i'm lisa fletcher and you are in "the stream," what we share about life but death and how we discuss dying is it changes one tweet at a time? ♪ bringing in the community throughout our program is our digital producer and sharing death and dying on social media is something we are seeing a lot more of and today when we put the topic out there we saw how it resonated with people. >> in a big way and as we mention it we are flooded with

tweets and personal stories, i will share a few of them but it seems we are tweeting about marriages and tweeting about birth and showing photos of our kids and death is the inevitable cycle of life and people are sharing with it and roger gets poetec says we go through our way through emotions and instant ways to find others going through emotions and on facebook allen has a heart-warming story of blogging during 8 years of his wife's cancer and declining as she passed and getting emotions and frustrations out and used to be a stress reliever for him and got this from better schuller is suffering from cancer and shares her journey on facebook and setback with family and friends ares are exhausted and hopes to go through the medium. >> if you had a terminal illness

would you open up online? >> i think i would because we share our lives with the community and i think death and getting to that stage i probably would want to share it and not feel alone and also talk to my community about the important stage in life. >> i wonder if people have jobs like ours or we see a lot of celebrities revealing these sorts of things or think about scott simon with npr when he organically started tweeting about the impending death of his mother, how millions of people latched on to it. >> global empathy, 75% of adults online say they use social media and seeing it as a way to update others on what is happening and freely discussing life, one topic is not as easily discussed and that is death and dying. according to the c.d.c. nearly 2.5 million americans die each year. majority due to chronic and terminal illnesses and a part of

reality that people want to talk about but surveys show they are waiting for someone to talk about. >> i think if 30% later have metastices why are not 30% of stories presented in breast cancer awareness month of the immediate y with women and men with disease, it should be an equal ratio and we see the happy stories and don't want to hear from people like me who unfortunately have the incurrable situation of taking chemotherapy for the rest of our lives and depending on that treatment. >> reporter: and she appeared on our program during breast cancer awareness month, for more than six years she has been using social media to share her cancer experience and now facing incurrable cancer she has recently started using the on line platform to share this chapter of her journey and she is not alone, more people are finding social media helpful

tool for opening up with their experience of death and dying and hash tags and pictures and blog and it's a way for dialog and allow people to deal with the issue of death at their own pace and they question the appropriateness, concerned about sharing gtl in a public forum and over simplifying the issue so does it have a conversation about death and dying and shaping this is david kessler a grief expert and author of you can heal your heart and finding peace after break up, divorce or death and we have justin creator of my last days focused on people who are terminally ill but refuse to give up on life and google plus hang out are debbie and david oliver and he discusses stage four cancer and jody joins us a cancer advocate with stage four breast cancer who created bcsm, breast cancer social media, welcome everyone to the stream and david kessler

we see people acknowledging the passing of others on social media, but why do you think we are seeing more discussion about the process and terminal illness and death more than ever on social media. >> thank you for talking about it on the show today, i really appreciate it. i don't think we knew what our great grant parents knew. we don't know how to talk about it anymore. we live in a world where the dead go around in white unmarked vans and we are looking for that town square. social media is the newtowns square. >> reporter: and i was going to say what is it about american culture that you said our grandparents had it different than we do, what is it about the culture that makes it so tough to talk about these things? we are youth oriented and yet there is something primal in us that grief must be witnessed and want life and death witnessed and grief witnessed.

>> reporter: speaking about witnessing you did a serious called my last days, why did you do that? >> you know, i was looking around and i realized that we tend to procrastinate with everything in life. especially my generation. and i didn't think we should procrastinate on living the life we want to live, it was rooted in a bahigh and said i made death a messenger of joy and we must grieve and i thought maybe i can inspire people to live the life they should be living but at the same time find a way to make death not so taboo and bring light to it and make it inspiring to people and that is kind of how the show was created. >> justin you say not making death a taboo and mark says the reason we tonight talk about that is absence of healthy grieving and process has less to do with social media and amy

says it helps the public with education and this is a trending article and thanks to the images captured during a photo shoot for the haves and have-knots this is actor john shneider from dukes of hazard and taken by jeremy coward and taken an hour after john discovered his father had died. and thank you john for sharing the images with us and speak of sharing we have a blog by our guest david and deborah and david has a cancer video blog and david and deborah i will go to this with you, you shared the journey with america and what have you learned about the empathy it has, engendered? >> i think it's amazing and our blog had 81,000 hits from 74 different countries and, you know, none of us get out alive and out of this alive and that is true all over the world and it's amazing how many people

respond and say, you know, you're teaching us things our physicians and nurses never told us about what happens during chemotherapy and radiation and side effects and love your youtube blogs. >> reporter: jody, you started bcsm and a huge online community of breast cancer survivors, breast cancer patients. how do you think social media is changing the way we discuss these issues? >> it's an absolutely remarkable and in the way that we can now connect with someone that is effected with the same disease, whether it be primary or metastatic and curable cancer as i have. and you may have looked before for months to find someone to have what you have and right now all you have to do is get on twitter and type in the bcsm hash tag and you can be talking with 10, 20, 30, 40 women just

right off the bat. so it's done a phenomenal job of connecting people. and that is what people with illness need. they need the affirmation and those connections that help them understand and relate to other people. >> reporter: david kessler, are there drawbacks to having these conversations online? >> we perceived there would be but there is not. people are much kinder than you expect online and we can be cruel online but not true around this topic. we are hungry for information. i can tell you lecturing over the world or across the world grief.com, all these things, it is like she said, it's about the connection, we yearn for it. >> a lifeline for ill people and ill patients are isolated and social media let's them leave the four walls and interact with others for support and share knowledge beyond the illness and

justin you create my last days and i'm curious about these people you talked to and the people you interviewed and families of those who passed away or suffering from terminal illness when it comes to final days what are the values really that people treasure and what is really important in life to those who are near the brink of death? >> it's really interesting, they all said the same thing, which is it's about family, it's about love, it's about experiences, and it's really just about connection. all the material wants and needs are just gone. and they are really becoming about the moment you are in now. and it's like you are almost like made clean and like you are detached from everything in the world and it's always the same which is really interesting. >> i couldn't agree more, justin. living in the moment right now, this is everything. i don't worry about yesterday and do not think about tomorrow

because if i live really well today then every yesterday is a dream of happiness and every tomorrow is a vision of hope. so i look forward to this day everyday. >> i love you! and there is something about that that when you look at the topic we think of looking at death and dying we will be sad and depressed and it's the opposite. we take in our lives. we feel more alive than ever when we really don't cutoff this part of our lives. >> there is something about it that is still obviously makes my misty and i don't know what it is. well i do know what it is, we are talking about death and dying and it's sad. so this is a question that miss minors probably did not get asked how do you talk about dying online, is there etquit and go on twitter, we will be right back.

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i was diagnosed stage four 18 months ago, i know my cancer is terminal but you can be optimistic with that. i have handled it with humor and made a joke about it the other day thinking he gets it, you know, part of life and it's okay to talk about. >> reporter: welcome back, what you were just looking at is a clip from the serious my last days created by our guest justin which shares the stories of people living with a terminal illness and discussing how social media is being used to talk about terminal illness and dying and what we put out on twitter is there an etiquette to what you can and cannot say online, what are folks saying? >> it's honorable you are trying not to cry. >> reporter: i'm not crying but before the break teary. >> reporter: i want america to know that and goes back to the point that david you were making about how this remains a taboo

in american society and stephanie said i'm not sure there is a real etiquette and death is a huge taboo topic and a conversation most people don't ever have and jennifer says it's appropriate to talk on social media but discretion is appreciated. however, death is a part of life and on facebook chris warns i wouldn't recommend this unless you have got thick skin. the internet can be a powder cake over the most innocuous remarks and tony says i no etiquette and needs to be a positive outlet and as we have seen in the first segment it is positive for so many. >> reporter: your blog about your experience and have a huge online community that openly discusses this issue and you talk about a lot of things, how do you decide what to share and what to hold back? >> well, i think in this issue as it's not an etiquette per se as i have a story. and i'm a writer. so the way that i process what

i'm going through is that i write about it. now, one issue i'm having right now is that i usually process things a few years after the fact. and i'm going to have to speed that up under the circumstances right now. so i'm kind of in an adjustment period per se but i choose by listening to people, what are you interested in hearing about, i'm talking with other women with breast cancer all the time. and i learn about their concerns, i have my own. we throw out topics and talk about them. you just have to talk about every aspect of it with someone else who is going through the same process. >> reporter: david and debbie i see you nodding your heads. >> yeah, you know, part of the way we have chosen what videos to do is based on questions or responses that people give to us or comments that they will make on the video blog or youtube

channel and it's kind of driven us to think more carefully about what topics to choose and how to do that. >> reporter: community has been tweeting in and lisa personal stories and cancer is a severe experience i have under gone and left its scar and talking to others has eased my emotional suffers and got this from irish eyes and said i read that those dying was living their lives as others wanted instead of how they wished and flint is doubting it, joking about stuff and morbid like death is good because laughing is good medicine. and you know david we just heard david and deborah, you know, it's remarkable with the boyant spirit and laughing about this. >> full of life. >> lisa is crying and figure out how they can laugh about cancer. >> reporter: look at the guy with terminal four cancer and his wife, they are laughing and living in the moment. why am i having a strange

contrast? >> exactly. >> laughing about this, you know, embracing the dark humor if you will of death, that allows people to move on. >> it connects us with our life and faces our fear, you know, death is obviously one of our greatest fears and when you think about twitter we think 144 characters, you cannot express yourself. last years of life really our whole life there is not a lot to say and they used to say four things say i love you, i'm sorry, please -- i forgive you and thank you. that's really it. you can do it in 140 characters. you can communicate who you are and what you're going through and think about it we share all of our experiences of our lives on facebook, this chapter we are supposed to stop sharing because you might get upset. i don't think so. >> reporter: justin one amazing thing with the video is people have expectation that it's going to be sad and turns out to be inspiring and empowering.

was that a pleasant surprise for you when you embarked on the journey or did you suspect that? >> that was the mission of the journey to make it positive and inspiring and see if we could make the topic of death something that actually encouraged people to live better. and to smile more and to laugh more because the thing is we all have one thing in common and that is we are all going to die. so why are we waiting to be happy? like they are? why are we waiting to, you know, do all the things we really want to do. we should do them now and calling our mom and sisters and brothers and mending relationships and should be meeting people the street and you know leaving our legacy behind every single day. and that is why it has become so popular and why it's joyful because we are not focusing on the dying part but the living part which is the point of dying that reminds us we have to live. >> reporter: david, go ahead. >> three responses to a terminal diagnosis and we have people who

get depressed and disengaged from others and another group i they that fight it to few till till that is sad and a group like the show tonight who are in to living and not dying and you know it is what it is. and that is what we are doing but we need to get those people who are depressed to get on to social media as well. >> well, david and deborah i am making the point that social media provides a source of support and people who feel families are burning could find an out let here and a comment from lizzy. >> a pop up event where people get together to talk about death and eat delicious cake and the cafe movement dispels the myth that people don't want to talk about death and i brought the concept to the united states in july of 2012 and since then death cafes have popped up in

over 34 states and over 100 cities. death cafe is no agenda, no ideology, just open and honest conversations about death and dying. >> and david i want to go over this because you wanted to chime in, critique of social media is it has superficial friends and connections and nothing like face-to-face conversations when it comes to building empathy and community, what is the response to that critique? >> i think that is changing and we are finding we can connect very well. and if you think about it, when a person is dying and they reach out to try to connect and you say don't talk that way, you will focus on getting better, we leave them alone. we isolate them. and if i can reach out and find another soul the better. and you know our fear is if i really look at the facts some day i'm going to day, some day you are going to die and some day we all will day we think it will depress us but when i let it in it makes me get deeper in

the moment and connect with you and serve people better and let me take this life in. >> reporter: do you find there are barriers that come down when you are having these conversations online and people feel more at ease when asking questions that you may not exactly know how to phrase face-to-face? >> people are forthcoming and just encouraged to talk about things that they thought about with having their illness. one thing that i can't, you know, social media is not going anywhere. you know, we are only just in the beginning stage of this kind of technology in our lives. and i think the more humanely we weave it into what we experience in a natural way, in a way that doesn't feel forced n a way that is an extension of our personality, then worries about taboo and about death and

etiquette and questions like that will cease to be relevant. >> reporter: you know, i think unless you have experienced a virtual hug in the midst of a crisis, you probably don't understand it. but i have been fortunate enough to experience that, the very day we received bad news and as i shared that with my friends and they all the weeks and weeks virtual hugs everyday and that's wonderful. >> yeah. >> it is wonderful. and there is nothing superficial about the connections that people make in what i call a disease community or an illness community. in fact, you will find that when we meet each other in person, the getting to know you process is actually accelerated. i have very rarely connected with someone online that i met them in person and then been disappointed. every single time it has been like wow, it's you, i'm so glad

to meet you. >> reporter: you already know each other. >> yeah. >> reporter: so what happens when the blogging and the tweeting stop and you learn that the person with whom you have been walking through this journey has died? how does it impact the grieving process? we will tackle the online legacy next.

>> evey sunday night, join us for exclusive,

♪ when i die that represents the end of my journey but then that represents the starting point of another journey for everyone else. what a wonderful purpose to have. >> chris' message, his legacy is one i think that has touched so

many people around the world. >> reporter: we are talking about social media and the place in the discussion of death and dying. david kessler and talking to my interview producer earlier today and booked our guests for the show and said it was such an emotional experience because she would find a great blog post or tweets online and go to call the person and would only discover they had passed away a few days or weeks ago and used some interesting words and said it was haunting and fascinating at the same time because their words were eternal and pictures and videos were in front of her and thought this must be universal experience that people have. what is the effect of this lasting online legacy for families and loved ones once these people pass? >> many people would think it would be negative but i'm amazed at people i talked to who shared they love there is a legacy to their loved one, they love when someone else says i ran across them online and read about them. they love sort of going back through their last days.

it helps them feel like their loved one lived and is remembered. and honored. >> and our community has been tweeting in. we have the full spectrum and alice says social media is good and aid those grieving by giving support to those who cannot otherwise obtain it and make you fell less alone and less alternaienate alienated. having a representation of someone that exists after they are gone draws out the pain and restarts the grieving process. i want to go to you with this, and david may you have a long life, my friend, and you know right now you are battling honorably terminal cancer and debbie same question to you, how will you be using social media? right now and in the future, to really connect with this community that you have developed and really honor the man who is to your left? >> you know, i think it's important that we continue to document this journey.

i have been in hospice care for years and i was a director and now i do research in that area. and the lack of knowledge that people have about how beautiful this experience can be, people will think we are crazy but this has been one of the best years of our lives and traveled and free of many kinds of responsibilities you can get bogged down in. so my goal is to continue to document this and i know it's going to get harder especially as david gets more frail and less able to contribute, more of the burden and it falls upon me and how i do that during the be reevement is going to be more challenging, being alone and feeling it myself. but our family is committed to this. our kids have joined in this process as well. and it's brought mission and meaning and indeed it will be honoring david with what we do and it's a legacy that we leave for our grandchildren. >> and a beautiful legacy and beautiful note to end the show on and that is all the time we

have for this discussion and thanks to david and debbie and david oliver and until next time we will see you online. nush flush i'm john in new york and kiev burning and protests in ukraine is deadly as leaders try to restrict demonstrations and protesters give the president a ultimatum. tempers flair and syria peace talks and u.s. says there is no place for assad in syria. and another chemical found in the water after that spill in west virginia why some are still worried about health and safety