Page updated April 15, 2006
| It can be scary when you stand out for all the wrong reasons. I have MHE and that does make me different. But MHE is only a very small part of me.
I am sixteen years old and am in 11th grade. I have two sisters-Jessica (18) and Marissa (4), but both of them are completely healthy. I've grown up around people with MHE. My Grandma, who passed away two years ago, my mom, and two of my aunts have the disease. So I've known what to expect for my whole life, especially after hearing stories of what it was like to live with MHE when my mom was a child. But I am so far the last one in my family to have the disease. Only a couple of years ago, I first looked up this website and learned of other kids like me. That's when I read Jessica's story and realized that there was someone the same age as me with even similar interests and hobbies. It's great to have someone to talk to who can currently relate to what I am going through. And over that past few years I've been able to write to several other people from around the world as well.
I'm not sure how many times I have gone to the hospital to have surgery, but I have eighteen scars from them. Sometimes I have a few tumors taken out at the same time. Whenever I have surgery on my legs (I have had the most tumors taken out from my knees), I have to use a wheelchair to get around at school Once I even had to use a walker on stage for a choir concert! I wrote an article about it that was published two years ago in Guideposts for Teens magazine. My high school is very big and very crowded, so it feels quite awkward when I can't get around easy. One of my pet peeves is awkwardness but I'm learning to deal with it.
Like I said, MHE makes me different. But I really don't want to be just like everyone else. So many things make up who I am. I get decent grades in school (A's, B's, and the occasional C) and enjoy most of my classes. My favorite subject in school is English because I love to read. I want to be a writer when I grow up; I even write stories in my spare time. I write stories about what I am currently interested in like medieval history or mythology. I am an avid Harry Potter fan; I love checking out all of the websites and reading other people's predictions. I'm one of the people who stayed at the bookstore till one in the morning waiting for the fifth book to come out. JK Rowling is my favorite writer, along with Gail Carson Levine, the author of Ella Enchanted and Jenny Nimmo, the author of the Charlie Bone series. I'm not very athletic, but I do have many hobbies. I enjoy reading, writing, collecting, archery (my grandpa taught me two years ago), all kinds of art, playing with my pets, photography (I even got runner-up in a photo contest in CosmoGirl! Magazine), and I am willing to try most new things. If I can't learn something at school, I teach it to myself. I've taught myself how to play the recorder, write in Ancient Egyptian hieroglyphs, braid strings in different ways, and even researched interesting facts on the Renaissance and Middle Ages. That way I always have something to take pride in. I also have many pets (Teddy: a German Shepherd-Chow-Retriever Mix; five cats: Katrina, Britty, Cleo, Miesha, and Holly; a parakeet named Hedwig, a lot of fish: too many to name; and a large turtle: Lacey.).
I try to keep a good attitude towards life, but that's not always easy. Living with chronic pain and fatique can become very tiresome. I often feel insecure with all the scars and feel awkward talking to people about it. The people at school whom I have known for many years know what's wrong with me, but since starting high school, more people have to ask. Especially when I show up to school in a wheelchair. Then I have to explain a lot. Also, I miss school quite often so it's a lot of tedious work to get caught up. So I often feel overwhelmed, but I know that I have a lot to get me through: a few great friends, a strong attitude and faith, an understanding family, and a whole lot of people who can relate to what I am going through.
I just want people to know that there will always be somebody who understands and cares. If you ever need someone to talk to, just send me an email at firstname.lastname@example.org .
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Page updated December 1, 2006