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“ok i’m dead. so what? i partook of much wonder and beauty. you should be so lucky!”
In the past decade or so, a unique genre of blogging emerged in which people suffering from terminal illnesses wrote about their experiences from start to finish. These blogs have engaged millions of readers, sometimes at speeds dizzying to both the writer and reader.
Some of the dying bloggers are gifted professional writers who transition into the new subject of their own death. Several dying bloggers are children who have barely if ever written about anything but their own illness. A number of them are parents leaving their family something to know them by.
Following these blogs during the lives of the writers has proven to be a powerful experience for readers, made evident by the comments they’ve written, the letters they’ve sent and the continued visits to the blogs years after the death of the writers.
—
Brian Hill went to the doctor on Christmas eve, Wednesday, December 24, 2003 for an MRI.
The MRI showed a dark mass in his brain. When he came home that night, he created a blog, wrote a post about his appointment and emailed his friends asking them to read it.
So the MRI today shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. The thing is on the cortex (the outer layer), and it is in the motor region, which controls the movement of the limbs. Since it is on the right hemisphere, my left arm and leg are the ones that are acting funny. Lazy. Tingly. I have noticed myself stuttering, using the wrong word sometimes (broccoli instead of ravioli), slurring words, and ‘mix-mashing’ syllables … or just not remembering the word I need. I counted this up to getting older and having two small children. The doctor says that the thing on my brain is close to the speech center, and that I have some other little thingies on the other hemisphere that are right in the middle of the speech center. So now I have an excuse for everything. I have an excuse for why I go to the store, find and verify the correct item that my wife sent me for, and still come back with the wrong thing. I have an excuse. My wife may wish she could get such an excuse.
Maybe this would be a lot of worry followed by a lot of relief, Brian wrote, maybe. In any event, he was lucky to be alive and able to complain at all, he added earnestly, and you readers are lucky too.
Brian’s blog was visible to the public but his name was noticeably absent from it. He asked those who knew that he was behind the blog to keep his identity confidential as he began this new chapter in his life.
The morning after his first post, Brian woke up to remember that he hadn’t included the URL of the blog in the email to his friends. Then he promptly cooked a spoon in the microwave. What was simply stress? What was that big mass in his brain responsible for?
On Friday, the day after Christmas and two days after the first MRI, Brian had an appointment for a second MRI. After a struggle, he overcame his claustrophobia and slid into the machine again.
I was trying to decide whether to lie to them and tell them I saw a piece of obscene graphitti inside their precious machine. Then I had to stop myself from laughing, because you are not supposed to move or jiggle while you are in there.The MRI makes a lot of loud mechanical pulsing and buzzing noises. It sounded like house techno music.
Over the next few days, Brian wondered about the mass. A week after the initial diagnosis, it was too soon for him to be sure that anything was getting better or worse. He was sure only that he was more conscious than ever more of the many scatterbrained mistakes he was making. He walked into a door and bled, incredulous all the while. He made constant typos on his blog that he would have to laboriously correct before publishing. Was it his new “Mysterious Condition”?
What was imagined deterioration and what was real? What was happening?
—
Brian had more than just himself to worry about. He was a husband and a father to two small children.
I would like to thank my lovely and rather strong wife for not only putting up with lazy distracted dad but also for going through the same stress I am going through and actually functioning.
More procedures followed the MRIs. Doctors sampled Brian’s urine and blood. A spinal tap preceded an EEG, a recording of electrical activity on the scalp. Certain ailments such as Mad Cow Disease were ruled out but no firm diagnosis was made. Multiple sclerosis was a possibility, said his doctor. Brian responded with hope:
MS is, from what little I know, a royal pain, but it does leave your personality and mind intact. And it comes with a normal lifespan.
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Brian posted an image from his MRI. The picture is blurry because his hands were shaking when took it. The next day, he posted photos of his spinal tap. The photos made his “stomach churn.”
It’s kind of viscerally unacceptable when that needle slides into your spine. And like all the other procedures you are supposed to remain calm and hold still. In my case a dull but deep ache shot through my pelvis and down my right leg. The doctor said I was bound to feel something but it is unlikely any nerves were damaged. “It’s like sticking a fork into a pile of spaghetti,” he said, “You’re unlikely to sever any of the noodles.”
Great.
Brian was funny and a good writer too. He was anonymous to the public but wasn’t trying to hide who he was. Writing so articulately was something might expect of a professional journalist and editor as he was and tried to remain. In light of his honesty and talent at the keyboard, the blog began attracting a dedicated following.
Anyway, so the fun part of the story is that after they stuck me, and the fluid started coming out, I could feel the drops on my back, running down my crack and into my underwear. I guess when it comes to medical procedures, the unexpected upsets me, and this is the last thing in the world I expected. To my mind, spinal fluid is more precious than blood, more precious even than breast milk. And here it was, running into my underwear! But I remained calm: “Doc!” I said, in a restrained but urgent voice, “it’s dripping down my ass!” He grabbed a collection tube and said it was OK, that he would still be able to get his sample. I thought: I know you’ll get your sample, I just don’t think Calvin Klein should be getting a sample.
The results were due two weeks following the spinal tap. Within one week, the doctor called and said that MS was not the diagnosis but the spinal fluid was still being tested. More tests were coming. The doctor was mystified.
Brian was diagnosed with ALS on January 13, 2004.
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Alice Pyne, a 16-year-old English girl, has battled cancer throughout her life. In June of 2011, the disease spread throughout her body and it was clear to her doctors and family that she was fighting a losing battle. At the urging of her mother, Alice began a blog outlining her “bucket list”, all the things she wanted to do before she died.
Although the blog was meant initially for a few friends, it became popular almost instantly, reaching morning television shows in Britain within days of launching.
Readers from around the world wanted to donate money to help Alice accomplish every item on her list. Alice and her mother took several readers up on their offers of “wonderful experiences” and asked the majority of readers to help by donating bone marrow or least money. A charity race run by Alice’s sister received £30,000 in donations within a day of posting.
Problems arose quickly. Several Facebook pages were launched impersonating Alice and her mother and fraudulently soliciting donations. Anonymous comments asked “Is the bitch dead yet?”, provoking the wrath of Alice’s mother who then threatened to prosecute every comment of the sort. Her donations page was hacked and so too was a charity she worked with, successfully stealing donations for some time.
I can’t believe it! My mum just told me that some piece of poo has hacked into the Post Pal site and managed to put a PAYPAL button on there and is enjoying spending your donation to them. Post Pals are one of the charities that have supported me from the start of my journey and I was desperate to help as a little bit of money goes a long way for them. It’s horrible that someone thinks it’s okay to take money because some of the children are really ill and it’s sad that they may miss a smile because of this. My mum is taking the link off here for a bit because we don’t want to add to their problems but please don’t let the piece of poo win. Why don’t you pick a child and send them something direct and that way no one can spoil it.
Advertisers targeted Alice’s blog as well. Soon, her mother responded “to the low lives”:
With regard to all the not so lovely ‘anon’ comments been left, particularly the one asking if the bitch had died yet – you are only ‘anon’ on this blog, you are not invincible and you ARE traceable. We will find and prosecute every single one of you. I haven’t stood by Alice for four years to be affected by a bunch of (can’t say what I’d like to on here). And to ‘Ed Harding’ and ‘Scott’ … if you continue to advertise your seedy businesses in Alice’s guest book, I swear to God I will reveal your personal details and get Alice to do the same on her Twitter. Don’t underestimate me … I’m a mother.
Despite the online troubles, Alice continued along her bucket list. She was gifted a trip to see her favorite boy band, Take That, in concert. Shortly thereafter, she participated in a dog show, all the while raising money for cancer research and pushing her large readership to donate bone marrow. She then flew to Deep Sea World in Scotland when she was greeted by the staff and given VIP access to the animals.
After the shark tank, I got to train the seals which was really funny. I got kissed by one yuck and I played ball with them, but they weren’t as good as Mabel at bringing it back. I got to hold a Bearded Dragon and I loved that because I wanted mum to buy me one but she wouldn’t. A little corn snake needed a name and they said I could choose, so I called it Sam because it looked like a Sam!
Alice soon received an iPad with games and movies that occupied her through sleepless nights, allowing her parents a brief respite past a time when most 16-year-olds were in bed.
Alice’s celebrity has grown in Great Britain and beyond as she’s championed various charitable causes and bone marrow registers, all the while appearing in tabloids, broadsheets and websites around the world.
Alice completed her bucket list in August of 2012. Now 17, she continues to advocate for bone marrow registers today.
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Michelle Lynn Mayer was 39 on October 4, 2008 when her decade-long battle with scleroderma was coming to a close. She spent her day gathering keepsakes and presents for her children.
When I finished the kids’ nests of gifts, CD, journals, etc. Bill asked, “Have you left anything behind for me?” I felt horrible. I had been so focused on the kids that I had given little thought to leaving something behind for BIll. “What would you like?” I asked. “Just a box of memories,” he answered quietly.
On her blog, Michelle described the box she put subsequently together for her husband. The box included a blank Valentine’s card left over from a year when she was “too pissed at him to sign it”, an extra birthday card from a year in which she accidentally bought two, a homemade scarf and a CD beginning with a mix tape from the beginning of the relationship.
I was working on the CD the other day when Bill and I were alone in my hospice room. I asked him to lie down with me in my tiny hospital bed. Fortunately we are both small enough to fit into it together. I played the CD as we lay together and cried. “We’ve had an amazing life together,” I observed. “I have loved every single minute of it,” he responded. While I am pretty sure that he did not enjoy the time I tapped him less than gently on the head with the phone (not hard, just enough to let him know he was really pushing me to the brink), I think he was mostly sincere
“After all these years, I still don’t know why you stayed. You knew it would end this way.”
“It was too late, I had already fallen love with you. I couldn’t leave.”
We were silent for awhile. I was basking in his words, running the sentence over and over again in my mind, thinking about how lucky I am that this man followed his heart and not his head.
“We were such a good pair,” I whispered. And we were (are). Bill and I complemented each in other in nearly every way. What I lacked, he had in spades and vice versa. I literally cannot imagine being with anyone else but Bill; he is so much a part of me now. And I feel so sorry for him because I know he feels the same way and he has to let me go. I ached for the loneliness he will feel when there is no one there to understand all the inside jokes. No one will else will laugh when he drives by a beautifully landscaped house and he proclaims, “They must be nice people.”
I kissed his wavy mane of hair. He’s such a good man: loyal and steadfast, loving and dependable, witty and affable. He will find someone new to love. I truly want that for him, but laying in my hospital bed with him as we inched closer to the end of my life I finally felt the very natural sadness that comes with the realization that someone will take my place at Bill’s side. He will share the remainder of his life with another woman who will run her hands through his wavy hair, keep him from getting lost, and act as tour guide on trips to foreign lands. And I felt a little angry about this other woman who is already out there, waiting for her cue to enter this tale. I let go of the anger though because, above all, I want him to be happy.
“Someday…I want the kind of relationship you and your husband have,” wrote Hope, the post’s first commenter. “I will miss your insight, your grace and dignity. You are very much the type of woman I hope to be. Thank you for your lessons.”
This sort of comment is common for these dying bloggers who received adulation from around the world. As the writers shared their experiences, many thousands of readers became loyal, loving students, emotionally connected to the blogger until the end.
—
In March of 2011, user lucidending began an Ask Me Anything thread on Reddit. He was a 39-year-old man dying of cancer, he wrote, with 51 hours to live. “On Tuesday I’ll finally end my battle with cancer thanks to Oregon’s Death with dignity act. Who I was doesn’t matter. I’m in pain, I’m tired and I’m finally being granted a small shred of respect. Feel free to AMA if you’re so inclined.”
lucidending wanted to keep his identity anonymous in the last hours of his life. Even so, he answered hundreds of questions and comments as thousands wrote to him from around the world. There was an outpouring of sympathy towards the dying man.
“Holy shit,” wrote user cheddarben. “I don’t know you, but I am going to miss you. I wish you well with whatever happens after…”
“I think that we redditors owe you a last request,” wrote equiace. “Is there anything that you would like us to do for you, or for the world, either individually or as a community? I would love to help you live on in a small way, through your influence on others. I’d like to believe that reddit would grant any of us a dying wish.”
“Lucidending, You are the cause of the most beautiful outpouring of love I have ever seen,” wrote mollylolly88. “The ammount of honesty, comfort, and true emotion I see here is staggering. I am sitting at my computer now, rubbing dried tears from my eyes having wept for someone I have never and will never meet, and yet I will still mourn you after your passing. You are an incredibly brave person, one that anyone would be lucky to have enjoyed time with. Thank you for sharing your story with Reddit.”
“I miscarried my first pregnancy this week,” wrote another user. “My husband and I have been struggling with all sorts of questions. It was feeling like my world had ended. Just reading through here, the weight has lifted somewhat and I feel more at peace. This thread is the most profound and healing thread I’ve ever seen on reddit. Thank you so much, Lucidending. I love you, too.”
Curious, several readers asked exactly how the suicide would take place.
“I’m given medication by the doctor to self administer,” he wrote. “I already have the iv so it should be easy.”
Oregon Live reported on the story:
More than 9,000 people responded Saturday night on the social networking site reddit.com. They shared personal stories, uploaded photos and videos, and asked questions about death and dying.
But one of Lucidending’s statements suggests he may not be someone who has received a prescription to hasten death under Oregon’s law. When asked about the details of a lethal prescription, Lucidending indicated he would take the drug intravenously, which is not allowed under the Oregon law.
Under Oregon’s Death with Dignity Act, the patient must be able to self ingest the medication by swallowing or taking it through a feeding tube if that is their established way of eating. The law does not allow intravenous injections. Lucidending did not respond to personal messages sent Monday.
After reading the Oregon Live story, previously skeptical journalist Adrian Chen joked that lucidending was a fraud he had perpetrated. The reddit community and at least one online news outlet took the tweet seriously though Adrian soon denied there was any truth behind it. The emotional outpouring that had produced such sympathy for lucidending quickly turned to a loud chorus of vitriol directed toward Chen.
“Way to go, Adrian,” wrote administrator raldi. “You either impersonated a dying cancer victim, or you’re joking about having impersonated a dying cancer victim. Either way, congratulations, you’re a real class act.”
Chen has since acknowledged that his tweet was “stupid.”
The incident serves as a reminder that the dying have never before been able to share their perspective so honestly and immediately with the entire world. Conversely, liars have never before been able to dupe many people so quickly.
The true identity of lucidending remains a mystery.
—
Eva Markvoort was a charismatic former beauty queen suffering from cystic fibrosis. She began blogging in 2006 on LiveJournal as 65redroses.
Her first post came on July 15, 2006:
Why am I here? on LJ? I have fabulous family and friends who are there for me and listen and help me. I live life to its fullest potential and I am always positive and happy. But…the truth of the matter is that there is a part of me that they will never understand. That no one I’ve known will ever understand and that I deal with every day of my life. A part of me that I believe someone else out there in the world does understand. I’m just not allowed to ever meet you. Because I have cystic fibrosis. and MRSA. I’m not going to explain what those are because I hope the only people who ever read this will allready know exactly what those to things are.
Although it helped her to establish important personal connections with fellow CF-sufferers, Eva’s blog became much bigger than that. Millions followed her through treatment including a double lung transplant in 2007 that had shown early signs of success.
“Receiving new lungs wasn’t ever going to cure her CF, but it could give her a second chance at life,” wrote the director of a documentary about Eva, Nimisha Mukerji. “The difference between Eva before and after transplant shocked all of us who knew her. For the first time as an adult she could run, she could sing, she could dance.”
Eventually, her body would reject the transplanted organs. On February 11, 2010, she informed her readers of the bad news.
Eva continued to write her vivid, descriptive poetry on her blog. On March 22, she described her days:
i hold onto who ever is near
since when am i clingy?
i grasp onto
annie in the morning
jackie and robin in the afternoon
dad in the evening
maman all the time
episodes of projectile vomiting
hours of gasping for breath
waves of nausea lulling out into
hours of sleepiness once the meds have hit
leaving me daydreaming about stepping out of this room
just getting up
free of tubes and plugs
and walking out the door
pushing open doorways
skipping down the street
breathing free
free
On March 25, Eva wrote her last poem in her final post on the blog. These were the last words she wrote to her readers, family and friends:
I am not managing, not managing at all. I’m drowning in the medications. I can’t breathe. Every hour. Once an hour. I can’t breathe. Something has to change.
—
Over four years of enduring ALS, nearly everything became difficult for Brian Hill, blogging included. ALS atrophies muscles, rendering a sufferer weaker and less capable to walk, stand, speak or breath by the day. Despite that, Brian documented his decline closely. At the end, writing a single sentence was herculean.
On Thursday, January 10, 2008, he wrote:
i wish i could w alk out there and do s ome parenting.llllll
The next day, he wrote again:
i a m so glad my w ife’s and kids’bbbodies do not have A LS……
And in the following two days, Brian wrote about his caregiver. On Saturday:
my best day- caregiver, the one w ho got the 25 -percennt raise, has since about thhat time,,, develooped abn attachment to the idea that i disrespect him. he will quit after goking home on a visit. but he is also attached to thinking of hims elf as v ery getle.lll
And Sunday:
tried thhis:
pls come every time i ring, even if u think i am asleep.
]and please no jokes about words i point. just try to help.
it is iimpossible foe to reach all of the card. u may havve to move it to where my fingers are.
at 2:38 he seemed furious with himself for agggreeing to this. at 5:30 i had to pee. he had put the card where it could barely ring the bell. i flailed and it made weak dings. i tried my shriek, but he did not wake. the diaper leaked as per usual.
when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words:
“you choose this, not me. you want to make it hard, what can i do?”
—
When Derek K. Miller died, he had a post prepared for the occasion.
Here it is. I’m dead, and this is my last post to my blog. In advance, I asked that once my body finally shut down from the punishments of my cancer, then my family and friends publish this prepared message I wrote—the first part of the process of turning this from an active website to an archive.
Many dying bloggers write a note to be published once they’ve passed. Often, it’s written as though it’s coming from the grave.
Since Derek passed on May 3, 2011, millions have read his final note. The first comment on his post is from user Jon Pawson.
I’d never visited this blog before reading a news story about Derek’s last post. I’m glad I clicked the link to come here and read it. It’s something I’ve desperately needed in the last few months. I’ve spent years being this twisted negative person, allowing too much of the tragedy in the world to effect me, allowing too much of other people’s negativity to effect me. Reading Derek’s post is… life-affirming. Life’s too short to dwell on negativity, it’s too short to spend it slaving away at things just because it’s what’s expected of you. I feel like I’m finally starting to see what life is really all about and how I should be living it. Love is the most important thing. Second to that is wonder, not the baseless, empty, inquiry-stifling wonder that theists feel, but the wonder that science bolsters, and I can tell Derek loved this world and all the mystery it holds. I feel really good, I feel like everything’s going to be alright. So, thank you Derek. And thank you Airdrie, Lauren and Marina for helping Derek become who he was. You people are something truly special.
This is the sort of powerful reaction one regularly in close proximity to dying bloggers. Similarly, Eva Markvoort’s blog touched thousands deeply, even saving a suicidal woman who was inspired by Eva’s grace under pressure.
Millions of readers articulate again and again that they have found strength in the words written by the dying bloggers.
—
Brian Hill died on Saturday, February 8, 2008. His final prepared post is shorter than most:
ok i’m dead. so what? i partook of much wonder and beauty. you should be so lucky!