I must be living in a vacuum not to have known the amazing story of Esther Grace Earl who was diagnosed at age twelve with thyroid cancer and who died shortly after turning sixteen. She is the person who John Green dedicated “The Fault in Our Stars” to and even though he reminds us that Hazel’s story is not Esther’s story, her family and friends can’t help but see Esther in his words. I have struggled to write this post about the book. After all, how do you sum up this young girl’s life and impact on others in the world and do her justice? The truth is, no one can do a better job of doing that than the way Esther, her family and friends did in her memoir “This Star Won’t Go Out.”
I came across her book quite by accident. I had not heard of her nor was I a visitor to the many online communities that she was so important to so I had no idea what to expect.
By the time I had finished reading the introduction, written by her friend John Green, I knew I had to read Esther’s story because I had this feeling that only comes with very special stories; that I was being let into a world that I would never really know what it felt like to live in but that I was being given the privilege of being invited into anyway, all the while knowing that I would miss it once it ended.
In her memoir, Esther more than once made mention that she wanted to make a difference in the world and it's clear that she did and still continues to do so. As a child life specialist my interaction with a patient often starts and stops with the hospitalization. This memoir gives an unprecedented look into life outside of the hospital and the way in which Esther makes connections and meaning out of her disease. I have written on the topic of how technology and social media provide coping outlets for hospitalized patients but the support that Esther found and the lives she touched through various online communities amazes me. Nerdfighters, the Harry Potter Alliance and the members of Catitude, just to name a few of them. Her book has already been on the New York Times best seller list and the CaringBridge page her parents started when she was going through treatment still has visitors posting on it today, years after her death.
It’s a given that each person who reads Esther’s story will connect with it in different ways.
I know that there were things I took away from it as a child life specialist who has worked with pediatric oncology patients that were different than what I felt reading it as a mother who has a child the same age as Esther was when she was diagnosed. In one of the posts on CaringBridge after Esther died, her family invited anyone, “whoever you are and wherever you may be” to join them in remembering and celebrating Esther’s life and they have given us the opportunity to do so with this book. I would encourage anyone to accept that invitation and find out more about her on tswgo.org. And remember, don’t forget to be awesome.