This is Johnny Sandusky again. I am going to write about what it is like being ME.
Being like me is no piece of chocolate cake. It is not fun at times. See, I happen to have a lot of health problems. I am in a wheelchair, and I don't walk that well. when I DO walk I have to use crutches. I also have to wear heavy braces on my legs, and I get tired quickly as a result. It is a pain trying to drag my legs because the braces are so heavy! I am in a wheelchair because I have Duchenne's muscular dystrophy, which means my muscles are getting weaker and weaker. I used to walk with just the crutches, but my legs are getting weaker, which is why I now have to use a wheelchair. I also have problems with my hearing (I have to wear hearing-aids; without them I am deaf), and with my eyes (I am legally blind; I have to wear these really thick glasses, and in order for me to read something I have to get really close to the computer screen or tv or to the book I am reading); it's because I got sick with meningitis when I was a baby. I also have a stutter to my speech. I also have epilepsy and have seizures, and I also have breathing problems and have to wear oxygen tubes in my nose (especially at night). My lungs just aren't that strong anymore.
I am not a bad-looking kid (people say I look kinda' like actor Johnathan Lipnicki--you know the kid in "Stuart Little"?); I am a rather cute kid, especially to the girls in my class. Plus my mommy says I am cute!! I have light-blonde hair that I wear all spiky and brushed back from my face, big, bright-blue eyes, and a small face that tends to burn in the sun. I have never been able to get a tan; instead I just end up looking like a boiled crawfish in a wheelchair!! I also have dimples when I smile, and the girls are always pinching my cheeks. (I wish they would QUIT that!!!) But because I am in a wheelchair and wear braces on my legs people really don't say how cute I am, not like they do Ronee', my sister. They see Ronee', and it's like: "Oh, how ADORABLE she is!!", and I am right there, and they don't even speak to me. It's like I am invisible or something, and it really makes me mad. I would love for them to say that to me, too, not just to Ronee'!!! I get hurt because it's like they don't want to make the time to just say hi to me and know that I am a person too, but a person who happens to be in a wheelchair.
It's like my wheelchair is more important than ME.
I HATE that. It's like they think my wheelchair is what makes me, but it isn't that AT all. I am a person, and I am a person who has feelings! I am a person just like anyone else, and I have likes and dislikes, too, just like they do!!! I just have some disabilities is all, but even WITH them I can do a LOT of neat things!! Like, I can burp "The Star Spangled Banner" (not that you may be interested, but this is a special talent of mine!!), I can sing and play the piano, fiddle, and Cajun accordion (and have even sung on the Grand Ole Opry!!!), I can play baseball and am on a team for disabled kids, and I am a whiz when it comes to video games!! I also can run a computer, and I am good at doing impressions of famous people. (I can do Michael Jackson pretty good, but I like doing George Jones the best!! I can imitate him.) I also can draw pretty good, and I can pet cheetahs and get them to purr!!! (Not many people can say they have done THAT!!) I have also met a lot of famous Hollywood and country stars, and I have had my picture made with them, too!!
I may be a kid in a wheelchair, but I am a kid who has done a LOT of things, and I am a kid who can sing and do sports!! I am more like you than you may think!!!!
I also hate it when people talk to Ronee' and not to me. I think it has something to do with her being a professional singer in country music, but people see her, and they want her autograph. And here I am, a singer, too, and people ignore me. Don't you think that doesn't hurt? Well, it DOES hurt, and I HATE not being noticed!!!! I must be as ugly as sin if people don't take the time to talk to me....I wish I were cuter. I wish Ronee' wasn't so cute...
Now, I love my sister, but I get jealous because she's had a lot of great stuff happen to her. I have had stuff happen to me, too, but I don't have a CD out, and she does, and she has played at more places than I have; and she's been singing a lot longer than I have, too. I am glad she is doing well in her career, but I wish I could be somewhat successful, too!! I kind of would like to have a record out or have people ask ME for an autograph or a picture!! I think that would be neat to be asked for an autograph!
I also wish I didn't have this darned old muscular dystrophy. My disease is fatal, and because of it I will never be a teenager (if I make it to 13 I will be VERY lucky). I will never know what it is like to grow up or get a license to drive, get a date or my own car, or get married and have a family. I will never get to do these things. I wish the people could hurry up and find a cure so I CAN grow up! I don't want to die so soon!! I hate the thought of having to die in a few short years; there is so much I would love to do--like, for instance, go to Africa!!! (I would love to see the cheetahs in their homeland, and I would love to see the Maasai people!!!) I would also love to go to Germany because that was where I was born, and I would love to see that part of the world! I would also love to go bungie-jumping, and I would love to ride in a hot air balloon. That would be SO COOL!!!!
Being me isn't easy, as you can see; but it is my life, and this is how it happens to be for me. It isn't the best of a life, but I have it better than a lot of people; and I have to keep remembering that. At least I am ALIVE (for the time being), and at least I can see and hear (with help, but I can still do it!!) and talk; and at least I can still get around (although it IS by wheelchair or by crutches), and have someone like my dog, "Ginger", to help me whenever I need it. ("Ginger" is my "canine companion", and she acts as my arms and legs. She is really super, and she has saved me a lot of problems!!!)
I may have my problems, but there are people who have it A LOT WORSE than me!!!! I am blessed to be who I am, and I am a very lucky kid!!!!
