A young boy in a wheelchair writes down his most private feelings. This is something that his teacher suggested, that he keep a journal to write out his feelings, since he has trouble expressing them aloud.
Journal Entry, #1, Wednesday, September 29, 2004~
Dear Journal:
Hi! My name is Johnny Sandusky, and I am 11 1/2 years old. I have to write in here because my teacher says I hide my feelings, and I have trouble expressing myself, so maybe this will be a good way to help me.
I must let you know one thing off the bat: I am a boy, and I happen to be physically disabled. I am in a wheelchair most of the time. I can't walk but very little (and then it's on crutches) because I have a disability that has affected my muscles and causes them to become weak. I have what is called muscular dystrophy, and it is something that I have had to live with for just about my entire life. Some days I do pretty good, but other days I am so weak it is like my body is a sack of wet rags, and it is hard for me to do even the simplest things. On these days, I don't walk too well; and I get tired so easily!
I also have seizures because I have epilepsy. I also have problems with my hearing (I wear hearing aids in both my ears; without them, I am almost completely deaf) and my eyesight (I wear extra-thick glasses, and when I read or watch tv I have to sit really close, so I can see the words in my book or see the action on the tv screen). I had meningitis when I was little, just a baby, and it damaged me. I also had meningitis when I was six, but the second time wasn't as bad as the first time I had it.
It isn't easy being the way I am because people just don't UNDERSTAND. They don't know what it is like not to have two good working legs or walk without crutches; and they don't know of how hard it is for me to try to feed myself, brush my hair, or my teeth, or get dressed. Each little thing I try to do is a struggle, and it often wears me out. I am starting to have problems with my breathing, and I often have to wear oxygen because I am so short of breath a lot of the time. I have to be very careful when I am outside or in public because I can get any little germ that comes along, and if I get sick, I often end up in the hospital, where I am for weeks at a time. Any little germ, if it is bad enough, could possibly kill me since my lungs and heart aren't that strong (let alone, my BODY!). I need help with just about everything, and if I drop something, I have my dog help me; she is my arms and legs, and she does a lot for me, among them, notifying my parents if I am having a seizure, getting stuff that I dropped on to the floor, and helping me if I lose my balance on my crutches.
My disease is terminal, meaning that I am dying. But I have lived longer than doctors thought I would: they thought I wouldn't live to the age of five. I am going to be 12 in December, on the day after Christmas. But they still say I won't live beyond the age of 13 or 14 at the most, so I want to make what is left of my life really special. I think it is because of my disease being terminal that I have gotten to do some pretty exciting things. I have met many celebrities, I have gone on a few storm chases (I am a severe weather junkie! LOL), I have petted a cheetah, and I have been on national tv and met the (current) president of the United States. That is all in good, and I have enjoyed all my experiences very much, but I wish I were healthy, and I wish that people wouldn't feel sorry for me every time they see me. I may be a kid, and I may be dying, but I am a lot more than my disease, and that is NOT the ONLY thing about me! I have feelings, too, and I hate it whenever people feel sorry for me or cry whenever they see me! I don't want their pity; I just want to be accepted as a normal kid and live life as I would want!
I used to get teased really bad in school, and I used to not have many friends because of my being in a chair, and people used to think that I used my chair as a way to get attention; but that wasn't true at all! I also used to have a lot of problems with my learning, and at times learning is STILL hard for me; but I am glad to say that I am doing a lot better, and my grades (and attitude) have improved greatly. Where I was once getting C's, D's, and F's, I am not getting A's and B's, and school is so much easier for me! I got after school help (Sylvan), and I still go there several times a week if I have a problem or if I want to learn of more exciting or interesting ways to help me learn more effectively. I also have a best friend at school (Jose' Varquez), and he is really cool. (I will tell you more about Jose' next time.) I used to really hate school, but now I love it! (It's just too bad I can't spend more time there; I miss a lot of it because of my sickness, which is a pain because I am always having to make up my homework! GRRRR!)
I live with my family in a BIIIIIGGGG house in Nashville, Tennessee, and I have lived with them since I was a few months old, just a baby. You see, I am adopted. I was adopted when I was a baby. I was born in Germany, but now I live in America. I have an older brother in real life, but he lives with another family in New York. His name is Erich, and he is 17. He is healthy; he doesn't have the disease I have (LUCKY!). My mom had the MD gene in her; but it skipped Erich, and it went directly to me. (I was the lucky stiff who got it. DARN!!!) She didn't know she had the MD gene in her body, but I did. I figured it out myself when I did some research on the computer. (After all, WHY would I have this stuff if she DIDN'T have the MD gene?? And WHY did it skip my older brother and go on to ME?? NOT fair, NOT fair!!) I miss Erich; and I see him only once or twice a year if I am lucky. I didn't see him yet this year, but he may come in November to see me. I hope so because I really miss him! (Erich looks a lot like me 'cepting he is a lot taller, and his hair isn't nearly as white as mine is! Plus he isn't in a chair! But you can definitely tell that we are brothers!)
Well, I will write more later; my muscles are starting to shake again, and my fingers are turning clumbsy again (keep on making mistakes). Also my shoulders are hurting, and my eyes are getting tired. So I guess I had better rest while I can!
This is Johnny Sandusky signing off! C ya next time!
Yes Karen
I also sense this new series of stories will be a winner..Karen
And writing down a day to day journal of our journey and adventure for recovery and deliverance is very helpful in fighting back from illness...
Journal Entry, #1, Wednesday, September 29, 2004~
