During the summer of 2012 I had the honor and pleasure to be a counselor at the New Jersey Center for Tourette’s Syndrome’s YMCA Camp Bernie family weekend. This is a camp to help families of newly diagnosed children, and for established families to meet others and experience normalcy. I was very excited to be not only invited, but to be a cabin supervisor and activity leader for the children with severe symptoms. This continues to be a very proud moment for me. I was given the responsibility to show other families that we are normal people just like anyone else. We have a right to fun, pleasure, happiness and any other that non-disabled people have.
At first, when this opportunity was offered to me I was afraid. I was afraid that my own symptoms would get worse, or that I wouldn’t be the person the staff and campers are looking for. I almost let those fears convince me not to go. When I talked to my mom she asked me what my ‘little voice’ had to say. My mom is a big believer in following your ‘little voice’, and after being prompted a few more times I explained to her my fears of inadequacy and about meeting other people with this disorder for the first time and my hopes to help make a difference in the lives of others. My desire to be a part of this fantastic community and to make sure that at least one other child will not grow up the same way I did. I learned that by voicing my fears I can give myself the legitimacy that I needed to move beyond them and to start towards this goal.
I arrived at camp and after the close of the first evening’s activities my nerves got to me. I hopped into my car and left the camp but only got as far as the Catholic Church parking lot across the street. I sat there for a few minutes to think about my own fears and what caused me to panic. My first time not being away from home for an overnight trip, being around people with my disorder for the first time, and fear of failure. I realized that without pushing myself further I will never become the person I want to be. I will be trapped in a life without love, passion and adventure. Most of all, I had to face the reality of other people like myself. I was surrounded by adults and children with my condition when I have never seen them before and it was overwhelming to know for the first time in my life that I am also normal. The same thing I wanted to be able to show others had completely overwhelmed me.
After 20 minutes I returned to camp still wiping the tears from my eyes and rejoined the families in front of the campfire at our cabin. The rest of the weekend was absolutely magical and blessed. The children and I had a wonderful time together sharing our experiences, tics and other adventures on this path that we share. I realized about myself that if I always stay trapped by things that make me scared that I will never move forward into the life I want. Fear is something that is a natural part of growing up. The Divine can even show fear in situations that are overwhelming, or new, or can be painful. The thing I learned is to turn to the Divine and ask for support, and for trust. That I know to trust myself and to trust that my limits are broader than I know they could be, but I need to stretch myself, trust myself, and believe in myself.
Since camp I have become a very active member in the NJCTS and greater Tourette’s syndrome community by being an active listener to people in need and by sharing my life experiences openly when asked. This has become so valuable to me to watch myself grow through the work of others just as I’m growing through sharing my story with them.