Inspired By Love

This is my piano music.  It is played by my friend and music therapist Karen Bohnert.

My hands won’t allow me to play my songs, but the notes are all mine. It takes me about a year to complete each song. I have completed eight songs since I began composing in 2000. I will add a new song when I am able. My Dad helps me put my songs here.

To hear some of my songs Click Here to Listen

Karen wrote this information so you would know how I compose my songs with her.

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Karly’s Composing Process

A composer hears melodies and harmonies in their head, then communicates them either by playing them or writing them down for others to play. Like all composers, Karly composes music in her head; but it gets tricky when she tries to share her music with others because she is not able to write them down or play them herself.

That’s where the choice cards come in.  A Music Therapist (a trained professional who uses music to achieve therapeutic goals) presents Karly with choices on index cards, one choice per card, and Karly is able to pick up the one that she wants.  When starting a new song, the choices might have to do with which key she wants the piece to be in, what the time signature will be and things of that nature.  Once the first note is selected, then Karly is given the choice of three cards: “up,” “down” and “stay the same.”  If she picks “up” or “down,” the next choice is whether it moves by skip or step.  If she picks “step,” the note will be the next one in the scale.  If she picks “skip,” she is given the choice of different intervals (they are played for her), and she selects the one she wants. So it can take up to three choices just to communicate the pitch of one note—and there is so much more after that!

After selecting eight to twelve notes, Karly has to communicate the duration of these notes (rhythm), one note at a time, again using choice cards.  Choosing harmony, or chords, comes next, then accompaniment patterns and any changes in those patterns.  The piece is finished after things like tempo, dynamics, articulation and phrasing have been decided.

It is a very long and arduous process for Karly taking approximately a year to complete each melody.   Due to Rett Syndrome, her breathing issues, health and energy levels all affect her ability to focus on the task at hand, but Karly does not let any of this stop her.  She composes in spite of the immense effort and huge time commitment, producing music that is an inspiration to all, and a testament to the abilities that lie within all people with disabilities.

Karen L. Bohnert        

Music Therapist-Board Certified

M.A., NMT

 

Barbara McAfee, Karen Bohnert and Me at our first meeting together

 

My CD is Coming Alive!

November 17, 2009

 I am so excited because yesterday I met with Barbara McAfee, my music teacher, my friends Margie and Karen and my parents. Barbara is a musician who speaks at conferences and is a piano player and songwriter.  She has 6 CD’s and says each one of them is a child to her.  She was inspiring.  One of her goals is to help women find their voice.  When she heard about me she was very excited and wants to help my music get shared with the world.  She travels a lot and talks to people everywhere.  Places that I will never go. She grew up in the town where we live and used to spend a lot of time at the library where I love to go and write.  She uses the studio that we went to a few weeks ago for her CD’s.

 I loved the ideas she shared.  One of them was to create a documentary of the recording and a little more of my story, because my strength is often low, and to have to go to events where I am suppose to speak is really hard for me.  I get overwhelmed by large groups and lots of sounds, so she thought that having my documentary might make that easier for me.  She knows a lot of people that she thinks will be very happy to help with this.  So we are moving ahead, and I am so content in my heart.

 There is something that I want to share about my music and how I feel about giving it to others to enjoy.  I want to share what I think about my music.  I started composing with my teacher Karen Bohnert nine years ago, because she knew that there was a lot of music in my family. My Mom, my sister and my Dad are all very musical.  I write every note with Karen.  My family is not involved in any part of my composing.  I have titled the songs with my Mom’s help in facilitating, but beyond that they rarely hear my song until it is completed.   Karen has worked so hard to make my songs sound exactly like I heard them when they were given to me by God.  He makes them so sweet and memorable for me that I hold them until it is done composing.  The one we are finishing now has taken over a year. 

 I do not share my songs to become famous.  I share them because people are so inspired by them.  My hope is that when people hear what I have composed that they will be inspired to discover what it is that they were created to do on this earth.  I feel that everyone has a special gift that God created in them.  If they don’t share it with others we all lose out.  Everyone has something unique to offer this world.  Mine happens to be music and I feel so great when I can share it.  I will keep everyone informed through my blog about what is happening with my CD’s.  It sounds like we might be able to start recording in January. My sister Leah and I will be together in a couple of weeks.  She will be working on her Viola part for two of the songs.  I love how this is happening and I feel so alive, even when I am struggling like I have been in my body this past week.  I hope all my Rett friends will feel my love when they hear my songs. 

 With great love,

Karly

 

November 23, 2009

Music Frees Me

 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

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