When a Family's Struggle Goes Viral

Essay

Mother’s Love:  Hindy Poupko Galena holds her daughter, Ayelet, who died on January 31 after a battle with a bone marrow disease.
AYELETGALENA.TUMBLR.COM
Mother’s Love: Hindy Poupko Galena holds her daughter, Ayelet, who died on January 31 after a battle with a bone marrow disease.

By Gabrielle Birkner

Published February 07, 2012.
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Ayelet’s death came 154 days after she received a bone marrow transplant at Cincinnati Children’s Hospital Medical Center. The infusion followed a nationwide search for a donor. Her family helped organize donor drives through the Gift of Life Bone Marrow Foundation, a Jewish group that helps match donors with patients in need of transplants. The effort — publicized on Ayelet’s Facebook fan page, and by such celebrities as rapper 50 Cent and “Gossip Girl” star Leighton Meester — didn’t yield an identical match for Ayelet, who suffered from a congenital disorder called dyskeratosis congenita. It did, however, locate near-perfect matches for 21 others in need of marrow or stem cells, a Gift of Life spokeswoman said.

Eye on Ayelet was launched in the run-up to the transplant, by Ayelet’s Web-savvy father, Seth Galena, a founder and editor of the “kosher comedy” website Bang It Out. It was created to provide daily updates to family members and close friends. By the fall, though, the blog was making the rounds in Jewish circles in North America, Israel, England, South Africa and elsewhere.

Yes, it’s easier to write a few sympathetic words, at convenient intervals, in the comments section of a blog than it is to sit with a family, day after day, in a hospital room and realize that your words are not up to the task of easing their pain. But the power of ‘Ayelet Nation’ wasn’t in the typed words of a single person; it was in the pooled words — and prayers — of thousands of people who felt connected to a family they had never met.

In turn, the Galenas felt connected to the community inspired by their story. “Most people said, ‘Oh, Seth and Hindy, you’re so courageous and so brave,’ but the only strength we had was to realize that we absolutely needed help,” Seth Galena told the estimated 1,000 mourners who gathered to say goodbye to Ayelet. “And we reached out, through the blog, through Facebook, through synagogues on the West Side, and everyone in this room, their strength is what kept us going. You pumped positivity into what everyone said was a hopeless situation.”

Many of those who attended the funeral, held February 1 at the Jewish Center, in Manhattan, knew the family only through its online presence. “Looking around this room, one cannot help but get a sense of what it means to be part of klal yisrael,” Rabbi Yosie Levine, of the Jewish Center, said, using the Hebrew term that refers to Jewish peoplehood.

But not everyone is entirely comfortable with this online, open-source model of community.

Adrienne Asch, a bioethicist who is founding director of the Center for Ethics at Yeshiva University, said the growing number of illness-chronicling blogs is part of a general trend of sharing that which used to remain private. “Things that we kept private out of shame and fear, it’s good that we’re not keeping those things private,” she said. “But along with that comes the question of why we’re making things public and what should be made public,” especially when the subject is too young to give consent.

“We have no idea how a toddler would feel about her story being distributed,” Asch said. “We can’t ask the millions of toddlers whose parents post photos of them on Facebook and blog about them and Tweet about all of their amusing or perplexing or painful or annoying interactions with their children.”

There’s risk in creating a community of gawkers. “This is a soap opera, but it’s real life,” Asch said.

On the Jewish parenting website Kveller, mothers and fathers frequently write about their young children, as well as about once-taboo topics like miscarriage. “People can look at it as voyeuristic, but people are forming really strong relationships,” said Deborah Kolben, the site’s editor.

Eye on Ayelet, Kolben said, is a powerful example of the extended support network that online forums can foster. She said, “In Jewish tradition, you’re not supposed to be alone when you grieve, so why should you be alone in the sickness?”

They weren’t alone, and they aren’t. “We read every single comment,” Poupko Galena told the Forward. “We read every single posting, and we found tremendous comfort in the universe of friends and families and strangers standing with us both virtually and in reality. And it has continued to be comforting in these past few days since Ayelet’s passing.”

Contact Gabrielle Birkner at birkner@forward.com and follow her @gabibirkner.


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