Tuesday, October 17, 2006


After my sixth-grade year it seemed as though one thing after another was going wrong, and I was beginning to think I was to blame. My wonderful Aunt got married to a wonderful man that summer. It was a beautiful ceremony, and was documented with a camcorder. After the wedding my family gathered together to watch the wedding. This was the first time I had ever seen myself walking and interacting with others since my diagnosis. My dad had a moving camera that was given to him by his mom, so I had seen myself when I was smaller on that camera. I was sitting at the top of the small staircase as the VCR began to play. I was always "the ham" when it came to taking pictures. My family knew this all too well, and when I got on camera they would say, “there you are!” Thinking that I was more than thrilled to be the center of the attention. I was unaware how I would look. It was a raw look at what other people saw when I looked at me. “Is that really me?,” I thought. My head was spinning and my eyes were tearing up. I wanted to crawl in a hole. I hid my fillings from my family and tried to act as though nothing was wrong. It was then I began the anger phase. I questioned why me, or what did I do to deserve this. I even found myself angry with God. I cannot remember a time when I was angry at my parents for carrying the gene. I often would ask my mom if she knew this was going to happen to me would she have had me at all. Her and my dad always said the answer was yes. Middle school was hard enough to deal with, and to tack this on was horrible for me. The way you looked, acted, dressed, and talked was important to fit in. If those factors were based on passing or failing I would have definitely failed. Not to mention that your body was going through major changes anyway with puberty. I was not the apple in any boy’s eye. I was more like the worm that would make the apple rotten! Why me during this time why me, was never an answered question for me. This phase lasted for a good year. I was not wanting to answer questions from other people when I couldn't answer questions for myself, and so I still remained to myself.

Looking back now I know that everything happens for a reason. Thanks for taking the time to read,
Miss S

Next post: the bargaining phase

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


I remember learning of the five stages of grief in my sociology class in Jr. College. If you are not aware of the five stages of grief or what they are let me tell you. A change of any kind of circumstance (FA is mine) which produces a loss = a reaction of grief. Elizabeth Kubler-Ross identifies these stages in her book as 1. Denial (not me) 2. Anger (why me) 3. Bargaining (promising to do better if…) 4. Depression (not caring anymore) and 5. Acceptance (ready for whatever comes my way). Due to my disability being slowly progressive, going over these stages in my life is a never ending cycle. Once I think I have accepted what has been given to me something else creeps up to deal with. Having to go constantly through these stages has made it quicker for me to get to the acceptance stage. Not only that, but my outlook and heart has changed a lot since then also making it easier to transition through those first four stages.

In these future posts I will share with you what I went through during these five stages of my diagnosis.

Thanks for taking the time to read,
Miss S

Tuesday, October 03, 2006


As I entered into the neurologist office on a cold Monday morning in 1986 I was really afraid of what he was going to tell me. It showed as I squeezed my mom's hand for comfort. He asked for us to go straight to the hospital, and that began the week I would never forget.

My mom stayed with me the whole entire week, and my dad would come after he got off work. My brother would visit after he got out of school. I got lots of games, coloring books, crossword puzzles. Anything to try to keep me occupied. I got lots of get well notes. My favorite was the chocolate chip cookie bouquet brought to me by my hairdresser dressed up as a clown! Being 12 that brought lots of smiles to my face.
I felt very loved during this time.

The testing did not begin until Tuesday morning, and we were told by the nursing staff that my first test would not be until 9:30 a.m. Breakfast was brought me at 7:15 a.m., and at that time my mom told me that she would go down to the cafeteria to get herself some breakfast then come eat with me. I was watching TV until she got back to finish my breakfast so we could eat together. A couple of nurses came into the room pushing a wheelchair and calling my name. I told them I was her. They proceeded to tell me that they were to get me, and take me to one of the testing room's. I told them I was waiting on my mom to bring breakfast up and eat with me. I also told them that we were not aware that anyone was coming until 9:30 a.m. They told me the times had changed, and that I was the first appointment at 8 a.m. They did not even think that a 12 year old girl would be frightened to go anywhere without her Mom in those circumstances. I stalled them the best I could by telling them to let me finish breakfast, and by that time my Mom should be back. I was eating slowly as they stepped out of the room only to return about 5 minutes later. They told me that I was going to be late for my appointment, and that I needed to go with them. I did not want to go anywhere without my mom, but they assured me that they would let the nurses station know where I was so they could tell my mom. Reluctantly I went with them which made me even more nervous than I already was. They took me on the elevator, and did not share any information with me about what was going to take place. I was wheeled into a room with big machines and a table lying in the middle. A doctor directed me to get onto the table. I told him that I did not want to do anything without my mom. He said he would tell me and show me what he was going to do to let me know that it was not going to hurt. He told me that he was going to be placing a needle in different areas of my body and wanted me to push against his hand. He then said "see I will do it to myself to show you that it does not hurt." Right at that time he looked up and said that he didn't have time to show me (how convenient). He stuck a needle in my leg and then had me push against his hand. It was so painful, and I was screaming for my mom. My mom told me she could hear me screaming from the elevator. She came running in with the most calming doctor. Dr. Pepper! She had me to take a drink and calm down. I could not quit crying, and kept saying "no more." He did finish much to my dismay. I am still not completely positive what that test is for. It was an electric shock for muscle biopsy or something. All I know is that it hurt like hell. Don't forget this was in the mid 80s, and I only hope and pray that technology has gotten better to where other people do not have to go through what I went through. I was so exhausted from doing that test and being so upset that it wore me out. I had a hard time staying in focus.

I went from there into another room where I did several different tests. None of them were as intense or painful as the previous test. I remember having to watch a dot on the TV screen while having all kinds of electrical hook up things stuck on my head. What a fashion statement I was at the time, having a backless gown and a bunch of sticky stuff in my hair! Due to being so exhausted I had to redo a test a couple of days later where they put my thumb into a little holder, and would send electric shocks to make my thumb twitch. I was not very happy about that, and knowing that I could not take anymore they let me go rest for the night. They told me that the remainder of the tests were not as bad. Yeah right I was thinking. I believed that about as much as I believed that monkeys could fly out of my butt!

The next several days consisted of more tests. I had this one blood test done where they drew blood and insert gases. I thought I could have my mom pull my finger afterward to relive myself! Instead it hurt very much so. Drinking a bunch of yucky stuff was a remember able moment. I had a spinal tap. The hardest thing besides that it hurt during, was that you had to lay flat on your back for several hours. Last but not least I had an MRI done. I had more tests done but those are the ones that I remembered.

The neurologist came into the room after all the tests were completed and looked over. He told my mom and I the fateful news that I had Friedriech's Ataxia (FA). He said that both parents have to be carriers in order to pass it on. That it is slowly progressive and would eventually confine me to a wheelchair. My question to him was "am I going to die." I was not understanding and probably did not want to understand at that time. To understand meant that I would have to deal with it. He did not have the best bedside manners, and did not go into a whole lot of detail about it. He did tell us that he had a good idea by my actions, and the way I was walking into his office on Monday morning what was wrong with me. Of course he never said anything until he had to proof, but he ended up being right. So he had an idea of what he was looking for, and that helped him out a lot. I still felt screwed over, confused, and scared.

Thanks for taking the time to read,
Miss S