Chapter 4: Learning to Walk Again
The most debilitating thing about Tourettes is when it affects you. When you reach puberty you've basically just figured out how the "world" works. You think that you get it and then you're body starts going through changes. They break you out of the little cave of adolescence that you made for yourself and put you into this who brave little world. I was first diagnosed before puberty struck but not by very much. Imagine it. You're still undergoing the same life altering changes that all of the other kids are going through but now you have the equivalent of a bad roommate in your brain. When you want to move left it wants to move right. When you want to say the right thing to the pretty girl it wants to make weird faces and loud noises. It wants to be loud when you want to be quiet. It wants to move when you want to be still.
A lot of times I say it's like being hacked. You have moments when life seems normal and then all of a sudden you move on your own. Your body is taken away from you and starts to do the work of the bad roommate. So what you have to do over the course of you life is "re-learn" how you do most of your ordinary activities. You start to walk differently. You may have longer pauses while talking to allow Tourettes to do it's thing. I learned to take long walks just to get my legs to stop moving on their own.
You also learn new ways to hide your tics. You develop weird little habits to hide what your body was doing. You become a master of deception to keep everyone from saying, "Dear God what is that?" By college I had become very adept at hiding everything I had about Tourettes. I lived a lot of those first two years under a cute little mask. Heaven forbid that they knew I had Tourettes. If I just walked around like a nice little robot for the rest of my life then maybe the depression and the bullying would never start again.
But I never really thought that my mask would actually turn more people off than my Tourettes did. I sacrificed my humanity and suffered while keeping my bad roommate locked up in my head. No one wants to talk to robots. No one wants to love a robot or offer him friendship. It took a long time to tear all of the walls down and work myself back into the world of real human beings. But when I started to finally let the real me out of the shell...I finally found a new feeling call compassion.
But more on that next week.