Johnny, aged 12, writes about his innermost feelings concerning the challenges that his disabilities bring to him; this was an essay he did prior to school letting out for Easter Break. He shares this essay in his journal.
Saturday, March 19, 2005, 10:25 a.m., C.S.T.~
****WHAT IT IS LIKE BEING DISABLED****
Do you know what it is like to be disabled? Do you know about the fear, humiliation, and uncertainty that I face every single day of my life? Well, in case you haven't noticed by now, my disability rules just about every aspect of my lilfe, and there is really nothing anyone can do about it. Even I can't do anything about it, and that really bothers me.
This might come as a shock to you, but I hate my disabilities: learning, emotional, physical, you name it...I absolutely hate everything about it. I hate my wheelchair, I hate my leg braces, I hate my stupid crutches, I hate my thick, Coke-bottle-lensed glasses, I hate my hearing-aids, I hate having to wear oxygen every single day so I can breathe easier, and I hate my learning problems. Do you know how embarrassing it is not to be able to read as well as the other kids in the class, and do you know how humiliating it is to be in front of the class, hemming and hawing as you struggle to read the jumpy words on the piece of paper you are holding in your hot, sweaty hands, and seeing/hearing the other kids pointing accusing fingers at you or laughing at you? Do you know how hard it is to struggle to make B's and C's in your school subjects while your genius sister practically sails right through her classes without hardly having to crack a book? And every one is bragging about her while I get dumped on! Do you know how bad that makes me feel?
Well, folks, this is what I face, each and every day of my life, and my life is a living nightmare at times. It's no wonder I have so many emotional problems at the age of 12!
At twelve, I shouldn't be worrying about whether I am going to have a good day--whether my body is going to betray me yet again, worrying about how long I have left on this planet.., or worrying about having people helping me with my personal things. I also shouldn't be worrying about whether I am going to seize out or end up in the back of a screaming ambulance while I fight and gasp for every breath. I should be worrying about like what I am going to be when I reach adulthood, what kind of car I would like to own (personally, I would love to have a HUMMER!), where I am going to go to college upon graduating from high school, or even think about girls (hey, I AM almost a teenager, you know!). I shouldn't have to even think about death or dying or whether I am going to reach my twenties--but such as it is when you live with a disease like muscular dystrophy, in which I do.
I have had to live with this monster called MD ever since I can remember, and while at first it was exciting whenever I got a new wheelchair, shiny new leg braces, or shiny new crutches, the novelty of it all soon wore off by the time I reached the age of seven/eight years of age, and I began to question my mommy and daddy about why my brothers and sisters didn't need these things when I did. I began to see that my disease made other people uncomfortable whenever they were around me, and I soon began to see my disease as a burden, and I grew to be a very sad little boy. All of a sudden, all those visits to doctors, the endless parade of therapy sessions, those unexpected hospitalizations, and each new wheelchair I got began to make sense, and what I figured out at the age of seven/eight did not seem at all nice. My disease was bad, and the outlook for a kid with a problem like mine didn't look good. Even at this young age, I knew that unless a cure was found for my muscular dystrophy, I was staring right at an empty grave--a grave that had my name written on the tombstone.
It was all very depressing. At times it still is.
Yet, even with all my struggles, I have had many good things happen to me. For starters, I have lived for far longer than doctors first thought I would: originally, according to my mom and dad, I wasn't supposed to live beyond the age of five years. That was seven years ago: I an now twelve years old. Secondly, I have a future: when I die, I will be looking at the Face of my Lord and Saviour, Jesus Christ. Thirdly, I will be healed of all my problems upon getting to Heaven: I will no longer need all of these things I now use here on Earth. I will be able to walk, run, and even jump, I will no longer need to use a wheelchair, crutches, or wear heavy steel braces on my legs, and I will be able to breathe easier than I have been able to in a very long time, and I will no longer have to wear oxygen prongs up my nose. I will also be able to see clearly and hear the tiniest sound when I get to Heaven. I will also be smarter than anyone else other than God; only He will be smarter than me..a whole LOT smarter, as He knows EVERYTHING.
I have had the opportunity to meet many famous people in person and travel this great country called America, and I have seen and done more than most kids my age. I have had the opportunity to teach others about muscular dystrophy and other neuromuscular diseases, and I have had the chance to sing and show off my skills as a musician, on stage (this is getting harder, so unfortunately, I don't do much of this anymore, which is a pity, because I love to perform or be on stage!). I also have held a live little baby cheetah in my lap, gone to the "secret, hidden places" like the captain's room on a cruise ship, the cockpit of an airplane, seen the scenes behind a movie or television show, and have been on different tv talk shows, talking about my life with MD.
So, no matter how bad things may be for me at times, I still have had a very happy and rewarding life, and I should learn to be grateful for all the good things that have happened to me while I am still around to be able to enjoy them.
~Written by Johnny Irwin-Allen Denver-Sandusky, aged 12, for English class.
It's hard living with a disability, as you and I both know. But the thing is, it could be so much worse, and every day that we're alive is a miracle, indeed. The doctors gave up on us, but God didn't. Every day that we wake up breathing and above ground should be reason to give grateful thanks and to celebrate life! We might have to walk with assistance, but at least we can walk, talk, think...again, it could be worse. :)
Very impressive. From the first sentence to the last. It's a very touching and courageous account of life with MD and much more than just that.
Love and blessings
Mahdi
Another great write... we can learn so much from children. We are all disable in some way, the healing begins when we recognize it, instead of trying to hide it...
Saturday, March 19, 2005, 10:25 a.m., C.S.T.~
