Johnny is worried about his health. He has been having problems with his muscles, and he has also been having episodes of difficult breathing and choking. He is scared that his disease (muscular dystrophy) may be getting worse, and he is having a hard time dealing with it.
Saturday, March 11, 2006, 3:12 a.m., C.S.T.~
Dear Journal~
Well, it's happening, and I don't know what to do. I am afraid what may be going on with my body.
It is getting harder for me to move easily, and I feel as weak as wet spaghetti noodles. Everything I do just about wears me out, and I now have to be turned over every few hours or else I may get bedsores since I am now unable to do it myself. I have been having some problems with my breathing (I wake up with air hunger, and it is a scary feeling), and I have been choking. I also have been having problems with peeing and have been trying to get a kidney infection.
This has been going on for about a week now. Mom is worried, so worried, in fact, that she has thought about getting a nurse to come and stay with me, and also she may talk to my doctor at the muscular dystrophy clinic, to see what is really going on with me.
Ever since I have been reading that book by Mattie J.T. Stepanek, I have been worried that I may end up like him and totally dependent on a ventilator in order to breathe and use a power wheelchair. I also am scared what I would do if my heart was to act up or if I was to have another seizure. I don't WANT to die; I am only a kid of thirteen!! I have so much to live for!! I should be thinking of growing up, NOT DYING!!
I also haven't really done anything worthwhile: I haven't had a book out, and I haven't really performed like my sister; and I haven't performed on tv. Oh, I have a CD out (I did it when I was seven), but I haven't heard it being played on the radio, and I am wondering if my music career is on the blink. I am just a boring young kid who happens to have muscular dystrophy, and I haven't really done much in my life.
I want to be able to grow up and graduate from high school, or get married and have kids. I also would like to see a cure of my disease (Duchenne' s muscular dystrophy) happen in my lifetime and get out of this stupid wheelchair and get my strength back! It is downright EMBARRASSING to have someone help me with my personal affairs, and it is maddening to have people staring at me when I drop something or have to be fed like a baby! I am a teen, NOT a baby!!
Since I have the bad type of muscular dystrophy, I guess that I won't get to do these things unless a Miracle occurs in the next few months! Right now, it looks like I am notgoing to get that Miracle because I am definitely NOT getting better! If anything, I am getting WORSE.
Well, I have just managed to depress myself, so I am going to get on out of here. Life sure isn't fair at times, especially when you are ME. If you ask me, my life BITES.
I agree with the consensus of opinion below completely Karen !
We take so much for granted in our lives its absolutely astonishing, and your poignant letter by Johnny, underlines this fact, as he struggles to come to terms with sliding health and a serious disability !
Teeth clenching write Karen
Love and BLessings
Peter
One about 22 years ago, I was having dinner in a local Venice coffee shop with my good friend on a Sunday evening. We were both sniveling about having to work the next day and the struggles of twenty-something's to make their way in the world. Moments later, a helpless man in a wheel chair was rolled into the restaurant and his physical condition had deteriorated so badly that he could not move at all. Ms Vidra's writing has reminded me that there are people, as young Johnny Sandusky that struggle every day to do the simple things that healthy people take for granted. Her work reflects an inside look at the thoughts of a young man that is struggling to survive in both body and spirit.
A powerful view of life from inside the heart and soul of one courageous teen with more on his plate than many adults would know how to handle. His yearning for the opportunity to do things so many of us take for granted helps to put values and priorities in their proper perspective. The characterization here is realistic and the overall tone deeply absorbing.
Aberjhani
O, what a heartbreaking journal entry. The following,
"...I also haven't done anything worthwhile; I haven't had a book out and I haven't really performed like my sister; and I haven't performed on TV...."
strikes a chord of sadness. How powerfully written...does Johnny regret his life so far? What's stopping him from accomplishing his goals beSIDES the MD?
Suspenseful and close to home, Rain of Deception 2 will leave you in Tears. Much like Part 1, this will shocking sequel will keep you on the edge of your fingertips.
