Wayne and Lori Earl are pictured at the Here & Now studios. (Jesse Costa/Here & Now)
Esther Earl was diagnosed with cancer at the age of 12, and died in 2010 shortly after her 16th birthday.
But in that short time, she developed a network of friends through social media, blogging and YouTube videos. She was a devoted fan of the Harry Potter books and was an active member of the Harry Potter Alliance.
At LeakyCon, a convention for Harry Potter enthusiasts, Esther met young adult author and vlogger John Green, who would become a friend.
Green dedicated his best selling book “The Fault In Our Stars” to her and said that she was an inspiration for the novel.
Now Esther’s parents, Lori and Wayne Earl have published a collection of Esther’s writings, as well as messages from friends and an introduction by John Green in a new book, “This Star Won’t Go Out: The Life & Words of Esther Grace Earl.”
The Earls have also started the This Star Won’t Go Out foundation to help the families of cancer patients. They join Here & Now’s Robin Young to talk about their daughter and the book. You can read John Green’s introduction and one of Esther’s diary entries below.
[Watch on YouTube]
[Watch on YouTube]
Book Excerpt: ‘This Star Won’t Go Out’
By Esther Earl with Lori and Wayne Earl
Introduction
by John Green
bestselling author of The Fault in Our Stars and
co-creator of the vlogbrothers channel on YouTube
My friendship with Esther Earl began, as so many great love stories do, at a Harry Potter convention. My brother, Hank, is a wizard rocker, which means he writes songs about the Harry Potter universe, and so he’d dragged me along to LeakyCon 2009, a celebration of all things Potter in Boston. The first night of the conference featured a banquet and concert, which of course meant quite a lot of dancing.
The great thing about the Harry Potter fan community is that no one judges you. Being a nerd isn’t seen as a character defect. Unironic enthusiasm is celebrated, and never more so than on the dance floor. At a Wizard rock concert, it doesn’t matter if you’re a great dancer or a terrible dancer so long as you are committed to your dance moves.
Which I am not. I find it impossible to dance as if no one were watching, even when no one is watching. So when everyone rushed to the dance floor, I hung back. My strategy at a dance event is to lean against a column or wall and stare thoughtfully at the musicians and the dancing crowd as if I am thinking Extremely Intelligent Thoughts, so that anyone who happens to glance at me will hopefully feel that I shouldn’t be interrupted.
But I was interrupted by a small voice saying, “Are you John Green?” I turned and saw a girl wearing a nasal cannula and a nearly identical girl—her sister, I gathered—holding an oxygen tank. “Yeah,” I said. “Hi.” What followed was pretty standard: The girl—her name was Esther— liked the videoblog Hank and I make and wanted a picture. Her sister took the picture, and after a quick conversation, I went back to leaning against the wall.
A couple minutes later, a friend grabbed me and tried to pull me onto the dance floor. I spun around in panic and saw Esther and her sister Abby sitting at a table behind the dance floor and said, “I, uh, need to go. I need to go talk to those girls.”
This was the first, but not the last, time that Esther Earl saved me from catastrophe. I sat down next to them and began chatting. It turned out that Esther wasn’t just a viewer of our videos—she was a hardcore nerdfighter. (Nerdfighters are people who fight for nerds and celebrate intellectualism; the community grew out of the videos my brother and I started making in 2007.) Esther had been watching us for years. She would later help to maintain the biggest nerdfighter fan site, effyeahnerdfighters, with a small group of friends who called themselves Catitude. Catitude also helps run an annual nerdfighter charity project called the Project for Awesome. Hank and I have frequently turned to Catitude for advice and assistance. So it turned out that Esther and I already sort of knew each other.
We talked that evening in Boston for quite a while, boring the hell out of Abby I’m sure, about nerdfighter injokes and Hank’s music and our favorite Wizard rock bands.
I kept tabs on Esther after meeting her. We’d sometimes have brief Skype conversations, and I’d jump into the Catitude chat every now and again to discuss the fan site they ran, or their moderation of the forum, or just to hang out. It’s impossible to describe the speed at which people typed in those Skype chats: Ten or twelve people could produce thousands of words a minute, and Esther, although she was one of the youngest members of Catitude, kept right up.
I knew Esther had cancer, but I also knew that most young people with cancer get better, and I never wanted to pry too much, not the least because I had been working for years on a book about kids with cancer and I didn’t want my friendship with Esther to become a research project. For a long time, there was an element of denial in our relationship. I didn’t want to imagine that this hilarious, devoted fan might die, and Esther wanted friendships that weren’t defined and circumscribed by illness. Her physical disabilities made that difficult in real life, but on the Internet, she wasn’t Esther Earl Who Has Cancer and an Oxygen Tank. She was Esther Crazycrayon the Funny Girl in Catitude.
And then one day Esther and I were typing back and forth when she revealed that she was writing to me from a hospital bed, and—when I pried a bit—that she was actually in the ICU with tubes coming out of her chest to drain fluid that had accumulated in her lungs. Even then, she made it all seem very standard and casual, as if all fourteen-year-olds just occasionally need chest tubes, but I was concerned enough to reach out to her friends, who put me in touch with Esther’s parents, Lori and Wayne. Soon after, all of her Internet friends began to realize that Esther was terminally ill.
I realize now that I’m doing that thing where you create distance between yourself and your pain by using cold, technical phrases like “terminally ill” and by describing events rather than feelings, so: I was so angry—with myself for all the times I cut our conversations short so I could go back to work, and with the Earth for being the sort of reprehensible place where children who’ve done nothing wrong must live in fear and pain for years and then die.
I dislike the phrase “Internet friends,” because it implies that people you know online aren’t really your friends, that somehow the friendship is less real or meaningful to you because it happens through Skype or text messages. The measure of a friendship is not its physicality but its significance. Good friendships, online or off, urge us toward empathy; they give us comfort and also pull us out of the prisons of our selves. I imagine that part of Esther was sad to give up the illusion that she was going to be okay with her Internet friends, but what followed was a revelation for all of us. Our Internet friendships were real and they were powerful, and they became more real and powerful when Esther and her friends were finally able to acknowledge and openly discuss the truth about her illness.
A few months before Esther died, those Internet friendships became IRL for a while when several members of Catitude spent a few days with Esther in Boston. I was there for one day. I wish I could tell you how cool and strong I was, but in fact I cried for most of the day and could hardly get out a sentence at times. I wish I’d been more of a grown-up with Esther and her friends, that, like her parents, I could have been a comforting and calming and loving presence instead of a blubbery and scared one. But so it goes.
Still, it was a great day. We talked about our hopes and fears for the future, about the last Harry Potter movie (which sadly Esther never got to see), and about our happiest memories. Esther told me that her happiest memory had occurred a year back, when she was hospitalized with pneumonia and thought to be dying. She spoke about having her whole family around her, holding hands with them, feeling connected to these people who loved her infinitely. She used that word at some point referring to her family’s love, infinite, and I thought about how infinity is not a large number. It is something else entirely. It is boundlessness. We live in a world defined by its boundaries: You cannot travel faster than the speed of light. You must and will die. You can-not escape these boundaries. But the miracle and hope of human consciousness is that we can still conceive of boundlessness.
We watched a movie Wayne and Lori had made
of Esther’s life. We ate Chinese food. We cried a lot together. Esther took breaks—for naps, to throw up, to have medicine injected into the port in her stomach—but she was fully with us, as alive as any of us, as capable of love and joy and anger and grief. And as much as I didn’t want our friendship to be about my writing, I couldn’t help but be affected by her as a writer and a person. She was so funny, sharp-edged, and self-aware. She had such an improbable capacity for empathy. And most of all, she was a person, complete and complex. We have a habit of imagining the dying as fundamentally other from the well. We hold them up as heroes and imagine they have reserves of strength forbidden to the rest of us. We tell ourselves that we will be inspired through the stories of their suffering—we will learn to be grateful for every day, or learn to be more empathetic, or whatever. These responses, while certainly well-intentioned, ultimately dehumanize the dying: Esther was uncommon not because she was sick but because she was Esther, and she did not exist so that the rest of us could learn Important Lessons about Life. The meaning of her life—like the meaning of any life—is a maddeningly ambiguous question shrouded in uncertainty.
Later that night, Esther, her friends, and I went for a walk (taking turns pushing Esther’s wheelchair) out into Boston to get coffee and gelato. I will never succeed in explaining to you how fun this was, how much it felt like a grand adventure along the lines of scaling Mount Everest as we wound around the centuries-old streets in search of dessert.
I made a video about Esther a couple weeks later, and she soon became something of a celebrity in the nerdfighter community. For the last months of her life, she handled this newfound attention with grace (which was, after all, her middle name). She even started making her own vlogs, and even though she was very sick and within weeks of death, they were funny and charming and found a broad audience. We stayed in touch, and she kept visiting with her friends in the Catitude chat, even when the conversation at times moved too quickly for her as her condition worsened.
The last thing she ever filmed was part of a Catitude collaboration video for my thirty-third birthday, which was on August 24, 2010. By the time the video went live, Esther was back in the ICU. She died in the early hours of August 25th.
When we think of death, we often imagine it as happening in degrees: We think of a sick person becoming less and less alive until finally they are gone. But even in her final days, Esther was wholly alive, as alive as anyone else, and so even though everyone who loved her understood she was dying, her death was still a terrible shock to me. She did not leave slowly, but all at once, because even when she could not get out of bed, she found ways to be fully alive: to play with her friends, to crack jokes, to love and to be loved. And then she was gone, all at once.
I’ve said many times that The Fault in Our Stars, while it is dedicated to Esther, is not about her. When the book was published, lots of reporters wanted me to talk about Esther; they wanted to know if my book was “based on a true story.” I never really knew how to deal with these questions, and I still don’t, because the truth (as always) is complicated. Esther inspired the story in the sense that my anger after her death pushed me to write constantly. She helped me to imagine teenagers as more empathetic than I’d given them credit for, and her charm and snark inspired the novel, too, but the character of Hazel is very different from Esther, and Hazel’s story is not Esther’s. Esther’s story belonged to her, and fortunately for us she was an extraordinary writer, who in these pages tells that story beautifully. I find comfort in that, but make no mistake: I am still pissed off that she died. I still miss her. I still find her loss an intolerable injustice. And I wish she’d read The Fault in Our Stars. I am astonished that the book has found such a broad audience, but the person I most want to read it never will.
I mentioned earlier that when Esther kept me off the dance floor that night in 2009, it wasn’t the last time she saved me from catastrophe. In fact, she is still saving me, all the time. In these pages, and in my memories, she reminds me that a short life can also be a good and rich life, that it is possible to live with depression without being consumed by it, and that meaning in life is found together, in family and friendship that transcends and survives all manner of suffering. As the poet wrote in the Bible’s Song of Solomon, “Love is strong as death.” Or perhaps even stronger.
[Watch on YouTube]
Esther Earl’s Journal
December 8, 2008
You know what’s kind of weird?
Every night, almost, while I’m going to bed, I talk kind of to myself and kind of to God (my form of prayer, I suppose). And while I’m talking to God, it’s no doubt I talk of my pains and also of cancer. That is not the weird part. The odd part is that I usually end up having tears roll down my cheeks, but I’m not sure why since daily I’m not (too) sad about cancer. Maybe it lets off some of my emotions that normal* people direct in everyday social situations . . . I have no idea.
So to change the subject, lately I’ve been thinking about my identity. Why, you ask? (Maybe you’re not asking, but you’re my journal, so you’re gonna ask!) Well I drew this very not-so-good self-portrait of myself the other day, and Abe saw it. He was like, “You drew that? Without any picture?” and was slightly in awe, which was cool that at least Abe was . . . in awe. And then he said, “but where’s your nose thing?” pointing to my nasal cannula. To me it seemed more insightful than something that bothered me. However Mom heard, and Dad too, and later Dad said Mom cried.
It is kind of sad I guess, to see my energetically, enthusiastic 5-year-old brother not remember the days when he was 2/3, and I would take him to play on the bars in Albertville, or he would watch me do flips all around the bar. But I kind of think of Abe as not remembering, but everyone else as. But now I’m realizing that it has been over 2 years, and memories began to fade, and are replaced with making a “HUGE” trip out to dinner, or something. I hope not all the memories are bad. :\
Another thing Abraham said which was funny and not sad (woo!), and also quite original, was, while we were decorating the tree, Abe said, “Oh! Just one more!” as he tried to pick up Mom. It was funny funny.
Oh yeah! We decorated our Christmas tree last night! Dad and the boys went to Home Depot and picked a pre-cut one that they brought home and set in the corner of the living room. We then ate dinner, which was stew, and, yes!, I did go downstairs to eat with everyone! Minus Abby though. :P After dinner Angie went to bed and we all decorated the tree. Abe loved the ornaments of him*, and Graham seemed to like hanging the ornaments, “down low so they would fall on the tree skirt not break” he said.
So that was loads of fun! I wish Angie had stayed upstairs long enough. However she has a “life.” Two nights ago she “slept” over (aka stayed awake over) her friend Michelle’s house. Apparently she was tired last night, go figure.
I think that because I have cancer, I spend a lot of time with the ’rents. And because of that I think I get along best out of us sisters, because of it, with the parents. Abby does, I guess get along with them but doesn’t always respect them. I think Angie respects them even less, just by the way she treats them, but maybe not. I’ve never asked her . . . But anyway, the way she treats them gets on my nerves lately, and because of it sometimes I don’t say that much to her, and then my head says, “don’t do that Esther.” So I’m nice to her again. But by that time she’s gone back under “her life” rock, which she would do anyway if I were nice or mean. I’m usually always nice though. I think I just completely contradicted myself there, hah.
*Normal?! What the heck is normal? Healthy is, I guess, my definition of it. Apparently.
*ego maniac! Nahhh :D
Excerpted from the book THIS STAR WON’T GO OUT by Esther Earl with Lori and Wayne Earl. Copyright © 2014 by Lori and Wayne Earl. Introduction copyright © 2014 by John Green. Reprinted with permission of Dutton Books.
Guests
Lori and Wayne Earl, parents of Esther Earl and authors, with their daughter, of “This Star Won’t Go Out: The Life and Words of Esther Grace Earl.” They live in Quincy, Mass.