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Originally published July 30, 2013 at 3:16 PM | Page modified August 2, 2013 at 12:35 AM

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NPR host Scott Simon tweets his mother’s dying days

As NPR’s Scott Simon sat in a Chicago hospital, grieving and saying goodbye, his 1.2 million Twitter followers were right there with him.

Los Angeles Times

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Very powerful, especially for anyone who has recently lost a parent, or knows it's not... MORE
I'm living this h*ll right now. My mother is dying and is in hospice in our home right... MORE
I'm going through this now without social media. Regardless, it helps. Thanks Scott. ... MORE

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Mother asks, “Will this go on forever?” She means pain, dread. “No.” She says, “But we’ll go on forever. You & me.” Yes.

These are the words of a son saying goodbye to his mother in the 21st century.

Mother called: “I can’t talk. I’m surrounded by handsome men.” Emergency surgery. If you can hold a thought for her now ...

For Scott Simon’s 1.2 million Twitter followers, the end of his mother’s story began with that wisecrack sometime around July 16.

Mother cries Help Me at 2:30. Been holding her like a baby since. She’s asleep now. All I can do is hold on to her.

Most Americans know Simon by his voice: worn but fun, brightening up NPR’s “Weekend Edition Saturday.” But on this weekend he was telling his story in 140-character installments on a medium more commonly used for ephemera than for navigating the suffering of an aging parent.

I love holding my mother’s hand. Haven’t held it like this since I was 9. Why did I stop? I thought it unmanly? What crap.

For several days, in a hospital somewhere in Chicago, the end-of-life struggles of Patricia Lyons Simon Newman Gilband, 84, have been watched the world over. Many readers have been moved to tears, while others have had to look away, taken aback by the intimate view Scott has shared of his mother’s suffering, all the way to her last breath.

I don’t know how we’ll get through these next few days. And, I don’t want them to end.

A public death

The fact that Simon’s tweets have gone viral say as much about life and technology in the 21st century as they do about his ability to transform his mother’s pain into poetry.

Death wasn’t always considered such a private matter. Before the 20th century, death in the United States “used to be very public,” said Deborah Carr, a professor of sociology at Rutgers University who studies death, dying and bereavement. “People weren’t so isolated in the hospital; funerals were at home.”

Western societies, as the historian Philippe Aries argued in 1974, began to praise quiet mourning to limit the “unbearable emotion caused by the ugliness of dying and by the very presence of death in the midst of a happy life.”

“Death, so omnipresent in the past that it was familiar, would be effaced, would disappear,” Aries said. “It would become shameful and forbidden.”

Yet a different narrative has begun to take hold in the 21st century as death has collided with the age of reality TV, social media and publishing houses hungry for confessionals.

In 2009, British reality TV star Jade Goody’s death from cervical cancer became a tabloid sensation with the aid of Goody’s publicist. After Pastor Rick Warren’s son committed suicide in April, he memorably shared his grief over social media.

The ongoing transition hasn’t arrived without friction. When the writer Susan Sontag died in 2004, her partner, the photographer Annie Leibovitz, documented the process, creating photographs that Sontag’s son later criticized as “carnival images of celebrity death.”

Likewise, Simon’s tweets about his mother have proved too powerful for some Twitter users who were also confronting loss.

“Too soon for me to read the @nprscottsimon tweets,” one user tweeted. “But I’ll save for later, when I’m ready.”

“She once had to let me go”

My mother in ICU sees Kate & Will holding baby and tears: “Every baby boy is a little king to his parents. “ So I tear too.

“We usually only get to see moments like this in fiction, right?” Peter Sagal, the host of NPR’s “Wait Wait ... Don’t Tell Me,” said in a phone interview Monday.

Sagal knows both Simon and Gilband, and has been gripped by Simon’s messages. When he tried to explain Simon’s tweets to a friend, “it sounds awful, exploitative and weird — but when you look at the feed, it’s not.”

I just realized: she once had to let me go into the big wide world. Now I have to let her go the same way.

“It’s amazing to be able to watch this transpire in real life, this extraordinary weekend he’s spending with his mother,” Sagal said.

“This is happening right now to people we don’t know, who don’t have a public radio show, who don’t have 1.3 million Twitter followers. … The hospital above and around them are filled by stories like this, and it’s amazingly humbling to be able to follow along with one of them.”

In middle of nights like this, my knees shake as if there’s an earthquake. I hold my mother’s arm for strength--still.

Comfort comes in many forms

Social media is playing its own role in reshaping the handling of death in American life, partially as a medium that functions as a gathering point for public mourners while giving grievers room to express themselves how they like.

Many followers praised Simon’s openness for giving them the sense that they were not suffering alone. As one user put it, “comforting to know others are going through the same thing as my fam. May your mom pass peacefully, as I hope my father will.”

The need for comfort is a powerful one among readers dealing with death. The publishing industry has enjoyed sales from a series of books about near-death experiences — with such titles as “90 Minutes in Heaven,” “Heaven Is for Real” and “To Heaven and Back” — that have promised peeks at life on the other side of mortality. (One such bestseller, “Proof of Heaven” by Eben Alexander, recently fell under criticism after Esquire magazine published an expose questioning several details in Alexander’s story.)

For Carr, the Rutgers sociologist, the shifts in technology and the 21st century publicity culture have come hand in hand with ongoing medical shifts that have given Americans longer lives and, in so doing, longer deaths.

“We have many more opportunities to visit the dying person,” Carr said, giving family members and friends wider windows of opportunity for seeking closure, or just getting to know one another better. The increased popularity of hospice care has also driven up the number of deaths that happen in the home, closer to family.

“On average, there’s much greater acceptance of death today,” Carr said, “largely because more and more people have seen death.”

“We got along beautifully”

As her son tweeted from her bedside, Patricia Lyons Simon Newman Gilband — a train-car name she managed to put together from several marriages — was not completely voiceless. As her health made its final decline Monday night, a 2008 interview she gave with Simon, in which she banters with her son about living in Chicago, had already begun recirculating.

“You’ve always been a lot of fun. No matter what age, we all got — we were compatible. We got along beautifully,” Gilband told her son in that interview.

I know end might be near as this is only day of my adulthood I’ve seen my mother and she hasn’t asked, “Why that shirt?”

As their radio interview came to a close, Gilband told her son, “It’s been a beautiful journey knowing you.”

When she asked for my help last night, we locked eyes. She calmed down. A look of love that surpasses understanding.

“I love you, sweetheart,” she told him in 2008. “And stop crying.”

On Monday evening, a brief tweet.

Heart rate dropping. Heart dropping.

And then, finally, a son wrote these words:

The heavens over Chicago have opened and Patricia Lyons Simon Newman has stepped onstage.

She will make the face of heaven shine so fine that all the world will be in love with night.

Follow Matt Pearce (@mattdpearce) on Twitter

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