Monday, December 7, 2009


Well, for some reason I just have not been able to write on this blog lately. I do not like what I have written so far for one thing. It is all true and every bit of it from the heart, but yet it doesn't seem right when I go back and read it. Maybe I will not go back and read any of my posts. I can only write what is true for me at the time, and then avoid hitting the delete button later. It is what I was feeling then so it is true and still helpful for me to go and see later; right? Who knows.

The last post especially, writing how I love my wheelchair, can't wait to use it again -- yuck! Who am I kidding? Everyone who knows me knows I don't have it all figured out and wrapped up into a neat little package as I feel I am trying to say in my message. Oh, it's all great, blah, blah, blah, and well, it just makes me a little sick to my stomach now. Yes, I truly believed every word of it when I wrote it, but -- wow, even that makes me a little sick to consider for some reason.

I have been focusing on staying off the whole "dystonia" situation and just doing what I got to do to get along just like every one else in this world does. I have to say that some of the things I have been realizing about myself, and the way I operate are a little disheartening. I have come to realize that I have been using this whole dystonia thing as a HUGE excuse for basically being lazy, inconsiderate, unreliable, etc... the list goes on. I know I am a good person and all and I am not trying to beat myself up or cause another "woe is me" moment, but damn, excuses aren't working for me anymore because I do not have the energy or the ability to run around like a chicken with my head cut off to fix them. Well, this has caused me to (forced me to) figure out a new way to do things, and in so doing, I have discovered some of these negative traits.

As painful and embarrassing as it is to admit and look at, I am so glad to finally figure out why things have been so hard for me all along, why I haven't been able to move on. Yes, I do have many days I have to cancel going somewhere, a commitment I have made, or I do not get anything done due to dystonia and the day to day aspect of dealing with it. I know that my family and friends understand that I may not feel well an hour before our commitment, and have to cancel. However, dystonia is not an excuse for the times I have been late somewhere and just always expect people to put up with it because, you know, "I have dystonia." Who cares; right? We all have our things in life to deal with.

Dystonia, by the way, is a word I am sick and tired of writing, reading, saying etc...working on it, but anyway -- excuses, excuses, excuses. I have been using them to basically give up and just float through life one day at a time with no real thought to my future.

In my previous post I wrote that I want to know about the hikes and trips my friends and family take. Oh, give me a break. The reason I may have not been told about some of these things going on is because I haven't been a good listener much of the time or a good friend. What I have been is preoccupied and basically self-absorbed. I am the reason I have been missing out on things, not anyone else. I finally can see things a little more clearly.

I guess I just get angry at myself for giving up so easily, for not figuring it out much quicker that there is life after dystonia and it just seems to get the better of me on some days and well, that really frustrates me. People have, will, and are going through so much worse and unimaginable pain and circumstances. I totally get that. My heart aches for these people and is another reason I find my difficulty with not just moving on sooner so annoying.

I want to express my deepest and sincerest appologies to all of my family and friends, especially my husband and kids for just taking a back seat to things and basically taking the easy way out for these past couple of years or so. Thank you from the bottom of my heart for always being there, for truly caring. My family knows the days I have not answered the phone, and just purely taken them for granted during this. There is just no excuse for that and I am sorry. Jim, thanks for all of your patience, long talks, and your amazing patience with all of this.

This very strange disorder has caused a huge life change for me, and also my family, but I know deep down I have let it be my excuse. It has been painful for me to look at honestly.

I recently learned alot from another person who has dystonia. I saw her on the Oprah show the same time Micheal J. Fox was on about Parkinson's Disease. I was interested in what she had to say because she was so positive on the show. I read her blog and emailed her. She emailed me back which actually surprised me. Rogers Hartmann is a patient/advocate. Through many emails and messages back and forth, I have learned so much from the way Rogers just carries on no matter what. She works full time and also is working hard to raise awareness of dystonia and fundraising, etc...she does all that she does while in pain, etc...but also truly cares about other dystonia patients. She recently sent me a book called Loving What Is. I would definately recommend this book to anyone. This book has really helped me to see things for what they are in life.

So this is a shout out to Rogers. Rogers, thank you so much for your time, thoughtful words and basically, for being an advocate. What you are doing is making a huge difference. I wish you all the best and hope you are feeling well.

I am very excited about my future and the future of my family, but I have finally learned to live right now, this very moment. It feels a lot like freedom to me. Love you all and thanks for all of your support and patience.


  1. You are so's difficult to manage all at once. Rogers is a warrior and it's amazing how she manages everything...I'd like to follow her around for a day to find out. I doubt that anyone has anything but understanding in their heart for you and how you manage to get through a day with the D-word. Have kindness for yourself. Hugs, Sue

  2. Thank you so much for such a nice message. I really appreciate it. I was just about to check in and see how you are doing. Take care.