Sunday, June 5, 2016

Learning, Healing, and Self-acceptance: A New Roommate's Reaction to Tourette's

After months of not having much to write about in terms of Tourette's, I feel like I could write a novel about the past week! For time's sake, I'll try to write a much more concise version (especially with work early tomorrow morning). Where do I even begin? I moved out of the dorms, graduated college, signed the lease for my very first apartment, moved in, met my new roommate, bonded with my new roommate, and started my first full time job! Whew, quite the mouthful!

What I want to write about tonight is my experience telling my roommate about my tics and beginning to live with her. It's been a year and a half since i've lived with a roommate. My previous suite mates in college all knew about my Tourette's and have been very accepting of it, however it was not something I often talked about with them. Especially for the past year and a half to two years I haven't felt very comfortable talking about my TS with anyone except for one close friend (who I have been friends with for 10 years now) and my camp friends who either have TS themselves or have extensive experience with the disorder. I'm not sure exactly why this is. I think it partially has to do with the pressures to conform that I experienced in greek life. While I greatly value the friendships I have gained from greek life, I never felt comfortable talking about my tics around these friends or letting these friends see the full extent of my tics. Also partially due to the highly damaging things my parents and grandparents have said to me about my tics such as that if my employers knew about my Tourette's then doors would close for me, I would never be hired. That if my friends knew about my tics they would abandon me. And that if I told a person I was dating abut my tics they would break up with me. I've since had so many encounters and experiences that have proved my parents SO wrong, however their words stick with me no matter how hard I try to shake them.

Also during the past two years, when no change or transitions are going on, when things are fairly mundane and routine, and when i'm not particularly excited or stressed about something, my tics can be fairly mild. Barring bad days or bad weeks that is. I have the ability to hold in my tics for a period of time, and even though it can be extremely uncomfortable, I choose to hold in my tics around many of my college friends. That's not saying that I never ticced around them. That's just saying that when I was able to, I chose to suppress the larger tics and let them out when I was alone in the privacy of my dorm room. So it wasn't difficult to go longer periods of time without thinking much about my tics or feeling the need to bring up something about them. Coasting along and ignoring the fact that I have TS becomes normal to me. This isn't a bad thing at all, but it makes it so that it really isn't necessary to talk with certain people about my tics.

However, with a new roommate I knew I would have to tell her about my tics. Going to work all day and then coming home to an environment and having to further suppress my tics was simply not going to be an option long term. I decided I needed to be honest with my roommate about my tics from the start. Before she even made the decision to room with me, I told her about my tics. When she asked me what I was looking for in a roommate situation, I told her that I have involuntary muscle movements and vocal sounds called tics and that I was looking for a person who I could feel comfortable being myself around. I was looking for a person who could help create an environment where I felt comfortable, accepted, and not judged in any way. I can't remember exactly what she said to me when I told her this but it was something along the lines of "of course. I completely understand and I wouldn't judge you for something you can't control". This made me feel comfortable straight away.

I wasn't sure if I would have the courage to go beyond this conversation and talk with her more about my tics. Because of the way I had felt about talking about Tourette's in the past two years, I just wasn't sure. However, I soon began watching Britany's videos. In case you haven't seen britney's videos, you can find them on youtube channel here:

Britney talks openly and candidly about her Tourette's in a way that inspired me and gave me the courage to talk with my roommate about my TS in much greater depth. Britney's videos have helped me to feel more confident when it comes to bringing up the topic of my tics and have also helped me to feel less self conscious about my tics in general.  I've always known my tics don't define me, that they're just a part of me but they're certainly not the whole me. They're separate from my personality, my self, and who I am. However, in the past two years I don't think i've felt that this was truly the case very often (even though I knew it intellectually). I was always trying to convince myself that I when I tic around people, they can still see the real me, that they can see me as more than just the girl with Tourette's. I spent much more time trying to convince myself of this than I spent feeling that it was true. I think a combination of watching Britney's videos and coming out from underneath the bubble of college has helped me to truly begin to feel that my tics are just a small part of me and that ticcing in front of others will not change their opinion of who I am.  I could go on and on about how amazing Britney's videos are and how much they have helped me be more confident about the person I am (tics and all!), but I think I better get to the rest of the story. Also check out Britney's amazing blog here:

The other thing that has helped me feel more confident about talking about TS and ticcing more in front of others is the experience i've had so far with my new roommate. After watching more of Britney's videos, I felt ready to talk more openly about my TS with my roommate (just in time for her to move in!). When she moved in I began to bring my tics up in conversation a little more. At first it was just a comment, I joking laughed at the fact that our apartment was so echo-y saying that it was not a good thing for vocal tics because I noticed my tics will echo throughout the apartment. My roommate's reaction was to tell me really not to worry about it. Good sign :)

The next day I asked her if she wanted to accompany me to target and Ikea. She was very enthusiastic and all up for it. That's one thing I love about her, she's so friendly, so easy to talk to, loves to talk with me, and is so far always up for a new adventure such as going out together or coming to Sunday dinner with my high school friend and my family (and is genuinely excited for it too!). We sat on the picnic table outside of Home Depot eating hot dogs and I can't remember how it came up but I found a natural point in the conversation to talk in more depth about my tics with her. I told her that my tics may be a little more frequent and noticeable in these first few months because of it being a period of transition for me (lots of excitement about all the new things in my life but also some stress as well!). I told her my tics will be worse when I come back from camp, that people can "pick up" each others tics, so I may come home with new tics (but the new ones are always short lived!), that tics get worse at camp, and probably some other things too that I can't remember right now. She reacted wonderfully to the conversation. She was engaged and interested while also being empathetic. This is when I learned that she actual has a family member who has tics! No wonder she's pretty good about it. She told me her family member doesn't have vocal tics, but this person's motor tics will come out when they're concentrating on a video game or reading a book without noticing it/ really being aware of it. Always makes me happy and feel more comfortable when I hear when someone has prior knowledge of tics! She knew it was genetic too :)

She told me really not to worry about my tics. This was also before she had heard a majority of my vocal tics though, so she told me she wasn't sure why I was warning her about it so much because she really didn't think it was going to be a problem and that it wasn't going to be something that bothered her. I told her for the most part, warning her was more for me. I feel more comfortable when I know the other person understands my tics and the more comfortable I feel, the less i'll tic.

That night I felt more comfortable letting more of my vocal tics out in the apartment. The thing that made me feel so amazing and accepted was on Friday night. On Friday after work I asked her if she wanted to go out and get some dinner. We had a great time talking and bonding and when we got back to the apartment we talked even more. She told me things about herself and I told her more about me and we realized how much we had in common. She was telling me how she's a very honest person and says what she's thinking a lot, and I told her I really like that quality in my friends. Then she brought up my tics. I was very impressed by this because not a lot of people feel comfortable enough to be the one to bring it up. I'm going to try to write down what she said as close to the way she said it, but I know I won't be able to get it 100%. She said something like "Oh and your tics, they're really fine. They don't brother me. They're just a part of you and they make you special and who you are. I don't want you to have to worry about them. I know you mentioned you have to hold them back at work sometimes, and I want this to be a place where you can come back and not feel like you have to hold tics back here too. I want you to fell comfortable here and around me. I know you haven't done your vocal tics in front of me really, but I want you to feel comfortable doing them in front of me. I don't want you to worry about it."

Outside of camp, my roommate is the ONLY person I have ever encountered who has said something like this to me. She went out of her way to bring up this topic and make sure I knew she wanted me to feel comfortable around her and in our apartment. I was pretty much so amazed that she had said this to me at the time that all I could say was "Thank you so much for saying this. I cannot tell you how much I appreciate it and how much it means to me".  I know I will have the opportunity to thank her in the future as well. I know her words are also a large part of the reason I am beginning to truly feel more comfortable about my tics, and has helped me to begin to feel positive about having tics in front of others. It's hard to explain, but in the past, it's been hard for me for me to maintain my dignity and a positive perception of myself when i'm making silly noises, strange facial expressions, and jerking my body in front of others. For the past couple of days, I've felt more positive about my tics and ticcing in front of others than I have in a long time. Thank you from the bottom of my heart to Britney and my new roommate for helping me to begin a process of healing, self-acceptance, and learning. Tourette's is not something I can control. Even if I can hold back my tics short term, they have to come out eventually. If I go about my day ticcing when I need to, I have less tics, significantly less discomfort/ pain, and no painful and extremely frustrating explosion of tics at the end of the day. Simply put, my life is so much better when I feel comfortable enough to tic around the people i'm with. Coming back from camp this year will be amazing. It will be the first year i'm not afraid to come back, not preparing myself for the intense physical and emotional pain that comes with  leaving the only place where I can tic freely and feel 100% normal, loved, and understood.

Tuesday, March 1, 2016

The Wait is Over! (Well it's been over for a little while now)

The wait is finally over! I have officially been offered and have accepted the research position that I was hoping for. A very exciting milestone. I'm ready to move out of my dorm, get my own apartment and enter the real world. I'm excited, but also a tad nervous which is of course normal. I can't believe my 4 years of college are almost over and that i'll really be entering the real world in a few short months. Hello to two years of paying rent, cooking, working in the professional world, and living the adult life! I'm glad I get these two years to explore myself, my interests, and really enjoy gaining important research knowledge before I apply to PhD programs. I'm super excited because in my new position i'll be getting to work with young kiddos as well as gain valuable research experience! I'll be working in a pretty big lab so another thing i'm excited about is getting to meet the other people and making new friends. I'll also hopefully be living with my close friend from high school (fingers crossed!!!) but if not, I'll probably be attempting to find a different roommate. I think it would be so fun to live with my close friend, but I'm really just hoping that she'll be back in our home state in general. Even if we don't live together, we'll be working in the same general area and we'll get to spend lots of time together. It's been 4 years since we've lived in the same city, and of course I miss her!

I'm so glad I finally have an answer and I know what I'll be doing for the next two years. It feels good to know the path i'm setting out on and have certain ideas of what my life will look like after graduation. It was a but stressful having no idea where I would be or what I would be doing before I had an answer, but now that I do have an answer I can start getting excited about everything that lies ahead. One thing i'm definitely excited about is that I get to start working part time for the lab in just two weeks. I think I would be WAY to excited if I had to wait all the way until graduation to start the training process and start working in the lab. I'm so excited to meet everyone, to work with the kids, and to get even more of an idea of what it will be like to work there. Another plus is that i'll still get to be a counselor at camp this summer, Woo-hoo!!!! I would have been so devastated if I wouldn't have been able to go back for the next two years. Thank goodness I don't have to even think about that!

A Tourette's Story - Living with Tourette Syndrome, A First Draft for My Senior Writing Class

In my senior writing class, we were asked to write a piece on identity. Since it's my senior year and i've now been diagnosed with Tourette Syndrome for 5 years now, I really can't believe it's been that long, I wanted to write my piece on Tourettes and OCD have affected me and my identity. I wanted to come to some sort of conclusion, even if that conclusion was that there is no one solid conclusion I can come to. As I am wrapping up my life as a college student and entering into the real world, I felt like I wanted to do this for myself. Below you can find the first draft of the piece I wrote. I'll be editing it over the next week and the piece will hopefully change to some extent, but here's what I have for now.

Please feel free to comment and let me know what you think! I would really appreciate any and all thoughts, suggestions, or just a comment about how you can relate to my story :)

"Even before I could possibly conceive of the idea of normalcy, it’s strict rules and ideals were pushed upon me without my consent. It was as if the moment I was born, these expectations were written, safely tucked away, in the most primitive parts of my hindbrain, long before I had the chance to weigh in on the matter. The red cherry woman’s exchange dress, the monogramed rattle, the ballet classes: these, among other things, were the staples of a, “normal” childhood where I grew up. Growing up in my family was a strange mixture of privilege and constriction. I was given beautiful dresses,  enough toys to fill my hearts content, a spacious and loving home, and above all I was given the a vast knowledge of the rules that would make me “an exceptional member of society”. At the age of six, I was expected to show proper formal dinner etiquette at the family table, enunciate with clear and correct grammar,  and stand up straight and look adults in the eye when spoken to. I was expected to attend ballet, gymnastics, musical, and etiquette lessons. I was also, of course, expected to put an end to my bad habits and to use my self-control. 

I had a long list of bad habits: sniffing excessively, biting my lips, licking my lips, skipping, compulsively touching objects, and worrying—about everything. I would worry that my mosquito bites had given me West Nile Virus, that the pizza I just eaten had given my food poisoning, that my parents would die in a car crash when they left me home for the night with a babysitter. My mother told me there was nothing wrong with me that a little “self-control” couldn’t fix. She told me I just needed to try harder and I believed her. Each day I practiced using my self control. I tried my best to hide my worries and habits from my classmates, teachers, and friends and although I always knew there was something that set me apart from the other children, I became an expert at passing for normal wherever I went, even in my own home. I never even had to remind myself to behave according to these standards of normalcy. Whenever my bad habits or worries slipped out, my family was right there to remind me to try harder. 

These were the same words my pediatrician used in high school, I simply needed to “try harder”. My doctor was dumfounded when I told her that I was having severe stomach pain because I couldn’t stop swallowing.  For weeks on end, there was an awful feeling in my throat that made me swallow over and over again. It was as if a pulsing electrical wire was tightening around my soft pink windpipe. Every time I swallowed, the wire would loosen, just a few centimeters. A moment of relief. Then the wire would begin to tangle its way around my throat again, strangling me from the inside out. I couldn’t go ten seconds without swallowing large gulps of air. My throat was incredible sore, my stomach felt twisted and full, and I couldn’t describe it as anything else but pure torture. All I knew was that I wanted it to stop. 

My doctor looked in my throat, ran a step test, and when she couldn’t come up with any sort of conclusion she sat me down and said, “I can’t find anything medically wrong with your throat. My suggestion would be that you stop focusing on it and try harder not to swallow so much.” I was enraged. I had come to the doctor for answers, for relief, for at least some support, but had received the answer I had been receiving all my life. I simply needed to try harder to control myself. 

The swallowing spells would last for weeks on end, then they would fade only to return again. In the months that followed, my sniffing “habit” started to act up again, but I also began jerking my head, rolling my eyes, and making squeaking noises. Irrational worries began to invade the inner sanctity of my own thoughts on an hourly basis. One minute I became convinced that killer microbes lived on the inside of my sink and the next I would find myself scrubbing my hands raw, trying desperately to gain some small piece of control over my own  thoughts. I began spending hours trying to combat these irrational thoughts with reality. Nothing seemed to work. No attempt I made to ease the thoughts or to ward off the swallows, jerks, or twitches had any affect. Something so foreign, yet eerily familiar, had decided to hijack my brain to an extent I had never known before. Little swallows turned into barks and screams, little jerks became painful punches to my rib cage, and my worries became an all consuming waking nightmare. I was lost in a body that was so far from something I could even recognize, so far from something that I could call my own. 

Passing for normal was no longer going to be even a slim possibility. My noises garnered so many glances and stares. In the moments where I would lose control of my body, all eyes would turn to me and embarrassment would flood my veins with and quick and sudden jolt. Who was this? Who was this person whose body defied every burning desire to appear as I was—intensely motivated, capable, and passionate about all the things in life I truly cared for? It certainly wasn’t me. It certainly wasn’t  the little girl in the red cherry dress, the young woman who loved life like sweet peach juice dripping on a warm summer morning. It became a daily struggle to try to separate the person I used to be, from this confusing and tangled body. As I sat at my desk jerking my arms, squealing, and barking, I envied my classmates, their still bodies and quiet minds. I envied their ability to blend into the background, to sit through a class or walk down the halls remaining unnoticed. I envied the life I once had. 

When I was officially diagnosed with Tourette Syndrome, you wouldn't have expected my reaction to be one of relief and happiness —but it was. I finally had an answer to why my body refused to listen to me now, and why I my childhood “bad habits” refused to disappear regardless of how much self control I had attempted to use. I even a reason for the constant worrying, and the irrational thoughts that I couldn’t seem to ward off. It turns out, almost everyone who has Tourette Syndrome also has Anxiety and Obsessive Compulsive Disorder (OCD), two disorders that be often be even more distressing that the physical tics themselves. There wasn’t something inherently wrong with my personality; I wasn’t simply a weak or incredibly strange person. There was a physiological cause to my constantly jerking body and the invasive thoughts that accompanied it. 

However, the bliss of this answer was all too temporary. Giving my tics a name didn't put an end to the judgmental glares of the others around me, to the foreign feeling of living in a body that had no choice but to concede to the demands of this powerful disorder. I tried many different medications, and each time I was hopeful that they would dull the intense power that Tourette Syndrome held over me. Some medications made me incredibly tired and moody, and others would help to lessen my symptoms only occasionally. Ultimately, there was no cure. I would go though periods of time where I would think the mediations were finally working, times where my tics and OCD would become barely noticeable. And then, suddenly and without warning, my body would be seized once again, taken back from my control. 

I began to realize that more likely than not, I would be forced to share my brain long term with this demanding and childish disorder. How then would I begin to separate myself from Tourette Syndrome? How then could I share my brain without letting this disorder consume my identity, my sanity? There is no one answer. There is no one single way to protect myself from the daily social and emotional trauma that Tourette attempts to inflict upon me. Instead there are many ways. Many ways to show the world around me that I will not sit back and let a disorder take from me what I hold to be most precious and true. I attempt to look at the skills Tourette Syndrome has given me— the power of empathy, the intense drive to succeed regardless of what obstacles lie in the way, the ability to see the depth and beauty of life in a way some people cannot. Now that is not to say that I do not sometimes feel overpowered, overshadowed. The reality of living with Tourette Syndrome is that some days I will lose my battle to feel secure in my identity. Some days I will feel as if the true reality of myself is hidden, invisible behind the countless tics, twitches, and obsessions that seem to have taken center stage. Some days I will feel as if others see me simply as collection of my symptoms. How do I leave these days behind? Should I? Should I try to forget about those feelings or should I embrace them as a part of living with a complex neurobiological disorder? I cannot say I have an answer. Right now I take life as it comes, try take each experience for what it truly is in that moment, and try to move forward in the best way I know how—by living. "

Wednesday, February 10, 2016

Waiting in Limbo

Well if there's one thing I can say I safely hate, it's waiting. I hate waiting in line, waiting for something to start, or waiting to leave. These last two weeks have involved some major waiting and I'm not a huge fan of it at all! I've applied to a few different research positions, and have had many interviews over the past few weeks. In total i've had 7 interviews now! Three at my number one choice here in my home town, four with a program fairly close by but in another state, and one with a lab that I probably would not end up taking if they offered it to me for a number of reasons. I'm waiting to hear back from them. All of last week I got up each morning to check my email early in the morning only to see each day that there was no email! Turns out my #1 choice had a delay due to the PI being out of town and a big grant that was due, so now i'm supposed to hear back from them this week. The other lab had some major changes so the job is very different now than it was originally. Rather than working on multiple projects with two different people, now I would just be working on one project and it would be a one year commitment rather than a 2 year. The other position is a 2 year commitment. The potential offers are ever changing, and I currently have no idea what i'll be doing next year (or for the next two years). Hopefully I'll hear back this week with some offers. As of now, i'm waiting in limbo and running as many subjects I can to finish my senior thesis.

It's cold and snowing outside. It snowed all day and the roads were treacherous. I saw two cars that had crashed within 5 min of each other. One was off the road the fireman were trying to pry the doors open. I felt like I was on Chicago Fire or Rescue 911. I drove very slowly after seeing that. Then I met my mom at starbucks and we worked together. She told me about her job and how she doesn't like one of the resource teachers. I showed her the map of where all the care packages that my new organization has made have been sent to so far. Now i'm sitting in bed in my dorm room and I think i'll watch a little of the new episode of Chicago fire before bed. I'll take my melatonin and clonidine before though. I tried to get off clonidine, but it didn't work out so well so I'm back on it now. When I got off it, my tics got bad when lying in bed trying to fall asleep and it was just really unpleasant and not a lot of fun. Now i'm back on the clonidine and all is well with sleep.

Thursday, January 14, 2016

New Years Resolution - Exercise

It's a little late, but i've finally decided on my new years resolution! Exercise! Yep, I know i've said it before but this time I mean it for real! Today was my second day following my exercise routine. First and foremost I want it to benefit my heart and give me a long life. I'm also hoping for a decrease in anxiety, OCD symptoms, and Restless leg syndrome symptoms. It's too soon to tell because its only my second day of staying on the routine, but one thing i'm noticing is its not as hard as I thought it was going to be. Its sometimes hard to get myself motivated to do it, but once i'm doing it I feel motivated to try my hardest to get my heart pumping. My goal is to exercise at least 3-4 times a week. Two down for this week, one more to go! Planning on exercising again on Saturday or Sunday. I like doing the cardio routines on youtube. Running hurts my neck and head but so far the cardio routines don't! Woo-hoo!

Excessive Guilt - OCD

Something i've been dealing with lately is excessive guilt. I've dealt with this before and I know it's another symptom of my OCD. It can be very taxing, and like all obsessions it can feel so real. Every time I do something that I, or others around me perceive to be wrong, I cannot shake the feeling of extreme guilt. In the past this has made me "walk on egg shells in the past" because i'm so afraid to do something wrong. I wrong express my true opinions or wont show my personality because i'm afraid of doing something wrong and once again feeling the extreme sense of guilt. It's certainly hard, but I just have to realize its another symptom of my OCD and that I can't let it get in my way or control me.

Also on the more positive side, my interview went so well! I got asked back for a "call back" interview with the head of the lab, so that's obviously a good sign :)

I will be so happy if I get this research position in my home town, but I also know that there are other options out of town as back up options. I just hope that whatever position I get will allow me to take time off for camp. I don't know what I would do without camp. I love being with all the kiddos there and seeing my counselor friends too. Hopefully we'll do another counselor reunion soon :)

Saturday, January 9, 2016

Moving Forward

Well i've been avoiding writing this post for a while now. I haven't written in a while as I haven't really felt the need. When I started this blog it was an outlet for me to express my feeling about having Tourete's, and lately I haven't really felt like I need that outlet. For so long Tourette's was such a big part of my life. The tics or the OCD was almost always on my mind in one way or another throughout the day. For the past few months though, Tourette's has been on the back burner. I guess this is a good thing. Since I finished my CBIT treatment, my tics have improved a lot. I rarely have motor tics that are painful anymore and my vocal tics are quiet for the most part (because the one or two loud ones i'll have every now and then). I've been so busy applying for jobs and figuring out my future, and the tics that I still do have haven't been such a big deal lately.

It's nice for a change to have Tourette's on the back burner, but it is a change and it does feel different.   For so long i've been used to Tourette's running my life and now I feel like i'm finally the one in charge. I'm still working on the OCD. I've made so much progress through exposure therapy and now only have a few things left to tackle before I get my owe place. Its crazy to think i'm going to graduate from college in just a few months and that i'll have my own apartment very soon. I'm excited to have my own place, start cooking meals for myself, and have a real job. Its safe to say i'm really growing up.

I have my first real interview on Tuesday. I'm nervous but also excited. My mom's been helping me prep and i've been practicing a lot for it. I even went out shopping today to find the perfect interview outfit. All my friends have been telling me I need a blazer for an interview. No luck funding the perfect outfit today, but hopefully I'll find out tomorrow.

I hate to say it, but I'm not sure how much i'm going to blog anymore. I haven't felt very motivated to write about Tourette's or OCD because I haven't had them on my mind recently. I've been so focused on school, getting a job, friends, and other relationships. That's the way it should be though. It's been 5 years almost since i've been diagnosed with Tourette's. 5 years! It's crazy for me to think about. Tourette's is always going to be a part of me, but from now on i'm hoping it will be a smaller part of me, almost a side note. I feel like Tourette's, OCD, anxiety and everything has taken time away from me, taken experiences away from me. I didn't have anything close to a typical high school or collage experience and I know a lot of that had to do with my Tourette's and its co-occuring conditions. I feel like it robbed me in a way. It robbed me of so much. I'm ready to move forward with my life and stop looking back though. I read a quote the other day that said "Don't look back, you're not going that way" and it's really so true. Instead of being angry about what my disorders have taken from me in the past, I need to move forward without fear. I need to do what scares me and I need to take life by the horns and face it. Another quote: "You must do the thing you cannot do". Eleanor Rosavelt was pretty much a genius. It's so hard for me to do the things I am afraid of, but its important to do them or else my fears and anxiety will rob me of even more. I don't know when I will blog next, but I do know that in the mean time i'm going to do what I think I cannot do, just like Eleanor Roosevelt says.