Aspie Writer: Twirling Naked in the Streets–and No-one Noticed–Growing up with undiagnosed Autism

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High School Hopping Aspie

December 8, 2012

aspiewriter High School, Problems in School, School Difficulties, The Autistic Teenager ASD, asperger's teenager, autism and adolescence, autism in high school, autistic teenager, undiagnosed autism Leave a comment

“If you liked being a teenager, there’s something really wrong with you.” ~ Steven King

Maybe Stephen King is right! I can admit that the high school years were an absolutely insane time. But as crazy as it was, I have some of my fondest memories in this period of my life like getting up every day, doing my hair, getting dressed, waiting for my friends to show up at my house in the morning to walk to the candy store.

I spent my first semester of high school at Franklyn Delano Roosevelt (FDR) High School in Brooklyn. The first semester was filled with ideas, homework, hopes, and dreams that quickly were pushed aside. During Freshman Semester One, I joined the student government, tried out for a play and the drama club, and twirling team—none of which captured my interest enough to last more than a couple of weeks.

It didn’t take long to figure out that things were changing. I felt like an earthling walking in the midst of a sea of Martians. Today, I feel like I am from another planet, but back then I assumed that I was the normal one, and those people around me must have been from somewhere else. Their ideas, emotions and actions, were completely foreign. I could never figure out what made people act the way they do, and others could not figure out what made me act the way I did.

I hated FDR… that is what I told myself after just one short semester. I wanted to go to John Dewey High School to participate in their dance program. It seems that dance was the only thing that held my attention; the only thing I can pinpoint caring about. Since I had not applied to the school during my eighth grade year, and I didn’t live within the school zone, I needed a special variance from the school district in order to attend. The variance was denied—no John Dewey for me.

If I couldn’t go to the school I wanted, then I would go to no school at all.

During seventh grade, I briefly joined a cheerleading squad at St. Dominick’s church. A friend of mine, introduced me to the squad, and to Jeannine who had cheered at St. Dominick’s. Jeannine and I became friends over the next couple of years. She attended a different junior high school than I was zoned for, but when high school began, we found ourselves zoned for the same school.

Beginning in the second semester of freshman year, Jeannine walked to my house every morning before school—if she hadn’t already spent the night. I had a horrible time trying to look good to go to school. Nothing was ever right, my clothes all looked “wrong,” my hair was always “wrong,” when all the girls around me looked beautiful in my eyes. My self-image was beginning to falter.

If we were actually heading to school, we would have been late each and every single day. But we weren’t heading to school; we were heading to the candy store. Yes—we left the house each day and spend our entire school day in the candy store hanging out, went home, and repeated the same thing the next day.

Years later we often laughed at how silly our routine was; we could have just stayed in bed and slept in. I never pretended to go to school. In fact, I could have saved myself plenty of beatings from my father if I had just made up a lie that I was in school, but I didn’t. When asked, I just told them that I didn’t go.

If I was going to stand by my decision to not go to school then at least I would have to be truthful about that decision.

Our time was spent lollygagging the days away at Sal’s Candy Store, or roaming around the campus of Kingsborough Community College. When the weather turned warmer our days were spent lying on the beach or on rolls of aluminum foil we placed on Vanessa’s roof to help tan ourselves. We baked ourselves like chicken cutlets, thoroughly covering ourselves with baby oil and iodine, or cooking oil if that was all we had. There were not that many skin cancer warnings back then.

By the beginning of sophomore year, I’d had enough of the candy store. That didn’t mean I was going to FDR because my mind was made up— set in stone against it. I couldn’t change that decision even if I wished it. A friend from junior high, Robyn, was attending Catholic School. She went to Fontebonne Hall Academy. I could do that; I could wear a uniform.

My insistence on going to Fontebonne Hall had nothing to do with academics, and everything to do with becoming someone different—again. I could be one of those girls. The ones who looked cute in their catholic school girl uniforms; the ones who belonged somewhere. I built this new image of myself up in my head, and when my parents told me they could not afford to send me to the school I had a complete meltdown.

I screamed, cried, accused them of not caring about me, of not loving me. I threw things in a fit of rage that I still fail to grasp. This was the first time I can recall have a rage meltdown, which was followed by two days of sleeping. This must have scared the wits out of my parents because when the two days of sleep had passed they announced that I could attend Fontebonne.

The Autistic Mind: Searching and Standing Alone

December 7, 2012

aspiewriter Friendships, Mind Blindness ASD, asperger's syndrome, autism and decision making, mind-blindness, undiagnosed autism 2 Comments

My middle school and beginning high school years were a glorious time of carefree oblivion. I was unenlightened, and off kilter but assumed it was not me who was “off” but the world around me. I had been searching for something, something I could never place my finger upon. Even when I was unaware of my search, it did not go unnoticed by my friends.

They didn’t understand me, or what I was looking for. The fact is, neither did I. I barely knew I was searching at all. The truth of it is, I was, I was searching for me.

Recently an old friend of mine stumbled upon my Asperger’s Syndrome (AS) and writing blog. She made this comment, “You seem to have found that thing you were always searching for and could never grasp…” My searching had not gone unnoticed by others in my life; I just failed to notice I was searching. Doesn’t everyone search in this manner? I’d never considered that others would not think, experience, and see life as I did. They confounded me with their thoughts and actions.

I had never shared my diagnosis with my friend, or with anyone for that matter. My own siblings have not been privy to what I had discovered about myself—to my diagnosis. I’m not hiding it, I just don’t share; it doesn’t come naturally.

My journey has always been a solo one, with little need to include others. The truth is it is also a journey with little thought of including others.

On the outside this looks like I am running around haphazardly jumping into situations without thinking, but that’s not true. I think about situations probably more than I ought to, weigh choices, endlessly analyzing possible outcomes. The fact that I don’t share my thoughts, ideas, or interests with others does not mean that I do not have them.

I have often been insulted by such accusations as, “you don’t think before you do something.” Or, “you should have talked to us about it.” Why? I truly could not fathom why I would share my thoughts, or discuss my actions prior to executing them. To my mind this makes absolutely no sense. I have thought something through, came to a decision, and acted upon my decision. Isn’t this the way everyone functions? Shouldn’t it be?

My failure to share may have been an integral part of my immunity to peer pressure. I never asked for anyone else’s input, nor did I want it most of the time. I worked out what to do on my own, without the need for others to validate my reasoning. To me, this is normal. Finding out what a group thinks before I make a decision, is not me thinking for myself.

In order to stand behind a decision I make, I must make it myself and have the confidence in that decision to act. This confidence is what defined my adolescence—my need for no-one, my ability to think for myself, and my confidence to stand behind my decisions.

The Guilt in the Failure to Empathize

December 6, 2012

aspiewriter adolescence, Empathy, Friendships, Guilt ASD, asperger's and empathy, asperger's and guilt, asperger's sydrome, autism and adolescence, empathy, guilt, undiagnosed autism 2 Comments

My junior high school / middle school years rushed by in a blur. I made many new friends, and we developed a tight knit group. But there were groups even within our group. Many things were changing, and probably too quickly for my brain to really keep up.

The unfortunate death of my best friend Vanessa’s father changed everything. She changed, and more than I realized at the time, more than I was probably able to understand. Her beautiful carefree and often a little crazy spirit turned cold and angry. She wasn’t the same person; she was distant. I rarely saw her smile.

As a child I was sad for her, but I don’t think I really understood. I couldn’t help; I didn’t know how to. Sad, grieving people make me uncomfortable because I never know what to do, or have the right thing to say—is there even a right thing to say?

I had no experience, no script to draw from, and so I too was lost.

Even today, looking back I feel sad for my friend, but I am sure that I do not “feel” this the way other people do. Not the way people think I should, and it is a source of deep internal guilt. How can I feel so disconnected, so clinical, so matter-of-factly about such events? What kind of person is like that? I must be awful.

I still carry this guilt even though I know the truth of it; the truth about autism and empathy. Autistic people do empathize in the strictest definition of the word. “The intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.” I think the problem is that during our youth we have less intellect and experiences to draw from, and may appear more aloof and uncaring. That is not at all the case. We care; we feel; we hurt; but sometimes we cannot show it no matter how much we want to.

I think this may have been what happened to me back then. My heart hurts even now penning these words, thinking back to my friend, and realizing that I was probably very little comfort when she needed me most. It makes tears flood my eyes because I wish I could go back and find a way out of myself to let her know how much I truly cared about her, what she was feeling, and what she was going through.

I know that there was nothing different I was capable of at the time; I do. All I was able to do is withdraw, to pull a little further away, and spiral into the madness my own life had become.

I succumbed to that internal guilt; to that inner voice who told me that I was a terrible uncaring human being. Autism literature says that we lack empathy, but with more life experiences to draw from I wholly disagree.

Empathy is about identifying with other people; seeing yourself in their reflections. That is something that as a younger person I could not do. I did not see my reflection anywhere. There was no-one else in my world that was like me. Only as an adult, identified, after diagnosis did I finally begin to see my reflection.

For the first time in my life I found others who looked like me. I had something contextually sound to relate to, which makes all the difference.

Empathy for autistics is about relations. The person, situation, and/or feelings, must in some way be related to us or our experiences. We must consciously direct our intellect to sift through our experiences so that we may understand what another is going through. It is extremely difficult, if not impossible, to relate to something or someone who is wholly disconnected from ourselves. And even then, our responses may not be what would be considered “normal” by others, but make sense to us.

Despite a need for a situation to relate to myself, I stand firm on the issue of empathy. I do not lack empathy; I crave it. I search it out, I look for it, and I track down books, pictures, paintings, hungrily looking, searching, needing to find a glimpse, a reflection of me.

This search is not a new occurrence; it is a search I began long ago.

More on Empathy: here.

Pearly Pink Lips, Six Packs and the Vomit Sweater

December 2, 2012

aspiewriter First Social Drinking, Social Rules, Stupid Ideas autism and alcohol, bad judgement, coping mechanism and autism, fitting in, socializing, undiagnosed autism 2 Comments

Immune to Peer Pressure; Learning to Socialize

Immunity to peer pressure does not mean unimpressionable. How do children learn to socialize? How do they adapt to the changing dynamics of their social life as they grow older?

My friends could not change my mind once it was made up, but what made up my mind? I was impressed upon by books, television shows, family, and friends much like everyone else with one important difference—I never felt any pressure to fit in. The things that I decided to do needed to be my decision, and mine alone. I was never going to do something simply because you wanted me to.

“She has a mind of her own.” ~Grandma

I suppose my grandmother was correct, but my mind was not always brilliant. It often had some real hair-brained ideas. Like the time Vanessa, my friend and partner in mischief, and I decided that it was ridiculous to have to reapply lipstick every day. We reasoned that since nail polish didn’t wipe off of our nails, it shouldn’t wipe of our lips—right? If we polished our lips with pearly pink nail polish they would match our nails.

Before going to sleep that night we polished our nails, and yes—our lips. Do you know what happens when nail polish dries on your lips when you are sleeping? You wake up with dry, cracked, bleeding lips. They were far from the pretty pearly pink that we had envisioned.

To make matters worse the only way to get it off would have been to pick it off, piece by painful piece along with the skin on our lips. Unless—we used nail polish remover! That for sure would take it all off. It was not a good morning.

Although our lip painting fiasco was painful, for the most part it was harmless. Some other ideas we had, not so much.

My father often sent me around the corner to buy beer and cigarettes. It never occurred to me that children were not supposed to be allowed to purchase these items since this is always how it had been.

One day Vanessa and I decided we were going to hang-out and drink some beer together. We knew that we could purchase the beer and no-one would ask if it was for my father or for us.

“How much do you think we should get?” she asked.

“A six-pack each?” I said. That was what our father’s always drank, a six pack in front of the television. But we were not going to drink in front of the television; we were going to drink a few blocks over in an alleyway that runs behind a row of houses on 61^st street.

We walked the four blocks from the store toting our six packs inside brown paper bags. When we arrived at the alleyway, we walked down the sloping drive and sat on the curb in front of a row of garages. It was already getting dark, and it was chilly.

We talked and laughed chugging down our cans of beer, which we both agreed tasted disgusting. The taste, however, faded the more can we drank until we didn’t notice the nasty taste at all. We laughed, fell over, and giggled some more.

“What are you kids doing back there?” a voice shouted from a nearby window.

“We better get out of here,” Vanessa said, “run.”

We ran up the sloped drive leaving a mess of beer cans, and crumbled bags of chips behind. We ran at least another block before stopping to laugh. We laughed so hard it became difficult to not pee our pants. We needed to get back to the house to use the bathroom, and quick.

The two of us walked up 20^th avenue back toward my house. The thought never occurred to me that we could be in trouble, or that we shouldn’t have been drinking beer. I spent my entire life emulating and adopting different personas to see which fit into different social situations. Hanging out with friends and drinking beer seemed a good “fit”.

The two of us stumbled to 64^th street laughing before Vanessa got sick. We almost made it; we were only a block from my house. We had drank those beers down so quickly that we had no idea what was coming; no idea that alcohol takes about 30 minutes to work its way through your system. I suppose that 30 minutes had passed.

Vanessa borrowed her Aunt’s sweater before leaving her house earlier that day. When I say borrowed, I mean she borrowed it out of her closet without asking her first. Our heads were spinning so we sat down on a small brick wall outside a storefront. Vanessa wound up with her head in the bushes as more beer expelled itself from her stomach.

Laughter had turned to crying. “Kim’s sweater!” Vanessa said with tears rolling down her face. “She’s going to kill me.”

“We need to get back home, and then we’ll wash it,” I said.

“No, she’ll know I borrowed it. She’ll kill me. I have to get rid of it. Let’s throw it away.”

The night had turned cold but with a six-pack of beer in each of us we didn’t feel the cold. In fact we didn’t feel much of anything. When Vanessa borrowed that sweater that morning, she had no way of knowing it would wind up in the twentieth avenue sewer covered in beer induced vomit by the end of the night.

Yes—that was what we were worried about. Not being in trouble for drinking beer, that was normal, but ruining a perfectly good sweater. Instead of washing it, our idea was to get rid of it by throwing it in the sewer. Can you see we were not thinking too clearly?

I had to run up the block to get my mother. I never worried about her being mad, in fact, that thought never crossed my mind. Why would she be made at me for drinking beer? They drank beer every day; it wasn’t illegal. I guess the fact that I was not yet thirteen years old never factored itself into my legal vs. illegal equation at the time. I considered the small detail of alcohol being legal without applying it properly to the whole picture (under-age drinking).

Vanessa was too sick for me to help her back to my house alone; my vomit waited until I was back at home.

I would like to report that it was the first and last time I deemed drinking with friends socially acceptable behavior, but that would be a lie. Maybe it was a lack of consequences that instilled the idea that alcohol was a good social tool to use. Maybe it was something that I was so familiar with because of my home life that it provided a comfort of sorts. That coupled with the numbing effect it had on my senses made it the tool of choice for many years to come. Instead of the being in a constant sensory overload, alcohol offered an interesting quiet, a dulling of my super-senses.

Not Fitting in is a Good Thing

December 1, 2012

aspiewriter Inflexible Thinking, Not Fitting in, Social Rules asperger's syndrome in girls, lying and autism, morality and autism, social difficulties, undiagnosed autism Leave a comment

“There is only one sin. and that is theft… when you tell a lie, you steal someones right to the truth.” ― Khaled Hosseini, The Kite Runner

My greatest asset is my inability to fit in, my inability to conform, and my stubborn immobility. The inflexibility to change my mind once made up, immune to persuasion has made me strange—odd—different. This is one difference that I would never change; my immunity to peer pressure.

Peer Pressure is another concept that I never could grasp. Doing things you knew were wrong just to fit in, or things you didn’t want to do in order to what? Keep your friends? Look good?

The one thing no-one could ever say about me, is that my friends made me do it. I never followed the crowd; I couldn’t.

I led, they followed, or I went alone.

No-one was able to convince me do something I did not want to do; it simply was not possible. Once I decided that decision was final, and forever. Everything was black and white, right or wrong, good or bad—no middle ground. If I’d judged something wrong; it was wrong, and nothing, no situation, no justification could make something wrong—right.

The key here though is when I judged something. My morality or idea of such was not swayed by other people, but also was not always in line with their idea of acceptable.

Something as seemingly simple as social niceties to me was unacceptable behavior. Lying just to make someone feel good was not acceptable to me; in fact, I didn’t even understand the concept. Why would someone do that? If I ask you a question, it is because I am truly expecting you to answer me—honestly.

It didn’t take very long for my friends to figure out that if they really wanted to know how they looked in a certain pair of pants to ask me. But if they wanted to feel good about themselves, or to hear that their hair looked fine when it was really sticking up in the air and looked like a little surfer man should have been riding the waves, then, I was not the one to ask.

I didn’t receive the manual. You know, the manual where these social rules were written—but it appeared that everyone else around me had. I often argued the reasoning for such stupidity. Why are you asking me a question that you don’t really want the answer to? If you don’t want an honest answer, then don’t ask!

I would rather you tell me that I looked awful before I walked out of the house, then to lie to me. If I looked terrible I could possibly do something about it (if I cared at the moment that is), but if you lie then you take the opportunity to make things better from me. I simple could not understand the necessity to lie. Lying was not something that ever came naturally.

Being Smart Didn’t Matter

November 30, 2012

aspiewriter Impulsivity, School Difficulties autism, Math, school difficulties, Sequencing, undiagnosed autism 2 Comments

Being interesting, hard headed, and independent worked in my favor. Since everyone usually laughed at the stupid things I did or got myself into, I became the class clown.

It didn’t happen on purpose exactly. I had the habit of not being able to filter my thoughts before they flew out of my mouth. I wasn’t trying to be funny on purpose, nor was I trying to be insulting or make fun of other people. But come on, if the English teacher came in to teach in leather pants what did she expect?

My flying thoughts were either met with scorn and ridicule, usually by other girls, or giggles and high-fives that came from the boys in class. I got a reputation for always saying what I thought, and not caring how other people felt about it. The problem was I didn’t understand why this was even something to notice. Didn’t everyone say what they thought? Why would you say anything else?

I did not have to work hard for my grades for the most part. If I needed to learn something, and I was interested in it, all I had to do was read. If I read the book, the information was usually branded onto my brain. That comes in handy when it is test time.

In the lower grades as long as I was able to do well on tests my grades stayed up. That had made sense to me. I took the test, passed (usually with a 100 percent) so I knew the work and should get an A right?

In the seventh grade I wound up in the principal’s office often (are you noticing a pattern here?) This time it was because I was being accused of cheating on my math tests. I didn’t like being accused of cheating, or lying—ever. Giving me “F’s” on tests I had done well on was an injustice I was unable to bear.

My mother often had to come up to school because of my “cheating,” and the yelling, screaming, and crying that followed. My behavior was “uncalled for and inappropriate” is what they said.

“Do you want her to take the test again?” my mother asked. That made me even angrier, why should I have to do the work twice just because they refused to believe that I knew how to do the work.

“Yes, but she must show all her work.”

I never understood why the math teacher did problems the way he did. Why did he have to go through all those meaningless complicated steps just to get the answer, when he could have just asked me? I knew the answer, but I never knew how to show how I’d come up with it. In fact, if I was made to “show my work,” or forced to do the math problem in the way they taught it, I could not do it. I arrived at the incorrect answer every time.

Apparently being smarter than the teacher and getting the answers my own way was unacceptable. I failed Math class for the first time in my life. This taught me two things: being smart didn’t matter, and grades mattered even less because they did not reflect what you knew or what you did not. They only reflected your ability to follow other people’s ways of doing things, even if those ways make no sense. That was something I have never been able to do.

Middle Ground

November 30, 2012

aspiewriter Coordination, Place-blindness, School Difficulties asperger's sydrome, autism and coordination, clumbsiness, place blindness Leave a comment

“Remember, Hope is a good thing, maybe the best of things, and no good thing ever dies.” ~ Steven King

My hope was dying.

My fragile facade, the tattered house of cards I’d erected came crashing down. My identity, the persona I became, the self I’d adopted, failed.

She didn’t dance, she didn’t twirl, she didn’t shine—she faded.

Thrust out of the safety of elementary classes with no hope of specialized schooling, the confusing transition to a middle ground began.

People rushed around me in every direction. I was caught standing in the middle of a busy intersection that was the school hallway, but there was no traffic light, and no street signs to mark my way.

I was lost on the third floor again, I think. Or, did I get off the staircase on the second floor? I was sure my computer class was in this corner of the hall.

A paper plane made of white wide-ruled loose leaf paper hit me in the head sticking to my hair. That’s when I felt the thump into my back and watched my book bag fly to the floor almost taking me with it.

I noticed the laughing before I saw the contents of my bag sprawled across the hallway. Papers were stepped on as dozens of kids tramped by, a sneaker hit my pen just as I was about to reach it launching it further into the sea of legs rushing past.

I scrambled across the floor to gather my books and haphazardly shove them back into my bag.

The bell rang, and the traffic sped up clearing most of the hall. Flushed and disoriented I stood up and looked around.

"She’s lost again," a girl said shaking her head as she walked toward the entrance of the classroom at the end of the hall.

"What an idiot," another girl snickered before disappearing into the room.

Another bell rang—great late again. I shuffled into the class behind the two girls, not knowing if that was the right room. I figured that if they knew I was lost they were probably in my class, although I was sure I hadn’t seen them before.

If not, it wouldn’t be the first time I burst into the wrong class room late.

Just the day before I ran into my social studies class, sat down, and took out my books only to realize that the room had become quiet and even the teacher was staring at me. "You don’t belong in this class young lady, “she said.

Dear God please let this be the right room this time.

It didn’t matter how many times I entered that building, I became lost every time. This new world of classes that changed locations every 45 minutes wreaked havoc on my school life.

I could not make it to school on time. I wandered the two long New York City blocks to school in the morning lost in my own thoughts. Each day I stopped at a small candy store on 17th avenue before school to buy two cowtails to eat on my way. It didn’t matter the time, I had to stop.

I suppose it would not have been so bad if it was only in the morning, but I wasn’t. I was late to every single class. Either I could not pack my things quickly enough to make it to the next classroom on time, or I would get lost in the crowd and wind up in the wrong place wandering desperately trying to find my way.

I continually showed up to the wrong classrooms at the wrong times. Keeping my schedule straight, the locations of the classes, and the books needed for each subject was nearly an impossible task. I was always late, in the wrong place, or unprepared.

After a long humiliating day of school, I had nothing left—no brain power or discipline. There was no way in the world homework was getting done. I suspect that many ASD children have this difficulty. That by the time they arrive home, school has sucked all the life out of them. This certainly was the case for me.

I was drained from trying to be where I needed to be, trying to keep up with my things, and that didn’t even take into consideration the actual people around me. Junior High/Middle School dynamics differs greatly from elementary relations.

There were always cliques, but middle school made them more prevalent. The girls that I was friends with as a child, mostly because of them being in the same class as me or friends of my mother’s had no obligation now to remain friends with the freak who could not remember where the computer class was after six months of school. Who wanted to be seen with the girl who was constantly scrambling after her things that were rolling down the halls?

Although I was able to execute a choreographed dance routine perfectly, I couldn’t walk without tripping over my own feet. Gym class was always entertaining—for the other people in my class.

I remember trying to learn how to ride a bicycle when I was about 10 years old. I learned how to ride much later than the rest of the children on the block. I did alright when I rode the bikes with only back petal brakes. The ones that you stop peddling forward, and use your feet to go backwards in order to stop. I often crashed into poles, and flew over the Johnny pump on our block more than once, but that was nothing compared to trying to ride a bike that employed hand brakes.

How did I manage to tip over sideways while riding and go splat onto the sidewalk? Or fly head first over the handle bars when depressing both the front and back breaks with my hands. I found it difficult to apply equal amounts of pressure with my left and right hands on the brakes simultaneously.

I would either squeeze the back brakes harder, or before the front, or worse depress the front brakes first or with more pressure than the back sending me sailing over the front of the bike. Bicycle riding was hazardous to my health.

Have you ever heard the expression, “can’t ride a bike and chew gum at the same time?” Well, that was me—literally. I literally cannot do it, not then, and certainly not today. Riding required my attention. I must use my legs to pedal and make sure that I use both hands at the same to break, if you added chewing gum, eating candy, or talking of any sort I hit the floor.

When I was first dating my husband he wanted to go for a bike ride. He often liked to bike ride, roller blade, and do various outdoor physical activities—all of which ending in some interesting and embarrassing stories for me.

One day we decided that we were going to take a ride down by the water. My brother John came along. We rode down alongside the water and down under the Verrazano Bridge.

“You had to see her. I watched her riding in front of me, then without stopping the bike started tipping over to the side until she was on the floor,” he recalled during Thanksgiving dinner. “When I asked her what happened, she told me she had no idea. She was riding and then was on the floor.”

That is exactly how it happened too. If you liked to laugh, I was interesting to be around.

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