LAST week I shared with you the heart-stirring story of Seth and Hindy, and Ayelet, may her memory a blessing.
When I wrote that column I had no idea of the extent the tens of thousands of people around the world who were closely following this valiant and inspiring story and family. Im not sure anyone realized this until the thousands of comments poured in by Ayelet Nation devotees.
Alas, the Internet support page has sadly turned into an open memorial book, charged by deep, heartfelt emotion and a personal sense of loss at Ayelets passing.
This Ayelet Nation story that had gone viral is now generating a pertinent discussion about sharing private stories and journeys in the age of Internet access.
The Forward ran a story titled When a Familys Struggle Goes Viral, exploring the constantly changing boundaries between public and private in todays electronic age.
I gave this some thought as I felt drawn deeper and deeper into the story of Ayelet. The Forward quotes Adrienne Asch, a bioethicist who is founding director of The Center for Ethics at YU: Not everyone is comfortable with this online, open-source model of community.
For the most part, that would normally be me. I was late in signing onto Facebook, and even then there is a story of how it happened. Plus, I am somewhat dysfunctional at technology, so for quite a while it was actually a friend of mine who, with my password in hand, managed my not very active Facebook account.
Not once have I ever posted a photograph of any of my nieces or nephews online, nor do I ever plan to. And when it comes to taking painful, private stories into massive public shows thats not my style (under most circumstances).
SO why was Ayelet Nation different?
Asch continues: 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, its good that were not keeping those things private, but along with that comes the question of why were 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.
All important points to be aware of and sensitive to.
And yet, Ayelets story was so very public from the beginning. What was different is that the publicity was thrust on the Galenas initially, by no choice of their own. Seth and Hindy needed to find a bone marrow match for Ayelet. And fast.
To their enormous credit, they mobilized all their talents and networks, aggressively doing absolutely everything they could to publicize their story so as to find the closest match possible to save their daughters life.
The illness of Ayelet, of blessed memory, and what we all so desperately hoped for her cure were, by definition, public.
Once fate put them in the public eye, then, as Seth said at the funeral, the only strength we had was to realize we absolutely needed help . . . and we reached out, through the blog, through Facebook, through synagogues . . .
SADLY, every once in a while an illness comes along, or someone with a particular illness comes along, and their story revolutionizes the public awareness of that illness, and changes the way it is treated forever. Susan G. Komens truncated life from breast cancer is such an example.
Something about Ayelets infectious soul captured the world. Not that anyone wants to be chosen to be the teachers for such life lessons, but I can already sense a paradigm shift is taking place in reaction to Ayelets passing. The world will never be the same in terms of bone marrow transplant awareness.
I think that from now on, in the merit of Ayelets story, it will become standard procedure to get swabbed as a potential donor.
In the future, perhaps there will be no such thing as a waiting list or the need for family members to galvanize all their resources and networks to try and find a life saving bone marrow match for a little girl.
Like Lance Armstrongs yellow wristband and Susan Komens pink ribbon, now it will be Ayelets beads of courage and getting swabbed for The Gift of Life. It is becoming increasingly clear that Ayelets life and death are turning out to be just the beginning of her story and legacy.
NOT that I would ever stand in judgement of how anyone chooses to cope with illness or any painful challenges. But it happens to be, the Galenas didnt choose. The situation chose them. Yes, there will always be some who intentionally and in poor taste make public-reality dramas out of their personal lives, whether for celebratory occasions or painful challenges. Reality TV has taken on a life of its own and bled into our lives a culture of narcissism and attention. Most, however, are just humbly and in desperation, reaching out.
We all know amazing people in our lives who, with quiet dignity, heroically struggle, really struggle, without making a big deal out of themselves or their situation. Publicity and pity are the last things they crave. No one except for those of us fortunate to cross their paths and lives even knows of them. These are truly beautiful and inspiring people of this world.
Asch further says:
There is a risk in creating a community of gawkers. This is a soap opera, but its real life.
Normally, these words would would resonate with me. But something that was different about Set and Hind and Ayelet was that I never felt like a gawker.
Somehow, the incredible chemistry of this nuclear family managed to create a sense of true community, all rallying around Ayelet. I felt like a participant. As opposed to witnessing something, I felt like I was a part of something.
The Galenas radiated something so ego-less, so agenda-less, so bitter-less, so unpretentious. This wasnt about convincing anyone about anything, not about G-d or spirituality or observance. It was about rallying with love around their daughter and doing everything in our spiritual cache to contribute to making that happen. That authenticity came through and touched thousands.
In a world where many choose to take their life tackily to the show-ey public sphere, the Galenas, in contrast, under the worst of circumstances, when lifes lamp focused on them and catapulted them into the public sphere, did not deteriorate into a Kim Kardashian-like soap opera sob fest.
Instead, they embodied class, dignity, valiant strength, faith, leadership and grace that expressed more of a Kate Middleton quality.
Although the thousands who followed became Ayelet Nation, it was anything but voyeuristic. It was an organic journey of hope and care unfolding. Unknowingly and unintentionally, Seth and Hindy and Ayelet became our mentors, and we their disciples.
Copyright © 2012 by the Intermountain Jewish News
