Tuesday, August 18, 2015

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.

Monday, August 17, 2015

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.

Thursday, August 13, 2015

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.

Wednesday, August 12, 2015

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 :) 

Sunday, August 9, 2015


Today I showed this talk to my mom after describing to her the concept of "Yes and". I told her I thought it would be useful for her to use this concept with her students at her new job. She's taking a full time position for the first time since my brother and I were born. I told her the piece was about Tourette's and she told me she really wanted to see it and is disappointed I didn't show it to her sooner and haven't shown her other talks or various educational things i've found on the internet this summer. 
After I showed it to her she told me she loved it and wanted to show it to her students this year. A few minutes later she said these words verbatim: "I think i’ve learned more from you than from anyone else in my life”. I then told her I'm really glad she told me that. For the rest of the day she used the "Yes and" concept on multiple occasions with a big smile on her face and told me she was going to keep using this concept on a regular basis. 
This is probably one of the very few times in my life that i've felt like she may understand Tourette's and that this may be her way of showing me some support.

Saturday, August 8, 2015

Another rough tic day

Another rough tic day. Currently watching Netflix under my weighted blanket with plenty of sensory fidgets by my side to try to help calm down the tics. The blanket seems to be whats helping the most right now. I can feel it starting to work its magic smile emoticon
Also recently i've been feeling upset or overwhelmed when I have a lot of tics. This isn't new to me, but it's been a while since i've had such frequent and significant tics so its hard to be reminded of what its like and have to live like this again. I know it's probably just the time of year and a waxing period (starting a new school year is always hard, and transitions in general are hard for me), but it's hard for me to have to go though this again. I start to feel overwhelmed and truthfully a little fearful when I feel things escalating with my tics and when I start loosing control. As i've said before, it can be a pretty scary thing to lose control of your body. 
I'm just trying to remind myself that I know this time of year is always a more challenging time with my tics and that once I get settled in school things should calm down. Also another thing that seems to help is telling myself in a calm and slow voice "You're just fine" which is something one of my camp friends told me to try. It seems to be helping keep me calmer in terms of the emotional side of things. Hoping the tics calm down soon. The weighted blanket and sensory fidgets are helping.

Friday, August 7, 2015

Stickered up!

Massive head ache tonight from muscular tics, head tics, and breathing tics. Also missed a good chunk of the ending of the movie my friend and I went to because my eyes were involuntarily squeezed shut. Gotta love Tourettes....Guess it's that time of the year where my tics are reved up before school starts. Transitions and anticipation is hard, but I know its temporary and things will calm down when I get settled into school. 
On a more positive note, today I spent time with some amazing kiddos in the hospital and got "stickered up" by one tough 3 year old battling cancer. She was having a rough day due to chemo, but was all smiles when I walked in and when I asked her if she wanted to play. She loved putting the ponies on me and when she accidentally ripped one she would put part of the pony on my hand and say "half a pony!" which became a cute little game. I love knowing I helped distract her from the pain. She was smiling and giggling and having a great time while we were playing. I also love holding her little sister. They are both such cuties. I love making a difference. Can't think of a better way to start the day :) 

Wednesday, August 5, 2015

Genuine Care and Support from my Camp Family

Tonight I wanted to blog about something that happened after camp. I wasn't sure I was going to blog about it, but I decided I ultimately should because others may have experienced something similar and it may help them to hear that someone else has gone though it. Also I wanted to blog about it so that I can look back later and remind myself how amazing my camp family is :)

After many months of CBIT therapy, I had pretty much gotten rid of my tics that involved hitting myself in the chest, hitting myself in the stomach, and hitting other things such as tables and walls. I was of course worried that at camp these tics, along with the others I had targeted via CBIT, would resurface seeing all the other people ticcing. I was preparing myself for this to happen, but surprisingly enough even though I saw a lot of people with hitting tics at camp, my hitting tics stayed pretty much under control during the week of camp. I had a couple of hitting tics throughout the week, but they didn't hurt and were pretty mild compared to how they used to be. Last summer at camp I bruised my stomach from hitting tics, and this summer nothing like that happened, which I was grateful for!

Mainly my vocal tics were the ones that were triggered at camp. My vocal tics were pretty active because they were triggered by all the other tics, but they didn't hurt and I was just happy my motor tics weren't as bad as they were last year. I did have a couple of motor tics triggered, of the ones I can remember, there was a tapping tic and a flicking tic, lots of facial and head tics (but that's pretty typical for me), and one night more of my motor tics were triggered from sitting in an audience at the talent show but that is also something that happens regularly at home. Sitting in an audience is a major trigger for me, probably because it reminds me of school. My co-counselor was sitting next to me and asked me if I needed a break to get up and walk around because she noticed my tics were getting more active than she had probably seen them all week, but I told her I was used to it and that this was a usual occurrence for me. I wasn't in pain, and it wasn't really bothering me all that much. Plus, I wanted to see the talent show and was preforming with one of my campers, so I wanted to wait for them to call my name.

Anyway, back to the point of the story, my tics weren't nearly as triggered at camp as I thought they would be. There were a few times I felt the premonitory sensation (the feeling I get before I tic) becoming pretty powerful, but that's also something that always happens to me at camp and something I was prepared for.

On the last day however, when emotions were at their peak, things changed a bit. It had been a very emotionally intense week for all of us. This year at camp had been one of the best by far. The connections I saw my campers making, the things my campers said to me over the course of the week, and the emotions of these events all cumulating at once at the closing ceremonies was a lot. I'm not a person who finds it easy to cry in front of others. I rarely ever do. At camp I never cry at closing ceremonies or when leaving camp, but boy do I cry when I get on the plane and get home. The emotions of leaving camp are very intense. Some of the most intense emotions I have felt in my life.

This year at camp, I felt all those emotions in the moment, at closing ceremonies and seeing all of my campers crying and the other counselors crying, I started crying too. Writing this I am being brought back into the moment, and am feeling all those emotions again. I feel the emotions for my girls. I feel them being taken away from this magical place and having to go back to the real world where people stare at their tics and don't always understand. I know what it's like, and what they go though at home so it's very hard for me to watch and to know exactly what they feel.

I loved getting to meet my girls' parents and seeing all of them off. In the past i've had to go to the airport with the bus and I don't get the chance to say goodbye to every camper, meet every parent, and have a more gradual and slow end that feels like closure. This year I got to experience that which was absolutely amazing. After all the campers were gone, all the counselors that were still there sat in a circle and went around telling stories from camp. The stories were beautiful, funny, serious, etc. I even told a story of a moment I found particularly meaningful that happened at camp.

When we were nearing the end of the circle activity and I knew it was almost time to leave, I started feeling pretty badly in terms of my tics. How my tics work is that if i'm engaged in something such as  engaging in conversation with my campers,  being responsible for making sure my campers are safe in the pool, making sure my campers get my meds, or am in any position really that requires me to be responsible of others or of the situation, I'm so focused on what i'm doing that I really don't tic all that much. Yes, maybe i'll do some vocal tics, facial tics, or some other motor tics along the way but they aren't ever anything that would compromise my ability to take care of my campers or to do what i'm supposed to be doing. It's the same thing in the hospital. When I'm volunteering with children who are receiving chemotherapy or a bone marrow transplant, i'm so focused on playing with them and keeping them busy that I barely tic. Now once I get in the elevator or back to my car and am no longer focused on whatever I was doing before, that's when more tics start to come out.

So when I was engaged in closing ceremonies, saying goodbye to my campers, and making sure they all got off safety, I was ticcing a bit but not very much. When they were all off and when the down time started, well it's essentially the same thing that happens when I'm done volunteering and I walk out of the building and back to my car. The tics start to come out more. However, because of the increased emotions and the crazy busy and active, yet amazing week I had just had, my tics were more intense. The premonitory urge inside of me started to feel very strong and very powerful in a way that made me feel almost sick inside. I don't really know how to describe the exact feeling, as its something that's very hard to describe. For me when my tic sensation becomes very powerful, the best way I can describe it (although I don't think this description gets anywhere close really to truly describing what it is to be inside my body when I'm feeling this way) is it feels like a surge of electricity or power from a electrical socket that surges up from the base of my stomach, though my chest, and to my throat and neck. It feels very powerful and makes me feel shaky afterwards almost like the sickening feeling you get under your skin when you have a fever. That's not how it feels for me every time I tic of course. But that is what it feels like when my tics get bad due to overexcitement, strong emotions, being triggered at camp, or when i've been holding back tics.

So this is how I started feeling near the end of circle time. I felt each urge to tic as a strong surge from an electrical socket coming from the base of my stomach, up though my chest and I started to feel pretty bad. As one of my friends once said.... I wasn't feeling too hot. I wasn't doing any tics that were out of the ordinary for me. Just my typical vocal tics and motor tics. But with each tic I felt this awful sensation.

Afterwards, when it was time to leave, I got my luggage together and was waiting for one of the other counselors to pull up the car. I was standing with one of the other counselors who is my friend and I was telling her I wasn't feeling very well. She said to me "I know." and I said "how do you know?". She told me she knows because I got real quiet. For those of you who know me at camp, I hardly ever get quiet because i'm always talking! That gave me a little laugh, but also another thing I love about camp is that others know when you're having a hard time or what's going on because they have been though it themselves and are so observant about these kinds of things. These are things that my friends at home would never know just by looking at me or observing me, but at camp it's pretty incredible to be understood on this kind of level. This same friend later told me she knows I never eat anything with my hands and just assumed it was my OCD. It's incredible how at camp the people around me just know these things from observing me because they know all about tics , OCD, and anxiety. They have lived it. Anyway I keep getting off track from my story.

I started having a lot of anxiety about ticcing in public at the restaurant we went out to. Even though I was surrounded by other counselors, my anxiety started getting pretty high. Because my emotions and my tic sensations were all high, I think this triggered my anxiety as well. It was just not a great time for me and I couldn't seem to shake the anxiety. Another thing I love about camp is when i'm having these kinds of feelings and this kind of anxiety, there's no need to keep it to myself, because everyone around me understands. I told one of the other counselors about my anxiety and she handed me a stress ball to help. She happened to have one that another counselor made for her. Playing with the stress ball was definitely helping at first.....and then it started triggering my hitting tics (note: I don't have tics where I hit others, just myself. For me it's about the feeling I have inside of my body and to get rid of that sensation I have to hit the area where I feel it, such as my chest or my leg. Occasionally I'll have to hit or kick a wall, but for that one it has to make a specific hallowed out noise so it has to be a wall or a table or something hard.)

I had gone though the whole week with my hitting tics under control, and then for some reason the stress ball triggered my chest hitting tics. I started hitting myself in the chest with the ball. Ironically I had seen a kick board act as a trigger for others at camp earlier, and now the ball was acting as a trigger for me.

That night when we were driving back from dinner, the tic sensation started to get really bad again. It had been bad on and off since my campers had left, but so far even though the tic sensation was worse, my tics hadn't actually gotten to the point where they became a whole lot worse. The car however is another major trigger for me, similar to how sitting in a classroom or in a lecture is a trigger for me. I think it's a trigger because its a small space and it's a space where you sit passively typically and isn't a space where you're able to be focused or engaged in something. As the tic sensation became worse and worse, I started hitting the ball against my chest more and more, and eventually it got to the point where I couldn't stop and I had to hit harder and harder each time. All in all, it was the first time in almost a year that I had lost control. As a person who always wants to be in control, it's hard for me to loose this type of control over my body in such an obvious way.

Before I had even noticed that it had gotten to the point where I had lost control, one of my close counselor friends said to me in a way that only she can say, "is there anything I can do?" I've heard her say this to other counselors when they've had trouble with their tics, but she's never said it to me before. I've never been the one whose needed for others to ask this question, and for me this was hard. It was hard that I had to be the one who needed others to ask, but in the moment having her ask was the most comforting thing. She is able to ask this with the kind of pure genuineness and care for others that is very rare. It made me feel safe and accepted. I was hitting so hard, that I broke the stress ball and dropped it on the floor and some of the flower was leaking out. I started apologizing a lot about getting flour on the car and breaking her ball and  then I started to try to look for the stress ball in between hits and she said "I don't care. Really, I don't care. All I care about is you." Again she said this in such a genuine way. I knew truly she meant what she said beyond any doubt. I still felt bad though, because that's just me, but I knew she truly didn't care. Her attitude and the way she tried to help made all the difference in how I felt. Another counselor offered me her jacket to put in between my fist and my chest, and although in most cases I would have said I was fine, I knew how hard I was hitting and said yes I would take the jacket. It helped a little bit, but what helped the most was how much everyone truly cared and wanted to help me.

I'm the type of person who finds it very difficult to accept help from others or to reach out to help, because it's hard for me to be the one in the position of needing the help. Im very independent in dealing with my symptoms and with everything else in my life really, so its hard for me to not be 100% in control. My tics started to calm down. All in all I would say it probably only lasted 10 minutes, but to me it felt like an eternity. When I stood up when getting out of the car it was pretty painful just to stand and try to walk and I found it hard to catch my breath initially when I stood. I really hadn't realized just how hard my tics had been making me hit myself. After a few minutes though of walking, I was fine. I took some advil, and felt better.

I haven't really lost control like this in front of other people before and needed others to do something like hand me their jacket so I could minimize the pain or ask if there is anything they could do, so it was very new to me to feel this vulnerable in front of others. Even though in reality compared to some of the other counselors at camp (including one of my co-counselors who had a hitting tic that was much worse on a regular basis and caused significant visible bruising) it was still difficult for me. As I said before however, what helped the most how much everyone cared about me and the incredibly genuine way they expressed this care.

I feel lucky that my tics never interfere with my ability to do things, to take care of campers, and to volunteer at hospitals. I feel very lucky that the worst my tics get is that occasionally I'll hit myself in the chest repetitively. They are not tics that interfere in any way with my ability to do my job as a counselor, to be a student at a challenging university, and to be left in charge of children at the hospital because the only times my tics get bad like this are when i'm either alone doing something very sedentary, in an audience or in class occasionally, or in a car.

The rest of the weekend, my hitting tics didn't ever get that bad again, and the hitting ones were actually pretty calm after that (although my vocal tics were the ones that were pretty active the rest of the weekend). However a few times my motor tics got a little bit more active and I would hit myself a couple of times, stomp, or kick something with my foot.

Each time my motor tics acted up a bit, the other counselors who are all my close friends from past years (expect one who I got closer to at the weekend this year!) helped me to feel so much better. One time I lost my balance a little bit because of a leg tic and one of the other counselors standing next to reached out to help me catch my balence and asked me if I was okay in the incredibly genuine and caring way that only she can do. Another time I hit myself in the chest a couple of times and the new counselor who I bonded with more during the weekend gave me a hug and said "I love you!" to make me feel better. I absolutely loved that :)

And on the lighter note, they even helped me feel more at ease about my vocal tics. I had picked up a few new vocal tics at camp this year. By the end of the week I was doing an "arf" tic and then it developed into doing a many art's consecutively like how they do it at camp when they sing the "I would walk 500 miles" song. Many times after I would do that tic, the other counselors would go "aroooohhh" in response like how they did it in the song. Also I had gained another new vocal tic where I would say "nuh-uh" and after that one many times other counselors would say "yuh-huh" in response. It made me feel a lot more at ease because when they would respond to my tics it would remind me that they accept me 100%, and don't mind my tics at all. It reminded me that i'm in an environment where tics are a part of life and can even be funny or fun instead of something that's annoying or a nuisance. All in all, you can see why I love camp and why we all call each other family :)

A post for myself (positive note of the day and notes to my future self)

Positive note of the day:

Woke up late and walked to starbucks with my dog. It was a pretty hot day, like it is most of the summer days where I live. I got my usual, grande iced mocha (1 shot, 2 pumps) and as usual the barista's know my order so when I walk in they say "your usual?". Gotta love that they also sometimes have my drink ready for me before i've finished paying. I got my dog some water for the dog bowel and sat down to drink and eat my sandwich. I then contacted some of my camp family because I really want to stay in contact with them throughout the year. So far, we're all staying in contact much more than in the past which I'm loving. It makes me feel more connected to them even though they are all in different states. One of the people from camp I have gotten closer with is in my city though, which is so great. I even met up for coffee with her after camp when I was having some trouble with my mom understanding TS. Having her close makes me feel like i'm not so alone.

I got back and did GRE work and got almost all the questions right. I actually like some of the geometry because its kind of like solving a puzzle. I was exhausted though at my GRE tutoring session!

Also today I got a very special email which makes me feel like i'm making a difference :)

Not much happened today, but I thought I would keep up my positivity challenge. My OCD thoughts were starting to come back a little more today, so i'm trying to keep positive. Also, since it's my last year of college, I've starting thinking about how much my life is about to change after this year. With these positivity notes i've been writing, I realize I will look back on them 20 years from now and think how different my life was back then. Walking up to Starbucks from my house with my dog, getting special emails from people whose lives i've touched, connecting with my camp family: these may all seem like mundane events now, but in reality they are very special and I know I will look back at my 20's and realize even more how special these little things were. It is very strange to think I am directly communicating with my future self. That my future self will read these words (at least I hope so) and that while reading this I will know how events unfolded and how things turned out. I'll know if I got into a Ph.D program, if I took time off to work in a lab, which friends i've stayed in contact with, and even further down the line if i've been married or have had kids. It is such a strange thought when you really think about it, and especially when you're thinking about it at 2am.

Anyway, enough of my ramblings. Future self, however things turned out I'm sure they turned out that way because that's the way they were meant to be. Don't be disappointed with the things that didn't happen, because i'm sure there will be some of those things. Be happy with the things that did happen and know how ever things turn out, I am accepting of it. The one thing I don't want is too many regrets. I know i will hold back from doing certain things, and I know I will have some regrets, doesn't everyone? But I want to do the things that I truly desire to do, and I don't want society or expectations of others around me to influnce me too much or prevent me from doing what I truly want to do at that time. If I look back and say, "I regret not doing this or not doing that", just remember that I did what made me happy at that time and that's all that really matters. There is no need to regret not doing things that I wouldn't have wanted to do or that wouldn't have made me happy at that time. I was happy with the things I did, and that's all that truly matters.

Yes, of course it's great to step outside of your comfort zone, and I want to try to do that even more my last year of college. Rock climbing, going to the pool party, driving on the highway, even going to camp for the first time and going to the camp reunions for the first time,  these are are things I have done that are out of my comfort zone and every time I was nervous but was so glad in the end that I did it.  Each time I do something that makes me step out of my comfort zone, I learn that I can do it and can succeed in whatever i'm doing. That makes the next time even easier. Exposure and taking risks (well risks for me!) is a good thing.

Monday, August 3, 2015

Rock Walls and Highways

Positive note of the day:

Today I went rock climbing with my friend who just moved into my neighborhood and her friend who is going to be a freshman at my college in the fall. I was hesitant at first because I'm not super athletic and haven't been rock climbing since I was little. I had no idea I would have such a great time. The first few times I went up, I didn't go up very far and was pretty scared. The rock climbing facility we went to has a self belay system which means there's no one holding the rope. The rope is secure and will catch you, but it doesn't help pull you up and you can't lean back on it. If you slip or decide to fall back, you'll fall about a half a foot before it catches you, so when you're climbing it's all you and all upper body strength.

I kept at it though, and each time I got a little further up and also got a little more confident. By the end, I made it almost all the way up to the top, to the same point that my friend who rock climbs all the time got up to. It was a lot more fun than I expected it to be, and I got up a lot higher than I thought I could. In the beginning I was convinced I would never make it up even half way, and by the end I did way more than I thought I would have been able to do. I even bouldered pretty high up (which is where you climb the wall without the rope). It was fun watching my friends climb and then also talking with them in between climbs. I watched a little girl climb who looked like she was having the time of her life! She was so good at climbing too and I could tell it was something she really enjoys and something that gives her a lot of confidence. I finally understand why they want all the kids to at least try to rock wall at camp! It really is such a confidence boost.

After I did the rock climbing, I felt confident enough to practice driving on the highway. I drove all the way on the highway to my dentist appointment and even though I was anxious I told myself it would be just like the rock wall. The first couple of times I would be anxious, but each time I would do a little more and feel a little more confident, and eventually I would be driving on highways with no worries at all.

Also last night I went to a pool party with a bunch of my sorority sisters. We swam, hung out, shopped, and had dinner. We're all getting together again on Friday to go to a concert at the zoo. Looking forward to Friday and I'm sure it'll be a great time. I'm so glad I ended up going to the pool party. It was a great time.

Sunday, August 2, 2015

Strategies for Tics: Non-Medication Interventions

NOTE: Below is a list of various strategies that help me when my tics are occurring more frequently. These strategies are things that personally help me as a person living with Tourette's. They are wroth a try, but I can't guarantee these things will work for you or help your tics calm down. I can tell you these things help to decrease my tics at times (not all the time, and they are not foolproof) but overall every person is different and something that helps one person might not help another. If your tics are getting to a point where they are difficult to live with or to control, the first thing I would recommend is seeing a neurologist. Your neurologist, psychologist, or psychiatrist should be your first line in treatment and suggesting interventions.
I hope some of you find these suggestions helpful! Please let me know if you try to implement any of them and how they affect you!

Distraction/ Focused activities- 

       Whenever I'm ticcing a lot, distraction and focused activities can help my tics get back under my control. Talking or telling a story takes up a huge amount of brain power! Ever tried singing while also saying the ABC's backwards in your head? It's pretty much impossible because the amount of brain power it takes for your mouth to form words is taking up too much space in your brain. The brain has less of an ability to misfire (aka tic) if your talking, engaged in conversation, telling a story, etc. Also focused activities like dancing, drawing, video editing, or playing an instrument takes up just as much if not more brain power. So, when my tics get bad I try to focus myself on something that will take up a lot of brain power.

Note: For vocal tics specifically chewing gum or sucking of sugarless cough drops can help to distract the mouth from tics! 

Sensory Toys-

   Sensory toys seem to help my tics. For me the kinds of sensory toys that help the most are ones that provide both tactile input and auditory input. So for example, I have a sensory toy that's basically a long chain of plastic blocks all connected. When I move it around in my hands I get both tactile (touch) feedback and auditory (sound feedback) from the clicking noise it makes. I also have quite a few others that give this dual feedback such as a fish that makes a popping noise and a chain of small wooden blocks that make clicking noises as well. Not sure exactly why they help, but they help lessen the tic urges in my body when I play with them.

Here's the website where I got most of my sensory toys (its a site for autism sensory toys and I found it though my mom because she works with a lot of kids who have autism, but most of the items on the site work great for TS as well!): http://www.autismshop.com/games-playthings/games-playthings-fidgets-sensory-items/?sort_by=position&sort_order=asc

Here are a few of the sensory toys that I have and find helpful:

Tangle Relax toy :No auditory component, but great for tactile input
What Zit : tactile and auditory input (clicking sound when blocks hit)
Wacky Tracks  : great for both tactile and auditory input (this one is my favorite!)
Roller Fidget: great for tactile
Pop Animal: fantastic for both tactile and auditory
Colorfall: Great for those who might like more visual input

Sensory Soothers -
Milk/ Soothing Drink- Not sure why but drinking milk or another soothing drink when my tics are bad really helps me! Cold milk usually works best for me, but cold water to a lesser extent can help in a pinch. It really depends on the person though. For me I find the plane milk the most  soothing, but for something a little fancier, try this great little recipe!
    Vanilla Milk:
    - 2 cups 2% milk
    - 1 tablespoon agave nectar    - 1 teaspoon vanilla extract  
Place all ingredients together in a mug or pitcher and stir well. Then place the mug/ pitcher into the microwave to warm. Also it can make a nice frosty drink with a few ice cubes and a blender! 

Weighted Blanket- 
My weighted blanket really helps my tics calm down, especially for night time. The weight is helpful most nights, depending on my sensory needs that day. Some nights i'll really feel the need to have something heavy on me, other nights i'd rather not. I have to listen to my body that day and depending on how i'm feeling the weighted blanket can help A LOT! It calms my body down incredibly and helps me fall asleep faster. I ordered my blanket online though sensa calm, but you can also make them yourself them depending on your level of craftiness!

Where I got my weighted blanket: http://www.sensacalm.com 

DIY weighted blanket videos and articles:

Cold compress/ cold pack/ cold pillow pad- for me cold sensory input seems to help my tics, so cold compresses and a cold pillow pad I have both help. Here are some links to some items that are helpful if you find cold or warm compresses to soothe your tics as well.

Chillow - Memory foam cooling pillow pad, requires you to fill it with water, but i've had one before and it works well and is pretty inexpensive too. There are other products that are a bit more pricy but I think may work better to keep a cooler pillow.
Chilloh- Another brand of cooling pillow pad that's a bit more expensive but might work to keep the pillow colder than the chillow.
Therapearl - can be heated to be hot or hold and also can double as a tactile sensory toy! 

Changing the environment- 

For me, when i'm ticcing a lot it may be environment dependent. For example, I tend to tic a lot in classrooms, lectures, while sitting in an audience, when i'm in a quiet environment, a stressful environment, and also strangely enough while in the shower. So if i'm ticcing a lot, one of the first things I do is I assess the environment and ask myself, am I being triggered by something around me? Am I in an environment that would cause me to tic more? If so, and if I am able to, I try to change the environment.

For example, the other day I noticed that I started ticcing more and started to become uncomfortable because of this. I looked at the environment around me and realized that my tics may have been triggered because I was in a quieter and more enclosed environment. So I got up, walked outside in a more open and louder area, and my tics started to calm down. Later that day I was walking around a lot and started to get hot and tired, which started to make me tic more. I decided it was time for me to go inside and sit in the air conditioning which helped decrease my tics.

Also sometimes I start ticcing a lot, look around at my environment, and can't seem to find anything specifically that I can think of that would be triggering me. In this case, I get up and change the environment anyway because even though i'm not able to discern what seems to be making me tics worse, changing the environment will tend to help to some extent regardless, even if that means just getting up, walking around for a while, and then coming back.

Putting your body in a different position- 

This may just be unique to  me,  but something that helps me when i'm ticcing a lot is changing the position my body is in or putting my body in an "different" or "odd" position. So if my tics are bad while i'm laying in bed, if I put my pillow on the opposite side of the bed and lay backwards for a while this will help my tics. Or if I hang my head off of my bed so that i'm essentially upside down this will also help. Whatever I can do to get my body in a different position seems to help. I'm not sure why this helps but my best guess is that it gives my body different sensory cues and serves as a form of proprioceptive sensory input. I'm also not sure if it will work for anyone else, but it might be worth a try.

Also giving your body different sensory signals in general may be helpful! Some other ideas of giving your body different sensory signals than those when you're just sitting or standing are doing yoga, running, jogging, jumping rope, fast walking, swimming, playing a sport, dancing, swinging, yoyo-ing, or whatever other crazy (or not so crazy!) bodily activity you can think of to get your body active and engaged in movement!

Decreasing frustration/anxiety-

When i'm ticcing a lot, sometimes I get frustrated with myself and pretty anxious with the fact that i'm not able to control my body. Its pretty frustrating and anxiety provoking to not be able to stop yourself from doing something that's annoying, painful, and often times embarrassing. So sometimes with each tic i'm not able to control, I get more and more frustrated and anxious,  which in turn of corse makes me tic even more and it becomes a vicious cycle. I tic, I get frustrated and anxious, I tic more, I get even more frustrated and anxious, and then I tic much much more, and repeat. You can see how this might be a problem. 

Not many people know the emotional components that come with having TS. They see the tics, but what they don't see are the emotions that come with living in a body you can't always control. They don't see the anxiety, the embarrassment, and the frustration that comes with having Tourette's, but this side of TS is no less real and no less important to address than the tics themselves.

So whatever I can do to  decrease my frustration and stress level will help stop this vicious cycle and help to decrease my tics. This is another reason why distraction, focused activities, and calming sensory activities help to decrease tics. These activities help us take our mind off the frustration and anxiety that tics bring. Listening to music may also help.

Another thing that can help is talking to the rational side of your brain by using coping statements. I start out by telling the rational side of my brain "being frustrated and stressed will only make my tics worse"and giving myself self assuring and soothing statements such as "i'm just fine", "it's okay that i'm ticcing right now", and "this will soon pass, it always does". I give myself a little time to tell myself everything's okay, and then I move on to calming, focused, distracting activites to take my mind off the tics.


Cognitive Behavioral Intervention for Tics (CBIT) is a behavioral intervention for tics, it's non-pharmacitical, and is proven to be as affective or even in some cases more affective than mediation for tics. It doesn't work for everyone, and it's not a cure, but for some people it can significantly decrease the severity and frequency of tics. It worked very well for me, and I still use the strategies I learned in CBIT when I feel like I need to.

I still have tics of course, and I still have bad days, or bad weeks even, but overall my tics are less frequent and less severe than they were a year ago before I started CBIT. CBIT has worked better for me than any mediation has, and the best part is NO SIDE EFFECTS!

A lot of the behavioral interventions i've listed above are strategies I learned in CBIT. CBIT is not only about targeting tics with a competing response, but its also about learning how to manage your tics, finding strategies, and assessing your environment, your triggers, and finding various things you can alter in your environment to help your tics. The ideas of distraction/focused activities, changing the environment, and deceasing frustration and anxiety are all environmental components of CBIT that I have learned both on my own and with the help of my CBIT therapist. The competing response component of CBIT is important, but the environmental assessment is just as important as well!

You can read more about CBIT and watch videos on CBIT on the Tourette Syndrome association website here: http://www.tsa-usa.org/Medical/CBIT.html