A Simple Breath of Air

If there’s one thing I would change about my body, it would be my breathing.  I struggle with breatholding and hyperventilation everyday.  I started to hyperventilate when I was four years old.  I didn’t start holding my breath until I was eleven.  On most days it starts with my breathing just stopping.  I continue doing what I’m doing for about 25 seconds, then it’s obvious that I’m struggling to others.  My body starts to jerk and I can’t control it.  Sometimes I hold my breath until my hands and lips and I’m told, even my tongue, turn blue.  It is about 75 seconds, and sometimes longer, before I start to breathe normal again.  Often when I stop holding my breath, I hyperventilate. Some days I hold my breath and hyperventilate constantly throughout the day from the time I wake up until I go to sleep. It’s noticeable to others, and it’s frustrating to me.  I have tried everything I can think of and others have tried on me, to help with this part of Rett Syndrome.  It hasn’t gotten better yet.  I don’t want to have people notice me because they think I am dying because I’m blue!  It’s hard to be noticed for that reason.

I wanted to share this morning about my struggle with breatholding, because I have been thinking a lot about my visibility in this world now.  It has not been easy for me to accept some of the things my body does because of Rett Syndrome.  Because I have been thought of so poorly by many people who don’t know me, I have tried to ignore the stares and keep doing what I know I’m suppose to do.  However, because of my music and the interviews and now my CD, I have become more highly thought of.  People expect certain things when they hear that I’m a composer or a writer.  I’m so honored to have people want to talk with me and give me attention, but if I am holding my breath and moving around turning blue, it makes them and me uncomfortable.  It’s something I can’t control, but it looks scary to others.  I can’t stop imagining what it would be like to have this part of Rett Syndrome gone.  On days when I am calm, I feel like a different person.  I don’t even think about breathing, it just happens.  It is something I imagine most people take for granted unless they are having trouble breathing.  I don’t feel nervous about it for myself, but what I do feel is uncomfortable in front of others when I am having a rough day. 

I feel great compassion for my other Rett friends today who struggle with this like I do.  I want to have you know that I understand and I feel how difficult it is for you.  Don’t give up.  I am told they have been able to reverse the symptoms of Rett Syndrome in mice.  I hope in our lifetime that we can know days that are not filled with such important and difficult struggles.  It’s not a simple problem, but if it could change it would be wonderful! I have hope today that it will change.

Love, Karly


1 Response so far »

  1. 1

    Melissa said,

    It must be so frustrating when your body fights you like that. You are a very strong person to share such intimate details of your life to help others in need of a voice. I really respect and admire you. I think you are a beautiful person and your good heart shines through. Also, you are a fantastic writer.

    I know you said you’ve tried everything but I was wondering if you have ever tried some hypnosis therapy? Just a thought.

    All the best, Melissa =)

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