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More Than A Wheelchair, Braces, Or Crutches (By Johnny, aged 11--A Rant) by Karen Lynn Vidra, The Texas Tornado
Tuesday, March 9, 2004
Rated "G" by the Author.
A young boy tries to live a happy life despite having a catastrophic illness that threatens to take his life by the time he reaches adolescence. He is tired of how people have been treating him recently, and he wanted to let his feelings out, that he is not what people THINK he is.
*A note to the reader: while I am TRYING to focus less on the disability and more on the character (i.e.: recent stories featuring Ronee' Le-Anne Reaux, Johnny's sister, or Heather Lindsay McCabe), in Johnny's case this has proven to be very difficult, as he is living with a catastrophic illness that is getting worse over time. Please bear with me.
People do not understand that I am a very happy boy. They see me sitting there in my wheelchair, or they see me walking on my leg braces or crutches; and right away they automatically think that I am sad.
Well, I MAY get sad SOME times, but I do NOT STAY sad. I have my moments where I am VERY happy, and I have my moments where I happen to think that life is VERY good for me.
This is Johnny. I am 11 years old, and as you know by now, I have Duchenne's muscular dystrophy. I was told I had MD when I was a year old, just about the time I was learning to walk, and as the years have gone by, it's gotten worse. I got my first pair of crutches and my first wheelchair when I was three, and every year since then, I have gotten weaker. I still can do things for myself at the age of 11, but things are getting harder and harder, and I have to have a lot of help. For instance, I have trouble turning over when I am in bed, and I have to have my mom or one of my older brothers come turn me over, or else I may get bedsores if I am not careful. Or, as another example, I need to be taken to the bathroom because sometimes I am so weak I can't make it to the bathroom on my own, and then when I do, it is too late: I end up having an accident on the floor or in my pants, and it is not a very fun time. If anything, it is very embarrassing.
I also need help with doing things like brushing my hair or my teeth, and I also need help in getting my shoes tied, my socks on, or my pants on, and I also have started to have problems with my breathing. It doesn't take all that much before I am out of breath from all the strain in trying to do things for myself, and now I have to use oxygen a lot of the time. It is really getting to be a pain! And if THAT doesn't beat all, I also have started to have problems with my heart, and I have already ended up in the hospital once because of it.
I get mad at God sometimes because I have to live with this thing each and every day, but then I realize that I have lived a lot longer than what doctors thought I would. At first, they were telling my mommy and daddy that I would not live to the age of five; and now here I am, going on to the age of 11! So I fooled THEM, hunh?? But still, I AM dying, and at times I get mad and frustrated because I am only a kid, and I am NOT ready to tell my family or my friends goodbye just yet! I have an awful lot of living to do, and as much as I would LOVE to go to Heaven and see Jesus face to Face, I still would like to get a LITTLE older, or at least until I can get a girlfriend and go on a date or to a prom, or learn to drive a car (My "Dream Car" would be a HUMMER!), or get married and have a couple of kids. But I am not expected to live to do any of these things, and it really makes me mad. It's like I was gypped or something, and I don't think it is fair that I am dying while other kids get to grow up and do many exciting things!
I get mad at people when they think that they can feel sorry for me or pity me. I may be in a wheelchair or use braces or crutches from time to time, but I am NOT to be pitied, and I am NOT to be stared at! I am just like any other kid, but I have a disability that is NOT my fault, and I don't like it when people treat me like a baby that can't do anything for themself! I am just like you in a LOT of ways: I laugh, I cry, I FEEL emotions, and I can do anything I set my mind to--it just may take me a little longer is all! But in time, I WILL do anything I set my mind to!! All I ask is for people to treat me like THEY would want to be treated and NOT make my life harder for me than what it already is!
All it takes is a little common sense and a little ingennuity on their part. I don't ask for much; but if I NEED help, I will SAY so. DON'T assume that just because I am in a chair or wear braces or use crutches that I am HELPLESS because I am here to tell you that I am NOT! I am CAPABLE of taking care of myself the BEST way I can, and if I need help, I will say so! But DON'T help me UNTIL I say so first!!
And just because I am in a wheelchair or use crutches DOESN'T make me STUPID! I MAY have learning disabilities, but I am NOT stupid, and I AM capable of learning! Just ask my mommy or daddy or ask to see my last report card! I happen to be quite smart in my own way, and I am getting help for my learning disabilities, and I am doing MUCH better in school! How DARE you call me a "retard" when I got A'S and B's on my last report card! If THAT isn't any indication of how well I am doing in school, then I don't know WHAT is!!
I am trying like heck NOT to cry as I write this, but I am sick and tired of how badly people treat me at times! I did NOT ask to be disabled; it just happened, and there is NOTHING you can do about it! Sure, there ARE days where I wish I could walk or run around or do more things for myself, but right now, I am grateful just to be alive, and every day that I live is a Blessing from God for me. He is the One who let me live THIS long, and as long as I have breath in my body and ability in my body, then I am going to do ALL I CAN while I am able, and NOBODY is gonna' stop me! EVER!~ GOD is the Reason why I am here, and He also sent His Son to save ME from Sin, and because of that, I am going to Heaven! I WILL be Healed of all this stuff that I am going through now here on Earth, but if I am NOT Healed here on Earth, I WILL be in Heaven, and that will be oh, so COOL! I will then be able to RUN, JUMP, and PLAY, just like any other kid, and all this JUNK that I have now will be NO more! But UNTIL that happens, I will have to put up with all the junk I now have in my life and try to make the best of it!
Thank you for allowing me to get all this stuff out of my insides. I have been really mad lately because of how people have treated me, and I am SICK of it! My life is hard enough as it is already; WHY only ADD to my frustrations?? Then people wonder why I have been so GROUCHY lately! Go figure...
~Written by Johnny Sandusky, aged 11, on Tuesday, March 9, 2004, at 4:19 p.m., C.S.T.
i guess it is hard to focus on something other than the disability if it is taking your life. however, johnny is more than the accoutrements of disability (wheelchair, braces, crutches, what have you), as your title suggests.
this is a very written story, however. you take us into your character's mind and let us feel their anger, hurt, frustrations very effectively.
maybe you could write more about his hopes, likes, dislikes, favorite memories, dreams..."if i could, i would" and why...??? just a few thoughts?
(((HUGS))) and love, karla. :)
keep writing, keep educating and encouraging--you are meant to write for this very purpose!
I have written a chapter called I Am That, I Am in this inspirational compilation book by best-selling authors and wonderful people from all walks of life xox :-D (Its sister book is called Adventures In Manifesting - Success and Spirituality)
Note: Since my husband's cancer surgery 4/25/05, this book content has been integrated into the public speaking content for audiences interested in a sassy approach to personal and/or community awareness events. Another chapbook on intimate love poet
People do not understand that I am a very happy boy. They see me sitting there in my wheelchair, or they see me walking on my leg braces or crutches; and right away they automatically think that I am sad.
