I found TFIOS (as I'll abbreviate it) shortly before its publication date in January of 2012. Back then, I had no idea who John Green was, who Esther Earl was, or even if I would like it. After all, when living as a full-time "professional sick kid" (from TFIOS), I wasn't sure I was ready to escape from my world of appointments, procedures and my mystery diagnosis into the world of childhood cancer. Nevertheless, I ended up preordering it and was hooked after a couple of pages (read my review from back then here). What drew me in so entirely was Green's ability to look past the main character's diagnosis to portray them as vibrant, living people- not pitiable teenagers held on the pedestal of "illness." But what also hit a nerve with me is his observations about what it is like to be living with illness but having no clear direction as to it's course, treatment, or effect on loved ones. While it's easy to write a clear decline for a character who is ill, it's almost unheard of for them to be living in flux as Hazel (the main character) does given no clear prognosis as to her decline. As someone who still has yet to know the extent to my condition, reading about another girl my age in this no man's land of perpetual waiting made me feel like I had found my first friend who completely understood the part of me who is always hidden beneath my smile and outward persona. Green was able to capture the constant struggle to remain "normal" when normal as one knew it will never again return and a chronically ill teen's deepest fears about pain, losing loved ones, and leaving behind those we love the most.
After reading, and rereading TFIOS both in good times and bad, I found comfort in Hazel's voice and reached out to her when I needed that one person in the whole world who understood me. But in getting drawn into her world, and subsequently John Green's, I had the privilege to meet another incredible girl who completely understood me- Esther Earl. Unlike Hazel, Esther was not a work of fiction, but a beautiful and brave girl who very much alive in our world. Unfortunately, I could not meet her in person, and instead got to know her as I did Hazel through the pages of a book. Written using her own words and those of the friends and family who loved her, This Star Won't Go Out (my review here) was published this year as a celebration of her life and legacy. Even more so than Hazel, Esther inspired me with her heart and humor when facing the toughest of life's challenges head on. We shared many loves including John Green, Harry Potter, and writing, which allowed me to once again feel a friendship beyond the page.
Emerging from the theater, I was exhausted but fulfilled. Everyone did their job and preserved the heart and soul of the film. I cannot thank John Green or the Earl family enough for their openness and willingness to put down these stories into print so that they can stand as a validation that a short life is not an insignificant one and leaving a legacy at any age starts with love, pure and simple.
In a preview of things to come, here's a snapshot from opening night of the TFIOS movie. In it, you'll see a special guest and my date for the showing- Locke, my new service dog and constant companion. Although we've known each other five weeks, our bond has solidified into one that I can only describe as star-crossed. Already he has changed my life by giving me new-found independence and hope which has helped me gain confidence and courage to face each day. In the picture, though it may be hard to see, I'm making a heart with my hands. Why? Well, every year on Esther's birthday, the nerdfighter community rallies to celebrate love and life on Esther Day. In leading up to the August 3rd holiday, the organizers of the event want to celebrate the every day leading up to the event in a variety of ways (find out more here.) One such way is going to a showing of TFIOS and snapping a photo with a hand heart to celebrate love. This small gesture is my way of remembering Esther and making sure her star won't go out.