It's all very well and good to keep the mantra of "I have Tourette's, but Tourette's doesn't have me." It's all very sweet and inspiring to put on a smile for the world and talk about how we can overcome any obstacle that life can throw at us. And while all of that is true, and I do try to live my life and teach Perrin to live his life while not letting Tourette's define who we are, I gotta be completely honest. Sometimes, in fact, quite often, having Tourette's just sucks. And as much as I'd like to say that raising a child with Tourette's is a piece of cake, I'd be lying if I said it didn't sometimes frustrate me to the point of tears.
Yes, the three of us are a very happy, well-adjusted family, and we make the most out of every situation that gets handed to us, but sometimes I succumb to the dark side of Tourette's. Because in addition to tics, I suffer from depression and sometimes quite severe OCD.
I am incapable of having a conversation with someone without dissecting it word by word later when I'm alone and critiquing every thing I said or did. It's often quite difficult for me to watch a movie or even listen fully to a conversation because I am either typing out each word on my invisible keyboard or writing the words with my tongue on the back of my teeth. Yes, the tics are a pain in the ass, but as many people with Tourette's will tell you, it's often the "mental tics" that are the most crippling. I frequently have a hard time falling asleep at night because my brain simply can't shut off. It's almost as if there's a TV in my head, and when I close my eyes, my brain flips through the channels at lightning speed, and a constant barrage of images flash in my mind.
I do not have interests or hobbies. I have obsessions. If I hear a new song I like, I have to listen to it at least 100 times on a loop until even I'm sick to death of it. John gets annoyed with me because when I discover a new musician or TV show that I like, I talk about it ad nauseum until even I wanna punch myself in the throat. I repeat the same points over and over in a conversation because the first time I said it, it either didn't sound the way I wanted it to sound, or I had the words in the wrong order.
These things make it difficult for me to maintain friendships, because I quickly fear that I'm being obnoxious or inappropriate. I do not understand normal social protocols for many circumstances, and I have offended people on numerous occasions without understanding where I went wrong.
But above all this, it is the depression - a mysterious pit of despair - that I struggle with. I have always been somewhat melancholy, and I have never been famous for my winning smile, but overall I would say that I am usually content, if not happy. I am not entirely sure I am capable of sustaining any real happiness, or happiness as it is usually defined.
I see this same moderate contentment in Perrin, and I suspect he will be a lot like me. He doesn't laugh or smile often, and I have seen him fall into fits of sadness that linger and cannot be cheered. It is either one extreme or the other. Perrin, too, has obsessions that drive me a bit bonkers from time to time. He repeats himself and turns a simple bedtime routine into a 45 minute ritual that is maddening. He is intense, and his mood can shift from happy to furious in a matter of minutes with the right trigger. I've watched him become so manic that he nearly jumped out his 2nd story window. He has become so withdrawn that he turned his chair away from his classmates and refused to speak to anyone for weeks at a time.
These are the dark sides of Tourette's. I don't talk about them often, and I want so desperately for it not to affect our lives the way that it does, but to deny these feelings is to be dishonest about what it truly means to have this disorder. I will always try to look on the bright side, be outgoing without being offensive, and smile through real and imagined heartaches. I will continue to teach Perrin the importance of recognizing his own emotions and trying to find outlets for them. This is how we deal.