Want to know what Dystonia is?

What is Dystonia? http://www.dystonia-foundation.org/
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures.

That is what my sister, Susie has. She is unable to eat well, drink well, or talk.

It's kinda crazy, most people judge her, when they see her. Not because they are mean, but because they know very little about her and what is going on.
They see a disorder, might think she is slow, or deaf.

Ha! She is far from slow, I think I should get the not so smart card in the family. Susie is always witty, cracking jokes and such a smartass. She can hear very well. But you will never know. Anyone who has know us from the start, knew that Susie could talk just like anyone else. Now Dystonia has taken over her voice, it has been about 8 years since we heard Susie talk.

She has a Sidekick (like all the celebrities have) so she types messages, but her shyness and skilled abilty to blend into any wall has made it just about impossible to know what she is thinking.

Most of the time she just says forget it. Or thinks it's not important. Hello! I don't give a shit what people think, I need my opinion heard! Caca or not. I voice my opinion, so why shouldn't she?

I think it makes it even harded on my family is that Susie has had 2 Brain surgeries, for DBS, (Deep Brain Stimulation) we see Doctors at Rush St. Luke's in Chicago every couple of months, but they just poke at this stupid little box, adjust the readings on her generators (like pacemakers) and we will see you in a few months. Blah, blah, blah. I think we (my family) are getting tired of nothing. No answers, but how do you answer a rare disorder?

You don't. This is why I question the God we all pray too. Go pick on someone else. Pick on some asshole, not my sister. What did she do? Seriously. I guess this should make her stronger? Make us stronger as a family? Shit at least let her eat a meal with out choking, or drink anything without spitting it back up, talk at least one word. Give us some hope, that would make us stronger. But no. Add on the fact that every year that goes by, it's slowly gets worse.

That is how her voice went from normal, to strained, to nothing. No voice? Sure but now at the fact that her mouth muscles are so tight that she has to force her mouth open with her own hand to attempt to eat. Small pieces of food. Eating in public? Ha! Dinner guests over? She will eat in her room.( Think about that when you are chewing on steak, or bite into an apple)
Drinking? please, straw only, little sips at a time, so she dosen't choke. God forbid if she is thirsty. (think about that when you chug down a bottle of water)

The day of my wedding, June 16th 2001. Her head started to turn to the left. Not alot just a little. Now it is almost always to the left. Turn your head to the left. Go ahead. You wanna know what's going on, on the right don't you? nope don't turn your head, turn your whole body to the right. Try watching going to the movies, or watching T.V. Susie and I actually pose with our fists under our chins, so she can control her head, and it dosen't look like it.

No contact from old friends. They don't understand, and don't have the, who knows what lame excuse not to contact her to understand. Hardy's Resturant Birthday Parties every year. 20 plus friends presents everywhere. Who?
Mom, Dad, Ed and Gack. That's who now. Close friends and family love Susie and support us and her. But where is everyone else?

She lives with my parents, and has a pretty sweet setup. Her own, very purple, room. Her own very yellow and red bathroom. And next to her room is the guest room/Susie's living room. I belive she could live on her own and be just fine. But jobs are limited and disability dosen't pay shit.

I just get so frustrated, I know Susie. I know what she is capable of and wish everyone else did too. She is smart, pretty, witty, loveable, the best aunt ever to Mia, and the best Sister I could ever ask for.

Voice or not, Susie and I can communicate, she types in her sidekick, I talk back. We sign a little, email a little.

I wish I could get the attention that Susie's Soap Opera Message Board friends get from her. I try to email her, ask questions. "How was your day?" I get one word answers. I try to communicate the best I can. I am home alot, email is the best thing for me and Susie. We both are in front of our computers so much.

Sometimes when I am in public, I hear a little girl. Reminds me of Susie's voice, back when we were kids and everything was ok. Playing with our toys, having conversations. Did you know I actually try to remeber certian conversations? Because there is that few. If I try really hard I can hear her again, I want Ed to hear her.

The insane thing about my daugter Mia, is that she will never know the Susie that I know. She will always know the Dystonia Susie. But I know this, I will always teach my daughter/children, that you can not judge a book by its cover.
I hope Mia ask's questions, I will tell her. and she will love her Aunt Susie regarless. Just like me.

Maybe next time you yell at someone to shutup, you will think that maybe you will get your wish. Enjoy conversation with your siblings. You may not all the time. But maybe enjoy there voice, the sound, or just the fact that you can have that conversation.
Do it for me and Susie.

Susz, if you read this, you will know why. I read inside your head. I am sorry if you feel that way. I love you, I don't know your pain, I never will. I can't even begin to imagine your life. Just know that you are my other half, my first bestfriend, and I love you no matter what life throws at you. I couldn't inagine what my life would be like if I wasn't blessed with you in it. You are my hero Susanne Frances. I love you. alot.