TALKing About Young Illness
The importance of giving young patients a platform
My name is Megan Cavallari and my world is about sound. As a television, film, theatre, and opera composer, I spend most of the day in my “cave” creating music: for the screen, for the stage, for singers, to sell products, to express ideas in a song, to record a voice, to record instrumentalists, to mix and produce when I am ready for the world to hear it. I am one of those extremely lucky ones. I get to do this for a living. I have been doing this since I was fifteen. I love it. Every day is a challenge and it is never the same.
Over a decade ago, when I was in a lunch group run by Stephen Price, at the Jewish Federation in Los Angeles, I wanted to figure out a foundation I could start which was something I could do which was dear to my heart. My daughter Shoshie was diagnosed with juvenile athritis about the same time, so I was around a lot of hospitals and chemo wards — and it was its own world. I noticed adults, including myself, did most of the talking, while the patients were just listeners, without much of a say. I thought that needed to change, so I created The TALK Foundation here in Los Angeles. Dr. Juliet Warner was a big help; I knew I was on the right track but needed her experience and guidance. The TALK Foundation took off like wildfire.
Here is how TALK works. People find me on my web site (either thetalkfoundation.org or megancavallari.com) or by word of mouth, and I go to meet my new “talker” — a child, tween or teenager — with my laptop and record our session. For some reason, everyone likes talking to me. I ask things like “do you have that nurse who can find your vein every time and you relax as soon as you see them?” I go home with the recording to my studio and mix the session and either send them a link or a CD.
The amazing part is how wonderful the patients feel, during and afterwards. We connect. One of my talkers described it as “a giant boulder had been lifted off her back”. I am there to ask and listen. It is their time to explain their world to me and I am honored. I have learned so much. It is tragic for a 14 year old girl to lose her hair because of chemo. I have heard a 6 year old say “How come they can send a man to the moon but can’t cure my leukemia? Am I not a priority?” I have heard children and teenagers talk about isolation and how people treat them differently after cancer and all they want is to hang out and be the same like before. They are wise beyond their years and many times they want to reach out and help others. I end each session with “if your best friend was diagnosed with your disease what would you tell them?”. This is where they shine. You can be brave, knowledgable, strong and articulate at any age - I’m just lucky enough to be the one to capture it.