23 Jan MY LIFE ON THE EDGE OF CHAOS
What is a life encompassed with a mental disease? A disease that will wrap around its host; threatening to suffocate and drown him in confusion, neglect, lack of strength, loneliness, and pain. Tough question? No, not really. It’s a life on the edge of chaos. A life living with Tourette’s Syndrome.
My mind is not my own. My body is not my own. Even the very air I breathe is not my own. Why would I talk like this? Because TS is controlling my life every moment of the day. It never gets sick, it never takes a break, it never goes on vacation, it never sleeps. From the moment I wake up, to the moment I fall asleep, it is there. And a lot of the time it also follows me into my dreams.
The edge of chaos.
That’s where I am. By the grace of God, and only by His grace, I haven’t fallen over that edge yet. But it wasn’t always like this. There have been times where I came within a hair’s breadth of falling over that edge.
Growing up with TS, was hell on earth. And if you looked at my life from that outward scope, you would think my life was good. But I am sorry to say, you would be woefully mistaken. People don’t see people who have TS. Let me rephrase that. People can’t see people who have TS. The reason being; people with TS have to totally shut off the outside world just to cope with our inside “chaos”. There is so much going on inside our heads constantly, that we have to give our strength to fight that battle and what is left is given to the outside world. That would be family, friends, acquaintances, people we meet in our daily lives. They never see the war raging between my two ear lobes. From time to time, they get a glimpse of our war. We call these glimpses, tics. It could be a facial twitch, an arm movement, or a high pitched squeal. These “tics” are an extreme nuisance to us. They bring unwanted attention toward us. Chaos wins a battle. But the war continues on.
Tics are annoying, loud, tiring, and cruel. If I am not on the top of my game all the time, chaos wins. I have to control the tics I have. If I don’t, then I would be useless. If I didn’t control my tics, there would be no time left in the day to do anything else. TS is so overwhelming that it would consume my day 24/7, 365 days a year.
IT NEVER SLEEPS.
Let me give you a glimpse of my life with TS. I’ll share just a few of the thousands of tics I have every day. Cicadas. The noises they make in the trees all at once. That is one of my tics. I hear that noise inside my head all day long and all night long. It never stops. Hiccups are another one of my tics. I can hiccup many times a day, but at 3-4 hiccup intervals. I have been waiting for the 5th hiccup for over 10 years now.
Even, numbers are a huge tic of mine. Ever since kindergarten I can remember 2s, 4s, and 8s as part of my daily life. I have to constantly be watching how I move. If I accidentally touch something, then I need to touch it again. There is no other option. My body compels me to do this. It is hard to describe why or how this happens. You think the cicadas are bad? Wait until you try to stop a tic. Tics can be stopped, but it’s like putting a glass under a kitchen faucet. The glass stops the flow for a short time, but soon that water will escape and flood the area.
As I have said; I can remember having TS in kindergarten. I didn’t learn what it was until about the 3rd grade. I just took it to be a part of my life. Grade school was good, because the kids there saw all my tics and knew it to be normal. When I was sent to private school, it was a totally different story. Now my tics began to be a burdensome disaster for me. I was bullied and made fun of because of them. I didn’t want to tell anyone I was hurting and scared, because how could they understand. They wouldn’t be able to stop the tics; therefore, I didn’t seek help or show my true feelings to anyone. So I shut down my feelings and closed up any hole in my armor and didn’t let anyone get too close to me. Learning in school was a challenge for me as well. The tics slowed me down considerably and sometimes stopped me dead.
High school wasn’t any better. I dreaded going to school everyday. I was bullied there a lot and made fun of all the time. I had no friends, just acquaintances who never really saw me. It had gotten so bad, that life for me, just wasn’t. I dealt with these stupid tics every waking moment of my life, I didn’t want my life anymore. Suicide was heavy on my mind and I came close a couple of times to making it a reality.
Let me backup a moment. I knew I couldn’t stop my tics and they would happen no matter what. But it was in junior high that I learned how to conceal them and hide them away from public eyes. This lessened my anxiety a little bit but also made it that much harder to deal with. It was very tiring hiding them from everyone else. I would go home after school and find somewhere to be alone so that I could “tic” and relax. Remember that glass under the kitchen faucet? So, since junior high, I have been putting forth this method of “controlling” my tics and hiding them from the world.
When I am nervous or frustrated, my tics become a waterfall. I have learned to be patient and quiet; otherwise my tics show up. I have a terrible time listening to anyone for a long period of time, say 30 minutes. Because I am also controlling all my tics and body movements, and loud squeals, and curses, and so on and so on. It might take me a few minutes to answer you if the question was a little complex.
But after I sort out the details in my head, then I will answer you. But be prepared to listen, as my answers are all very detailed. TS controls that part of me too.
One way I have dealt with TS, is through laughter. Laughter, they say is the best medicine, right? Well, I don’t know about that, but it helps. In high school, if somebody was laughing at your jokes, or the funny stunt you did, then they couldn’t be laughing at you. I turned to jokes, pranks, and other ilks like that, to take the spotlight off of my TS and the turmoil going on inside of me.
One of my breakthroughs came when I went on a TMI team. I knew nobody, but more importantly, they didn’t know me either. And since I have been perfecting the “art” of hiding my tics, it was easier to go and kind of feel like I belong. A very good feeling, I might add. I was just a normal kid, serving God. But when the summer was over, the stress came rushing back in. I kinda felt like Harry Potter, sitting in his cupboard under the stairs and dreaming when I could get to go back to Hogwarts. After high school, I managed pretty well. I became a lot more functional and independent.
The one person I came to rely upon the most after school, was Jesus. God is sovereign. God is loving. God wants the best for me. It took me such a long time to figure this out, but I have figured it out. God gave me TS. God knew I could handle TS. God showed me how TS has molded and shaped me into the person that I am now. I have gone through many trials, many hardships, where I couldn’t see through it all. But He is sovereign and His eye is and has been on me all this time. He cares for me and loves me. And through many a long and difficult year, that has been enough.
God has brought me a wonderful, encouraging, loving, and beautiful wife. She is my rock, and my lighthouse here on this earth. She understands me and my TS. As much as a person without TS can. She helps me to continue fighting it and is always there with a shoulder to lean on when it gets too tough to fight. I wouldn’t wish TS on my worst enemy, but I wouldn’t ask God to take it from me either. Although there have been times when I did. TS has made me who I am today. Without TS, there would be no Jake.
As I am getting older, I am also getting more tired. I have been dealing with TS all my life. The tics are all still there, none of them have gone away. Although they do change at times. Some are easy to control and to hide from the public. Some have taken a lot of my strength and sanity to keep down. I am tired, really tired. I am scared that one of these days, some of the “forbidden tics” will surface and I will be undone. I need renewed strength to shoulder on. God is good. He won’t desert me. My life is better these days, as I have a little more help to sustain a happy spirit.
Don’t get me wrong. There are still difficult days and difficult times. But as I am learning to rely on others more and God the most, I see a good road up ahead. Maybe I will have a life that is not always lived on the edge of chaos.