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.