Music Frees Me

November 23, 2009 · Filed under Disability Awareness, Music & Art, My Faith, Rett Syndrome, Rett Syndrome Intelligence, Uncategorized, Understanding Rett Syndrome, Writing Memoirs · Tagged composing for piano

 

My Songs

 

We are talking with many people to help get my CD ready to record.  There are a lot of things to figure out. I’m not involved in most of those things, like legal stuff, but I have a lot of joy in my heart because it looks like this could happen very soon.  Many great people are so excited for me and encouraging me to continue. 

I wrote a message to the group who we will be sending a message to for giving us the money to record my CD.  I titled it “My Vision for my Music.” When I first composed in 2000 with my music therapist in school, I never would have dreamed that it would be anything that others would enjoy hearing.  I was just so very glad to have someone believe in me enough that she would take the time to get my music out of me.  No one that worked with me before that time knew that I was capable of doing more than strumming a guitar or trying to tap a drum.  Those therapy sessions were awkward and difficult.  It didn’t allow me any way to express myself.  I know that other girls with Rett have music therapists too.  I hope that it helps them more than it did me.  I was so frustrated because I wanted to make music.  I didn’t want to have the sounds I made sound like a babies attempt at music.  I give my teacher Karen Bohnert respect and honor, because she changed my life by her belief in me.  I hope my CD gives her joy too.  She was there with me every note.  We struggle to get the song I hear in my head just exactly right.  I can’t imagine what my life would be without the freedom to share my songs. 

Love, Karly

I was asked to be the keynote speaker with Karen for a Recreational Therapy Conference

Karen shared how she and I work together

I wrote my message and had my Mom read it at the conference

It was a great day for everyone. They saw people like me differently.

This is what I wrote for the CCP Foundation board.  They are meeting next week.  I am praying for their support.  They have expressed a lot of interest in helping me. 

 To the CCP Foundation

I haven’t lived most of my life with a voice that others can hear.  I have never spoken in my life.  My disorder of Rett Syndrome kept me from ever speaking, even as a young child.  My years in school were painful.  I was not seen as a young person who had a physical disorder, but as someone who also had a mental disorder.  The opportunities that were offered to me were so limiting.  I wanted to tell them that I was not mentally challenged, but I couldn’t.  They didn’t believe I had any capacity for determining what I wanted to do in my life, so they gave me opportunities to remove my hat, and to show that I knew my colors and that I could sort objects.  I wanted to die.  I was so sad and depressed for the first ten years of my life.  The only person who really believed in me was my Mom.  She knew that their understanding of me was wrong, but she couldn’t figure out how to let me out of my body.  It was a difficult time for all of us. 

 It changed completely when we discovered facilitated communication when I was ten.  My Mom read of a man who was thought to have low intelligence for 36 years of his life.  He lived in an institution.  His parents brought him a typewriter when he was 36 and they discovered that if they held his arm to stop some of his uncontrolled movements that he could type.  He wrote a book.  I remember that story.  I remember where I was sitting when my Mom read it to me.  It changed my life.  It changed my hope. I was able to share simple things at the beginning, but they were so big to my family. I told them that I loved them.  I told them that my head hurt.  I told them about things I could never share.  It has been many years since then.  I now can type very fast, but I never dreamed that my life could be any bigger than my small group of friends and family. 

 In 2000 my music therapist at school was working with me and learned that my parents and my sister were all musical.  She decided that maybe I had music that I wanted to share.  She decided that we could compose together. She came up with a way for me to communicate the songs that are inside of me.  It took us many months but I created a song that I called Ever After.  When people heard it they were so amazed, because I was the girl who had nothing to say.  Now, my music not only gave me a voice, it touched their hearts.  I was so excited, because I became seen and respected.  My teacher Karen  Bohnert and I have worked together since then on many other songs.  I hear the songs that are given to me by God, and I hold them in my heart until I have them all out of me on paper.  It takes about a year for each one. I have shared my music with many people now, and they all ask me if they can buy a CD.  I never dreamed that my music could help people see that those of us who cannot speak are not without intelligence. 

 There is so little understanding in this world for people who live in bodies like mine.  I have given messages to groups of professionals as well as other adults who live with illnesses and disorders.  They usually cry. It has changed my life to be seen.  Much of my life I struggle to be healthy.  I often have very little energy and I am not able to work a regular job because my hands are not able to do things independently.  I am confident that if I had my music recorded, that it would allow me to help change the minds and hearts of others, as well as give me a way to earn money.  If I had the documentary that the woman who would like to be the CD producer is recommending it would give me another way to share my story. I get very anxious sometimes when I have an event coming up and my health is not stable.  I can’t tell until the day if I can be there.  So if people are counting on me it makes me worried.  If I had my documentary I could speak to more people whether I could be there or not.  It will also tell my story.  The part of my story that my music alone cannot. 

 If I had both my CD and documentary it would change my life, and I am confident that it will change the understanding that this world has for girls with Rett Syndrome as well as people who have high physical needs but are intelligent.  We need to become visible. Our gifts and talents are crying out to be understood and valued.  I believe that all people are sent to this earth with gifts that need to be expressed.  If they aren’t expressed they become painful inside of us. I hope you consider my request for the money to help make this world a better place through the talents I was created to share. 

Karly