Thank You Dr. Kurlan
Paroxysmal Kinesthetic Dystonia. Good luck pronouncing it, let alone knowing what it is. The disease is defined as an “episodic movement disorder in which abnormal movements are present only during attacks”, but to me this disease would be defined as “these horribly annoying and socially paralyzing attacks that come onto a person and make them flail around their arms and legs like an idiot”. I have been dealing with this disease since I was in sixth grade. It has affected who I have become and how I live my life day by day. I am one in a million. Why me? No one knows. I will not deny that I have felt sorry for myself or have had pity parties. After all these years I am only now starting to come to terms with it.
Sixth grade. This was the first time my body starting doing these weird things. I would stand up from my desk and my legs would start to wobble. I walk up to the board to write something and my arm would start jerking in abnormal ways. I had no idea what was happening to me. I tried to keep this weird quirk under the radar; I didn’t even tell my parents. If someone was to ask what I was doing, I would just laugh and walk away. Some people probably thought I was crazy, but so did I.
I switched schools for seventh grade. A new start, but not a goodbye to these movements. In gym class I it would be my turn to serve in volleyball, but as the ball went up into the air my arm was not there to hit it. Instead it was flailing about. The thing was happening to me. I called it a thing because I didn’t want to give it name or tell anyone about it. If I didn’t acknowledge it, maybe it would go away.
It was eighth grade and this thing started to shape my life. I would never volunteer to do anything in class in fear that when I stood up my legs would give out or my arms would flail around hitting things. I knew that I could partially control them, but it wasn’t worth the risk of getting laughed at. All I wanted to do was fit in and be a normal kid, but that was impossible. By this time in my life I had come up with an array of excuses as to what was happening when the thing came on: my feet fell asleep and I thought if I moved them around it would help, I was just dancing, I have no idea what just happened that has never happened to me before. These excuses worked and allowed me to hide from the truth. I would cry to myself, not knowing what else to do. I couldn’t tell anyone. I was scared of the truth and the consequences it would bring. Was I dying? I didn’t want to know, but then came the turning point.
Eighth grade was the first year I ever told anyone about my condition. I was the school president. The pinnacle moment of middle school, graduation, was coming. I would be giving a speech at graduation. Unfortunately for me, my seat was not near to the podium. These things would always occur when I stood up and were brought on by stress. I knew that when I gave this speech the entire school and their parents would be watching me. We were practicing the graduation ceremony. I sat quietly in seat, my heart starting to pound as my speech approached. My principal introduced me and I stood up with clammy hands. I took my first step and it happened. It was horrible. I looked retarded, literally. I felt as though I belonged with the special education kids because it was obvious that there was something seriously wrong with me. The thing lasted about 15 seconds. I knew that I had to keep going, so I went and gave my speech with my whole class looking at me with concerned and uncomfortable eyes. They had all seen me do this weird thing before, but never for this long. I finished my speech, excused myself saying I had to go to the bathroom, and cried. That night I told my mom.
The summer leading up to my freshman year of high school was filled with doctor’s offices and hospital visits. No one cared. All of the doctors I went to referred me to someone else, but still made me pay the fifty dollar co pay before leaving. I started to hate doctor’s offices. They have a peculiar odor and sadly these doctors did not give me a tasty lollipop or a Scooby-Doo Band-Aid before I left. All they gave me was disappointment. There were times when I thought this unknown illness was going to kill me. I didn’t know who I was or what I was going to become. For one week of my summer, when all of my “normal” friends were playing in the pool or eating ice pops, I had to stay in the hospital with wires attached to my head. I looked as though I had a serious medical condition. The truth was that I had gone through over 5 EEGs, a test which measures and records the electrical activity in your brain, and they had all came up blank. One of my unhelpful doctors who thought that these things were connected to seizures sent me to the hospital where they decided to hook me up to a machine for a week to see if it would catch any unnatural brain activity. A seven day EEG. It didn’t.
My high school years were a blur. I decided to just live with these things. Looking back on it, I have no idea how I did it. Public speaking was not for me. Not because I was nervous of speaking, but because I was scared of getting up. I never volunteered to give an announcement at school meeting for my sport team. I hated when they asked me to do something at formal dinner, because I was unsure of what would happen when I stood up.
It was freshman year. I had been at my boarding school for about two months. My formal dinner head asked me to take the pitchers up. I gave them a nervous response, something unusual from the normal eye roll and annoyed response of fine. I stood up slowly and grabbed the pitchers. I started walking thinking all was going to be okay. I was wrong. About halfway to my destination point the thing started. As my arm started to flail, so did the pitcher and all of its contents. I proceeded to call my mother crying that night. When people asked me about what I had done, I very quickly responded that I didn’t know and walked away. High school was supposed to be a new beginning, but I was still living in the problems of the past.
Junior year, 2 years later, was not much better. I had started a dance program at school and was forced to make an announcement to promote it. I practiced my thirty second announcement forever, knowing that I couldn’t be nervous or else. While waiting on line for the announcement I tried to move around hoping that it would happen to me before I went on. Of course it did not. I walk out. Like always, the thing happened. I was not going to let anyone notice. I grabbed the podium with my hands clenched and started to rock it back and forth. My legs were moving, but I tried to make it stop. Although all of these things were happening to me, I am simultaneously gave my announcement. I am not really sure what the audience saw that day, but I did get 15 girls to sign up for dance. Maybe no one had noticed, but I am pretty sure that they did.
It was the summer before my senior year at Blair Academy. I had just come home from the state fair with my friend where I had gotten food poisoning. I was home late and I knew my mother was not going to be happy with me. My friend dropped me off on the street where I live, but I had to cross the road. The road I live on is like a highway. The speed limit may be 40 mph, but cars calmly pass by going 60 mph. I saw a car turning onto the street, but it appeared that I would have ample time to cross. As I started to cross the car started accelerating. The thing happened to me. There I was dancing around in the middle of the street with a car racing towards me and I couldn’t move. Although fully mentally aware that my life could be ending in seconds, I couldn’t get my body out of the street. I was able to throw myself out of the road just in time. I landed on the gravel next to my mailbox. The thing finally stopped, but the memory would be with me forever. I had scratches all over me from the gravel, food poisoning, and was late. It was not a pretty moment when I opened the door. Although upset because I was 3 hours late and disgusted by my food poisoning from a corn dog, my mother said that I couldn’t live like this any longer. She knew that I didn’t like to talk about these things that happened to me, but I had to talk. Not only was embarrassment and shyness an effect of these things, but now it could have killed me. If it had lasted five seconds longer, I would have been like the numerous deer that have become pancakes on my street. Although we had not found the answer four years ago, together my mother and I set out again on a journey. A journey that I strongly believed would have no ending.
The first week on my senior year I was finally diagnosed! It appeared that Dr. Sandy Warren had finally answered all of my prayers! After all of these years of tears and agony, someone finally had an answer for me. He put me on a medicine called Trileptal and I sincerely believed that I was finally going to be a normal person. There is no such thing as a normal person and if there was this medicine was not going to bring me anywhere close to it. My first month of senior year was hell. At first I thought the medicine was only making me tired, but then I realized it also gave me depression. While my friends sat outside laughing, I went to my room and cried. I cannot tell you what I was crying over, but I do know that I had an abnormal amount of tissues in my trash can. I had thoughts which were abnormal and I was no longer Celeen. Yes, the things were not happening, but the side effects were even worse. Why could I never be happy? Why me? It wasn’t fair! After all I had been through I still could not find an even ground!
College, the single most important thing on every single senior’s mind. I was screwed. The first month of my senior year was gone. I had not talked in classes, I didn’t finish all my homework, and I wasn’t doing well on tests. That first month, possibly the most important semester of my whole high school career, was ruined because of this disease. Unlike the little sixth grader who didn’t want to share these weird things that were happening to her, I told my mom relatively quickly. I didn’t tell her because I was upset and sad that the medicine was not working, I told her because I was scared. I was more scared then I had ever been throughout this entire journey. I had always been so confident in my life, and at this time I was willing to throw it all down the drain. I didn’t care what happened to me. I am extremely lucky that I realized what I was doing to myself.
Dr. Warren told me that I had to suck it up or see a different doctor. Not the response I was expecting after I told him that the medicine he prescribed for me was making depressed and was not healthy for my well being. So I did exactly what he told me to. This man may have figured out what was wrong with me, but I didn’t care. No person was going to tell me to suck it up! He thought I wasn’t strong, but he obviously didn’t understand how strong this disease had made me. It was my senior year of high school and I was not about to give up my future just because he didn’t want to deal with my case anymore! I had dealt with these things for over six years and I wasn’t surprised that his solution didn’t work out. No solution ever had.
Dr. Kurlan, my guardian angel. After Dr. Warren told me to suck it up, I took a different route. All the doctors I had seen were neurologists. I went on a different route and saw a movement disorder specialist. Dr. Kurlan knew my condition right away! He talked to me about the effects it had on my life and quickly prescribed a new medicine for me. It was amazing. After six gruesome years filled of embarrassment, frustration, and depression, I had finally found someone who understood. It was the miracle I had been searching for all along. I finally understood what these things were.
After six disheartening years filled with embarrassment and frustration, I found someone who understood. I am now under Dr. Kurlan’s watchful care and for the first time I feel like a normal person. Actually I am not normal; for the first time in years I feel like Celeen. This journey has shaped who I am and who I will become. I know what it feels like to be judged and alone. I have overcome those roadblocks finding that I must live for myself, but there is no reason for me to go on the journey of life by myself. This disease has made me strong, yet compassionate; a fighter, yet a listener. I have been through it all, but that’s life. That’s my life.