It is my first post in the blog of the Tourette syndrome that I opened to share my feelings and my experience with living with this syndrome. I started writing blogs only a week ago, and I feel like I am going into uncharted water and I am just learning to swim. I hope that with more blogs it will get easier. I have never shared my feeling like this to the world and I feel a little exposed and it’s a scary experience for me, but I also get a gentle feeling in my soul.
I was diagnosed with the Tourette syndrome when I was 15 years old in High School. Usually, it starts when you are a kid and settles down when you are an adult, but it’s not like that in my case. I still have it and I will probably have it for all my life but not always the same level and degree. And I have had good times and some very bad times.
I remember when I started to have the first tics and my parents and I didn’t know what it was. It was scary at the first as you start to have movements and voices that come from you and you don’t know what’s wrong with you. I didn’t know what to do as we tried a lot of doctors and nobody could tell us what it is. During this time my father and I started searching the Internet for these symptoms. From what we read, we finally came to the conclusion that is it probably the Tourette Syndrome. After that, we tried a lot of doctors and when we heard about Ichilov we decided to give it a try. When we came to them with the symptoms and what we thought it was, they confirmed that it is Tourette Syndrome.
At the start, it was hard to accept even though I had a name for it and even knew what it was. It was a shock to realize that you have something wrong with you. You grow up your whole life like a regular kid and suddenly you find that you have a disease and you can’t control your body and the voices that you make. I was in shock and afraid. Luckily I grew up in Midreshet Ben Gurion, and had amazing friends that didn’t make a commotion about it and looked through it and accepted me with the syndrome as their friend and I couldn’t ask for more. For them, I was Edan and stayed the same as I was before they knew about the Tourette.
When I was supposed to go the army they dismissed me because of mental issues that they didn’t tell me about; they just didn’t draft me. After three years of fighting, I got to an agreement with the army that if I find a unit that will be willing to accept me, then they will draft me. So with the help of Shmulik Rifman, who talked to the Ramon Air Force base commander, they drafted me. I was in the base for an amazing ten years, and when I think of that time, I feel a little pinch in the heart. I had significant and meaningful years. I met these amazing people who are still friends of mine. From the start, they accepted me with the Tourette and gave me a warm feeling of belonging and acceptance. I talked with them about the Tourette and they gave me all the support that I needed and gave me a warm feeling that I am equal to everyone and looked beyond the Tourette. I remember that most of the time they had to kick me out and force me to go home at the end of the day. The atmosphere was more like a big family than an army. Don’t get me wrong, if you didn’t do the job or made a mistake, you would be reprimanded.
After I got relieved from the army, I started to work at the Ramat Negev Agriculture Center and three years later also in the schools belonging to the Ramat Negev Regional Council. I work as IT support and am in charge of all the computer networks at both workplaces. When I started to work there, I talked with my bosses and explained the situation and again I found a warm support. They gave me all the support that I needed. I couldn’t find better bosses and co-workers. It’s not obvious to have this kind of support. I feel grateful every day for that, and I don’t take it for granted. I feel a great joy to go to work every day because of that.
Even though I had all the support when I grew up from my amazing family and friends, I always was in a state of war with the Tourette. I never accepted it and hated myself and my situation. I honestly can say that this war between wanting to have a normal life and the Tourette that does what it wants, took from me a lot of mental sacrifices and still does. I disconnected myself from society and didn’t let anyone get close to me, but that was bad for me. I can see it now that the state I was in was awful to me and I should have reached this conclusion before.
Four years ago, I came to a conclusion and decision that I needed to start to accept the Tourette and start learning to live with it because it is a part of me. I can’t say that I succeed all the time. There were bad times that took me down. I also decided to be more open and to talk about what was happening with me. I started to talk to my sister and my father and I still need to work on it and to be open to the rest of the family and friends.
During this process, I started to be more open about this with my amazing family and friends. I also started to read about it and there are two idioms that I sympathized with in the Tourette awareness page: “Life with Tourette is like a roller coaster of ups and down, twists and turns” and “I have Tourette but it Tourette doesn’t have me.”
In context to the first idiom, during these years that I lived with the Tourette, I had bad times and good times and ups and downs. But it’s important to remember when you are down that it is temporary and usually I come back stronger than before, after this.
In context to the second idiom – I have Tourette, but it doesn’t define me. What defines me is my friends and my social life and all the things that I do for myself. I will always have the Tourette, and it will be part of me, but I need to put it behind me and focus on the good stuff that I have, and I have plenty of amazing friends and a workplace that respect me.
I know and find that it easy to say and write it but it’s hard to implement it, and sometimes I fall into depreciation because of the Tourette that raises its head to remind me that it’s there. I try to make these periods of bad moods a short period and to snap right back, but I can’t say that I succeed every time. Luckily I am living in Kibbutz Sde Boker in a community that gives me the support that I need. Also, I have amazing family and friends that help me and support me with what I need.
I feel the warmth from everyone around me and from the Ramat Negev Regional Council, and I feel blessed and grateful for all the support that I get from my amazing family and friends. I feel that I need to learn how to deal with it by myself, but I have friends and family to help me if I need it.
I feel like I am on a new road that started four years ago that has its bumps on the way and that I need to learn how to overcome. I am learning all the time, but there is still a lot of work for me to do in order be in a place where I accept myself completely. I honestly can say that it doesn’t work all the time, and I have my share of bad times, but I need to remember all the good stuff that I do even if it’s hard for me to do. With the amazing support and the warmth that surrounds me, I know that I can get to my main goal that is acceptance of the Tourette and myself for all the good and the bad. It will take time, but I will get there.
Also, I hopefully will continue to develop the inner strength and mental toughness that I found again recently and thought I had lost. But it still is not dominant enough and I need to find the way to coexist with the Tourette, to balance my work that I love and the social life while listening to my body and relaxing when needed.