We interrupt Around the Web in 80 days today to bring you a post from a dear friend of mine, Bethany. Enjoy! (This is part 2, part 1 is here)
Treating Tourette's
Treating Tourette's can be difficult because since everyone is different, there is no standard textbook answer. And there are medications that directly attack the tics and work wonderfully, but they come with a whole host of other side effects that can be horrible. So, if you're willing to take the time, it takes some experimenting at first before going to those last-resort drugs. Let's just say I don't want to take something like Haldol (haloperidol) unless I've exhausted all other options.
“I've learned to cover up some of my tics fairly well”
Over the years, I've learned to cover up some of my tics fairly well. For instance, the shoulder shrugging/jerking is one of my most common tics but when I'm in public it has become second nature to, when I feel that coming on, slowly work it into what looks like I'm just stretching my neck. I also bite my lip to suppress my mouth movements a little, or just sit with my hand over my mouth so as to hide it. I don't even think about doing these things anymore, I've just learned to do them to hide the tics because they embarrass me.
“I wasn't able to join in on a simple game”
Does anyone remember the game "killer"? We used to play that when I was little. Everyone sat around and drew slips of paper, and if yours said "killer," then you were "it." You all then quietly looked around at each other, and whoever was the killer had to very subtly wink at someone to "kill" them, and that person would say "I'm out" and sit back, no longer part of the crowd. Eventually, by process of elimination, everyone would try to guess who the killer was. Man, was I ever horrible at that game! I never knew why then, but winking and blinking is a common tic of mine, and I was just murdering everyone left and right, even when I was innocent! It makes me laugh now to remember all the confused faces, actually. I eventually learned to sit out of that game and just watch. It may seem like a small thing, but that's when I can remember the social impact starting. I wasn't able to join in on a simple game like that just because I couldn't control my eyes. Hey, I really wanted to play too.
But eventually, things started to slowly make some sense.
Though the exact gene has not yet been identified, Tourette's is strongly suggested to be hereditary, and until I started purposely looking for it I didn't realize how many others in my family have the same tendencies, just much more mild than mine. Except for my dad; his aren't so mild. I always thought when I was little that it was so strange that I made the same odd facial movements that he did, and we also have one certain sound in common. I didn't understand it then, but it makes a little more sense now.
“I am quite OCD about nearly everything”
Also, as I mentioned, those with Tourette's usually deal with some form of ADD/ADHD, and/or OCD, and I have both. It's always been a running joke about how obsessive compulsive I am, and I always knew that it was something stronger than just being a "perfectionist." I am quite OCD about nearly everything, but that's actually a subject that deserves its own article. You would laugh to hear the things I do and how my brain justifies them. And as for the ADD; I'm always moving and have the attention span of a gnat. Unless, however, it's something I'm interested in. See, I can sit and read for hours and hours, and recite the story to you in detail a year later. I can memorize entire monologues from movies after only seeing it a couple of times. Yet I have to write down phone messages or I forget what was said just seconds later. Recently, I had a medical test that lasted seven minutes and I had to stay perfectly still (yeah, right. Just tell the man with no legs to get up out of the wheelchair, why don't you), so I decided to pass the time by counting out seven minutes in my head. Noble goal, I thought! I made it to a minute and a half before I realized I was staring at a speck on the wall and had stopped counting. I just had to laugh at myself. I am so very easily distracted, and it's frustrating to no end.
PIECING TOGETHER THE PUZZLE
I never understood why I couldn't pay attention, or had obsessive tendencies, and couldn't control certain muscles. But I know now that these are not necessarily three separate problems; Tourette's, OCD, and ADD are all wrapped up together in the same annoying package. Sometimes, as frustrating as it can be, it's actually a relief to pick up one more puzzle piece and say "oh, so that's where that goes," push it into place, and see the whole picture start to come together. That's the only way I can describe it: each bit of information, each new diagnosis-- it's just another piece to the puzzle that I've been missing. I've been so frustrated for years with all the holes in the picture, and the things I didn't understand, but it's finally starting to come together.
"do you like yourself?"
After my mentioning embarrassment and feelings of social inadequacy, a dear friend of mine asked me, "do you like yourself?" He was afraid it would offend me, but I appreciate that question. I welcome those who ask me questions in a genuine effort to learn, so don't be afraid to ask. Yes, friend. I like myself. My nervous system disorder is not who I am; it doesn't define me. It's a problem that I deal with daily, yes, but it has nothing at all to do with who Bethany Rachel Hartman is as a person. Except that maybe it will make me stronger as I learn to deal with it.
BEFRIENDING THE TIC MONSTER
I wish that I could wrap this up in a pretty little bow and give you a happy ending now. I wish that I could tell you that I've made friends with my disorder and that we live peaceably because I just wouldn't be "me" without it. But I have to be honest, and the truth is that I'm not there yet. As you see, I still view it as a monster to be tamed. My doctor asked me if I wanted to keep experimenting with treatment, or if that was more stressful than just "dealing with it." My quick reply was, "I can't deal with it." Trust me, I've learned to accept and live with many other problems so I know it can be done. But for now, it's a process that I'm still in the beginning of. I'm still honing my coping skills and learning how to tame the monster. One day, hopefully soon, I'll be able to tell you that I'm okay with the cards I've been dealt. But one thing I can say with certainty is that my God, the God who created me, did not make a mistake. He knew I would face this and there is a reason for it, though it may always be unknown to me. And that's okay. If I can end up giving Him glory through my weaknesses, then it's worth it. He is sovereign, no matter what, and I trust Him to see me through any trial. I may not know much else, but that, my friends, you may take to the bank.
THANK YOU, DOCTOR
I have to say, I very much appreciate my neurologist, Dr. Philip Blum. I recommend him if you're in the Houston area. He knows what he's doing. He listens and sympathizes very well. He picks up on things I don't realize I'm doing. He humors me when I make OCD comments about how his office is arranged (actually, I think he baits me to make it worse, which is fun). He takes my feelings and opinions into serious consideration because he knows I'm not an idiot; I know what I'm talking about when I go to him and he respects that. He doesn't mind when I get emotional and cry, and then feel stupid for doing so. He jokes around, and that just makes things better. He's so easy to talk to and get along with. And he's reading this, because I'm sending this to him when I'm finished writing it. So, Dr. Blum: thank you for your patience with me, and respect for me. I appreciate you. Thank you for being one of the good ones. I was right; writing this was cathartic. You know how much I love being right...
One good thing about it that I can say I appreciate is that Tourette Syndrome is commonly associated with genius. So I just tell people that if I weren't such a genius, I wouldn't have these problems!
