|MHE and Me||NICOLE'S STORY|
|Hi my name is Nicole
I am seventeen years old. I have been living with MHE for sixteen years now. I have had six operations and I have nine scars. I have had several complications due to these operations, but for now it seems that I have recovered from them.
OK enough about MHE. I think of myself as a perfectly abnormal teenager. Not because I have MHE but because I have unique traits that I don't think many of my peers have. First of all I still love teddy bears (they're so snuggly how could you not). Actually in school I am friends with the security guards and for the holidays they gave me teddy bears (thanks guys). Also my music taste is not very common. I call myself a broadway-folk-classic rock-movie soundtrack kinda gal. My favorite band is Simon & Garfunkel (I can't name a single current band, not one). I love to draw, I draw whenever I have the chance. I write too, I have a really twisted sense of humor. I like to write plays, and skits, sometimes poems.
MHE might have made me a slightly more abnormal teenager. I don't wear shorts and for some odd reasons I don't wear t-shirts. I usally wear jeans and a jacket (I think of it as a trade mark). I used to carry a bumpy blue cushion that everyone honestly thought was a waffle iron. Some people actually had the guts to ask why I was carrying a waffle iron, I would respond with something like "I have baseball sized tumors in my hips which cause alotta pain", some girls started laughing at the cushion and walked away (I couldn't do much there, well mental voo-doo). Now the reason I used the word "used" for my cushion is that one day in class I noticed that I was gradually shrinking (my cushion is inflatable by the way), it deflated. People actually noticed that I got shorter, they came up and asked me why I was slowly shrinking. I said I was melting then gave the proper response. When I had my first two operations I was out of school for pretty much all of 5th and 6th grade, crucial social blossoming years. I am the first to admit that I am not a very social person. I used to have several very good friends, but they like my cushion deflated (they abandoned me when times got rough). This year really I started making new good friends, and they are slightly unconventional, but friends are friends. Never the less in the cafeteria I am the only girl sitting alone (again thanks to the security guards for talking to me). I have been to two dances, the music was blasting with bass and I had to stay by the padded walls and dance alone or with the adults who were watching the dance (I make friends with adults in the school easier than kids). My grades are pretty good if I do say so myself (watch I'll start failing now). I am in National Honor Society (which requires me to stay in school for a WHOLE DAY) and am in high honor role. And for some odd reason I have yet to miss a day of high school. I joined the debate club (I just love yelling at people and again forces me to stay in school for the WHOLE DAY). I now take art class but I don't take gym. Actually recently I went back to math class for the first time since 5th grade (OK I had tutoring since 5th grade to replace math class because couldn't last a full day in school and I wasn't really good at math so I have been in tutoring for the past several years, only recently my tutor had to leave and the math got really hard so I had to go back to class). That is going well, I sit in the back with my scribe (who happens to be an old tutor of mine) and am doing pretty good.
I keep a folding cane with me just in case of an "MHE boo boo" if you will. I love the looks on my fellow classmates' faces when I walk down the halls with a cane (a mixure of "what on earth is that" and "weirdo"). I try to make the best out of that fairly bad scenerio (if they get in my way... my cane might slip by their leg HA HA HA HA HA HA HA HA HA HA).
I have no intention of letting MHE get me down. Based on my writing here it sounds like MHE has a major part in my life. OK it probably does but SO WHAT! I cannot and will not let MHE get me down. Sometimes I'll admit I feel like breaking down, but that would make MHE defiant. I am a stubborn little person, I refuse to let MHE be defiant.
I know that everything isn't gonna be easy and I am fully aware that MHE is not a piece o' cake. But when times are a little rough I like to think about inspirational quotes that help me. Mine are not made by religious icon or really famous good-deed-doer's (thats from Wizard of Oz, couldn't think of a better word for it), mine's a song quote. My favorite is Simon & Garfunkel's "Red Rubber Ball"
"And I think it's gonna be alright, yeah the worst is over, now the morning sun is shinning like a red rubber ball"
Rise and fly everyone
I would like to thank the following people for making my life seemingly easier and or better... Jodie for giving me the idea for thanking people, my family (Mom, Dad, Andrea, Grandparents, aunts, uncles, cousins, etc), my friends (Kendra, Kara, Esther, Sadie, Sheera, Sheila, Jessica, Heidi, everyone), all the security guards (especially Christine), all the ladies in the library, my tutors, my doctor, my MHE FAMILY, thanks everyone!
Story of Anonymous - A poem I wrote for English class last year, about what it's like to live with MHE
|Nicole's previous story...
Hi. I'm Nicole. I am now fourteen years old. I like teddy bears (I'm not kidding). I also like The Simpsons. I am in the 8th grade and have managed to get high honor roll. I also have MHE. So far I have had five operations and have eight scars (they really gross my dad out). I can't go to school full time. I make six out of nine periods. When I get home I often plop down and take a nap. I don't take gym, tech, home economics, art, music, or any type of after school sport. I can't do drama club in my school, but I can do sound effects for my little sister's school. I made this really freaky, creaky sound. During school I carry around this blue bumpy seat cushion (because I have big tumors in my hips). Some people think it is a funky briefcase! Others who sit in back of me while I sit on it tell me to "move my head" because it adds two or more inches in height (my hair might add more). I don't use my cushion in those classes. I also have a rolling backpack. I think it really helps with carrying my stuff around but people do have a tendency to trip over it. When they do, it twists my arm around, it hurts! On occasion people do ask me why I have these things and most of them acted calm and normal, and others were rather funny, "Oh my god, I am sooooo sorry" or "Can you play baseball?" I can't go to any school dances simply because there is loud music and it really hurts. I have never been to a single dance. Maybe one day I will. My favorite thing I've done all year was reading the play "The Diary of Anne Frank" in class. I did the voice of Anne, and that was a really big honor for me.
Enough about school. In my spare time (which I have alot of) I play with my sister. I make really pretty paper dolls, and I draw. I like to listen to movie soundtracks. I'm not into rap, or hip hop, or lip syncing pop stars. My favorite soundtrack is "Tarzan". All the music was done by Phil Collins. I also read the books that we are forced to read in school (so far near every character in the book I am reading is dead or dying). I like to play on the computer. My computer only can play two programs, so my choices are really small. One is a house building program. The other is a drawing one.
In movies sometimes you see someone that lifts everyone's spirits and is a true hero. Before I was 10 I wished I could be like that too. After I had my first surgery I had RSD and other nerve problems in my leg. That was the most painful thing in my life. After that came surgery #2. That one tried to correct the complications. That wasn't fun either. It took me several months to start walking again. I had to take physical therapy. That also hurt. In return I got to "hurt" one of the therapists back! The day before Thanksgiving during physical therapy I was so tired of using a walker I decided to just try to walk and I DID. I think all the therapists were crying (my mom was, too). I had become somewhat of an inspiration. Then in the summer I had a three by four inch tumor removed from the back of my leg. I was walking within days, my speediest recovery ever. Then during the following summer I had to get the staples that were put in my leg during the first surgery taken out. I didn't like that. It took me a few weeks to start walking after that one. Then in the middle of the school year last year I had to get staples put in my other leg and ankle. That was rather painful. I was walking in two weeks and went back to school around a month later. So far that is all the surgeries I have had and I hope I don't need anymore. My mom calls me a hero because in spite of everythingI almost always kept a smile on my face. Also last year my teachers nominated me for an award, The Spirit of Success Award, and I was one of the winners! I was so excited. I was so glad that someone actually recognized me for an award. I had never won an award in my life. I don't have any trophies displayed on my shelves. I got four certificates and a $25 gift card to Wal-Mart, and a tee shirt that said "Health Day" on it (I still don't know why I got that). The award ceremony was very nice. My dad loved the meal.
At the end of the year my grade had an award ceremony. It was long and boring, but I got two certificates (for honor roll and for special effort) and a medal. I had also never gotten a medal before. I told you I am not involved in award-winning activities. This year I am nominated for the Spirit of Success award again! I really hope I get it.
Poem by my sister, Andrea
My Art Work
|"Multiple Hereditary Exostoses by Nicole - 7th Grade Science paper|
|You can read Nicole's story on the
Band-Aides & Blackboards site (This story was written
by Nicole shortly before her first surgery...)