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 :)

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