Jaws, Part I

This post is probably not a light one. It's kind of the elephant in the room, but my amazing sister has finally encouraged me to write about it.


From my post a couple weeks ago, any lurker to my blog knows that my Dad and sister have dystonia. My Dad developed symptoms in...I want to say Spring of 1998, at the age of 54. My sister developed symptoms in late summer of 2005, at the age of 32. This is insanely young for dystonia - it definitely supports a genetic component; most CNS genetic disorders are charcterized by early onset. My Dad has segmental dystonia (cervical dystonia, specifically, affecting his neck, shoulders & arms). My sister has focal dystonia (specifically oromandibular dystonia).


In some ways, there is too much to say on this topic. There is no way that I can appropriately address the depth of this issue and how it has affected all of us, on a blog. But I find that I don't talk about it enough, and being bottled up really isn't my bag. Although I tend towards neurotic, and sometimes I talk obsessively about things that worry me, I do know that it's not in my nature to keep things tightly wrapped. My Dad's disease has been heartbreaking for all of us for a million reasons that can't possibly articulated. My sister's disease is heartbreaking in most of those ways, too, and also some other ones.

Like, she's so young. She is 35. She has two small kids and has a hard time speaking & eating. She has a hard time reading books to them. I'm not sure she can sing to them easily. She tends towards being thin - difficulty eating is just a cruel symptom. She's smaller, physically, than I am & there is this weird thing for me about needing to protect her. I almost wish I had a big cloak and I could wrap my arms around her and carry her with me, and make sure she's eating enough, and take care of her. It's a very vivid image I have, and it's probably not coming across very well, but that's ok.

My understanding of dystonia, in many ways, is very clinical. I've read the literature. I know the anatomy. I know what Botox does. I know what drug families are used, what generally works, what their common side effects are, what the treatment option schedule is. In some ways having that clinical perspective has been helpful for my family, but probably only marginally, and looking back it's probably much more of a defense mechanism.


I want to be Erin's cheerleader, the upbeat one that can reassure. But there is something about reassurance when things are hard and treatments aren't working the way they should that is maddening. It's awful to be terrified and anxious and angry and frustrated and be told to "give it one more try" or "give it one more week" or "we'll just try something slightly different next time". It's so easy to say those things when it's not YOUR life, not YOUR everyday, not YOUR every meal. And I totally know that.

I went to get some fillings the other week and a few days later my jaw was really sore. I mean, sore in a way that was totally foreign to me; my tongue felt too big for my mouth, my jaw and under my jaw felt really tight and it was exhausting trying to normalize it all day. I'm not exaggerating when I say that about 99% of my attention Monday - Wednesday the following week was focused on my jaw. I. Was. Terrified. I was a complete wreck. I couldn't function, couldn't find joy in anything except a few stolen moments with Owen. I felt like I was staring down this motor disorder that had captured my Dad and has stolen my sister' s voice from the other end of the phone, and I didn't know how I - the optimist, the cheerleader - would deal with it. I couldn't imagine not talking to Owen, not singing, not reading books. I couldn't imagine how it would affect my job, could I give talks at work still? Would Botox work for me?

I didn't want to talk to Keith about it, he is already so hyperaware of any abnormal movement I complain about. I didn't want to talk to my Mom about it - that's the last worry she needs. I certainly didn't want to talk to my sister about it - asking her to comfort me seemed cruel. But I did talk to my sister, and I'm so glad. She is the only person who would know that panic that I would feel, and she was amazing.

My jaw is ok. And that's not really the point of this post anyway. The point is that I got a glimpse, however small, however superficial, of what my sister faces EVERY SINGLE DAY. The uncertainty, exhaustion, fear, anxiety, and I totally understand if it makes her angry to have to deal with all of this. I don't know what my future holds with dystonia, and it's a little scary staring that question in the face all the time, but I do know that I will do whatever is humanly possible for me to do to help find a treatment for my sister.