More Before School Preparations: Senior year!

Today was my second meeting of the semester to talk to my professors about Tourette's! Two down, just one more to go! Both have gone excellently! This year i'm really making an effort not just to give my professors the basics, but also to give them some insight into what it's like for my to live with Tourette's and how they can make me feel more comfortable in the classroom. Sometimes its not all about helping them to understand what a tic is so they can properly ignore it. It's also about making them feel at ease about my tics and helping them to know how to make me feel more at ease about my tics.

One thing I've experienced in the past that makes me feel uncomfortable, is when a professor simply avoids eye contract with me all together for the entire semester pretty much. If i'm ticcing a lot, which I most always am in class, some professors think they will make me uncomfortable if they look at me. I might think they're looking at my tics or staring at me. However, this is not the case. What does make me feel incredible uncomfortable is if a professor avoids eye contact with me all together. This makes me feel different, avoided, and like the professor is ignoring me as a student all together instead of simply ignoring my tics. So this year I'm making sure to mention to my professors that I want them to make eye contact with me like they would with any other student, regardless of if i'm ticcing a lot. I tell them about how other professors in the past have avoided eye contact with me and how that makes me feel. Both professors so far that i've brought this up with have been extremely receptive about it. The more relaxed I am about telling my Professors about my tics and the more open I am about it, the more relaxed they are and the more questions they ask.

I want my professors, and others in general, to be comfortable with me and with my tics. I want them to be comfortable asking questions or bringing it up, instead of being so afraid they will offend me that they tip toe around the subject and avoid me all together. This is the exact opposite of the way I wish to be treated. As Brad Cohen says in Front of the class in response to his Principle's question of what the teachers and school can do, "I just want to be treated like everyone else".

Because I was relaxed and open about my Tourette's, the professor asked me questions and brought up some very interesting topics as well! He had read Oliver Sacks's chapter about the surgeon with Tourette's, which I had heard about but have not read. He told me I should read it and that he finds it fascinating how the surgeon didn't tic during surgery. I told him how I experience a similar thing when I'm focused and engaged with children such as when I volunteer at the hospital. It's like the part of the brain that's responsible for sending out the extra signals is too activated and engaged doing something else that it can't tic. On the other hand, I told him when i'm sitting passively or listening to a lecture or a movie I tend to tic more even if i'm highly focused on what i'm listening to because its a different kind of mental process or engagement. He also brought up that once he had a student in his class with Tourette's who had a tic where he said "Bull shit" and he responded to the students tic by saying "I know! This is bull shit! Even if the other students don't know it!". Hahaha, I laughed and told him I thought that was really funny! I love how relaxed he was about the whole thing. So different from those professors who just stare at me the whole time I'm telling them about Tourette's as if they were afraid of me. I've only had two professors do this, but boy does it make me feel uncomfortable.

On another note, going on campus to meet with my professor was the first time i've been on campus since the end of the school year in May. One part of me was glad to be back on campus and enjoying being in the familiar environment. The campus was beautiful like always and being a senior, it feels like i'm at home on campus. A freshman even asked me where the quad was and I told her I was a senior and don't remember what the quad even is! I also stopped by the starbucks and everyone from last year was there and was glad to see me. The manager was behind the counter and when she looked at my drink she looked up and said "I know this drink!". I told them I was glad to be back on campus but sad as well because this is my last year there. Another part of me felt very nervous. I was having a hard time with my tics and was doing a lot of vocal tics on campus. The feeling I get before I tic and while i'm ticcing was very strong and like that dropping/electrical feeling I get at the base of my stomach surging upward which was making my tics way worse of course. I felt nervous walking around on campus ticcing and tried to avoid walking close to people. A part of me worries that this is what it will be like walking around on campus more frequently this year because of how bad my tics are right now and how much stress I'm going to have this since i'm applying to graduate school.

Also tonight I found out that two of my sorority sisters are going to be in one of my psychology classes this year that I'm planning on speaking to about my Tourette's. This makes me so incredibly nervous because I'm worried they'll think i'm faking. I've never spent time with either of these sisters and the chapter is so big so they haven't seen me ticcing a whole bunch. They haven't been around me when i've had louder vocal tics and i've never had louder vocal tics in chapter events because if it's a day where i'm ticcing a lot I just won't go to chapter or i'll step out of chapter if I can't hold back my tics. Class is a whole different story because I can't hold back my tics in class otherwise I'll miss all the information because i'm focusing on holing my tics back so much. Being in class and fighting back tics the whole time would be useless because I wouln't learn anything or get anything out of being in class. I know they don't know this about Tourette's and i'm worried they will think "Oh well i've never seen her tic like this before so she just be faking". I wish I didn't care what they think so I could just tell the class and not have to be so nervous about it. I know I have to tell the class and I don't really have a choice in the matter if I want to be successful in the class. There's no way I could sit an hour and a half without doing vocal tics and also pay attention to what the professor is saying. If I would plan on doing that I might as well not show up to a single class and just read the text book, which would be a huge waste of my tuition.

I just have to tell myself that I have to tell the class if I want to have a successful semester. The classroom environemnt is a huge trigger for my tics, and I can't simply not tell the class about my Tourette's because i'm worried of what two people will think. Ultimately it doesn't matter what they think. They can think i'm faking all the want, but I have really do have Tourette's and I l really do ive with it every day and whatever they think doesn't change this fact. They don't understand how environment dependent tics are, they don't understand how much I fight back against my tics when i'm in certain social settings and what fighting my tics does to me later on in terms of the rebound effect. They don't understand the concept of being triggered by the environment or the classroom setting, they don't understand the waxing and waning of Tourette's, and they don't have to understand these things. Regardless of if they do or don't understand, I'm the one who has to live with Tourette's every day and i'm the one who has to be in that classroom doing the tics and dealing with the embarrassment, frustration, and other emotions that ticcing brings. I'm the one who will feel 100% better if the class knows about my Tourette's and if i'm able to feel okay about having tics in class rather than stepping out every 20 minutes to let 10x more tics out than I would have had in the first place had I not tried to fight them.

What matters in the end is how I feel. I understand triggering, environment dependency, waxing and waning, holding back/ fighting tics, the rebound effect, and all the other complextites of Tourette's. Regardless of if other people understand these things or not, they are real and they are part of the reality of living with Tourette's. Tourette's isn't just an involuntary movement or sound that happens comply uncorntolably at random intervals. It's so much more than that. It's so much more complicated. While I wish others understood the complexities of Tourette's, I understand that unless you live with it or have a close friend with it you will not understand these things.  I can't let my perception of what others may think control me and control how I live my life. I am making assumptions about these two girls (that they will judge me, that they won't understand, that they will think i'm faking). I'm doing the same thing that I don't want them to do to me,  make judgements and unfounded assumptions. I need to stop making these assumptions and just live my life without judgement of others and what their perceptions may be. Who knows, maybe one of them has a brother with Tourette's, a cousin with Tourette's, a best friend from high school with Tourette's. I just need to stay strong, stand up for myself, and do what is right for me this semester considering how my tics are acting up right now and may stay at this level for a while since this year is going to be a stressful one with grad school applications.

Expanded Reality

Today I met with an amazing professor. She has not only made me feel incredibly welcome in the class, but our interaction is helping me to feel more confident about Tourette's and my tics going into my senior year. I expected her to be understanding since it's a course about how disability is portrayed in the media and in literature, but I didn't expect the incredibly amazing response I got when I sent out my usual introduction email.

This was her initial response to my email ""Thanks for contacting me. I’d love to meet with you. I have some familiarity with Tourette Syndrome and welcome the opportunity to find out more from you and discuss accommodations. If you choose to disclose in the class, it would be a great learning opportunity for everyone. If you choose to maintain privacy, that is entirely fine too. I’m sure you know what works best and is most comfortable for you." 

As I said before, just reading this email helped me to feel like my tics are not a nuisance or annoying, but instead am adding something valuable to the class just by being there. Additionally she has now asked to include a piece about Tourette's (a video clip or a film, either Front of the Class or I have Tourettes but Tourettes doesn't have me) which i'm excited about! Also, she asked me to speak to another class she teaches about disability. 

This is the email she sent to me about that: "Might you be interested in talking with that class about Tourette’s? That class meets 4 to 5:30,  Monday-Wednesday. I think you’d enrich their learning experience tremendously." 

Just these words: "I think you'd enrich their learning experience tremendously" and to hear this from someone older and wiser than me gives me such a great feeling. A feeling of pure acceptance and kindness. 

Today when I met with her she didn't even blink when I did my louder vocal tics. She wanted to do everything she could to help me  in the classroom. She asked questions such as "What can I do to make you feel more comfortable in the classroom?" and I loved it when she agreed that the students would just become used to my tics and told me that they would accept it as their "expanded reality". I like that phrase. It implies that i'm responsible for expanding their world, their minds, and their concept of how things are/should be in the world. 

I think one of my camp friends put it perfectly: "That is freaking awesome. What an amazing response."

Just two more professors to meet with now. Hoping I get two more amazing responses! Although I don't think their responses can even come close to topping this one.

Telling my Professors about Tourette's- Senior Year

What a wonderful email I received today! I've been having a lot of really rough tics as it's that time of year that tics really act up for me, so there could not have been a better day to get this email as I am feeling quite overwhelmed and upset at the moment with the amount of tics i'm having. 

Every semester I send out an email to my professors to ask them if there's a good time we could meet before classes start so I can tell them about my Tourette's and also  I discuss when might be a good time for me to talk to the class about my tics. 

This semester i'm taking a course called images of disability in film and literature and in response to the email I sent to the teacher of this course, I got this in return: 

"Thanks for contacting me. I’d love to meet with you. I have some familiarity with Tourette Syndrome and welcome the opportunity to find out more from you and discuss accommodations. If you choose to disclose in the class, it would be a great learning opportunity for everyone. If you choose to maintain privacy, that is entirely fine too. I’m sure you know what works best and is most comfortable for you.

My office is on the medical campus You could come here, but that’s an extra trip for you. Since I live near campus, it’s very easy for me to come there – or meet somewhere near campus.

I am waiting to hear about committee meetings next Monday or Tuesday, so I’m reluctant to set an appointment with you just yet. Could I contact you tomorrow? Meanwhile, could you let me know where you’d like to meet?

See you soon" 

Such an amazing thing to get an email like this especially when I'm feeling vulnerable. It makes me feel like instead of being a nuisance or annoying, I am adding something valuable to the class.

Talking Tourette's

The summer really is winding down. My moms back at work, my brother leaves for his first year of college in 3 days, I'm taking the GRE (graduate record exam) for the first time in 'll be back in school in 1 week, and i'll be back on campus and starting my senior year of college in a little over a week.

Today as the summer is beginning to come to a close, I spent time with one of my closest friends. She's been my friend since 7th grade.  She's known me and been there to support me when I didn't know I had tics, when I had barely any noticable tics at all, when my OCD got so severe that I couldn't touch other people's hands, doorknobs, and when I washed my hands so much they would bleed, when my tics first started and when I had no explanation to give for why I was making noises and movements, and when I had my diagnosis and my tics got to the point where I was yelling out in class every single day and punching myself and the things around me. She's been there for me when not even my parents were able to support me.

She's stood up for me, and for others with Tourette's. I love that when someone tells a Tourette's joke, she tells them her best friend has Tourette's and it's not something to laugh at. She asked questions when I was first diagnosed and still asks questions today so she can learn more about what Tourette's is and what it's like for me to have it.

Spending the day with her today was bittersweet, because I know I won't see her for a couple of months since we go to college in different states. Regardless of that, I know that whenever we see each other again it's like we've never been apart.

Today, I talked about Tourette's with her quite a bit as i'm going into the school year with the goal of being as open as I can be about my TS. I told her about my new goal and she was surprised to hear that I'm not as open about my tics with everyone as I am with her. I told her sometimes it can be the elephant in the room because people in my sorority know I have Tourette's because they see me post about it on facebook or have heard about it from others, and yet i've never directly told them about my TS or talked with them about it. So when i'm ticcing, they just ignore it and while I do mostly appreciate that, sometimes I just feel like it's the elephant in the room, or I'll feel like if i'm ticcing badly I won't want to be around them because I don't know how they react. She reassured me that my tics don't bother her even when i'm having a lot of tics or when my tics are bad that day and that she of course doesn't judge me at all because of my tics. She told me maybe its because she's used to my tics, but that someone with a cold or stuffy nose bothers her more than my tics do and that I should just try to not worry about my tics and just go hang out with others when my tics are bad instead of letting it hold me back from being with them. Even though I already know this, I really appreciated hearing it from her because I really think I just needed some reassurance at this point. It helped SO much! I always get anxious about tics and what others are going to think before the start of school regardless of the fact that every year I receive so much acceptance and support from my professors and the other students at my university when it comes to Tourette's and educating others about it.

Also the last time I hung out with her, we went to the zoo and it was a pretty bad day for me in terms of my tics. I was having a lot of vocal tics and the tic where I punch myself stomach was acting up a lot. I would stop wherever I was standing, and punch myself in the stomach pretty hard a number of times. When we were at the zoo together and when she saw it she said "That looks like it hurts" and I told her it does. Today she brought up that tic again and asked if it was better. She told me every time she saw me do it at the zoo she would cringe not because she was bothered by it or anything like that but because it looked like it hurt so much. I told her it's been a lot better and that i've actually barely had it in the last week. The fact that she asked me about it and told me this is something I love because it lets me know she cares. She know she can bring it up even though its a tic that's more serious. When I have these kinds of tics in front of others I sometimes worry what they are think. My OCD tells me that when they see these kinds of tics they won't want to be around me any more because it's something that's too much for them to be around or that it will make them too uncomfortable and they will shy away from being my friend. I know for most people this is not true, but OCD worries can be so powerful. So to hear a friend talk so openly and express care for me like this surrounding one of these more significant tics is something that helps me more than I can even say. It gives me hope that if I choose to be around some of my other friends when i'm having a day where my tics are bad or i'm having more of these significant tics that they will express the same care or will just ignore it and won't mind.

Overall it was a great day. We walked to lunch at a coffee and crepe place near my house, we played with my dog and cat, decorated boxes and did a lot of fun crafting with she really enjoyed (she said we should have been doing this all summer and that she really loved it and was having fun!), and just talked and spent time hanging out. I love how we've gotten to the point where we can casually talk about tics. When we were decorating the boxes, I ticced and hit the table a bit and at the same time she accidentally scooted the table back. I then said casually "I was the one who moved the table! It wasn't your tic!" and then she joked with me when I did one of my tics by saying "bless you!" when I ticced because she knows how often others say bless you when I do a tic because they think its a sneeze. This year my goal is to have even more people at school who I can get to this place with, where we can casually talk about tics like it's no big deal. I don't want people to tip toe around me and think they can't bring up my tics because I may get offended. I realize that this will take work on my part because in order for others to be comfortable talking about my tics I have to bring it up first and talk about it causally and like its no big deal to let others know i'm comfortable with talking about it. My friend today suggested that I try telling stories about camp or bringing it up casually on conversation in a natural way but also just to be around them when i'm having a day where my tics are worse. All good ideas :)

Also I just sent out my annual emails to my professors asking them if there's a good time we could meet before classes start so I can tell them a little about Tourette's and how it will effect me in the classroom. When I sent out those emails, I know school is close! Nervous and excited as always :) 

Positivity Challenge!

I've decided I'm going to start a positivity challenge! I will look for one positive thing in every day and write it down/ blog about it! I will also try to write something I am grateful for each day.  I'm going to try to do this for as many days as I can! I may skip some days, but i'm going to try my best! 

If you train your brain to look for the positives, your brain will automatically start doing this and you will be a happier and more positive person overall. For anyone who wants to take the positivity challenge along with me, please send me your positive moments and I will post them on the blog! 

July 28th 2015- 

Today I reconnected with an childhood friend. I'm  excited because she moved in a few houses down from me coincidentally. I'm hoping this is the start of a beautiful rekindled friendship. We both have differences we've had to deal with in our life and today we went to the baseball game together and  talked through all 9 innings. We both opened up to each other about what it's like to grow up being different and it felt really great to be open with her. It was so nice to feel safe and comfortable opening up to her. I hope she felt the same way when she opened up to me. It was nice to share such similar experiences with each other. We have a lot in common and i'm really looking forward to spending more time with her over the next month or so before school starts. 

Today I am grateful for the fact that she moved in so close to me and we get this chance to reconnect and share our experiences. I'm also grateful that camp gives me an easy opportunity to open up to others about my tics. When my friend asked me how I got involved with the camp I was able to easily open up to her and tell her that I got involved because tics run in my family and that I have tics too. I'm also grateful that i'm not the only one in my family who has TS. The fact that my cousin has been diagnosed with TS too and that there is so much OCD in my family helps me to feel so much less alone and less singled out. I'm not the only one in my family who deals with this and that simple statement helps more than I can express. And of course like every day i'm grateful for my camp family who remind me on a regular basis I am never alone. They are always there for me and have my back. I am VERY VERY far from being along. I am surrounded with love, support, friendship, family, and acceptance. 

There's puppy on the plane!

I haven't been able to write for the past week or so because things have been pretty crazy since i've been back from camp. My mental obsessions and compulsions have really been acting up and i've had to implement a lot of strategies to help them calm down. I've also been very busy with work, extracurriculars, and studying for the GRE/ preparing to apply to graduate school. This is the first time i've been feeling ready to write and it's 12:40pm. 

I didn't want to write about too much tonight, but since i'm in the mood I wanted to tell a light hearted story. After camp I hung out with my camp family in Atlanta. We all stayed together in a suite and had the absolute best time. Even though my tics were pretty bad (worse than they have been in a while) and even though my anxiety and OCD were pretty bad as well, I felt so supported and loved. I will definitely write more about the weekend later! There are SO many fun stories, but for tonight I wanted to tell the story of the plane ride back home because its cute and quick. 

My vocal tics had been acting up A LOT during the week of camp and even though they had started to calm down near the end of my time in Atlanta, they were still kind of bad. So on the plane I knew I was going to educate the person sitting next to me about Tourette's even though I was going to try to sleep most of the way. The man who sat down next to me on the plane was speaking in spanish on his phone, so I pulled up the spanish version of "What is Tourette Syndrome" from the TSA website on my phone in case he didn't speak english (http://www.tsa-usa.org/imaganw/What_is_TS_English.pdf). They also have this brochure in Chinese, Vietname, Korean, and Japanese in case you need it which i've found comforting, particularly on planes, even though I've never needed to use it. 

When he got off the phone I introduced myself and asked him if he spoke english. He said he did, so I didn't need to use the brochure. I then told him I just wanted to let him know that I have a condition which make me twitch and make noises that I can't control. I had been ticcing while he was on the phone, and his immediate reaction was to smile and told me he understood and that it was no problem. He then, however proceeded to ask me if I had smuggled a puppy on the airplane in my backpack!! Hahahaha. I laughed and told him no, that was was just me, and that that's a noise I make because of my tics. I'm not sure if he understood what I was saying because he kind of still looked confused! I think it was either the language barrier or that he didn't believe me and actually thought I was trying to make up an excuse to hide the fact that I hiding a puppy in my backpack! 

I had a good laugh and texted my camp friends after the flight telling them the story. They said they were proud of me for telling the person on the plane about my TS (although for me that's really no big deal! I do it all the time, even if sometimes I am nervous initially). I also think they got a good kick out of the whole puppy confusion!

Telling The Guy I'm Dating About My Tics! :)

Well I finally did it! I told the guy i'm dating about my tics. It's a GIANT weight off my shoulders, and it ultimately wasn't that big of a deal at all. I told him last night very casually while talking about camp. We sat down to eat some dinner and when he asked how my day was I told him it was great because I sent in my application for my 3rd year as a counselor at the camp I've been volunteering at in the summer. I had told him a little about the camp before, but this time I went into more detail. I told him that I'm looking forward to seeing all my campers who i've made such close bonds with. I told him that I bond with them and they really look up to me because I had tics when I was younger too, know what it's like, and am able to give them advice and be an older role model who has been though what they've been though.

I also told him that I still have tics, but i'm able to suppress/ hold them back more than I was able to when I was younger. I told him that it's like a cough or a sneeze, you can feel it coming and hold it back. I told him it's kind of like when you're in a movie theater and don't want to make noise so you try not to cough, and then when you get out of the theater, you just cough a lot! He said he didn't know it was like that. I told him that's why he hasn't really seen me do any tics and he agreed that he hadn't noticed anything and said he didn't know I had tics.

He was really great about everything I told him about my tics. He was very understanding, very positive, and even asked me a question ( I love when people have the courage to ask questions, instead of just sit there, smile, and nod). He tried to be compassionate and sympathetic by telling me that sometimes his eye twitches so he knows what it's like to not want other people to see that, but that ultimately you can't control it, so you shouldn't be embarrassed. He also said that he understands that people might judge you when they shouldn't because you're twitching or moving , but they shouldn't judge you because its not something you can control.

When I was telling him I made sure to stress that it wasn't a big deal, that my really good friends who've seen my tics a lot say they don’t even notice it anymore and I also made sure to tell him it's made me into a more compassionate person and understanding others differences.

After I told him, we studied together and when it was time to leave, I walked him out, he kissed me goodbye, and told me he would text me the next day. Sure enough, he texted me today and asked me if I wanted to go out to dinner with him. Dinner tonight went well and I felt much more relaxed around him. I am so glad I told him. I feel like now I can be so much more invested in the relationship and be myself more. I also now know that he is accepting of the fact I have tics and still wants to go out with me. It's still going to take me a while to actually feel comfortable ticcing around him, but i'm getting there! This was a huge step for me, and I'm so glad it turned out so well. Thank you to everyone (shout out to Brandy especially!! You helped me so much in terms of taking this step!) for supporting me through this and helping me to have the courage to tell him. I feel so relieved and happy. Everything in my life is just going right :) I am in such a good place right now, I couldn't ask for anything more. I feel so blessed :)

Is it time to tell him about my tics?

Last night the guy I have been going on dates with asked me if I would like to go out with him officially. I said yes smile emoticon 

So now I can say that we're officially going out and that for now I am no longer single. I like so much about him. I really like how open he is with me and that he is not afraid to show me who he truly is. I also really like his personality in general and how he is a really great conversationalist. We always have something to talk about and it's always engaging and thought provoking to be around him. I like that he wants to spend time getting to know me and he really seems to like me. He gives me so many complements and tells me how cute I am, how much he likes spending time with me, and how happy he is that he met me.

Today he opened up to me about some things that were more on the personal side, and even though I was hesitant to, I opened up to him more too. I told me that I have sensory issues and OCD traits. He seemed really okay with it and didn't seem to think much of it at all. It didn't seem to affect how he feels about me and after I told him that he asked me to get ice cream later tonight and hang out more. This gives me more confidence that if I told him about my tics, it wouldn't affect how he feels about me either. There is still that nagging thought in the back of my head though, that fear that he will not accept me. I know it's just the fear that has been instilled in me by my parents that is making me feel this way. I know intellectually that he probably won't reject me because of my tics. The fear and the emotion is so real though. I think at this point I just have to take a leap of faith and plunge off the diving board. I think the sooner I make the leap, the easier it will be to be myself around him.

I'm not sure when exactly i'm going to take that leap and tell him, but I am hoping I will have the courage to do it soon, maybe even tonight when we get ice cream together. I plan on telling him in a very casual way and not making a big deal about it. I'll keep you guys updated on what I decide to do! Please wish me luck :) 

Telling a Friend Who i'm going to Live with Next Year about Tourette's

Talked to my friend (who is a sister in my sorority) tonight, and it went great! I She asked me to live in an on campus apartment with her for next year so I thought it would be the best thing to tell her about my tics ahead of time. I told her in a casual way and in a way that made it seem like no big deal, while also letting her know what my tics are like and about my vocal tics. She didn't bat an eye. She wasn't phased at all. She treated me just like she always does. I told her people usually get used to it pretty quickly just like you might get used to someone who has allergies and coughs or sniffs a lot. She smiled at me in a very reassuring way and told me that she's sure that's what will happen with us and that she isn't worried about it at all about it when it comes to housing next year. So we will be living together next year as long as everything goes as planned :) 

Can't wait to spend more time with her and get to know her even better! 

A Professor with Tics!

One of my psychology professors has facial tics! So cool! I love seeing people with Tourette's / tics making their way through life, succeeding, doing what they love, and never letting their tics get in their way!

I haven't officially talked with her yet about my Tourette's and she hasn't told me she has tics, but as someone who has TS and researches it, I know tics when I see them.

I'm going to meet with her next week to talk with her about my TS. I originally wasn't going to, because it's a bigger class, but I've been having a tic of raising my arm/ hand and supressing it in that class has been interfering with my concentration, so I decided I'm going to meet with her so I don't have to worry about it.

I will update later about how that goes.

Yesterday I told another professor and a class about my TS, and like usually it went so well. The professor was amazing and I absolutely love her and how she mad me feel so accepted and comfortable about my tics. She told me she had a grad student who hiccuped and that everyone got used to it very quickly. She was very warm and welcoming. Her class is developmental neuropsychology and since that's what I want to focus on in grad school, I couldn't be more excited for her course! She says it's her favorite course to teach, so that's always a great sign :) 

A Strange Encounter about TS while getting food

This week is a strange one. I've never had a stranger out in public comment about my Tourette's in my life and then suddenly it happens twice in one week. Craziness. I was getting food and did a facial tic and the server asked me "what was that?" I hadn't even realized I did a facial tic so I said "sorry, what?" 

He then said "that thing you did with your face." So I told him I had a medical condition. He responded with "oh I thought you were upset with me". I assured him that I wasn't upset with him and I had tics which were involuntary. I guess he felt kind of awkward and didn't know what to say next so he said "do you cuss people out? Like in me, you, and Irene?" I told him no. I later looked up the movie and found out it's not even about Tourette's. it's about multiple personality disorder.... Lol i just laughed. Definitely an interesting encounter

Talking at the Medical/Nursing School about Tourette's

Today was the day! I spoke on a panel with a neurologist and nurse to about 50 medical school students and nursing students! I was originally told there were going to be about 200-400 people there and was relieved when I got there to see there were only 50. The fact that there were less people made it easier and less stressful for me, but at the same time it would have been great if I could educated even more people. That's okay though, 50 people is a lot and educating people about Tourette's ins't simply a one day thing! I educate people on a regular basis! 

Anyway, today I was excited to help future doctors and nurses understand more about Tourette's! I got tons of great questions and answered them as honestly as I could. I talked about my diagnosis process, CBIT, medication, how I tell my classes about my TS, my experience in school with TS, and more! One lady asked me if I could drive, and even though I told her I could, the neurologist wasn't so sure that I convinced her, lol. 

Afterwards , an older man came up to me and told me that he enjoyed the talk, that he now knows TS is so much more than swearing which he didn't know before, that he thought I was really in control of my life, was doing great a great job dealing with living with Tourette's, and that he loves the way I live my life. That made my day! 

At the end, my neurologists nurse told me that she thinks everyone really enjoyed having me there and that I was really helpful. I felt really confident on stage and like I could just be myself. I'm proud of myself for spreading awareness and talking openly and confidently about my Tourette's in front of such a large group. Hopefully I made a difference :) 

Being Rejected by Someone Else With Tourette's

I haven't written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven't felt secure enough to write about it until now. It was too painful and made me too upset to even think about writing about. But it's been a full year and I feel like I have enough distance from it now and strength to let let it hurt me anymore. 

A year ago, I was a sophmore in college who had come back to school after break. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself. Of course I was coming back to incredibly accepting friends. 

On campus this year, I met another person with Tourette's. This was the the first person I had met at my college who also has Tourette's. The girl was a year older than me and I was so excited to meet another person with TS on campus! I told her I have TS too! 

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about my experiences with TS, but after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong? Now that I had opened my mouth did she think for some reason that I was just a really lame person who she didn't want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as "cool" as she is.

Later on, I decided to send her a message. This message was kind and nothing intrusive at all about TS or anything else. It was just a friendly message. Even though she had seen the message though, she never responded. When I saw her on campus, she looked the other way, and she never talked to me again. Instead she purposefully avoided me. I had been rejected for the first time since middle school and not by just anyone, by someone else who has Tourette's. It reminded me of all the rejection I had faced when I was young because I was "different". It reminded me of the girls at sleep away camp in middle school who had bullied me and made fun of me. It was very hurtful to feel these feelings again. When I told my friends, they tried to comfort me and tell me that the girl I had met was the one who was missing out. They told me I was a great friend and that it was her loss that she didn't want to get to know me. Even with their comforting words, I still felt so hurt. To be rejected by someone who knows what it's like to be different and who knows what it's like to have TS was hard.

This year, I have seen her on campus a few times already. I feel different about it though this year. There's a building on campus where I like to get food, but it's one of the buildings where she has a lot of classes and i've seen her there twice. A year ago, I would have stopped going there to get lunch just so I didn't have to see her. I wanted to hide from her. Now though, I'm not going to give her that kind of power over me. I went to get food in that building today anyway even though I knew I might see her there. I did in fact see her from a distance, but it didn't stop me or make me feel as if I was "less" because she had rejected me.

I am confident in who I am. I have so many friends with and without TS who love me, care about me, and value my friendship. They like me for who I am. They spend time with me because they enjoy my company, like my personality, and they don't mind my tics either. They see me for who I am and don't find anything wrong with that. One person, regardless of if they have Tourette's or not, is not going to have the power over me to make me feel bad about myself because i'm not going to let them.

Today I had a thought that I had never thought of before. When I saw this girl from afar I thought "Thank god it was me who she rejected, and not one of my campers". I know how strong my campers are and how resilient and beautiful they are, but it still made me want to cry thinking of them being rejected by this girl like I was. I thought of each of them and how I would never do something like that to one of them or any other child who had Tourette's or was "different" in some way. Thank god it was me and not one of my girls is all I could think. It would hurt me to much to think of them being rejected by someone else with Tourette's. I know many of them have been through what I have and have been bullied or not included by their peers at some point in their life. To think of them having to go through this and then later on as mature young adults to have all those feelings brought back by someone like them who also has Tourette's and has also felt rejection made me very emotional. I never want this to happen to them. I can only hope it never does.

Answering Questions about Tourette's!

Today was my annual meeting with my RA. Every year the RA's at my college do something called a 1 on 1 with each of the students on their floor where they meet with them and get to know them. I had already e-mailed my RA about my Tourette's and I did my little 1 minute Tourette's speech for my floor last week. At the end I said "if anyone has questions, feel free to ask!" Today during my 1 on 1, my RA took me up on the offer and told me she wanted to learn more about Tourette's. We talked about regular things first like how i'm liking my Junior year, what classes i'm taking, and what other things i'm involved with on camous. Then she asked me several questions about Tourette's such as "does everyone with Tourette's have vocal tics?", "is it genetic?", and "is there treatment?" I was more than happy to answer all of her questions and was really glad she asked them. I love it when people want to learn more about TS, and I love spreading awareness!

After I was done answering her questions she said she was really glad that I was open about my Tourette's and willing to talk about it. She had a friend in high school who had Tourette's but never got the opportunity to ask him questions about it really and was really glad to learn more about it.She said she really likes getting to know more about people and the experiences they've had in their life. I just love people like that! :)

My Story! My life with Tourette Syndrome.

My Story: My life with Tourette Syndrome

(A picture of me ticcing at 3 years old)

Q:What is your name and how old are you?
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.

Q: How long have you had Tourette Syndrome?
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: Living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette's, you can do anything that anyone else can do. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.

Q:What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette's just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.

Q:What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.

Q:What are your goals in life?

A: Next year I'm going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others :) 

My Professor this Semester is on the TSA Scientific Advisory Board!

Today I was looking around on National TSA's website and since i'm starting to look into PhD programs I was looking at the Medical and Scientific Advisory board. I was scrolling down the list looking at the various universities the board members are affiliated with when I saw the name of my university! 

The woman's picture looked very familiar too! It took me a few seconds to remember where I had seen her before and then it hit me, she's one of my professors this semester! I've never actually met her in person, but I had seen her picture when I looked up her e-mail. I'm taking her Biological Psychology class this semester and I was ecstatic that I had just come across the fact that she's on the TSA's scientific advisory board!

Well I guess this means I won't be needing to explain to her what TS is! Of course I'll still e-mail her and tell her I want to meet with her before classes start to explain my accommodations and let her know about my TS, but it will be so nice to have a professor who really understands TS and did long before she met me! This is going to make my first week of school this semester just a little easier, and anything that makes my first week even a tiny bit easier makes a big difference considering how rough that first week can be with the seemingly constant explaining I end up having to do. By the end of the week i'm usually exhausted, frustrated, and thinking "if I have to explain Tourette's to one more person I think i'm going to explode!!". Lol, I get through it every year though and this year i'll have one less professor i'll have to explain it to 

This is the second thing that's happened that's given me a really good feeling about this year. First my RA e-mails me back telling me she had a friend in high school who had Tourette's and now one of my professors is on the TSA Scientific Advisory Board! I think my first week of school is going to be a lot easier this year with all this and with my amazing friends standing by my side 

My Annual TS Message to my RA

Sent my annual message to my RA (the student who is technically in charge of our floor in the dorms) letting her know about my TS. I do this every year. My tics have never caused a problem in the dorms, but I still tell my RA each year just to make sure she is aware of it on the front end. 

I have no idea if there would have been problems or not if I had not told my RA each year about my TS, but I really prefer to be safe about it rather than putting myself in a difficult or uncomfortable situation (which has happened a few times when a professor/teacher/or other person i'm around hasn't been told about my TS). Anyway, my RA responded to my e-mail, and like all of my RA's in the past, she sounds amazing and accepting.

Here was her response " Thank you so much for getting back to me! I had a friend in high school who also had Tourette's so I am familiar with it, but there are definitely more things I can learn from you! Looking forward to meeting you soon!"

It always makes me so happy when someone i'm trying to educate ends up already having known someone with TS

A bad week of tics and telling more people about Tourette's

My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette's to them all makes my tics so bad! Right now just about everything is setting them off, including the awful cold I have....perfect timing. I'm also supposed to be doing sorority recruitment which is another thing that's making my tics worse. Today though with my cold, my tics, the total over stimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like i'm missing out, but I really didn't have a choice.

Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop I was ticcing so much. My grand big sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was okay. Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grand big and my big sister in my sorority about my Tourette's during this recruitment officially, even though they both had already suspected I had it. It was interesting because for the most part I tend to tell people about my Tourette's before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason. Anyway they both had seen me ticcing far to often in the past so they wouldn't have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a light hearted way "Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?" I knew I hadn't told her about it obviously, but it just seemed like a light hearted way to say it and not make a big deal about it. She said "no" and so I proceeded to tell her. Then she told me she had noticed them before in psyc class when we sat next to eachother which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.

Then I told my grand big in a quick and joking kind of way a few days later. My grand big and big were both upset about how some things were being run in sorority recruitment so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues. My grand big then said "Right, Jen has Chron's disease..." and I added in "and I have Tourette's Syndrome, but I don't know if you knew that already". She responded in a similar way my big did by saying "I know. I've spent enough time around you to know." This caught me kind of off guard. I was expecting her to say that she didn't know, or maybe had noticed but didn't know what it was. I'm glad though that she had enough previous knowledge about what Tourette's was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.

Anyway back to the first story, when I had pushed my body way to far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn't want anyone to see me like that. Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it's really exhausting. When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn't come by 5 minutes earlier. When she came out she could tell something was wrong so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn't ask about it further. Then she asked if I wanted to go back in and we went back in together.

I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn't want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them. I am hardly ever afraid to tic in front of people, but like I said my sorority has challenged my ability to be okay with my tics. In a social environment where it's about fitting in a lot of the time, my tics stand out so in the past I have tried my best to hold them back in front of my sorority sisters. During recruitment though because I was spending so much time with them, holding my tics back for that long really wasn't an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations which is something along the lines of "I can't help it, I have a neurological disorder, and if they don't accept me because I have a medical condition that I can't control then they aren't worth my time anyway." So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette's, and I have been plesently surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family. It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn't get it she suggested that I might be able to take over alumnae relations chair when my grand big graduated. She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold. My grand big kept checking in on me to make sure I was alright, wasn't too tired, and didn't need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister and the fact that she and a lot of other people in the sorority officially know about my Tourette's doesn't change how they feel about me or act around me. I feel so glad that I opened up to them and participated in the weeks activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette's.

Meeting my First Person At my College who also has TS!

I just met my first other person at my university who has TS. It makes me feel less alone on campus to know someone personally now who has TS on campus too. Her tics are more mild than mine, and she told me she doesn't really talk about it with other people at school really, but still it makes me feel less alone and it was definitively cool to be walking on campus with her for about 5 minutes (until we had to go separate ways) getting to talk about TS and how we have been involved in our state's TSA's. She was in the first group that ever got trained as youth ambassadors which I think is really cool, especially since when I found out about the Youth ambassador program I was too old for it. I told her how i'm a counselor at camp twitch and shout hoping she would be interested, but she said that if she ever went to camp she would come home crazy. Which is true, I did come home crazy with my tics really bad, but it only lasted a few days until they went back down to their normal level.

Anyway, I thought it was just neat to meet her and talk with her for those 5 minutes. When I think about it those 5 minutes were enough. Enough to make me feel like I am not the only person at my college who has TS and has to deal with tics, enough to let me know I am not alone even though most of the time it feels like I am the only one. It was a nice 5 minutes, a nice conversation, and a nice connection. Even though it was only a 5 minute connection, it was a connection none the less. 

I told myself I wasn't going to message her on facebook afterwards though because I didn't want to ruin things. I didn't want to ruin those 5 minutes, and I know I get upset if I message someone and they never message me back, but then I remembered that I know someone she might know from her hometown TSA and I just couldn't help myself, I had to message her and see if she knew the person I know otherwise it would have nagged at me and nagged at me until I messaged her. Thanks OCD...... anyway, I seem to have this hope that she will message me back and that we will become friends because she just seems like a really cool person regardless of the fact that we both have TS, but I think its probably more likely that those 5 minutes we talked will be the only 5 minutes we ever talk one on one even though we are both on the disability awareness committee and both have TS. I guess I feel this way because I have been feeling pretty low lately and don't want to get my hopes up. I miss my two best friends who of course go to different colleges than I do, I miss the closeness I have with them and feel like although I have a decent amount of friends, I am having trouble finding that closeness in college. I feel like a lot of my friendships here can be very surface level and like I can't talk to them about deeper things and have them understand me like my two best friends from home do. I miss closeness, and understanding, and the ease of making friends that I experienced at camp twitch and shout. It's just not that easy here at college. It's hard. 

Having to Convince Myself that Others Do Not View my Negatively Because of My Tourette's

Today my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished. Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette's. I told her that she has my permission to educate all future guests about my Tourette's and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette's which she found helpful as well.

She must have done a very good job educating our guest poet, for today because I had no troubles at all. Professor B didn't even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class. I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high pitched squeaks, a sound that sounds like "uh" "uh" or "ah" "ah", and my tic where I say "woof". I really appreciated this positive experience with a new professor who I had never even met before personally and was very impressed with my professor's ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling though when i'm having a lot of tics in a class or when I meet a new professor or adult that I haven't previously talked with about my Tourette's that the professor or adult has an automatic negative feeling towards me and my tics or is annoyed by them or doesn't like me because of my Tourette's. I think I have this nagging feeling not because it is true in any way, but because of what my parents told me around my initial time of diagnosis. They told me that I shouldn't tell anyone about my Tourette's because it will close doors for me, those who I tell will look down on me, and that it will effect the way people view me and cause them to look at me in a negative way.

 Since my initial time of diagnosis I think my parents have changed their attitude about Tourette's a lot. They now know that most people do not react in that way and it is very rare to find anyone who will react in that way. I know though that especially my mother and my grandparents, although they have made a lot of progress, still harbor feelings like this that others will look down on me for having Tourette's. For a 16 year old who was just diagnosed, hearing this from my parents was very damaging and hard to take in. It has taken a lot of time, thought, persuasion by others, and positive examples of others who have TS, and positive experiences of my own for me to overcome the effects that was caused by the things my parents initially told me.

Their words still affect me though, even now, even after I have had so many positive experiences that tell me the exact opposite of what they initially told me. I have had many professors and other adults tell me that they are inspired by my ability to advocate for myself and others, that they admire my strength, and that my Tourette's does not change the person I am. The fact that I tic, even when I am ticcing a lot, does not change who I am as a person and does not change how others view me. I have to remind myself of this a lot though and it is not something that I naturally know or feel. Since my first experiences with my Tourette's and adults in my life was so negative, I have to almost constantly remind myself of this. I frequently have to call to mind the exact positive experiences and exact positive words that others have said to me about my Tourette's to convince myself that others do not look down upon me or view me negatively because of my tics. This may also be my OCD coming into play here, especially the trying to convince myself part and having to "replay" positive events in my head as well, because those tend to be typical aspects of the mental compulsions of OCD.

 I just wish though that I knew in my heart that others do not look at me negatively because of my tics and that I did not have to try to convince myself  that others see me for who I am and not just for what I have. I feel like I know intellectually that it's not true that others see my tics and my Tourette's as something negative or look down on me for it, and I have so many experiences that confirm this. I just wish I knew this with more conviction emotionally as well.