I've recently been thinking much about the possibility of psychogenic dystonia/conversion disorder. I have been tested for every gene possible. My dystonia is worsening and I would like some peace of mind. I am going to write an entry a bit haphazardly, and much of it may seem like whining. In reality, I am simply writing about things that happened to me growing up. One person can only take so much stress before reaching a breaking point. We're taught to bottle up our emotions, to stay strong and not cry, even if we're screaming inside. Did the emotional center of my brain overload and manifest itself as dystonia? I'm not really sure, and I may never know...
I've known my husband (casually acquainted) for over over 15 years now. Actually, our first real date was only five years ago. When Nate walked through the door of Starbucks, the evening sunset seemed to radiate in behind him. I recall thinking, "I am going to marry him someday." I wasn't actually quite sure if this was even a date. Was it two people with common interests and some fond memories of our high school getting together to reminisce, or more? I had no clue.
Nate is awesome with faces -- too good, almost. Since he recognizes people and remembers names so well, he used to feel offended when people could not remember him. Some time after we had been together, he admitted he never would have recognized me that evening if he had not known that we were meeting. I looked so different. I looked different because I was sickly, shaking, and barely 90 lbs.
Nate remembered a few things about who I was: I played saxophone, I wore Beatles t-shirts, and I was a cross country runner. He also said he remembered I was nice (debatable now, I'm sure). I remembered he was really skinny, played trumpet, and he wore tie-dyed t-shirts. Nothing else.
Nate and I had very different high school experiences. In fact, our experiences growing up in general were very different, despite how much we have in common. Both of us were actually kind of bewildered after talking for a bit, "How is it that I didn't know you back then?" We had so much in common. The only practical and perhaps spiritual answer I could offer to both of us was, "It just wasn't the right time." From my point of view, I had to add one thing on, tears filling my eyes, "I really needed a good friend back then... but God doesn't put us through anything we can't handle in life"
Growing up, I completely lacked self-confidence. I could not look people in the eye while conversing. I was soft-spoken. I never stood up for myself. I let people copy my homework as they giggled behind my back, gossiping about what an ugly dork I was. I imploded. I had no dignity.
I recall in 7th grade, a huge pool party being thrown, and invitations being passed around. The invitations came with specific instructions - "Nicole is weird. Don't tell her." Never mind the fact that the party was being hosted by a girl who lived just two doors down from me. I've since forgiven her, but I don't think anyone there could possibly understand how much all of this hurt me. It's like I wasn't human.
Gossiping sucks, especially when things get back to the person, regardless of what is being said is true. There was an entire school bus my freshman year of high school that talked about me, and it got back to me. "Nicole sucks at the saxophone. Why doesn't she just quit?" Now, that was a milder rumor that went around in the late 90's. "Nicole is ugly, how could anyone date her?" Really, it only gets worse. Things I simply cannot post here. By the end of my sophomore year, I begged my parents to let me switch high schools. The mean, subtle pranks became too much. I didn't know who to trust.
I realized by my junior year that I wasn't just a cross country runner... I was a damn good one. I was ranked 6th fastest in Erie County Division II Women's XC. No one cold take that away from me. I knew the harder I worked, the faster I'd get. So, I ran and I enjoyed. I tried to ignore the "Run Forrest, run" comments. If people wanted to pull that, then they needed to race me. Running was my escape from EVERYTHING bad. If someone hurt me, I ran. More people were using instant messenger, so that meant online pranks and bullying. On one occasion, I had to file a police report. I hated my life. I could only run to escape. If I didn't do well on a test, I ran. I just ran. I ran to combat my problems and momentarily escape from them.
By my senior year, I continued to run competitively. I played two instruments in three different bands and was running on empty. One evening I was waiting for my mom to pick me up. With a backpack, a bassoon, a saxophone, and an Adidas duffel bag, I had my hands full - literally. I heard someone offer to hold the front doors of the school open. As I stepped out the door saying "Thanks", the door slammed in my face and I dropped everything. I looked to see who it was. He just laughed. I got my things together and bottled it all up inside. All the anger. Soon it would be over and I'd be out of that hell hole and away at college.
Really, my escape to SUNY Albany was just okay. I was afraid to socialize. I studied all the time and never missed Sunday evening Mass. If I had time I ran. Drunken floormates would pass me walking back from the library at 1 in the morning, "Nicole, are you coming from church?" The stress bottled up. My neck felt unusually stiff. Stress? One evening I was gagging. Some concerned floormates called 911. At the hospital, I was diagnosed with a "headache". Not that I could blame them. I got to the E.R. and whatever was causing the gagging disappeared. I believe it was dystonia.
One year away at college, I decided dorming wasn't for me. I enrolled at UB. Seven months later, I couldn't walk. The rest is history.
On that first date at Starbucks, I told Nate much about all of this. I don't know why. I guess I needed to get it all out to someone. Some of the people who he was associated with back then, well, the way they treated me was... well, it sucked. He just shook his head and said "fools." I still had my one true passion - running. Nate loved reading. He recommended a book to me, The Loneliness of the Long Distance Runner. I pulled a notepad out of my purse and wrote it down. To this day, he reminds me of how impressed he was that I did that. I never read the book, and I even own the movie! Maybe one of these days I should watch it... or buy the book... and read it.
Still, I wonder... is my dystonia psychogenic? After over ten years of suffering, I just wish I knew why this happened to me. I was supposed to be victorious and leave my shitty past behind. I was confident I'd have a successful law enforcement career and I'd never let anyone push anyone else around if I could help it. That would never happen.
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