A former pediatric nurse who shared her son’s surgery bill on Twitter as a reason to fight the Republican effort to repeal the Affordable Care Act (ACA) — also known as ‘Obamacare’ — received waves of support when her post went viral.
But then, as Alison Chandra wrote on Vox.com Friday, the death threats started and introduced her to “the darkness lurking in the savage corners of the internet.”
Chandra’s now-3-year-old son Ethan was born with a birth defect called heterotaxy syndrome, “a rare condition that can cause any of the internal organs to be malformed, misplaced, multiplied, or missing altogether. Ethan’s insides are a math all their own: two left lungs, five spleens, and nine congenital heart defects. It was his heart that had brought him to the operating room to have his chest opened four times in his short life.”
The bill she posted online was for a surgery totaling $231,115 in fees. Thanks to rules put in place by the ACA — President Barack Obama’s signature domestic policy achievement — Chandra was only charged $500.
— Ali (@aliranger29) June 24, 2017
She posted the bill and Ethan’s story on Twitter, only have it retweeted thousands of times. Calls and messages from reporters were pouring in, along with a great deal of support.
“But as more and more people saw the original tweet, the tide seemed to shift,” said Chandra. “I was still seeing lots of people on our side, but as articles were churned out and shared, it was clear that people weren’t reading much past the headlines. They came at me swinging, picking fights I’d never asked for. They called me ungrateful, a thief, a lazy mooch, an attention whore.”
The attacks grew “increasingly personal and increasingly violent,” she wrote. “Strangers were telling me it would have been cheaper to make a new kid, as if anyone in the history of the world could ever replace this bright light of mine, the boy who loves animals and can’t keep himself from kissing babies and always wants to sleep with one arm wrapped around my neck.”
“I was offered a .22 bullet, although I’m still not sure whom he meant it for, me or my child,” Chandra said. Right-wing commenters began spreading rumors that Chandra was “a foreigner or, worse, a terrorist” because a self-described “white girl from New Jersey” couldn’t possibly be named Ali Chandra.
She said she tried to reason with some of these angry attackers, but then realized they weren’t listening to anything she said.
“No one seemed willing to stop shouting long enough to realize that there was a real person on the other side of the screen, a mother who’s seen her baby go through hell and come out the other side four times now and who just wants him to have a shot at going to kindergarten too,” she wrote.
Then, she said, she was contacted by a mother whose child’s heterotaxy syndrome had never been properly diagnosed. Reading Chandra’s story online helped the woman find out the nature of her son’s illness and to connect to the community of other parents of children with the syndrome.
“It was like the sunrise after an endless night. My poor, beleaguered heart had been drowning in the fetid pool of the worst the internet has to offer, and suddenly I had been thrown a lifeline,” she wrote at Vox. “My focus narrowed back to what was important: my son, and the kids like him all across the country, the ones quietly living out their stories every single day with no fanfare and no media attention.”
With regards to the people who attacked her online, Chandra said, “I hope they heard me when I said I want to fight for something better for all of us, for those of us whose children rely on the protections afforded by the current laws and for those of us who are struggling under the system as it stands now.”