8-2-98 21 years old. It’s August already. The start of classes approaches without my cares or concerns in mind. Time for school work overrides time to just be alone and think. And so tonight I thought I would set aside some time for myself to just think. The idea of living life each day as if it were my last is one my uncle Sonny would agree on, if he were still alive. Death lurks around every corner. For some people death is slow, taking its time over the years. For not so fortunate people, like my uncle Sonny, death comes much quicker. In the end it is all a matter of time before death jumps out on us anyway. So the time we are here we better make it count. Why is it then that I spend so much time caring about what others think of me? The conclusion I came up with is that I don’t love being me. I am ashamed of having a body that does not perform physically like everybody else’s body does. I hate standing out in the crowd with all eyes on me when I get up from a table or chair. I don’t like people judging me before they know me based upon my physique. The problem with these conclusions is that I cannot change them because my body will not allow me to. No matter how much weight I lift in the gym or exercises I do, I cannot change the fact that a protein inside of my muscles is defected. It is so frustrating to be born with an able body and now you have to watch it change for the worse, all the while your only 21 years old with your whole life ahead of you. Will I ever marry, have children, be able to play with my children, go on vacation, support my family financially, are all questions to life that I may never be able to say I experienced while living. It’s not like I am 70 years old, all the questions above are answered yes to, and then being diagnosed with Limb-Girdle Muscular Dystrophy. At that point in time does it really matter? I don’t mean to sound mean when I say this but being
diagnosed at 17 instead of 70 makes you a little upset you didn’t get to live a healthy active life. I don’t know what the future of Limb-Girdle Muscular Dystrophy holds for me. The only thing I can do is live each day as if it was my last and hope somewhere along the way a cure is found.
