This Star Won't Go Out

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 cannot 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.