The Disorder I am Done Hiding

Tourette’s Disorder is a commonly misunderstood disorder. It is often referred to as the “swearing disease”, when there is so much more to Tourette’s than that very rare tic. I am very passionate about Tourette’s awareness and education about Tourette’s because I have this disorder.

I began having tics when I was 13 years old. It started out by jerking my head to one side repeatedly and occasionally making noises that seemed to come out of nowhere. I had no idea what was going on or why I was exhibiting this odd behavior, so I decided to hide it. I learned early on how to suppress my tics, so I have been able to hide my disorder from many people for several years. Suppressing a tic is difficult. When my brain is telling my body that is needs to do something, my body becomes extremely uncomfortable until my body performs the action that my brain is demanding.

Suppressing a tic is much like holding in a sneeze. It is possible to hold in a sneeze, but it is uncomfortable and may not ultimately work. When I try to suppress a tic, there is a possibility that I may fail and Tourette’s will win. Tics made social situations like church, work, and school next to impossible to get through while trying to conceal my disorder.I learned suppression for situations like these, but as the years have gone on, it has become more difficult to hide my tics. It is not uncommon for me to hide in a bathroom or broom closet to tic without having to face the public ridicule.

People often misunderstand Tourette’s because of how it is portrayed in the media. I get asked a lot if Tourette’s is the “swearing disease” or if I myself shout swear words uncontrollably (No, I do not). I have been told repeatedly to get my tics under control, and I have been scolded for faking it for attention. These are the reasons that I hid it from many people, because I did not want to hear someone else tell me that Tourette’s is fake and that I should stop it.

When I first started having tics, my neck would jerk to one side. This was fairly easy to talk away, even if it caused pain. Now my tics have grown to encompass shouting the words “meh” or “beep”, knocking on tables until my knuckles bleed, losing control of my hands, and my newest tic of slapping myself in the face three or four times in a row. These tics have become harder to explain away and much harder to hide. This has led to some awkward moments when people would stare, and I would quickly apologize by saying, “Sorry, I have Tourette’s.” Usually the other person would laugh until they realized that I wasn’t joking. They then reply with, “Wait, are you serious?”. I make it clear early on that people are fully allowed to laugh at my tics, and it is often more awkward if no one laughs. Tics make meeting new people really interesting, and I will occasionally have someone who understands my disorder explain it to people that I am about to meet, that way they have some warning before I start spazzing out in front of them.

I have decided to stop hiding my disorder. There is no reason for me to be ashamed of this thing I cannot control. Tourette’s has become a part of me, and a part of my life. This is an open invitation to ask me about Tourette’s or to laugh at my tics. I have come to love this part of me, because this is a part of what makes me unique. Yes, I have Tourette’s disorder, but I am no longer going to hide it. I want to own my disorder and speak out about it to cure the ignorance and stereotypes that surround Tourette’s Disorder.

 

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The Incredible Story of How I Didn’t Get Married

I sat at his dining room table, crying. I looked this man in the face as I told him “I’m leaving you”. He wept too as our 3-year-long relationship dissolved before our eyes. It was two weeks after we had celebrated three years together, but now it was all gone. We were just a few weeks away from getting engaged. The wedding was all planned and I had saved a good portion of our wedding budget already, ready for the day that we could start our wedding preparations. But all of this planning became null and void as I broke his heart.
He and I had met on a mission trip right before my high school graduation. We took a liking to each other almost immediately and went on our first date a week after learning each other’s names. Within a few months of dating, we began to discuss marriage. He was significantly older than me; he was at the common age for marriage, so he was looking to get married and start a family. Even as a young, 17-year-old, I was infatuated with marriage. I studied marriage. I read marriage books even during my single years because I was fascinated by this particular social institution. So when the prospect of marriage came up, I was excited to experience it myself. I was in love with the idea of being a wife, but I wasn’t in love with him.
Being a relatively practical thinker, I knew that any marriage is far from perfect and I knew that I would never find a perfect man. There were some things about him that I did not like, things that I would have considered to be deal-breakers if I was not blinded by the idea of being a wife, but I had convinced myself that I could never find someone who fit all the requirements that I had set out. He and I had very little in common, but we did everything together. There was rarely a time when we would be separated if we could help it. We suffered through each other’s activities for the sake of the other. I over-looked all of it because I had convinced myself that I could never do better, and it didn’t make sense to end this relationship because we already had a wedding planned.
Through the years we had a pretty decent relationship. He had never mistreated me in any way. From the outside, we were a good couple who worked well together. The decline began when he moved to the city I was attending college in. For two years, we had been separated by a little bit of distance. We were at least an hour and a half drive away from each other, but his moving to my town put his apartment within walking distance of my campus. We began seeing each other almost every day. Within a few months, we were fighting on a regular basis. Things were declining fast, and I–being in love with the idea of being married–was trying to keep this relationship together for the sake of our impending engagement. I had signed us up for marriage conferences, couple’s retreats, and I had increased my library of marriage books by a staggering amount. Even with all of my trying, I was feeling more and more uneasy about the relationship. I sat in my unease for a full year.
I had shared my unease with my roommate and best friend, Stefanie. She would listen to my concerns, but never pushed me to make a decision one way or the other. She simply decided to support me in whatever decision I made. I had no idea what I was going to do about it, until one day it hit me; I needed to leave him. I had been fairly open about being uneasy about our relationship with him, so I brought it up again. Of course, he was very unhappy and he gave me an ultimatum, I could either stay with him or leave him. He said that the responsibility was on my shoulders and I had to make this decision. I went to his apartment the next day and ended things between us. The break-up hurt both of us. He was genuinely in love with me, and I felt bad for taking that away from him. I also saw my dreams of being a wife and mother disappear, which devastated me. My whole future had been planned out, and in a few minutes, I threw it all away. I had spent 3 years with this person, spending time building up our relationship, strengthening it, and investing in it, but one sentence destroyed everything that we had built: “I’m leaving you.”
Little did I know, but the next day would change my life. After my friends demanded that I go out to make me feel better, I attended a school dance with them. Afterward, I went back home and grieved over my decimated life plans. I sat in my living room and I began to pray about what I would do when God said to me, “Remember that conversation you had with Stefanie?”
My mind immediately flashed back to almost two years earlier when I was talking with Stefanie. We had been talking about some wedding ideas when she suddenly asked me, “Are you sure that you want to get married?”
I answered with, “Of course, I do. Why wouldn’t I?”
“There’s so much that you can’t do after you get married” She responded.
“Like what?”
“Well,” she began “You can’t do things by yourself. You can’t just take a year off and run away to Africa. You have to take the other person into consideration”
“Stefanie, I don’t want to take a year off and run away to Africa…”
That’s when I came back to my living room. My eyes were still bloodshot from my grieving and I realized what God was saying to me. “Oh, no” I began, but before I could say more He responds by saying,
“Oh, yes. You’re going to go spend some time in Africa”
May 15th was the day I had planned my wedding date to be, but instead of spending that day in a wedding dress, I spent it in planes and airports; my flight left on the very day I had intended on marrying him. I spent 3 weeks in central Africa following God’s request that I trust Him, give up everything and go serve Him. Between the time of the break up and actually spending time in Africa, God expanded His request that I eventually move to Africa for a more permanent stay. Being in Africa for that short time solidified God’s greater request. I will eventually live somewhere in Africa doing whatever He tells me to do. But during the period of time that I preparing to go on my short-term trip, God showed me why He asked me to end that relationship. God knew that he would not have gone with me and he would have tried to keep me from going even on a short-term trip. I had chosen to follow God and I spent those weeks in a third world country rather than on my honeymoon. What I realized is that my plans for my own life are absolute junk compared to what God has planned for my life. I had planned a future with relative financial security, safety, and a comfortable living for myself and my would-be husband, instead God decided that He would rather have me trust Him for finances, live a bit dangerously, and get ridiculously sick in Africa rather than get married. I was much happier being in Africa following the will of God than I ever could have been following my own selfishness in getting married.

I Learned from the Best

In every friend group, there is the “mom” of the group. This has been my position for a few years now. Though my friend groups have shifted and changed over time, my role as “momma” has remained the same. Although I do not have children of my own, I have fallen into this mothering role. It is not unlikely for me to be seen bringing bowls of soup to friends who are suffering with the flu or sitting with friends who just need to talk and cry. I’ve held hands with my friends through tough times. I’ve held grieving friends as they mourn. I’ve rejoiced with friends when they have been accepted to graduate schools or have been offered big kid jobs. I’m always checking that my friends are safe, well-fed, and cared for.

I absolutely love my friends, and I love every moment that I get to tend to their needs. I’m not exactly sure how, but I seem to attract people with rough home lives. People who could not be raised by their parents, people who have lost their parents, people whose parents should not have been allowed to care for children, and people who have been dreadfully hurt as children and are still dealing with those ghosts in their adulthood, they all seem to find their way to me. It gives me meaning to take care of people who had been neglected for so long.

Although it has been staring me in the face for years, I just now (in the past 20 minutes) realized where I get it from. I have a close friend that just had a rough weekend. He got severely sick and had to visit the ER. I found out about this reading it on Facebook. My mom was the first person to comment on his status, making sure that he was okay. That’s my mom. She’s the one who will always care for the needs of anyone who needs her. She sacrificed so much to raise and educate us. Even now, she makes sure that my tuition is paid before she makes any other financial decisions. She put her whole being into making sure that we were taken care of. From home-cooking healthy food to giving us the best home school education that I have ever seen. She not only took care of us, but she also gave herself to the church every occasion she could. I remember going with her on many trips delivering home-cooked meals to people who were sick or recovering from surgeries. I went with her to some funeral dinners when she would provide her services to grieving families. I sewed costumes with her for church and school plays (despite her children not going to public school). I baked cookies with her for Vacation Bible School. I saw her doing all of this while growing up, but it took me this long to realize that seeing that had a massive impact on me.

I could not have been the friend group mom if it had not been for her. She taught me how to take care of people. She taught me how to sit and grieve with those who are grieving. She taught me hospitality and first aid care. She taught me how to focus in chaotic situations. She taught me how to stand on my own two feet. Mom, thank you for being the mom that I needed. Thank you for teaching me how to be a mom. I learned from the best.