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 Jeff
Makes my struggles with unemployment, bills and job hunting pale in comparison. I hope I have her kind of courage when it's my time, hopefully a long time from now.
Makes you thankful for what you DO have.
God be with her and her family.
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Friday 30 April
By Julie Olvares
This really broke my heart!!
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Friday 30 April
By Zander
I'm sure that some nefarious vaccine caused her illness in the first place. What a horrible shame. Such a lovely person.
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Friday 30 April
By R.M.
Cystic fibrosis is a genetic disease that is inherited by children whose parents are both carriers of the CF gene--it is present at birth, it is not possible to "contract" the disease from a vaccine. I suggest you research the disease and read Eva's blog to learn more about cystic fibrosis.
Friday 30 April
By Billy Broussard
I am a respiratory therapist so I have seen and continue to see the sad plight of so many cystic fibrosis patients. They all have had such a tormented life augmented by daily struggles and short term victories. It is all so sad to know that for as long as this disease has plagued so many of our youth there is still no cure. Certainly some CF patients have lived longer than others but their future is still quite bleak to them...never knowing when their last battle will be fought...to be won or lost. My prayers go out to Eva's family and all her friends...hoping to boost their souls...knowing that Eva is finally free of suffering and pain.
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Friday 30 April
By Linda
I cannot stop crying. I have watched her videos over and over..what a gorgeous soul and heart this young lady had. My god. She was beautiful. I imagine her friends and family are absolutely destroyed by her death, but please know that Eva brought awareness about CF to everyone who has seen her film, bloggs, etc. so she did not leave this world having done nothing in her life. What a brave young woman Eva was and I would have been oh so proud to have had Eva as my own daughter. She died two days before my daughter turned 25 so this really hit home for me. How very sad I am to know such a beautiful young woman lost her battle and passed away yet I am comforted to know she was surrounded by so many friends and family members who truly loved her. She did not leave this world without leaving HER mark. She did good. RIP Eva. RIP.
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Friday 30 April
By oklahoma
My heart goes out to all of you suffering with this disease. My daughter died of CF in 1978 when she was 7 years old. So much progress has been made in the past 32 years, so don't ever give up hope. In recent years, researchers have identified the gene causing CF. Now they can detect CF before the baby is even born. Because of this, parents can now be tested to determine if they are carriers. In the 1970's lung and liver transplants were only just beginning for CF patients. In those days, we were told that CF wasn't even a "known disease" before 1942. if a child that died of CF before 1942 and before the age of 3, it was determined that they died of pneumonia or tuberculosis. Miracles do happen! I
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Friday 30 April
By ajc1884
Only the good die young. R.I.P.
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Saturday 01 May
By William Greene
I normally log on and instantly search the web site im looking for but for some reason the oxygen mask red hair and beautiful face caught my attention see my two sons and there mother has chronic asthma so i thought that was this young ladys case but it seem i was wrong i watched your bloggs and my heart thoughts and prayers goes out to you & your family.To the family i know its hard and sometimes feel unbarable there is one young angel who's in heaven and in every ones heart. and to eva a msg to you wishes do come true im sure you made a lot,you had something special and shared it with the world a heart bigger than most and the love this world needs.ps i hate u missed your spot on idol couldnt have picked a better song but im sure we all agree you are americas idol. feel your heart with sunshine and your life with love make each moment an occasion to live happily.
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Friday 30 April
By michael
When someone like this beautiful lady leaves this earth...it's like a rose that must lose a petal.... RIP.
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Friday 30 April
By R. M.
Her blog changed my life, I never realized how much people suffered with this disease and what that suffering really meant in the life of someone who was doomed to die from it so young. I've never felt so grateful for every breath.
RIP, Eva
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Friday 30 April
By Breeezy
I feel my life will soon be over as well....because I suffer from
asthma and other crap!!!!
Her video made me almost cry!!!
Very very sad!!!!
God Bless her and her family!
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Friday 30 April
By Ray
"Love is something if your give it away... You end up having more" R. I. P. sleeping beauty and may the days of your life be remember always.
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Friday 30 April
By Marty Smith
WOW...Just wow! Brave isnt even the word for it, its some kinda superhuman strength you would never think she had if you passed her on the street. I would be in a permanent state of shock and Im sure documenting the whole experience for the benefit of others would never cross my mind. She used her last moments to give back to the world the only thing she had left. Its heartbreaking.
Marty Smith
Austin, TX
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Friday 30 April
By Theresa
What a wonderful girl...God Bless her and he family...i can't look at it without crying....people care for her family now as their grief of the loss of this amazing girl will be with them forever.
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Friday 30 April
By eddi
I/LOVE/YOU/GUYS
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Friday 30 April
By rlau290541
When you think life's treating your badly, you don't have to look very far to see someone with real tradgedy. I can't imagine the parent's grief over losing a beautiful daughter like Eva. God bless her and her family.
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Friday 30 April
By jeff
what a beauty, inside and out!
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Friday 30 April
By andrew carchia
We complain about our little problems until we see this beautiful, beautiful person. God bless her and her family.
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Friday 30 April
By p
What a bright , lovely young woman
RIP sweet girl.
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