Wednesday, October 11, 2006


Living in denial had became easy for me to do as that is just what I did before when I saw the signs, and so did in my parents. My parents and other family members began to look at library’s, and in medical journals for information about Friedreich's Ataxia (This was in 86, before days of the internet). They came out with not much more information than they had been given from the neurologist. So not too long after the search began it ended thinking they knew everything they were going to know. No matter how much more they found out it wasn’t going to erase the fact that it was what I was. There was and still is no cure for FA. I cannot even imagine what must have been going through my parents minds as the doctor told them it is genetic, and that both parents have to be carriers of the gene in order to pass it on. I do know that my parents racked their brains trying to trace back in their families of anyone else who had FA. They came up empty-handed. Guess I was the chosen one, lucky me right? I was spending most of my time after the diagnosis being in denial. I remember watching a TV movie with my family that was about a little girl with cystic fibrosis, and the struggles she endured while living with it. She passed away at the end of the movie, and I just cried and cried. I was still confused as to what was happening with me, and I went over to my mom and laid my head in her lap telling her that I did not want my life to end that way. She just padded, and kissed my head reassuring me that everything was going to be Okay. She was telling me that my disability was different than that girls was, and that if she would have known It was going to affect me this way she wouldn't have let me watch the movie. No one from school came to visit me while I was in the hospital. I am pretty sure that some of kids and teachers knew, but weren't asking. I withdrew from a lot just so I would not have to talk about it. I remember wanting to be a cheerleader or pom pom girl so bad. I would memorize their routines and come home doing the cheers in the backyard where only my biggest fan, Spanky (our white, medium sized poodle who loved being outdoors) could see!!!!!!! I tried to act as though nothing were wrong. I was still going over to the girl’s house across the street. She was at the age where playing was what mattered not how I looked. Because I was in the denial stage for a while before the diagnosis it did not linger as long. It was the summer after my sixth grade year that the anger stage took over.

Next post entry: the Anger stage

Thanks for taking the time to read,
Miss S

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