Link to My Essay Published in FSH Watch Newsletter

This essay is the first essay I have ever written that talks about my FSHD. I wrote this my Junior year of high school for my memoirs class. Before sharing this essay with my entire class, I had never told anyone about it, except for my close friends and my family. My grandfather sent my essay to the FSH society and they decided to put it in the newsletter, so here it is!

 

http://www.fshsociety.org/assets/pdf/FSHSociety_FSHWatch_Fall2011.pdf

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2 thoughts on “Link to My Essay Published in FSH Watch Newsletter

  1. Hey! My name is chandler young. Im 17 years old and was diagnosed with Fshd about a year ago. Though I was only recently diagnosed, fsh has effected my life since birth. I have never smiled for a picture. For some reason, my facial muscles were quite literally never there since birth. My upper lip has never moved. And for some reason they have never really gotten weaker so my face looks normal until I go to talk etc. My shoulders and upper arms became effected very early, I have never did a pushup or a pull up. My upper legs and hips became effected in middle school but not too harshly. In my freshman year I could still run,i could curl 10lbs on each arm! I did gymnastics and football in middle school. I am now pretty much a senior. I can’t run anymore. The effort it once took to curl 10 lbs, is now the effort it takes to curl 3 lbs. I can’t even squat anymore. It seems my muscles literally dissapered within 3 years. My upper arms and legs are literally nonexistent. I can wrap my fingers completely around my arm and my upper legs are tiny. My forearms and calves have never been effected and are larger than normal, and that makes my differences more noticeable because they are 2x the size of my upper arms and legs. It is, in a way good because my forearms and calves are my strength, im not as weak as one would think because of that. Especially being a guy with no bulging muscles, it has effected my self esteem. I don’t expose my upper arms anymore because of the looks people give, self esteem etc. Im only 17 and I live on my own with no help from mom or dad. I have to work 40 hours a week, 5 days a week just to pay bills and keep myself in a house. It is hard a lot but I find strength in god. As you said, I think for myself as well, that I was given this disease to teach others. I have 5 sisters and none of them have it or show any signs of weakness. That makes it harder because they don’t/ can’t try to understand how this effects me. I ave realized that unless people literally lived in our shoes for a day, they simply couldn’t understand how difficult this disease is. I wear baggy clothing and try to conceal my upper arms and legs as much as possible, which, makes me look almost normal. The fact that people can’t really tell sometimes leads them to think I can do more than I actually can. Especially in my workplace, people imply that im lazy a lot because I look like a normal, average looking teen. Even simple tasks like carrying my lunch tray have now became difficult. A few moths ago I was walking with my sisters (shortly before I was diagnosed) I fell on the sidewalk. My sister turned around and said “chandler, get up. What are you doing?” All I could say was “I can’t anymore Tate. Theres something wrong with my body. I tried to talk with my family about it and they dismissed it and said that maybe I was lazy or skinny, and that’d id grow out of it. But I knew something wasn’t right so I said “fuck you guys” and went to the doctor. Thats when I was diagnosed. I was numb at first and for a few months just did tons of research and educated myself on literally everything I could. Then one day it hit me. All at once, I just started crying. I am exactly like you in the fact that ill fall and simply cry solely because im frusturated. My life has changed in the past year. Surprisingly, even though this disease never leaves my mind, im happier now than I’ve ever been. Just wanted to let you know that I have some of the same opinions and thoughts on this disease. Email me sometime!
    819907@averyschools.net

    • Hi Chandler! Thats an inspiring story thanks for sharing! I know what you mean when you just broke down all at once, that happened to me a few years after being diagnosed. Having something like this though, can really make you a better person. I appreciate all the little things in life and I’m sure you do too. I hope your family begins to understand better, because its good to have support from family. Best of luck to you!!

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