Emily Rapp talks to Terry Gross about how her Christian upbringing informed her response upon learning that her son Ronan had Tay-Sachs disease:

I was definitely not identifying as a Christian long before Ronan was born. I think having that kind of a diagnosis, which really feels straight out of the biblical Job— I mean, it really does — it’s like you feel cursed and what Job does in TheBible is wander around asking everyone, ‘Why this is happening?’ because he doesn’t understand and I think that’s a little bit how I felt. People come around Job and they sit with him for a while and then they try to explain it and that’s when it all kind of goes horribly wrong, because what they should just do is sit and witness and say, ‘We don’t know. We don’t understand. It doesn’t make any sense. This is chaotic and crazy and I can’t believe it’s happened.’ So I think I didn’t want to pray, but I definitely felt that impulse that many religious people feel: that I should, you know. I had that whole I-want-to-broker-a-deal. I went to shamans in Santa Fe. I tried to find anyone who could give me some kind of answer, not to save [Ronan] but just tell me why this was happening or if he would be okay or what would happen to him when he died, which is something I was thinking about constantly and still do.

Image by emotionalcynic/Flickr 

Emily Rapp tells Terry Gross about looking at people’s death photographs at the Upaya Zen Center where she spent a weekend during her son Ronan’s decline. Ronan had Tay-Sachs disease.

Some of them showed signs of struggle. There were babies; there were older people; there were spouses; there were pictures of the whole family in the bed with the person who had just died, covered in flowers. And that was so difficult to see because just the idea of Ronan not being alive was so hard, to even conceptualize it was just so horrible that I didn’t want to imagine it, but going to that weekend was so helpful to me because it made me imagine it which made the grief worse for a while and then it kind of lifted. One of the things about having a terminally ill child is that you start to understand and really absorb your own mortality and the mortality of every single person that you love and that is really terrifying, but it’s the truth.

Blurring The Line Between Life And Death

Yesterday’s show looked at ethical issues involved in organ donation:

Dick Teresi, is the author of a new book about how medicine is blurring the line between life and death. For example, if you have opted to be an organ donor, if you are declared brain-dead after that declaration, you may be placed back on a ventilator to keep your lungs working and heart beating until after the organ removal process.

Last week in a Wall Street Journal article adapted from his book, Teresi said that when we choose to be organ donors, we are not really giving our informed consent, and he laid out some facts about organ donation that you may not know.

But doctors and others who work with organ donation programs say that Teresi is unnecessarily frightening people and could discourage people from becoming organ donors. We’re going to hear from Teresi and then from transplant surgeon Dr. Richard Freeman, chair of the Department of Surgery at Dartmouth Medical School.

You know, it really got me when people would come by and would tell me stories about narrowly missing being killed in an accident. And they’d say, ‘But my guardian angel protected me.’ And I just wanted to slam the door in their face and walk out. Because I thought, ‘Where was Denny’s guardian angel the night of Feb. 6?’

— Dennis Apple and his wife, Buelah, came to StoryCorps to talk about their son Denny. Nearly 21 years ago, Denny came down with mononucleosis. Before going to bed one night, he took some medicine, and talked about where he wanted to sleep. He never woke up.

I believe everyone should have a good death. You know, with your grandchildren around you, a bit of sobbing. Because after all, tears are appropriate on a death bed. And you say goodbye to your loved ones, making certain that one of them has been left behind to look after the shop.

— Terry Pratchett, on Morning Edition.

It’s worth considering that anything that’s on the Internet and connected to your digital image does have potential to outlast you. For instance, services like Twitter [are] now being archived by the Library of Congress — presumably that information is going to have a long shelf life. It’s worth considering what you put out there and what is put out there about you and making sure that is in line with the image you want to portray.

— Evan Carroll, discussing the best ways to maintain your online legacy after you die, in a conversation on Fresh Air on January 10, 2011.

What do you want to happen to your online presence when you die?

On tomorrow’s show, we’re going to talk about what happens to your online self (Facebook, Tumblr, Twitter, websites) when you die. What do you want to happen to your profiles when you die?

heartssunshine:

Also tomorrow: What happens to your online presence when you die. We’ll talk to John Romano and Evan Carroll from The Digital Beyond.