Anger, It’s not Me

A great day at the lift bridge in our river town. I love the river, it calms me. It is frozen now.

I have not written much lately. I have not been feeling good, but today I woke up feeling great.  I have decided to write about my experience last week, because it was a difficult week.  I was feeling things I never had before.  It was very difficult for me and my family and caregivers.  I don’t understand exactly what happened, but since I have always been honest about my Rett symptoms, I decided to write it for you. I hope I never feel these things that way again.

I felt so much anger in my body. It wasn’t in my mind, it was just in my body. I am trying to think of how to explain it to you, because I have felt anger as an emotion before, but this was very different. I felt completely out of control.  I tried to throw myself back and it didn’t seem like I felt pain. I am tall, so it was really hard for my Mom, who is much shorter than me, to help me walk or even sit next to me. While I was doing these things, I felt so scared because it wasn’t me. It wasn’t who I usually am. I am very content and gentle most of the time. I would never hurt someone. It felt like I had no control of my body. I was sweating which is very unusual for me. I typically am very cold. My body smelled funny, even to me. I couldn’t sleep most nights. It was painful to be inside of me.

I found that if we got out and walked at the place I go with my walker in the cold months that it helped relieve some of my feelings of anger, but I couldn’t get rid of them completely. The past two days have been very different, so I am glad for that.  I hope this might help you understand if you know of a Rett girl who is acting very aggressive, that it may not be anything she is actually feeling inside. I don’t know why it happened; we weren’t doing anything different than usual. No new medications or supplements or diet changes. It was very weird. I feel great today, except I didn’t sleep at all last night, but I feel content.

Love, Karly


2 Responses so far »

  1. 1

    Sandy said,

    I am so grateful that you are able to articulate what goes on in both your mind and body. The insight you share must be invaluable to friends and families of other girls with Rett.

  2. 2

    Mike said,

    Hi Karly,
    Just a quick note, I hope. I can identify with your “Cruel Stare” article. I don’t have a physical disability such as you do. At this point in my life, I depend on Public transportaition to get around, and I witness almost daily how wheel chair
    dependant people are treated. Sometimes I’ve sorry for myself, then I see a truly disabled person moves and most likely gets more done than I do, then I have to reacess my priorities and get grateful for my life. I haven’t been much to “Woodland Hills” church lately but I like Greg Boyds spirit and commitment to God. I do plan to re-attend very soon. I usually go to the 11:00 service if I have to time I’ll say “hi”, if yoiur there. Try to stay high in spirit, God Bless

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