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 lolabull
What a beautiful girl. Poor thing. RIP sweetheart.
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Friday 30 April
By ablalo
Seemed like such a lovely girl - so sorry about what happened to her. Hopefully, a cure for CF will be discovered in the near future.........
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Friday 30 April
By Dennis Calogera
This makes us realize how lucky we are and makes our problems seem so small and unimportant. I will be sure to ask my teen daughters to watch her video. God Bless her.
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Friday 30 April
By Steve
Am I missing something here? I must be. Your last message to the world and she decided to sing it. Why? Wouldn't it be more meaningful if she talked, telling what she has been through and what she hopes for the world after she is gone. **In any case she is better off than we are today. She seemed like a nice girl whose life was cut short. Very sad. To Christians and believers: Can you imagine what it would feel like to stand (kneel) in the presence of God? What that love must feel like will be amazing.
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Friday 30 April
By Tenebrae
Sad to see someone so beautiful die when so many worthless sacks of flesh live completely free of illness.
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Tuesday 04 May
By David
Eva's Family,
I truly am sorry for you loss. I could not bring myself to watch Eva's video. My son is 25 yrs old with cystic fibrosis. He is a Delta 508 so you can know that telling the truth. He has endured many of the life trials the these young people and still does. He knows more than most how precious life is and tries not to waste even a single moment.
I understand than fulfilling Eva's wishes. I stared into my son's eyes in the pediatric intensive care unit after some invasive lung surgery and listened to him ask me if he was gonna die. A grave situation to be sure and the nurses seriously reacting to the dier nature of the mediate circumstance and offered no comfort because I think that they thought it was true.
I grabbed my son and spoke firmly to him;"this isn't about dieing its about living. Help us son. Be strong and fight with us."
A father pleading for his 8 yr old son to help him. Our only child our only son I would do anything thing for him even today.
Thats haunting enough for me. Its about living. Its about living.
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Friday 30 April
By ashley
She is just beautiful, wise, caring, and I am so sorry for your lost. The world has last a great person, who taught many of us a lot. Prayers are w/you. Amen
With Love
Ashley
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Saturday 01 May
By mark , joni simpson
hello i would like to say how beautiful you are . I just wish people could be , think like you . what amazing person . I will always remember you , have you in my mind , hart . there is one thing after watching this video is that people need to live learn , love., not just one day but every day...I hope your in a better place rest in pace you will be so missed .
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Friday 30 April
By Dana
Eva. You are now a beautiful angel. Your story has touched many and will continue to do so. I loved the singing and now you can sing pain free in Heaven. Rest in peace and God bless you, sweet angel. Your writings are brave, beautiful, inspiring, moving and real.
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Friday 30 April
By rose
If this is an inherited disease then why in God's name would anyone who is a carrier of this gene decide to have children? I cannot understand this type of thinking. It affects the child from day one and it goes on and on with each generation having babies & making more cystic fibrosis sufferers. Doesn't make sense to me.
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Friday 30 April
By CindyKay
i know what you mean, it seems like a couple shouldn't be allowed to have children if one or the other is a carrier of CV. I think a couple should have to have a blood test for CV before they are given a marriage license. From what I understand, if one of the parents are a carrier, there is 25% chance the child will be born with CF.
Cindy
Friday 30 April
By bkim23
Eva is physically gone, but she will be forever remembered by her family, friends and those who were deeply touched by her and her story! (like myself and many others) Her spirit will live on in the hearts of many people. I thank her for sharing her most private and last chapter of her life. I wish her family the best and the most important lessons Eva taught us are to love one another and not take life or anything for granted! Rip Eva. You'll truly be missed! =(
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Friday 30 April
By Colin
Most people don't realize how easy they have it in life, but people who are constantly sick sure notice how easy others who don't have health problems have it,
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Friday 30 April
By Jessica
These videos of her are very touching but sad.May she rest in peace.
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Friday 30 April
By soberlyf
First, I've gotta say I did not watch the video. I think it's marvelous that she chronicled her life, her thoughts, fears, hopes etc and I'm sure it made things much less forboding not to keep it bottled up. However, as with Farrah, I find certain details just a bit too personal, and left me feeling there's something a bit maudelin watching the excruciating pain, throwing up etc, it's like those pathetic people who slow down on the freeway to see the carnage of a bad traffic accident. No genuine concern or healthy curiousity there, just lecherous vultures, the same folks who wouldn't stop for a stranded motorist due to bystander apathy, but they'll stop traffic to search for blood, almost criminal in my moral code. She was brave and beautiful, and her story moves me without seeing the pain in a play-by-play, our own lives are frought with enough agony and sorrow without spending our time watching a long, slow death, clip by heartbreaking clip. It's the way she lived that left an impression on me, not the way she died, but again, I'm certain it was great that she did it to help her feel connected and not so cut off and alone. God bless you little girl, you will be remembered by tens of thousands, most of us, not by dozens, so your life was one with great meaning, we should all live it half as well in 3 times the years.
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Friday 30 April
By Deb
What an incredibly brave girl. Paradise has welcomed their brave one home.
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Friday 30 April
By Val
God bless this girl and her family. My deepest condolences. Wouldn't it have been wonderful if all the money we have give over the years would have cured this beautiful woman and others also suffering from this disease. Perhaps some form of organ cloning could be looked into as well.
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Friday 30 April
By Winette
My niece, Robin, passed away in November 2009, at the age of 30, from cystic fibrosis. It's an insidious disease. She left her husband of 7 years and her 5 year old son, who miss her terribly. We all miss her so very much. Please get yourselves checked for the gene before you marry or have children.
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Thursday 21 July
By LORI
No one needs to die from cystic fibrosis----our country is run by pharmacy companies..... the ancient exercise of qi gong / chi kung can cure cystic fibrosis except in THIS country you won't be told about that.
Friday 30 April
By Kaos
Wow, beautiful girl, beautiful family. I think she's very generous for sharing. "just love everyone" perfect.....God bless her and her family. xo
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