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,