Sharing -- and oversharing -- is par for the course for our "digital generation." Your love life, weekend shenanigans and, yes, even what you ate for lunch, are fair game when you're sharing your life online. But what about your impending death?Last month, blogger Eva Markvoort turned on her video camera and told her blog readers: "My life is ending."
The 25-year-old had been chronicling her life with a terminal illness, cystic fibrosis, for nearly four years on her live journal, 65 Red Roses. Isolated in her hospital room, she started blogging in 2006.
Her writing painted a very real, harrowing picture of life with the disease, chronicling painful symptoms and procedures, the hopeful ups ... and devastating downs. When she passed away last month, her family live-streamed her memorial service on her blog, per her wishes.
Markvoort isn't the only blogger to have shared her last days on a public forum. During the final five months of her life, 39-year-old Michelle Mayer, battling scleroderma, a rare autoimmune illness, blogged about being a mother and dealing with the topic of death on Portrait of a Dying Mom. 18-year-old Miles Levin, along with his mom and dad, kept a blog while in treatment for a rare type of terminal cancer, from 2006 until he passed away in 2007. In 2002, NPR aired "My So-Called Lungs," the audio diary of 21-year-old Laura Rothenberg, another young author with CF who died the following year.
Of course, this generation isn't the first to write about death.
The topic has certainly been explored before, in novels and biographies -- including a new genre by the boomer generation
that might be called the Memorial Memoir. In "The Last Lecture," former Carnegie Mellon professor Randy Pausch, who passed away in 2008, chronicles his diagnosis of terminal cancer, as well as the life teachings he'd most like to pass on. In "The Council of Dads," Bruce Feiler writes about assembling a group of close male friends and asking them to raise his daughters, should his cancer prove incurable.
In other words, to fear death is a natural human phenomenon, but never before have we been able to confront and discuss it in such a large-scale conversation happening in real time, not after the fact. And it's Gen Y, content to air our dirty laundry -- and fears about our life expectancy -- that's leading it. When Markvoort's mother expressed discomfort with her daughter's blog, she recalls her saying, "We connect differently than your generation."
This No Thought Left Unpublished method of connecting is sometimes mocked, as we narrate every breakup and breakdown -- and almost anyone who blogs about her life on a regular basis has learned to adopt a healthy sense of humor about it.
But for every Julia Allison "lifecasting" gratuitously about shoes, there are friends being made and communities being formed, where this kind of personal blogging is about something bigger: a "we're all in this together" mentality. For those who know they're going to die, who have to wait for it alone in a hospital bed between visiting hours, the ability to connect to the outside world, beyond the hospital walls, as well as their inside world -- the network of fellow patients battling similar terminal illnesses -- feels both natural and necessary.
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Friday 30 April
By JCoop
That was haunting...and she is right.
Reply
Friday 30 April
By Bob
As a Father and Grandfather and having lost a chilt at the early age of 7, I can see now what others may never see in their life time.
I had my son to die in my arms and I see him every day of my life, he died peacefully and i can appreciate that since he suffered for 3 years with leukemia having the therapy and spinal taps every 6 weeks of his life. What I am getting at is, this girl had to go thru a living hell and I would have loved to have known her. I would have loved to have been holding this kid in my arms and telling her that her shared love will neverbe forgotten and to have been holding her when she took her last breath while telling her that she is also loved.
Friday 30 April
By Tina
Words to live by....too bad everyone doesn't give their love away everyday!
Brought tears to my eyes.
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Friday 08 October
By Dee
mine too
Friday 30 April
By Bridgette
I'm not sure if I would want my death chronicled for the entire world to see.. Possibly my family, however... I think that would be a good way to remember somebody close to us... Kind of like what Farrah Fawcett did in her video, shot by dear friend Allana Stewart.. Farrah wanted everything video-taped - not just the light-hearted medical stuff, but the hard-core medical procedures as well.. She even motioned for Allana to not stop taping while she was violently getting sick, as a result of chemo! That's kind of extreme, but I guess whatever someone wants, they should get..
This pretty girl shown, only 25 years old is a tragedy! What a lovely person she is/was to sing a song w/ such meaning about life.. I noticed I had to turn my volume up a lot as she didn't even have a voice left... God bless and RIP!
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Friday 30 April
By Ray
If you would want to do something like Farrah.......Farrah pretty much did what this young lady did.. it wasn't just for her family, it was for everyone to see.
Friday 30 April
By jose
much courage for eva markvoort who past away. many people like her feel comfortable sharing thier lives&deaths on blogs,online,stream its thier only way of showing strengh,faith,understanding,love,expression.may u r.i.p. u are a shining star
Friday 30 April
By cindi
This is very sad, a young life cut short, you'd think with all the money people donate to reserch they would find cure's for these illness, sad that America cannot do this, keep america strong keep our money here to find cures..
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Tuesday 12 October
By Happi Shopr
we are not finding cures because there is no money in it for those peddling pills, treatments and such. when we put people before our bottom line, we will see cures at an astounding rate.
Friday 30 April
By Bill
RIP God bless you
Reply
Friday 30 April
By Stacie
I just watched some of her videos. i couldn't stop crying... so sad, sooo sooo sad. what a beautiful girl. God Bless her and her Family!!!!
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Friday 30 April
By farie
can u tell me where u saw the other videos please?
Saturday 01 May
By angelo
did anyone say how and or where they saw her other videos?
please, angelo
Friday 30 April
By Coletta
This is so sad, she was taken to young.
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Friday 30 April
By Martha Winhaber
What a beautifull,smart woman.What she did by chronicaling her death is BRAVE!!People need to learn to be loving and kind because life is to short.You inspired me darling and I will not forget how brave and special this young lady is and I hope people learn from this video.If you cant stand watching her get sick dont watch or get involved and help,she shed light on the REALITY.RIP,lovley lady
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Friday 30 April
By debbe
All I can say is, this young beautiful woman just touched me and will always be a part of my life now in a positive way, her beautiful face, beautiful song and message, and her strength through all THAT and still able to look happy and beautiful, well I am inspired. Even though a stranger, I will never forget this beautiful song and hope she is so much more happier and free now where she is.
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Friday 30 April
By Carol
RIP you special angel. CF is also in my life. I have it and my youngest two children have it. I wasn't diagnosed until 31 years old. My son is currently 15 and has a pretty severe form with heavy lung involvement whereas me and my daughter, she is almost 10 have a less severe case, primarily sinus.
What a brave young woman to write her life down as she did, and I thank her and everyone involved for putting this story out here.
Carol McCullagh
Milford, Maine
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Saturday 01 May
By sonya sell
Carol. I to have dealt wth the blow that CF has to hand out . My fifteen year old brother had it and passed away in 1991. I was so sorry to hear that you were diagnosed so late in life and that your two children have it. I was told that I was a carrier of the jean. Thank God! My son is perfectly healthy and happy. Again I would like to say that you have to keep living and let your children do what they want with there life because sometimes children with this disease are so easily cut short and I hope that your children live long enough for a cure and you too. May God Bless You and leep you around long enough to enjoy a CURE!
Friday 30 April
By Joanne
Yes, indeed sad, all the diseases we're still trying to find cures for and so much suffering. I'm glad she was able to do what she did, sharing her experience, as I'm sure it gave her peace. I just found a song to put on the top of my list to sing to my grandson due to be born in July! My heart goes out to all the people, especially the young, who are battling seemingly insurmountable odds. I am dealing with this sort of thing on a different level. My 18-year old nephew sustained a severe spinal cord injury last summer on a beach in Delaware. He had just graduated high school and just about to go away to college. Blessings and prayers to the sick and injured and to the families whose lives will never be the same. Hard to keep the faith that "everything happens for a reason", but we try.
Friday 30 April
By John
Carol God Bless you, My wife and I had two children with CF, Johnny passed in 1995 he was 15, Kelly passed in 2006 she was 26, Kelly had gone through a double lung transplant and was doing great for 18 months then she caught a virus that Knocked her down. There is a special place in my heart with any parent or child with CF, you are all so special, I have another friend in California and her daughter is 24 with CF, we have known them for 15 years, Ashley is another angel. I pray everyday for the CF families. May God bless you and your kids.