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However, thanks to a newly released book entitled This Star Won't Go Out: The Life and Words of Esther Earl, I had the rare, but wonderful opportunity to "meet" a girl whose condition was far different than mine, but seemed to understand everything I've been through and the suspended reality of my life.
The book is a collection of Ether's journals, letters, drawings, and fiction that is complemented by reflections and essays by her family and friends which together tell the story of her remarkable outlook on life and how she used her passion for life to transcend the horrors of the cancer she battled. Although she ultimately lost her battle at age 16 in 2010, her spirit is alive and well in the pages of the book she never lived to to see realized in such a beautiful fashion.
What really hit home for me when reading the book, was her astute ability to put the mixed feelings of being chronically ill into words. I have long tried to communicate the darkness of pain, guilt, and self-doubt that are my constant companions each and every moment of the day. However, she defied this darkness through her writing and wholehearted passion for her various interests. Without inhibition, she discloses her fears and deepest thoughts about existence and the meaning of life. Like her, I want to make a real difference in the world despite my limitations and disabilities and to render my pain and suffering into something that transcends the cruel claws of illness. She refused to be defined by anyone but herself and despite the fact she was not perfect, in the words of one of her friends, "she was the epitome of how to be imperfect."
Over the course of reading the book, each new voice instantly felt like an old friend. The loss and grief her friends and family expressed in the wake of her passing really hit me and has stayed with me from day one. I join among the thousands who will never meet her in person, but will be forever changed by her message of love and hope. As long as there is one, the other can always be found. The title of the book, This Star Won't Go Out, celebrates her namesake (Esther means star in Persian) and her family and friends' mission that Esther is not forgotten, nor will they cease to raise awareness for the disease that took her prematurely. From the moment I closed the book, I became a living representation of this mission, and will carry Esther's memory wherever I go.
Trying to assemble words to adequately describe the life-changing experience of reading this book, I cannot recommend it enough for teens facing any medical challenges as well as their loved ones. Yes the subject matter is difficult, but the book is not a sad book. On the contrary- it's the opposite. This Star Won't Go Out is a celebration of life and inspires one to face their fears and make each day count.
To order the book, click here to visit its page on Amazon.
For more information about Esther's story and the foundation created in her memory, click here.