Ithaca, N.Y. — Leyla Dietrich was fourteen and her family thought she had the flu.
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She was tired, sick to her stomach and sometimes one of her legs tingled. Doctors ran the gamut of medical tests, but weren’t finding anything, and Leyla kept feeling worse.
She had just turned fifteen when doctors found a lemon-sized lump in her brain. The diagnosis: glioblastoma, a cancerous brain tumor known for spreading quickly. Her doctor predicted she had a few months, at best.
But that sinking, tragic feeling in your gut? That’s exactly the reaction Leyla Dietrich, now 17, doesn’t want you to have, says close family friend Melynda Wissar. That’s not because her brain cancer isn’t terminal — it is — or because she’s getting better. She’s not.
But she’s spent the last two-and-a-half years — time nobody thought she’d get — trying to inspire others to find the beauty in every moment. She’s traveled, appeared in a music video and co-written a book. And her message has spread via an online community of 550 people and counting, called Leyla’s Village.
Along with inspirational messages, the village is a place where people can share their support for Leyla and her family, through donated meals, the occasional lent mini-fridge, and offers to help drive one of Leyla’s five siblings to soccer games.
Many of the villagers are locals and know Leyla, or her family, personally, but even complete strangers have joined.
“New buds on winter’s trees become silhouettes against a slight pink backdrop making room for blue,” one woman in Texas posted a few days ago. “Leyla Dietrich, you don’t know me, but I love life. And I love you.”
‘Live Life Like Leyla’
Leyla’s Village has prompted an ideology of sorts, one borne of perspective about life in the face of death, and motivated by an interest in rising above the petty minutiae of life, Wissar says.
It’s called “Live Life Like Leyla” — some people have even gotten tattoos of L4, the shorthand — not a tribute to Leyla herself but the idea she is embodying: the finite nature of life itself and the reminder to appreciate every bit of it, Wissar says.
The animating spirit of Leyla’s Village is, of course, Leyla herself, transmitted through updates written by Jessica Jones, a family friend. The post themselves are heartbreakingly intimate, a window into a family tragedy that has turned into a community one.
“Happy mid winter Leyla’s Village,” one late January post begins. “I am snuggled in with Leyla watching snow float quietly on the air, listening to the soft sounds of her slumber. During the brief moments of her waking she asks me ‘Don’t we need to write something?’ and I tell her why of course we do…”
“So while she dances in dream land I am writing to you of all the things she wishes to say. Leyla wants you to know she is happy. Deep down soul happy. Grateful big happy. Laughter bubble happy. To know Leyla is to know that this is her truth. We invite you to live in this beauty with her.”
A beautiful, bright spirit
Dealing with such a diagnosis would be “impossible, even for a grown up,” Wissar notes, but then, Leyla has always been an incredibly mature child, with a “beautiful, bright spirit.” Leyla’s always loved music and art, and she and her girlfriends used to dress up and take pictures, “all that good, teenage, ‘I have my whole life ahead of me’ stuff,” Wissar said.
“I’ve never seen a child so — just grateful for the moments she’s living in. I never saw her saying “poor me,” feeling sorry for herself, even acting out in an angry way,” Wissar said. “And anyone in her situation absolutely could. Because her life has been stolen from her.”
But in all of this uplifting sentiment, it is impossible to deny that Leyla is in decline. She stopped chemotherapy two months ago and decided to move to a local hospice about a month ago, according to Wissar. Because the chemo is out of her system, the tumor in her brain is growing rapidly. Wissar says this may be her last spring.
This summer, Leyla’s family will put on a celebration of life for their child. The proceeds of a song by The Blind Spots and The Gunpoets and written for Leyla will help fund that celebration.
“Leyla is not a funeral girl,” Wissar said. “The last thing she’d want is people sitting around being melancholy, or hopeless, sad. She wants people to get together and be together and appreciate our lives.”
Leyla’s condition is such that only the closest family and friends can visit. Still, her villagers stay updated on Facebook.
“Words pour out of Leyla, but we can’t always help her through the terrifying awareness that she is losing the ability to find her words and tie them together in meaning. Equally unbearable is Leyla’s loss of knowing her own mind, and the way it connects to her body, as well as her eyesight and the ability to stand even for the briefest of moments. These ignite my fury heart and I wonder if we will succumb to flames,” Jones wrote in a Feb. 7 post.
“In these moments we are stripped bare. The memory of our soulshine is a glimmer seen from a great distance as we stand under a silent gray sky. This hurts our hearts as though we have swallowed big sky whole, and this sky crowds the space around our hearts and we ache with sadness. ”
Still, despite the tragedy of her condition, Wissar says Leyla, “one of the most positive people I’ve ever known,” must be remembered as such.
“A stunningly beautiful, radiant being — that’s how we want everyone to remember Leyla,” she said. “Although it’s sad and tragic and the loss of her is immeasurable, her message to the world is we’re not going to swim in that.”