The craziest things

"I have cystic fibrosis, and sometimes I cough a lot. Here's what happens when I get in line at school. the kids in front of me walk real fast, and the kids behind me walk real slow. So it's sort of like I'm all alone." 

"This kid called me the human bowling ball when I came back to school without hair. I just told her that I sold my hair for a million dollars. I told her that I was going to buy a kangaroo with the money, and of course a zoo to keep it in."

"When I can't play basketball because of my heart problem, there's one mean boy in my class who makes fun of me and calls me lazy. I hate it when he does that, but at least the other kids tell him to shut up."

"The teacher was probably trying to be nice, but when she saw somebody teasing me, she told the whole class that I had a disease, and that they should be nice to me. I could feel my face get real hot, and I know that I blushed. It was horrible!" 

"The thing that I hate the worst, even worse than IVs in the hospital, is when kids whisper behind my back and when they tell me how brave I am. Like I had a choice about all of this!"

"You don't LOOK like you have cancer!"

"My brother has cystic fibrosis. I hate it when he coughs and people tell my mom she should take him to the doctor for his cold. They act like she isn't taking good care of him. They even say, 'he shouldn't be out in stores when he is sick like that.' It really bugs me, cause my mom works hard to take care of my brother."

"Or how about when people's kids ask, 'Why's he in that wheelchair?' and the parents say, 'Shh... Don't you ever ask questions like that!!!' and drag their kid away like Owen is gonna give them some disease or like the kid is in big trouble or something? I hate that!!! I wish that people would ask more questions, instead of acting like Owen is some sort of freak."

  "I have Ulcerative Colitis and the medicine I take makes my face really puffy. It is really hard when people who know me very well don't reconize me. Also, some people, even some of my friends,called me Chipmunk or Cabbage Patch. I tell them that it doesn't hurt myfeelings to be polite but it really does." 

"I had to wear a brace on my back because of scoliosis. It 's so hard to answer questions from kids like, "how did you break your neck" and "wow, man, what happened to you?" and "I'm glad I don't have to wear something (yuck) like that every day and night for years. You'll never get ANY dates."

"I have Hemophilia, and I'm missing some clotting factors so my blood doesn't clot like "normal people's". That means that sometimes I'm on crutches and people think I'm just kidding."

"When Joseph and Jon were babies it took hours to do any shopping.  " Oh, are they twins?"  I often threatened to make a sign and attach it to their stroller "Yes, we're twins, We're identical, We're ____ month's old, Mom needs to get home, Please leave her alone."  As they got older and did not develop,  I threatened to get them matching t-shirts "Yes, we're twins, we're mentally retarded, please quit staring."

"My son has cystic fibrosis, and is now a grownup and married. School was very hard for him because of teachers that didn't understand and children that could be so cruel.  I spent the good portion of my days speaking with principals and teachers.  In jr.high he was approached by a student asking when he was going to die. It turns out that the science teacher had told the class what he had when he was absent one time and that he wasn't going to live very long."

"I have Treacher Collins syndrome and there were many times when I was the butt of the kids' jokes.  One boy from the junior high always entertained himself on the bus by making fun of everyone so it was inevitable that he should get around to making fun of me. He sat behind me one hot, sticky afternoon. Leaning over the seat he asked in a snide voice, in reference to my rather large nose, "Are you related to Pinocchio?" After a moment's hesitation to get over my surprise, I turned to him and calmly said, "Why, yes I am. He was my mother's great uncle's cousin's nephew. How ever did you guess that we were relatives?" Stunned, the boy clamped his mouth shut, sat down in his seat, and never said another word to me again."

"I've had Juvenile Rheumatoid Arthritis (JRA) since I've been 12 years old. The only time it acts up bad now is when it rains.  I've had a hard time because by looking at me you wouldn't be able to tell I was sick at all and on certain days I don't even feel sick which makes people tell me that I fake it.  Even the teachers give me a hard time.  Some days I'm fine running around the hall and doing what a normal kid is able to do.  And other days I can't even hold a pencil."

"I have asthma. It's hard at school when my gym teacher thinks I'm  just not being diligent when I  stop every few minutes in class.  I told her what was wrong and she didn't believe me. I felt so bad. It was the worst when we had field day at school and I could not participate. It was really annoying to have every one calling me lazy when I could not participate. I
was really mad."

"My mother is from Singapore and my dad is from Denmark. When I was in the junior school, people used to call me Chinese Boy and Ching because my eyes are different. I used to come home and cry because I was unhappy. One day, I started calling people English Boy and they stopped. It isn't funny calling people names because we are all different and we can't change that. "

“I can never be just me…it’s all about the wheelchair. A chair that I have because of the muscular dystrophy, but I am not the wheelchair. And I am definitely not the muscular dystrophy. You’d never believe it, though, because even my friends treat me like I’m perishable. They want to push my wheelchair and carry my books. Some kids I definitely do not like talk to me like I’m four years old instead of ten; you know, baby talk. Disgusting. If I were bigger and they were smaller, I’d answer them like 'what are you trying to say, twerp heads?'” 

"My son has cystic fibrosis. Sometimes we're very sad about it. When we try to explain about his illness to people, some of them say 'oh maybe he'll grow out of it.' They just don't understand that it's forever."

"Now this one takes the cake. I have a lot of scars from a burn on my face. One day I was with my mom in this neighborhood in NYC, and all these ladies were sitting on their front steps talking. When we walked by, one of them looked at me and then made the sign of the cross. I guess she thought I was a devil or something."

"When Brianna was 8 months old, she had a number of nevi removed from her head.  Her head was almost completely bandaged for almost one week.  Two days after surgery, I took Josh, our then 3 1/2 year old son, and Brianna to buy some Tylenol for her.  I put her in the cart in her infant carrier and Josh in the back of the cart.  A lady walked up to us, looked at Bri, and said to her, "Did your big brother do that to you?" 

"When my daughter was very little, soon after she sustained  an accident that resulted in her having facial burns, I was thinking of making a sign, $.10 a peek, because of all the staring."

"When is was in 3rd grade it was my first year at a new elementary school. I had just moved there and had NO friends. Anyway, I made friends very quickly, but then when I met the parents or the parents saw me, they warned their kids not to go near me or be my friend. When I heard that parents were telling their kids that I cried for almost 6 hours.  I had to go to a counselor 'cause kids were complaining that I had warts and  parents were complaining 'cause they thought their kids would get them. I became the nerd of the school in just 2 days. Now I have learned how to deal with my problems and I hope you can too."

Don't"I have something called Sturge-Weber Syndrome.  Because of it, I have a very large purplish-red birthmark on half of my face and scalp.  When I was in grammar school, the boys used to call me "Red Face."  It made me cry while the entire class of 36 got a good laugh at my expense.  Then one day, calling a friend, I noticed that the boy who teased me the most went by a nick name all the time.  Well, the next time he called me "Red Face," I responded by telling him, "Oh, shut up, Joseph Blow!"  Boy, did he get mad!  "That's -that's not my name!  It's Joe!"  So I told him, "Now you know how I feel.  My name's not Red Face."  Took a few reminders, but he learned."

Don't"I was born a bit too early and as a result my eye muscles aren't coordinated. It's frustrating when people stare and then look at me from one direction, then another, and ask meanly, "are you looking at me completely, or with one eye?"

Don't"I have kidney stones that kill and make me go to the bathroom as often as every 5 minutes. People look at me like I am weird and crazy, and sometimes tell me that I must be faking it! They should be in the ER with me.  It hurts when people don't believe what they can't see."

Don't"Right when  I returned to school after chemo,  I got sick in class. I ran out of the room, barely making it down the hall before I cut loose. When I got back, the guy next to me started laughing. As cunning as I am, I grabbed his backpack, open it up, and FAKED the BIGGEST HURL EVER HEARD!!!"

Don't"I was born prematurely, with a slight vision problem. Let me tell you how frustrating it is when people stare--and then look at me from one direction, then another, and ask meanly ' are you looking at me completely, or with one eye?' I can't stand it. "

Don't"I just started school after a summer spent in and out of the hospital, and kids look at me as if #1, I just dropped in from another planet, or #2, was about to drop dead on the floor. I especially hate the pity!"

Don't"I have very, very, very, truly, very, mild Cerebral Palsy, which affects my brain and my muscles. Kids often tease me 'cause I can't run fast. If only one girl didn't start rumors about me...I don't even go in a wheelchair!"

Don't"Psoriasis: It is not fun having this; All of the kids tease me; But why, I ask? What if they were stuck in my body; what if they had a disease? So many what if's, and for 10-year-old me,  so many 'you have its'." 

Don't"I have a disease called sickle cell anemia which is not good. This disease makes my eyes very yellow, and then what happens is that people make fun of me...even grownups. They even act as if I am contagious."

Don't"It really drives me nuts when people say that only old people get arthritis. I've had a type of arthritis called ankylosing spondylitis since 5th grade and it totally destroyed my hip joint. I sure wishe that people would not say that if I would do this or that I would get rid of the arthritis – like I am not trying hard enough.

Don't"I've always been very short and people assume I'm six when I'm really thirteen. I hate it when I get patted on the head and told I'm so cute. Gross. I'm for banning all size discrimination and making it illegal."

Don't"I was walking with my sister and this man asked me if I had a sports injury, since I was limping. When I told him that I had recovered from cancer and had a titanium rod in my leg , he about freaked out, saying things like, 'you're so brave' and 'here I thought I had problems'. Spare me!"

Don't"You'll never believe this one. I was told that my new school had a 'disabled toilet' I could use.  Well, there were actually 5 steps to climb to get up to it - and this room  doubled as a place for lost property. Go figure!!"

Don't"When I was born, everything seemed perfectly normal. Then I got meningitis and was in the hospital for 2 weeks. As a result of the meningitis, I became deaf.  When people see my implant, they often say "what's that thing on your head?" Sometimes  I say 'hey watch it ...I'm a jr. undercover FBI agent!' That's the easiest thing to do, because if I don't, they keep asking me really frustrating questions."

Don't"I shake sometimes, and bad words come out of my mouth from nowhere. I wish people knew that I cannot help what my body does, and what my mouth says during those times. I don't know why it happens. What I do know is that the words kids use to tease me stick to me like they were superglued on. I am really not a freak. Really!"

Don't"I have a problem with my eyes-- they blink a lot and it looks like I squint, too.  The kids make fun of me by blinking or squinting just like me and I hate it!"

Don't"I had to go to the hospital because I was sick, and some lady with a white jacket came into my room to put a needle in my arm. She poked me three times, and then she told me that I had very bad veins, and that she couldn't even use a big boy needle. I was sad and mad and I didn't want to talk to anybody after that."

Don't"I take care of my sister after school. She has autism, and I used to get called names because of her. I didn't mind the kids calling ME names but when they called my sister names I was really upset. One boy said to me "Your sister is ssssssssssssooooooooo thick! She can't
do anything for herself!!!" I was sssssooooooo mad that I threw my school dinner over him and stormed out the hall." 

Don't"I'm 17 and have severe asthma. The only place I have attacks is at school and the doctors have pinpointed it to a mold sensitivity. Anyway, I've been on "homebound intruction" for almost a year now. I miss being a "normal" teenager so when there were soccer games and football games in the Fall I was always there. My "friends" would say stuff like, "You look fine so why aren't you in school?" I even had a teacher tell my whole class that I "freak out" in our school building because it has "cooties" ! "

Don't"One day during my treatments for lymphoma, I was out shopping, and I noticed that some adults were staring at me. They didn't say anything, or ask any questions, just stared. I figured that I'd give them something to really  stare at, so as I walked past, I tipped my wig at them, and said 'good afternoon'. I kept walking, but I figure that they all must have fainted. I got them big time!"

Don't"This kid in school asked me once if I was born in a wheelchair. I told him, 'of course not, you idiot, that would have been much too painful for my mother!'"

Don't"I have these bumps on my skin and my eyes are a little bit yellow from this medical condition I have and it is amazing how many kids are not allowed to play with me because their parents assume I'm contagious. I am not, so it drives me nuts!" 

Don't"I was recently diagnosed with Celiac Disease, which means I have to remain for life on a "gluten-free" diet. I can't even eat a crumb of wheat, oats, rye, barley and many other processed foods without getting very, very ill. I lost a lot of weight before I was diagnosed, and people started being mean to me, telling me that I was faking being sick, it was just in "my head" , and that I must be anorexic. Even now, if someone tries to give me a donut and I say no thank-you
or that I can't, they tell me, "Oh, its low in fat if that's what you're worried about!" I hate being judged like that. I never chose to be on this diet!" 

Don't"What do you think of this one? When I moved into a new village, I was learning about the school I'd be going to. and finding out that I would be able to use  a special, disabled toilet. Imagine my surprise when I saw that I would have to walk up three stairs to get to it. Even if I could have done that, I would have had to compete with brooms and cleaning materials. It was an all-purpose room, I guess!"

Don't"I was on my lunch break and went to eat at this restaurant.  I was asked if I wanted smoking or non-smoking.  I told them I wanted non-smoking, but the wait was going to be about 30 minutes.  I asked if it would take less time for smoking.  She said, "It's available now.  Can you go up steps?"  I gave her a crazy look and rolled my wheelchair out the door.  I mean, why even offer if it is upstairs?"

Don't"Hey, do you want to hear something stupid? I've got epilepsy and once ...this... girl was nagging me on why I always sat in the back of the room when we watch an education video at school and why I often wear a hat. I told her how sitting too close to bright colours and lots of noise can set off a fit and that my hat blocks out noise. She immediately said "You haven't had a fit before, though!" "Yes I have!" I said. "No," she said superiorly, "If you've had a fit, you'd be dead!" When I told her that some people have loads of fits in a day, she told me that I was stupid! As if she knows more about my illness than I do!"


Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY 
Bronx, New York 10468  06824

Last updated: May 11, 2006

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