Welcome to our first e-newsletter! Many of you have probably read my bio on our website about what it was like for me growing up with Tourette’s, while others are checking us out for the first time. Well, I want to take this time to not bore you with repeating myself over and over, but give you something interesting to read each quarter. Whether it’s tips on how to interact with someone who has TS, tips in general (I love helping others), advice, or just stories about me, I want this to be worth your while! SO… let’s dive in…
I’m going to be honest with you… growing up with TS felt like the end of my world. Most times I tried to candy coat it. How I felt, what was going on. And to be honest, that’s why I blocked out most of my younger years because it was just too confusing and painful of a time. Not just for me, but for my family as well. It was rough. Anger, depression. These were the things I was dealing with. “Why did I have to roll my eyes 20 times in 5 minutes?!!” “OWWW! That hurts!!” “What is wrong with me?” “Ugh. I’m so weird. People probably think I’m weird too. I’m going to try to be as inconspicuous as possible.” “Don’t look at the teacher when she is asking for an answer. Don’t raise your hand.” “Please please don’t call on me!” “Crap. She called on me. Oh my gosh.. oh my gosh… I don’t know this answer… what am I going to do?! Stop freaking out, Kelsey! You’re so stupid!” “Just say something!”
Yes, school was rough. Even tougher because I was so hard on myself. And when I did something wrong… I felt terrible! I put so much pressure on myself… but for what? I had to be perfect. I had to control everything else around me because I couldn’t control the one thing in my life that made me crazy. That one thing I didn’t quite understand. That one LABEL that will forever be attached to my name (and literally, now attached to my name forever- but for a good cause of course!!)… it was so rough. Some days I couldn’t even handle myself. I didn’t understand why I lashed out at my brother (not the typical brother/sister relationship known), why was I so “weird” as everyone called me (because I was extra bubbly and sniffed my nose constantly?) Did I need a tissue? Nope! I was just ticcing. I tried to explain to my friends… but how could I give a clear answer when I, myself hadn’t a clue what Tourette’s really was? Middle school was the toughest. Hormones, fitting in… life was ROUGH.
Flash forward to college… I’d say senior year of college, I remember vividly… I was at a workshop in the ballroom in Sugden Hall @ FGCU (GO EAGLES!!) and it was a diversity workshop. We were sitting in groups and going around the circle explaining how we were each different in the aspects of religion, race, beliefs, family life, social statuses, and things that made us special. Well, it was my turn to speak and I decided I wanted to tell the whole group, complete strangers about my Tourette’s!!! But why?? I still didn’t understand completely. I was learning for sure all of what I did and why, but why now? Why with these people?? I had told my closest of friends but not random strangers. It was so freeing. As all eyes were on me, I spoke. I spoke about my TS and how I hadn’t really understood what it was. How I blocked out parts of my childhood because I didn’t want to remember. How I didn’t like myself because of my TS. But how I was starting to accept myself for who I was and my Tourette’s. That day. That day I decided it was OK. That I was OK! I was different, yes, but I was unique and God had made me this way for a reason. I believe that God doesn’t give you a situation you can’t handle, and look at me now! How am I handling my Tourette’s?? By working at a summer camp for kids with Tourette’s. By starting a NON-PROFIT with my mother! To help students go to college to pursue their dreams of graduating and living the life they deserve! Because I am a person too. I have feelings. And yes, I may be “weird” at times, but hey. I dig it! And that’s the only thing that matters. How I feel about me.
So to those of you who are reading this who have Tourette’s… I’m here to tell you that it’s OK. You’re going to survive. Will it be challenging? Yes, most likely. Luckily for me, I have a pretty mild case of TS, but being at camp around those beautiful souls who do have coprolalia (the “cursing” tic) or those who screech, holler, chirp, grunt, or cough every five seconds (yes, personal experience, and ouch does that hurt the throat!!) you will survive. Don’t block those moments out. LIVE them. Take full-advantage of the opportunity of the life you were given, and number one, do more research on Tourette’s. Take notes on yourself (as weird as it sounds). Why do I do this? Or ohhh, that’s why I do that!! You will learn to understand yourself better and come to accept yourself and your tics.
For those of you who do not have TS and are stopping by, thank you for reading my rant. My story. Part of my life. It means so much to me. If there’s any piece of advice I could give you, whether you know no-one with TS or you do know someone, don’t call them weird. Don’t put them down, but also, don’t baby them. We’re not stupid, we just tic. And please, no rude stares either… if you think our Tourette’s is bothering you, just think of how we feel dealing with it on a daily basis! Awareness and education are two big keys here. So get out there, spread the love and knowledge and have an AWESOME day!!
— Kelsey Diamantis
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