Acclerated English 11
August 31, 2001
All About Me
I’m not anyone special, or anyone famous, but I am me, and that surely counts for something! I was born in Vail, Colorado to the proud parents Brenda Hutchinson Griffith and Joseph Donald Griffith. My parents owned a retail store in Vail called Cabbages and Kings (It’s still there). My dad wasn’t happy there because he missed his family. My mom, dad, and I moved to Pennsylvania when I was about three. My mom is still mad at my dad for moving back to Johnstown, but she has learned to deal with it.
Running, jumping, playing sports, dancing are all hobbies that little girls participate in. I did all those things when I was younger. I thought it was normal and I surely took it for granted, but I think everyone that has the ability to run and jump just thinks they’ll always be lucky enough to have that gift. I certainly was mistaken!
My friend Sarah and I were outside kicking the soccer ball in the rain. I accidentally kicked the ball underneath the car. I’ve always been a ditz, but this was the starting point of a life-long struggle. I ran over and slipped on the little stones on the pavement. My ankles were always weak, but my dad had the same problem. I always just thought the weakness was inherited from my dad. Later that evening my foot swelled up like a balloon being filled with helium. I’m a very dramatic person, so of course I thought I broke it or maybe even did something worse. I made my parents get it x-rayed. It was just sprained luckily! I did the normal routine and stayed off of it for ten days and used crutches. Probably one of the worst things I ever did for myself! Inside I knew something was not right because I couldn’t run as fast and my mom kept telling me I was walking strangely. I lied to my mom and told her I had severe pain in my ankle so she would take me back to the doctor. Dr. *** told me two different times that it was inflammation from my sprain. That was certainly a joke! I was always a skier. I was on skis as soon as I could walk. It was my favourite thing to do. I would try and go at least once a week and everyday on the weekends. My friends (that are triplets) live in Somerset pretty close to all the ski resorts. Every weekend I would stay at their house and go skiing. The triplets are amazing skiers and I usually could keep up with them, but in seventh grade something was different! My legs started to shake when I’d attempt to ski. I was so confused. Skiing had always been so easy and seemed to come to me naturally. My mom never believed me because she always thought I was exaggerating. It wasn’t that she was being mean, but she just thought I overreacted. When I couldn’t ski that was a huge sign something was wrong. My mom immediately made an appointment for me in Pittsburgh. Personally those are the only doctors that know anything. The orthopaedic doctor, Dr. Conti, at the University of Pittsburgh Hospital had a hunch right away of what it may be. He told me it was more than likely Charcot Marie Tooth Disease. I thought to myself what in the world is that. Me, have a disease. I didn’t think that was possible. I felt like it was all a dream! Charcot Marie Tooth Disease is named after the three French scientists who founded it. It’s a degenerative nerve disease. Muscle atrophy occurs in the lower legs, forearms, and hands due to the myelin sheath unraveling. Sometimes in severe cases it can harm your voice, breathing, and move into your upper legs. They are different types of it. I have type two. It’s not as a severe as type one. I suppose I’m lucky for that, but I just wish it was a bad dream. Sometimes when I wake up in the mornings I get up and hope for it to be gone, but of course it’s still there. All my life there were beginning signs of the disease slowly taking its toll on me. My hands were skinny, small, hyper-extended, and they would lock up in the cold or if I was doing my hair. My feet had a high arch, were narrow, and my toes were kind of curled up (better known as hammer toes). I just always thought it was inherited from my dad because he had the same problems. My orthopaedic doctor sent me to a neurologist, Dr. Busis, in Shadyside. He usually didn’t treat children, but for me he made an exception. I remember that day like it was yesterday. It wasn’t positive up to that point that I really had something serious wrong. He examined me and my parents and noticed my dad had similar hand and foot features. Just another sign it was in fact Charcot Marie Tooth Disease. He began to ask my dad questions about his parents if they had foot or hand problems. My grandma was diagnosed with Carpal Tunnel and tendonitis in her ankles. I guess back then they were not familiar with this disease. It progresses at different rates and mine happened to progress at an early age. The doctor told me I had to come back and get an EMG to measure my how quickly my nerves relayed the messages. I’m not sure what that stands for, but to me it will always be one of the most painful procedures I’ve ever and probably will ever experience. They had an opening the next day. My mom was all for it because we just wanted it all figured out. My mom got me out of school early and we drove down to Pittsburgh. I still remember everything about that day. I even remember what I was wearing. I laid down on the table and the doctor warned me it was going to hurt. It was so painful! My mom held my hand, but I couldn’t’ keep from crying. It’s similar to being electrocuted. My dog had an electric collar and it would electrocute him every time he went over a certain boundary. I certainly felt like a dog at the time. It was over and my nerve readings showed Charcot Marie Tooth. It was confirmed. Foot orthodics were made for me and leg braces. Leg braces I thought to myself. It was definitely something I thought I would never have to wear. Tom Hanks in the movie Forest Gump had to wear leg braces. I just never thought I would actually have to. It was horrible. Pants are always the best to wear so my leg braces can be worn, but in the summer I just don’t wear them as often. They really help me walk a lot farther. They pick up my feet so I don’t get as fatigued. I’m embarrassed of them, but it’s something that I’ll have to deal with for the rest of my life. Also frequent tripping is common. The word ditz explains me, but now that it is progressing I fall a lot more often and I really am a ditz! Falling is horrible, embarrassing, and makes me worry about not being able to get up. I’m never gonna get used to it. This summer, my aunt, who lives in Colorado told me when I fell, "It’s one of many and there are many more to come." I thought to myself that’s so true. I’m gonna have to adjust to it because half of my life I will probably being falling and struggling to get up. It’s incredibly frustrating! People always tell me to be thankful I’m not dying of cancer or something like that, but it’s still extremely hard to deal with. Sometimes I suppose your dealt a hand and you have to deal with it whether its fare or not.
My friends are truly amazing! They always help me climb stairs, or walk on uneven ground, and anywhere else I might have problems. It’s funny because people can be so ignorant at times, more ignorant than I had ever imagined. I have a lot of guy friends from Windber Area High School. The girls in the senior class have despised me since I was in eighth grade because ***** liked me. They would find the tinniest thing wrong with me and rip me apart. My walking started to become more noticeable and they hurt me so badly. I’d cry and cry. One time at a football game ***** a cheerleader from Windber screamed gimp into the stands because she thought her boyfriend liked me. I was so hurt, amazed at her ignorance, and just didn’t know what to think. People heard and Casey Muir, Ang Felton, and everyone started screaming back at her. At halftime my friend Brittany told **** how it was. She told her, **** that’s the only thing you can find wrong with Marah then she must be pretty perfect. That made me feel so good to know that someone cared that much for me and would go out of her way to stick up for me. Day by day my friends are the ones that get me through it. If it wasn’t for them I really don’t know what I would do.
Sarah is my best friend and she is definitely the most helpful. She knows exactly where I might need help and is always there to catch me when I fall, lends me a shoulder when I need help, and any other obstacles I may have to face. She always understands me and never gets mad. I think those are some outstanding qualities and something every friend should have.
The road ahead is not going to be easy. I don’t know what’s going to happen. No one knows, I suppose it is in God’s hands. It’s scary to think that I could maybe in a wheelchair someday, how I will care for my kids, and all the other tasks of adulthood. I hope I can have children. I don’t want them to have my disease. Hopefully by the time I’m ready to have children there’ll be a gene treatment that can remove Charcot Marie Tooth. It’s far ahead and I’m not going to dwell on it. I’m gonna live each day to the fullest, try as hard as possible to remain positive, and keep my frustration level down.
Today I fell and my English teachers helped me, made me smile, and turned my frown upside-down. It was really neat to see that people really do care because sometimes the world can seem so cruel. Even my principal took time out of his day to cheer me up. It really made me feel good. I’ll always remember that. Some people are never lucky enough to feel the sense of being appreciated and loved. I really felt like I mattered today. Sometimes the bad can actually in some strange way turn into good. The road ahead is certainly not smooth. It’s full of bumps, hills, and potholes, but somehow I’ll make it through. I just have to keep my head up and be strong!