The girl who inspired Green was a lovely girl named Esther Earl. I know she was lovely because I was given her book for my birthday. I couldn't put it down and finished it last night.
Her book is called, "This Star Won't Go Out."
Esther, nicknamed Star by her family, died of cancer when she was 16. She had lived with it for many years, always knowing the end.
It's a coming of age story, told in her own words, about a girl with a terminal illness who knew she would never grow up. Yet in reading the book, you knew who she was and who she would become. She was a talented writer, artist, and most of all, human being with hopes and dreams. Like all of us who know our life will be cut short, her dreams were not far into the future. She didn't dream of marriage, weddings or children. She focused on her day-to-day life and she didn't think farther than maybe a first kiss or the next convention. The book consists of her blog posts, her letters to her family, her online posts (she, too, was active in social media - as many of us who don't feel well enough to socialize are.) Her loving family gathered her writings and posts, put them together with their own thoughts and blog posts of that time, and made a compelling book.
The interesting thing was that I could relate to so much of it despite the 35 year age difference. The dying experience is universally about accepting loss, but it doesn't really matter what you are going to lose. It's the same feeling - the same idea of saying good-bye to your future and learning to live, love, and appreciate the moment while you have it. Esther had never had a romantic relationship and I have almost raised my children, and yet there are so many things she said that I understood on a deep level - things that only a person in our situation can. Minor things, such as needing to sleep and rest all the time even though we seem healthy - which makes us feel lazy and can even irritate our families. She discusses deeper things, such such as feeling guilty for what we put our families through. She wonders how they'll do without her, yet somehow believing they'll be fine - not because she thinks they don't love her or she'll be forgotten, but because she has faith in their resilience. She, like me, understands that life goes on without us and those who love us will continue on. She's deeply religious, which I am not, yet it is a natural part of her life and makes sense for her and I understand her completely. In the end, we were more alike than different.
She missed so much that I had, boyfriends, marriage, children. But even more than than what she missed - she HAD so much. She had a life well-lived - an excellent life, with people who truly, deeply loved her and whom she loved in return. That says a lot. There are many men and women my age or older who cannot say that. More time would have given her more experiences, but ultimately would not have changed what she had or who she was. She had done good in the world either way.
She also died well. Which is more important than you think, and is something many of us hope for. It is the last thing we can give our families.
Is it sad? Absolutely. Get the book and add some tissues.
Uplifting? Amazingly so. It defines what a life should be. She was loving, accepting, giving and flat out remarkable. Not because she was dying but because she lived. Just the letters she wrote to her family proved she was wise beyond her years - while still loving teenage things like making "smilies." She made her mark on the world, despite her age.
Her book is not about death. It is about enduring love. This one girl made an impact on people and her legacy won't die until they do. She'll be remembered all their lives. Who knows, maybe her reach will extend beyond a generation or two. Maybe this book will be taught in a class one day. Her personality came shining through her words, letters, and silly drawings. Her personality was how to love.
Because she was an online presence, people said similar things about her that they have said about me. We both found those things wonderful, but not necessarily on the mark. I think some of it comes from fear of death. People believe they would not accept their fate the way we have learned to do, and those who do know a secret. I don't feel like an inspiration or anything but a person living through a sad thing. The truth is, when given no choice you learn acceptance or you live miserably and fearfully. Esther was handed lousy cards but played them the best she could, even at her tender age. That is all anybody can do, and it is what most people find they can do. Now her parents, in finding a way to accept her death and move on are doing the same.
She said it best, so I am just going to quote her from page 313, 20 days before she died and while she was waiting for scans (that turned out to be good - again, it shows how swiftly this disease turns):
"I feel happy that I'm still alive, but I feel kind of shamed that I'm not doing that much with my life. I feel kind of like I'm fooling people, because you know, in my videos, and in what John Green and all those amazing people have said about me I feel like I am fooling you all, because I'm not always awesome, and I'm not always strong, and I'm not always brave, and you guys should know that, you know? I mean, I'm not always this perfect person. I get pissed. I do stupid things. I ...get angsty. I cry. I hate my cancer. I judge people. I yell at my parents. I ... sometimes wish I'd never gone through this, and then I realize that if it happened it's who I am, and then I get all like "Oh that's just confusing." But then I sometimes I wish it had never happened, the cancer thing."
Amen, girlfriend.
Her parents have started the Esther Grace Earl Foundation, which provides help for families whose children are diagnosed with cancer. It is a charity I can't help but support. When you are making your charitable donation for the year, please keep it in mind. While I have been very vocal that research is most needed and "awareness" is completely unnecessary and anachronistic, I also believe patient/family support is vital. Having been on the receiving end, it is an amazing help. So please include this foundation on your list.
Esther Grace Earl |
(Just an unnecessary disclaimer: Nobody has contacted me from the family or publisher, and the book was a gift from my (almost) daughter in law so this is a completely independent review.)
Just told someone to read "fault in our stars" today - and yes have tissues with for that one too. I had to use mine and my kids napkins on the plane because I didn't have tissues along with the wet wipes I had packed. Imperfectly timed reading the end on the plane to family vacation which is where all the crying happened for me. I'll have to add this to the list- 33 year old BC patient hoping to maintain NED
ReplyDeleteI hope you maintain it too! Odds are good,keep that in mind. I adore the internet but sometimes you get a twisted view and things seem more likely to happen than they are.
DeleteAnd, you gave excellent advice - don't read either of these books in public!!!
After reading "Fault in Our Stars" on my Kindle, I had to order the hardback for my cancer shelf. It's at least in the top 3 of my favorite books about cancer. I found it brutally honest. I've always said that it sucks having cancer but it would have been unbearable if it had been my kid.
ReplyDeleteDownloading Esther's book now.
Agreed. I'd do this 20 times over if it would prevent my kids from experiencing. In fact, I'd do it 1000 times over if it would prevent any kid from experiencing it, and I'd give up time to give more to a girl like Esther. Although she had fuller life than many people who die at 80, she could have used more time and if it was up to me, I'd give it to her.
DeleteI am definitely going to have to read it. Thank you for sharing.
ReplyDeleteElizabeth J.
Remarkable girl; I'm going to download the book ASAP!
ReplyDeleteJust downloaded both books and will contribute to the foundation in Esther's memory. Ann, I continue to be grateful for your being here, and bringing stories like this to the rest of us. Wishing so much for you going forward,
ReplyDelete-Debra
Wow. It sounds like an amazing book by an amazingly insightful young woman. I think I'll get it -- and the tissues.
ReplyDeleteRead the Fault in our Stars after my daughter recommended it. Loved it and she did too. She can't wait for the movie. I will have to read Esther's book as well.
ReplyDeleteAmazing young women, thank you so much for sharing Anne,very humbling and such a lesson to us all x
ReplyDeleteI admire her courage to live by, I really appreciate your work piece. Thank you for this article
ReplyDeleteNice article :D thanks for sharing the info
ReplyDeleteI bought her book as a result of this... and it was a good read... also I cried as well. Thanks for the recommendation.
ReplyDelete