most upsetting thing was, I didn’t have a clue why I was so scatterbrained. I assumed I was just stupid.
Doing my own things was hard enough, but when I worked for others, it was no longer just my problem. My bosses discovered my errors and became angry. Like the time I worked in a plant nursery. The job involved displaying pots of geraniums on long wooden shelves in a large green house. There were many rows of shelves, and they all looked the same. When I first started the job, my boss, Bill, stood smiling over his large belly at my neat rows of geraniums, obviously pleased.
A few days later, however, I got the rows of shelves confused and put some geraniums on the wrong shelf, so I carried them over to the right one. After I’d moved a dozen pots, I realized that the geraniums were on the right shelf the first time so I started moving them back—only to find that it looked like the wrong shelf again, and suddenly I couldn’t trust my own eyes, my own brain, to tell me what I was looking at. It was as if there was a little green trickster following one step behind me, sabotaging everything I did.
“What’s this?” Bill asked when he found me moving the geraniums around. “Can’t you tell these rows apart?”
“I got them confused,” I said as my anxiety rose.
“You don’t concentrate very well,” Bill said. “You’ve just got to try harder.”
When I finally got the geraniums arranged correctly, the task had taken me three times as long to accomplish. Bill stood a few rows away, smoking a menthol cigarette and watching me, his previous smile replaced by a growing look of irritation. Is there something else I did wrong? I wondered, or was he just upset about my getting the pots arranged wrong? Perhaps he noticed my nervous quirks, which I could suppress for several hours. Although I tried to disguise them by coughing and fidgeting, people often gave me odd looks that I was too embarrassed to acknowledge.
Just try hard and it will be okay, I told myself, but it wasn’t okay. The tension built as my errors multiplied, until Bill fired me a week later.
Similar things happened at other jobs as well. If I would just try harder and pay attention, my employers told me, I wouldn’t screw up. Sometimes they thought I had a bad attitude, when I actually was desperate to do well. Once a woman I worked with in a cafe accused me of stealing from her when I divided our tips because I confused a five-dollar bill with a one. Some bosses verbally abused me, which only increased my stress so that I made even more errors.
My scatterbrain problem, as I called it, became my big, deep dark secret. I had to be sure no one found out, lest I lost another job. During interviews I felt like an imposter, covering for myself with false confidence so they didn’t know I was a scatterbrain. If I told them I had trouble doing things right, I knew they wouldn’t hire me. Who would?
I didn’t like conning people during interviews, but I couldn’t depend on my parents’ financial support and I had to earn my own living. I didn’t usually lie outright, just stretched the truth a bit and omitted telling potential employers I’d been fired. Sometimes I pulled the act off and got hired; usually I didn’t. I was too subdued, nervous. One woman told me I seemed depressed. “We need people who are more ‘up,’” she said.
“We noticed this vulnerability about you,” another woman explained to me on the phone, making me feel like my secret was written across my forehead.
Whenever I found a job, I was usually fired within three months. Sometimes I started the job with an inner knowing I would fail, that the job setting was ripe with things for me to switch or forget. But I always started each job with a fresh case of denial. That problem won’t come back, I’d think. Not on this job, with these people, or in this location.
But it always did. A building tension would permeate the air as my boss became increasingly cold and distant toward me, and I’d fill with foreboding. It’s happening again, I’d think. They’ve discovered my horrible secret. Then that inevitable day would arrive when my boss summoned me to her or his office. Here it comes, I’d think, she or he is going to fire me. And they would.
Whenever I lost a job, I was engulfed by feelings of failure, humiliation, and shame. What’s wrong with her? People must have thought. They told me I didn’t learn quickly enough, lacked initiative, worked too slowly, and didn’t dress appropriately. I tried to learn from the feedback so I didn’t make the same mistakes. I dressed nicely, took notes, and tried to learn what needed to be done so others didn’t have to tell me. But I always managed to upset someone.
After graduating from college and losing five jobs, I washed dishes in my college cafeteria. I worked alone in the dish room and the door had to always stay closed. “We have to keep the door closed so we don’t offend the poor, innocent customers with the sight of dirty dishes,” my boss said. The arrangement suited me just fine. I was so paranoid to be seen working for fear someone found something I did wrong that I panicked whenever anyone entered the dish room. Fortunately, I kept the dishwashing job until I quit and moved back to my hometown. But the problem followed me there, and I felt like society wanted me to climb behind a rock and die. What possible use was I to anyone? I wondered. What was wrong with me?
At first I thought it was my lazy eye. A visual specialist explained to me that my eyes were strained from the effort of keeping my vision from going double. That caused me trouble with visual details, paying attention, keeping organized, and even sleeping and relaxing, I was told. So I did visual training with an optometrist, but it didn’t alleviate my symptoms.
I took a meditation class. The teachers gave psychic readings and healings, and they said that my problems were caused by “beings in my space”. For lack of a better explanation, I believed them. I thought that if I took their classes, I would learn to “clear the beings out of my space”. The teacher kicked me out of the class because of my nervous quirks.
Suspecting I was dyslexic, I had myself tested at the Department of Rehabilitation. “You’re not dyslexic,” the gruff-mannered, middle-aged social worker explained when we went over the results. “Your reading and writing skills are way too high for that. You’re just so preoccupied with what’s going on inside yourself that you don’t pay attention to what’s going on outside. You just need to pay attention, that’s all,” she said, waving her hand at me in a gesture of dismissal. I felt foolish, and she made it sound like I could just stop being a scatterbrain anytime I wanted. But I couldn’t.
After more job failures, I worked in a cafe for the next four years. The job was menial and low-paid for a college graduate and I didn’t enjoy the work much, but I feared doing anything else. Finally I was financially independent from my parents. Finally I had a job I could keep.
So I worked at my humble job in the cafe, grateful that the managers were too lax to notice many of my foibles and too easygoing to care about the ones they did. I learned to compensate for my shortcomings by being efficient and courteous to the customers.
During my four years at the cafe, I got my Master’s in psychology and later completed the 3000 hours of counseling training required for my Marriage and Family Therapist license. Then I studied for the state licensing examinations. One of the materials I studied was the Diagnostic and Statistical Manual for Mental Disorders, Revised III, or DSM III. It was in that manual that, at age thirty-four, I discovered my true diagnosis, the reason for my difficulties.
Diagnostic Criteria for 307.23 Tourette’s Disorder
‘ . . . motor tics . . . vocal tics . . . causes . . . distress or impairment in social or . . . occupational functioning . . . clicks, grunts, yelps, barks, sniffs, snorts, and coughs . . . associated symptoms . . . distractibility . . . social discomfort, shame, self-consciousness . . . depressed mood . . . learning disorders . . .’
When I first came across the diagnosis, I panicked. The description on the page sounded exactly like me, irrefutable proof on paper that I was in fact a raving, abnormal, crazy freak. Horror washed through me like freezing ocean water. I didn’t want to have that bizarre, unattractive disorder. It couldn’t be true. I do not have this, I argued with myself. But every time I opened the DSM III to study, that diagnosis lurked within the pages, daring me to read it again. I avoided it at first, but the tension increased like a heavy weight pressing on my chest, until I was drawn to the page with a strange, morbid fascination.
One day as I sat at my desk staring at that awful diagnosis, I felt my denial drain from me, in its place flowing a warm, peaceful sense of surrender. I could no longer deny the truth. I had Toilette’s Disorder.
It was over a year, however, before I noticed the words “learning disorders” on the page in the diagnostic manual, so I didn’t yet connect my Tourette’s with my scatterbrain problem.
I was also terrified of telling others what I had, especially my boyfriend Ian.
“Grunts, yelps, and barks—ha ha!” Ian laughed one night while I studied, as he read the diagnosis over my shoulder. He didn’t have a clue that I was the one he was laughing at. Oh God, I thought. I could never tell Ian. I felt like a gay person hiding in the closet, and I told no one but my therapist. She didn’t know much about Tourette’s, however, for while she agreed I had it, she didn’t tell me anything more about it.
My therapist referred me to a neuropsychologist, who ran me through a battery of tests. I told him about my Tourette’s, but he apparently didn’t know much about it either. When I read his assessment, he didn’t diagnose me with it because, he wrote, unaware of how I suppressed my tics, he didn’t notice them in his office. The assessment did say, however, that I was mildly to moderately impaired on half the tests. His diagnosis, if it can be called that, was “some kind of atypical attention-deficit disorder”.
Feeling just as mystified as before, I talked with my therapist about my symptoms, all the while hoping she could tell me their cause. But she couldn’t.
Years later I learned from some literature that my scatterbrain problem was caused by being learning-disabled, another symptom of my Tourette’s. My quick temper was another common symptom.
Tourette’s is a neurological disease caused by an imbalance of dopamine, serotonin, and norepinephrine in the brain, causing it to send signals to certain parts of the body, including the vocal cords, to move against the person’s will. It is non-contagious and usually genetic. There’s no known cure.
I told my family, and Ian, now my husband, about my Tourette’s, but they didn’t believe me. “You’re just nervous,” said my sister. “Everyone makes mistakes sometimes. Besides, diagnosing yourself is stupid.”
“We don’t know for sure that’s really what you have,” said Ian.
Feeling indignant over not being taken seriously, I went to see a neurologist. “I know I have Tourette’s,” I told Dr. Taylor as I explained my symptoms. “I just need you to concur so my family will believe me when I tell them I have it.”
Dr. Taylor stood in his white lab coat, arms folded, leaning against the counter of his office. “There’s no other diagnoses”, he said with an amused smile, “that it could possibly be.” He scribbled “Tourette syndrome” on his letterhead and handed it to me. “You can show this to your family, and I’ll make a plaque for them with those words on it too.” We looked at each other and laughed.
My dad later admitted that his deceased sister had symptoms like mine, as well as himself when he was a child. Knowing the name of my problem brought a new acceptance of myself. No longer did I berate myself for being unable to control my tics or my learning disorders. Finally I could tell others I was neurologically impaired, and ask for acceptance rather than endure scorn for my symptoms. I could see my past through a new lens of understanding, and for the first time, I dropped the feeling of shame I’d worn like a cloak for my entire life.
I am a licensed Marriage and Family Therapist and author of the realistic fantasy The House at 844 1/2, about a mother and her 12-year-old son who both have Tourette syndrome. I live in Palo Alto, CA with my husband, two children, and our hyperactive poodle. I can be reached at ejl@elizabethjohnsonlee.com, or visit me at http://elizabethjohnsonlee.com.
