Paige Rawl grew up enduring intense bullying due to her HIV status. Her new memoir recounts the journey.
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.
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.
By Esther Earl with Lori and Wayne Earl
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.
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.
ROBIN YOUNG, HOST:
It's HERE AND NOW.
You might be a fan of John Green. He is the wildly popular young-adult author and vlogger - video blogger. In fact, the videos he made with his brother launched the online community Nerdfighters. Well, we want to introduce you, posthumously, to a young woman from Quincy, Mass., who adored John Green. She met him at LeakyCon, a convention for "Harry Potter" fans back in 2009.
(SOUNDBITE OF YOUTUBE VIDEO)
ESTHER EARL: I saw John Green! I saw John Green! And then I was like, OK. Well, I really want to take a picture with him. So my sister walked up - because I couldn't talk. I was like (makes gasping sounds) And I was drinking water. My water was like this, in my cup. It was like, shaking all over the place so I had to throw it out. Otherwise, it would spill. (Laughter)
YOUNG: Well, unbeknownst to Esther Earl, author John Green was taken with her as well. Esther Earl was diagnosed with thyroid cancer when she was 12. She was outfitted with breathing tubes, an oxygen tank, confined to her room for much of the time. After their meeting, she inspired John Green's best-selling novel "The Fault In Our Stars." It's soon going to be a movie. It's about a young girl confronting cancer.
And then, before Esther Earl died in 2010 at the age of 16, she inspired thousands more through an online community. Now, Esther's parents are sharing her blog posts, diary entries, their blog posts as well as messages from her friends, in a new book, "This Star Won't Go Out." And Lori and Wayne Earl join us in the studio with more. Welcome.
WAYNE EARL: Thank you.
LORI EARL: Thank you.
YOUNG: It's been a couple of years, but so sorry for your loss. We here in the New England area, you know, were following Esther's story. What was it like for you to read, after she passed, these writings?
WAYNE EARL: Well, it was moving. Of course, all along, I'd read her writings, not her diaries. But I - when she was a little kid, I gave her a book and said, write whatever you want, draw pictures; and I'd love to read whatever you do. Sometimes I take - especially in the last year - take papers out of the trash can and flatten them, and she'd say, Dad, you don't have to do that. But I said, I don't want to miss this.
YOUNG: In other words, you want to keep - read everything, even things she threw out.
WAYNE EARL: Absolutely.
LORI EARL: These were her journals. I think toward the end, she knew that we were going to be reading them and probably writing about her. But she didn't keep her journals knowing that. You know, they were just her thoughts and her worries, and her concerns and her silliness. And she was always, you know, an empathetic, caring young person. From the time she was really little, she was that middle kid in our family that just brought the whole family together. She, you know, we call her our hub child. (Laughter)
YOUNG: Well, it's funny you mentioned empathy because John Green who, again, was inspired in his novel by Esther, but he also said he was inspired through her and others in this online community to realize how much empathy young people have. Talk a little bit about that because there are parents who are petrified of their children joining these online communities.
LORI EARL: We've had the amazing privilege of getting drawn into those - that world, Harry Potter and Nerdfighteria. I mean, we kept tabs on her. But, you know, she was making these friendships. She was feeling like she was doing something meaningful. She got involved with The Harry Potter Alliance, which is a nonprofit that empowers young people to social activism. You know, she got involved on the Project for Awesome, which is the day when the Nerdfighter community basically takes over YouTube with celebration of videos for favorite charities. She was champion.
YOUNG: Millions know about this. But for those don't, the Project for Awesome, their clarion call, DFTBA...
LORI EARL: Mm-hmm.
YOUNG: ...don't forget to be awesome.
LORI EARL: Right.
YOUNG: Is that from John Green?
WAYNE EARL: It is.
LORI EARL: It's part of their organization. You know, they started the Project for Awesome. One of their bylines is to Decrease World Suck.
LORI EARL: LORI EARL: So, you know, it's like...
WAYNE EARL: Increase awesome.
LORI EARL: Increase awesome, decrease world suck. And the sense of purpose it gave her and the sense of involvement was - just gave her life. You know, it's like the walls around her melt away because she's making a difference. And, you know, they attribute - the Harry Potter Alliance won a $250,000 grant from Chase Community Bank, and a lot of it was because John said, let's do this for Esther because this was something she cared about.
YOUNG: Why? What did she begin to mean - we're hearing what the community meant to her, a child confined to her room had this huge world of friends. But what did she start to mean to this community?
LORI EARL: We don't like to really use the word symbolism. It's more that she gave voice to other people's desires to make a difference, and that even when things were tough, you could keep fighting. And she was doing that, and she was living that, and she was showing that. It's kind of like she has become a little bit of a celebrity, in some little ways. But she was already doing this. It wasn't something that happened just because she died.
YOUNG: Just because she died. In fact, many of the people that now - these young people in these fan forums, who didn't feel appreciated anywhere else, who knows what might have happened to them if they hadn't had friends like her. And they didn't know she was sick.
WAYNE EARL: She didn't disclose it because she didn't want to be marked by her cancer. She wasn't going to be the kid with cancer. She was going to be Esther. And people came to love her in that way, and she came to make a difference in their lives.
YOUNG: Yeah. You hear lots of stories about the Internet and how scary it is, and you've got teens. And it's true, we have to be careful. But it's also - it's an avenue to community.
WAYNE EARL: Esther would introduce us. She'd say, Dad, do you want to come in and talk to my friend Teryn here? She's on the line. I'd be no, no, no. That's your thing. I want to know, it's a real person? OK, good.
YOUNG: Yeah. Well - but ultimately, it's about cancer. I mean, she, you know, she has all of this that distracts her, that gets her to feel like she's outside of that room. But ultimately, it's about cancer, and she blogs about that, too. Let's listen to another YouTube video of Esther Earl.
(SOUNDBITE OF YOUTUBE VIDEO)
ESTHER EARL: I feel bored. I feel so many more feelings, but there are so many that I just can't even find them. I feel slightly overwhelmed by that, that I can't even figure out what all my feelings are. And I feel sad about things that have happened in my life. And I feel happy that I'm still alive, but I feel kind of ashamed that I'm not doing that much with my life.
YOUNG: This must be hard.
WAYNE EARL: Mm-hmm.
LORI EARL: There's lots of things that are hard. After Esther left us, I couldn't go into makeup aisles for a long time because she was known for her crazy eyeshadow, and never walked out of a store without buying her something.
YOUNG: But to this point that she felt that she was fooling people, like she was getting this fame and all these people were loving her; but, you know, I'm fooling you all because - this is from that same passage - I'm not this perfect person.
WAYNE EARL: She was pretty amazing, but she was just a real person. That's what she was saying; hey, I'm just like you.
YOUNG: Well, she lives on through the This Star Won't Go Out Foundation, which you founded, and it will help families of cancer patients.
WAYNE EARL: Yeah.
YOUNG: She also lives on this community. Talk about the Harry Potter Alliance, which had a campaign...
LORI EARL: They have a campaign that's coming up, and it's going to be about the idea of love being stronger than death, tying it all around Esther and...
YOUNG: And I have to say, if those - for those who read the book - and your friends know you have that - you tattooed that on your arm.
WAYNE EARL: Absolutely. Love is stronger than death - that's the grace, the shooting star.
YOUNG: From the Bible?
WAYNE EARL: From the Hebrew Scriptures.
YOUNG: But also, as you've said, Lori, a theme in the Harry Potter books. So how does this campaign going to unfold?
WAYNE EARL: On the premiere of John Green's movie, "The Fault in Our Stars," the movie premieres on June 6th. That's when the campaign will kick off, And it will end on Esther Day, which is August 3rd.
YOUNG: Her birthday.
WAYNE EARL: And we'll be at LeakyCon. They have the Esther Rocking Charity Ball at LeakyCon.
YOUNG: Wait. LeakyCon is during her birthday?
WAYNE EARL: It ends on her birthday, and the charity ball is this Saturday night. And they're going to dance in her honor; thousands of people dancing because Esther, she said, I just want to - according to her tweet, she said, I just want to be able to reach into bodies and pull out the cancer without hurting anybody.
Of course, she said, and I want to be able to dance, and I want the gift of words - capital W-O-R-D-S. And then she's got it. We're dance - she can't dance. She's not here to dance. But every time we look around the room and we see people dancing, we see Esther. And every time somebody does something good and right and honorable, we're doing the work that she can no longer do; that we can do, that she can do through us.
YOUNG: She is Esther Earl, the teenager who lived a full life and died of cancer in 2010. Her legacy lives on in not just the foundation we mentioned -This Star Won't Go Out - but the new book of the same name. We've been talking to her parents, Lori and Wayne Earl. Thank you so much for coming in.
WAYNE EARL: Thank you, Robin.
LORI EARL: Thank you, Robin.
(SOUNDBITE OF MUSIC)
YOUNG: And we'll link you to all sorts of websites at hereandnow.org. And Jeremy, DFTBA.
JEREMY HOBSON, HOST:
Don't forget to be awesome.
YOUNG: That's right. From NPR and WBUR Boston, I'm Robin Young.
HOBSON: I'm Jeremy Hobson. This is HERE AND NOW. Transcript provided by NPR, Copyright NPR.