"Our children want to know if you're dead forever. I tell them yes. But I wonder about that too." -- @nprscottsimon, August 4, 9:47 a.m.
In the 11 days since his 84-year-old mother died in a Chicago hospital, Scott Simon has been through a range of emotions. Gratitude for her life and love. Nostalgia for her wit and aphorisms. Stress and confusion at the logistics of last-minute flights, paperwork, the interment. Awe at how quickly it all comes and goes.
By most measures it hasn't been an unusual experience, but Simon, a host on National Public Radio, has shared his journey with more than 1.2 million followers through dozens of tweets before and after Patricia Lyons Simon Newman's death. Along with a flurry of interviews, he's turned the death of a private figure and the grief of a journalist better known for telling others' stories into a public event.
And in turn, say grief counselors, hospice workers and those who study the end of life, Simon has also spurred a conversation on dying in a culture where it's rarely discussed.
July 27, 2:38 a.m.: "Nights are the hardest. But that's why I'm here. I wish I could lift my mother's pain & fears from her bones into mine." 6:41 a.m.: "No real sleep tonight. But songs poems memories laughs. My mother: 'Thank you God for giving us this night & each other.'" 8:08 a.m.: "Mother: 'I don't know why this is going on so long. I'm late for everything I guess.'"
"I was giving absolutely no thought to any larger implication, none whatsoever," Simon said recently of his first tweets, which were sent out a little over two weeks ago while visiting his mother in the intensive care unit.
Speaking from his mother's Chicago apartment where family had gathered after her cremation, he said, "at some level, maybe I found that so much of what she was saying was so marvelously entertaining. I thought it would interest other people, and apparently it has."
July 28, 2:01 p.m.: "I think she wants me to pass along a couple of pieces of advice, ASAP. One: reach out to someone who seems lonely today." 2:02 p.m.: "And: listen to people in their 80's. They have looked across the street at death for a decade. They know what's vital." 2:06 p.m.: "Oh, and: Oh earth, you're too wonderful for anyone to realize you. It goes too quickly."
Simon's father died from a cerebral hemorrhage and "drinking himself to death" when Simon was 16. Throughout his career, Simon has reported from 10 war zones. As a 61-year-old baby boomer, Simon's seen family, friends and colleagues die. He's been to plenty of funerals.
But the loss of his mother, who had cancer and spent her last days at Chicago’s Northwestern Memorial Hospital, was unlike the others. For one, many of his fans already felt like they knew her -- the former showgirl and model joined him on a national radio broadcast only a few years ago for a story about life before his birth. And Simon, well-regarded as a versatile storyteller who, in addition to radio, has written and edited books on baseball legend Jackie Robinson, Chicago politics and the joys of adoption, said Newman's death also changed his perspective on his work.
"In journalism, when we want to get a story over the jumps, we refer to it as a universal experience, but it almost never is. There is one universal experience, that's death. That is something we are all going to experience at some distance in the lives of loved ones, strangers and friends, people around us and certainly our own," he said.
"I think it should be something we are comfortable talking about. Insofar as we can talk about it comfortably, we can reset the clocks in our own lives. If we can accept death and understand it and know, whether we are 10 or 30 or 60 or 80, that it's just over the horizon."
July 29, 7:27 p.m.: "Heart rate dropping. Heart dropping." 8:17 p.m.: "The heavens over Chicago have opened and Patricia Lyons Simon Newman has stepped onstage." July 30, 8:14 a.m.: "You wake up and realize: you weren't dreaming. It happened. Cry like you couldn't last night."
Simon has also caused controversy. Should the end of life, grief and the details of after-death arrangements be tweeted? Was he violating his mother's privacy? ("am not sure my mother understands Twitter or why I tell her millions of people love her--but she says she's ver [sic] touched," went one of his tweets). The reaction from his fans and those who work with the dying for a living, has been varied.
"We want to look at grief and loss from a distance. The bite-size things he says, we get a peek into his grief, and for a lot of people that's the most comfortable way to look at it," said David Kessler, who authored On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss with Elisabeth Kubler-Ross and runs Grief.com, an online resource for those who are mourning. "It's very primal, our need for grief to be witnessed, the same way our life must be witnessed."
"People have tried before to document death through video or live streams or clips, but it hasn't been successful because the thing is, death is very fast and dying is very slow. Many of his fans reacted so well because these are small, quick moments we've seen," said Kessler.
At the same time, some have questioned whether the intimate details of death should be shared so widely and immediately, or if they are better reserved for conversations with family and friends.
"I don't think one can be fully present in the moment and tweet at the same time. I am not judging him, because we all cope with dying in different ways," said Lizzy Miles, a hospice social worker in Ohio, who has helped popularize Death Cafes, informal coffee shop-style meetings to discuss issues related to death.
"Perhaps that was the closest he could be -- present physically, but not 100 percent emotionally there ... He did say his mom understood and perhaps their relationship is different ... I do love the media coverage of his experience because it gets people talking about death and dying."
Like Kessler, Carla Sofka, a social work professor at Siena College in Loudonville, N.Y., praised Simon. "The negative talk is people who are saying he is self-centered, egotistical and opportunistic. I don't agree. Some people under no circumstances would share what they feel like when they are dealing with death, dying, grief and loss. But there are other people who put it out there and find benefit to doing that," said Sofka, who coedited Dying, Death, and Grief in an Online Universe: For Counselors and Educators.
"Social media is giving people a socially acceptable place to talk about death, and somebody with a voice who is respected and heard is giving people permission to talk about something that's socially taboo."
For his part, Simon also has expressed the more mundane parts of losing a loved one, like the sheer amount of paperwork and money put into after-death care. And he's reflected on his own mortality.
July 31, 11:27 p.m.: "So much important flotsam in the wake of a life. USPS says fill out change-of-address for deceased. Wish I knew to where..." August 1, 9:13 a.m.: "Our 6yr old sits on lap w/ us. I say, 'This is what life is all about--the small things.' She says, 'I'm bored.' Reality." 11:14 a.m.: "Day of my mother's interment. Left hand quavered so much, daughter had to help w/ buttons. Glimpse of my future." August 5, 6:10 p.m.: "Between last minute flights, fees, lawyers, forms, cemeteries etc. how do families afford deaths?"
Simon thinks he'll be talking more about death on NPR, where he hosts "Weekend Edition Saturday," though he isn't sure what form that discussion will take.
"Our show does, on some level, reflect what interests me. I think of this as a spur to pay more attention to death than I did before. As I often tell people, it would be insensitive of me to not recognize and understand that something has been opened up here. That I may be in a position to reach out and make a difference. I tell people who are coming into the business, let yourself be changed by what happens to you."
"I really think we are put in this earth to give each other love and warmth and joy. And if a few more people now understand that that is our first priority in life, then I'm glad for that indeed. I don't want to shy away from it," he said.