Telling My Story

In 1971 I was born prematurely with an extremely rare esophageal birth defect. I had several surgeries as a baby and spent much of my early life in and out of the hospital. It was touch-and-go for a very long time. Most of my childhood after about age 3 was healthy and my health stabilized until I was about 21.

Since age 21, I have had 3 major surgeries to repair my esophagus, hundreds of tests and several long hospitalizations. My digestion will never be “normal,” and the struggle I deal with is constant and consistent. It is at times harrowing, often uncomfortable, and extremely confusing.

I have alluded to my health struggle before without ever telling my full story. I have always known that my experience is what allows me to tap into the richness of life and that I bring that to all of the conversations we have with kids, most especially to those with illness. I am deeply aware of how short life is, how fleeting and how meaningful.

So, why now? An opportunity came into my life to tell my story as part of a show ONLY HUMAN on NPR's WNYC.  I meditated on it and decided that sharing my experience could be helpful to others. When I looked deep down, I recognized that it was unfair to ask others to share their experiences if I was not willing to share my own. 

Listen to me tell my story:

http://www.wnyc.org/story/life-medical-experiment/

I hope it makes you laugh, brings you some insight into who I am and why documentation is so important to me. I hope it moves you, makes you think, and encourages you to share.

Thank you for listening, for reading this blog, for sharing your own stories and most of all for supporting me and our work. All stories are worth telling and I appreciate your support in our mission to do so.  

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