I was 4 when my tics started. A weird sort of hmph sound. I would repeat it for hours. For a while my mom thought I was being a bratty kid, and she would put me in timeout. I cried and told her I didn’t mean it, “I’m sorry mommy, I don’t know why I’m doing this.”
When I was about 5 my neck started jerking around. A small and sudden motion that would snap my head forward and back. It could happen in 3’s sometimes more. If I held it in my neck would get stiff and I couldn’t focus on anything else except this strange urge to throw my head back and forth. My mom would hold my head in her hands and talk to me while my whole body twitched.
My mom was in the kitchen one day getting dinner ready. She was boiling water for pasta on the stove when I wandered into the room. I remember staring at the pot and thinking, ‘I know this pot is probably scalding, but I need to touch it and make sure.’ Bubbling water spilling over the sides, any other child would stand as far away as possible. But I had this uncontrollable feeling that if I didn’t touch it, something bad would happen. I reached out and stuck my hand to the metal. As would be expected, it was fucking hot! My whole handprint was melted. I cried and my mother screeched, “why in the hell would you do that???!!!” I looked at her, still crying and said, “I don’t know mom. I had to do it! I want to do it again!” She told me to get out of the kitchen.
My dad was diagnosed with a rare form of cancer when I was about 7. I started having more and more severe compulses, along with vocal and physical spasms. I stopped sleeping, and was diagnosed with having a sleep apnea. They removed my tonsils, in the hopes it would fix the issue.
When I turned 8 my vocal spasms turned into swearing. My mom had had enough. My father was ill, she was tired, and her child was acting out. They took me to a therapist, who recommended I go see a specialist. She recognized some of the symptoms that a few of her other patients also suffered with.
I was diagnosed with Tourette’s Syndrome at the age of 8.
My mom felt horrible. All of those fits she had assumed were me acting out, really weren’t anything I could control. We went to a doctor who told her to put me on an anti-psychiatric medication. To which she told him that maybe he needed the medicine for thinking to suggest something so severe to such a young kid.
The 5th grade was the hardest year of my life. We knew what was wrong, but couldn’t really do anything to fix it. My classmates called me bobble-head, because of the violent head bobbing from my neck spasms. I would come home after school and just sob. I didn’t want to be this way. I didn’t ask for this. I was 10 and thought there was a monster living inside of me. It controlled my life. I started having spasms in my hand that would break my pens while I took a test. My mom bought me metal pens in the hopes that it would be harder for me to break them. The pens worked, but it left me with an indented callous on my finger from the pressure I was using when I wrote. My hand hurt all the time and I hated writing.
I began to practice suppressing the tics. In the hopes it would make my classmates leave me alone. I was determines to be normal like them. I managed to push the tics and spasms down during school hours, but when I came home I would break down. My body would twist and convulse. I would swear and yell, yip and scream, squeaking and flailing. When it was over, my mom would hold my hand and just let me cry into her lap. Every day I would ask her why god was doing this to me, and every day she told me it wasn’t a punishment, it was a gift that I would someday use to change the world. At 11 I wanted to believe her.
My dad died shortly after I turned 12. I sat at the front of the church at his memorial service and tried to stop my face from twitching. I spent the first few months after he died in a stupor. I questioned my mom about religion and why everything bad was happening to us. People would tell me god “needed” my dad for a bigger plan, but that never made me feel anything more than resentment. How could a being that was said to be filled with compassion, remove one of the most important people in a child’s life for his own selfish reasons. My dad would hug me and tell me I wasn’t crazy or weird, that I was only his baby girl, and not the monster I was made to feel like. Without that I felt lost.
The year I graduated I was swearing nonstop. The few friends I had didn’t pay mind when I would shout out fuck or bitch at recess. They maintained my sanity. Until high school.
We all went our separate ways. I found solace in drawing and painting. When my hand would spazz over the page and my art teacher would tell me I was unique and innovative. If I concentrated hard enough I would create beautiful portraits, with details no one else saw about the subject. My freshman year was the year I had dreamt of. People liked me. I was funny and witty and felt at home in my own skin for once. Until my apnea caught up with me again. I started going to school later and later, until I was given an option. Transfer to a school closer to my home or get kicked out for being tardy.
I spent the next 2 years in a downward spiral. No one in my new school understood me. I spent all of my time in the art room, sitting in the back with my headphones in, drawing. I didn’t talk to anybody. Including my mom. I started having panic attacks when I would walk into my school. I would sit in a stairwell and put my head between my legs. After my sophomore year my mom had had enough. Truency officers and social workers were called and I was forced to return to my classes. For a few weeks I sat in the back of the room and tried to focus. But it was too much. A counselor told me about a more liberal school that didn’t have a regular curriculum. With more freedom, we hoped I would thrive on my own.
My senior year went more smoothly. My teachers worked with me and I had a few friends again. But once again, this monster couldn’t seem to leave me alone. I stopped going to school again. I looked for different much less productive ways to control my spasms and tics. I started drinking, doing drugs, I was 17. For a year I was addicted to different things. I would snort pills and finally feel normal. My aching muscles didn’t hurt anymore, my brain wasn’t firing nonstop, and I could sleep again. I knew it was wrong, but I didn’t care. Anything to feel normal I would tell my concerned friends.
A few months in I developed a new spasm. My stomach would convulse repeatedly, to the point that I stopped eating. I couldn’t even drink water without it sloshing everywhere. 50lbs later my therapist of 10 yeas threatened to hospitalize me. I was sleeping all of the time, crying all of the time, and still doing drugs. My body would plateau and I would have to use more and more to retain that numbness I had come to depend on.
I tried to kill myself twice that year.
I was on and off of medications to try and help my symptoms but the side effects were all way worse than just trying to cope on my own. I stopped doing hard drugs and started painting again. I got clean on my own, surely I could conquer this monster? I worked harder to suppress my tics and dealt with the pain that came with this on my own. I stopped communicating and shut myself off… I dropped out of school a few months later.
I’m almost 20 now, and things are still difficult. I work full time, and am hoping to get my GED and start college in the fall. My spasms are under control and the pain isn’t so bad anymore. It’s a part of my life. I can’t recall a time when I wasn’t exhausted, or fully pain free. I have a hard time in social situations where I used to thrive, and every day is a struggle. As much as my boyfriend tries to understand, it’s hard for him, like it was for my mom and friends. Trying to understand something that doesn’t make sense every day. I fear that he’ll wake up one day and realize that it isn’t his cross to bear.
Without my mom’s consistent support I probably wouldn’t still be here. She’s held my hand and learned with me throughout this ordeal. We understand I will never be free of this, and I’m going to have a hard time with even the simplest of things. Crippling spasms, uncontrollable tics, ocd, depression, anxiety, all things I cope with on day to day basis. I still thoroughly believe this is a curse. My monster to fight and maybe some day defeat. As of right now it’s a stalemate. Neither of us is getting the best of the other, and I can only hope to get ahead of it someday.