The Impact of Blogging from CNN Health

April 27, 2010

Death at 25: Blogging the end of a life

By Madison Park, CNN
April 27, 2010 8:11 a.m.
Eva Markvoort started her blog, 65_RedRoses, to document her struggles with cystic fibrosis.

Eva Markvoort started her blog, 65_RedRoses, to document her struggles with cystic fibrosis.

  • Cultural shift occurs as people discuss impending deaths with frankness, doctor says
  • Eva Markvoort’s blog detailed violent struggle with cystic fibrosis
  • Her memorial service will be livestreamed on her blog at 1 p.m. ET Friday
  • //

    (CNN) — The former beauty queen stared into the camera, but this was no pageant or performance. She looked frail and thin, and her hair was rumpled. But Eva Markvoort smiled weakly.

    “Hello to the world at large,” she said in the video. “To my blog, to my friends, to everyone. I have some news today. It’s kinda tough to hear, but I can say it with a smile.” Propped in a hospital bed, Markvoort sat surrounded by her family. “My life is ending.”

    Markvoort had cystic fibrosis, an incurable disease that causes mucus to accumulate in the lungs. For nearly four years, she narrated an unvarnished blog about life with a terminal disease. Even when it appeared unlikely that she would receive a second double lung transplant, the 25-year-old continued to chronicle life on her blog.

    The public sharing of one’s last thoughts is a way to acknowledge that the end is near, but it also destigmatizes death for others, said medical experts who work with terminally ill patients.

    In the Internet age, many people reflect on their lives through video, personal blogs and larger websites such as CaringBridge.org, where people who have major health events connect and share online.

    “What we’re seeing over the last decade, we are gradually moving from a culture that had become during the 20th century, very closed about death,” said Dr. Chris Feudtner, research director of Palliative Care Services at the Children’s Hospital of Philadelphia in Pennsylvania.

    A cultural shift has occurred, he said, referring to columnists and Randy Pausch, a computer science professor at Carnegie Mellon University, who discussed their impending deaths with frankness. Pausch’s last lecture, urging students to fearlessly pursue their dreams, went viral on YouTube in 2007, getting more than 11 million views.

    Their line of thinking may be, “I’m still alive. I don’t want to be closed. I want connection. I want to be able to share what I’m learning on this journey,” Feudtner said.

    Bloggers like Miles Levin, an 18-year-old who had a rare soft-tissue cancer and died in 2007, and Michelle Lynn Mayer, a 39-year-old mother who had scleroderma and died in 2008, shared their thoughts on living and dying, too.

    “We all tend to be open via video, blog or Facebook about what we do every day. It’s hardly surprising that openness extends to people’s last days or weeks,” said Dr. David Cassarett, author of the book “Last Acts,” about end-of-life decisions.

    These bloggers, Cassarett said, are helping the rest of us through largely uncharted territory. He used a sports analogy to explain.

    "I've loved more than you could possibly think." Markvoort, center, with friends in her hospital room.

    “I’ve loved more than you could possibly think.” Markvoort, center, with friends in her hospital room.

    “Hardcore bicycle riders ride in packs, and there’s a tradition,” he said. “The one in the front points out hazards in the road to those who come behind. It’s both an opportunity to be helpful, if you’re in front. You spot sewer grates, so others can avoid accidents.”

    Blogs like Markvoort’s could be acting similarly, he said. They don’t shy away from the ugliness and brutality of the dying process.

    “They’re not just about hope but also about despair. That is, they’re telling us not just what we want to hear but also what we need to hear,” Cassarett wrote.

    Markvoort started her blog in 2006 because hospitalized patients with cystic fibrosis were isolated because of infection. Alone in her hospital room at Vancouver General Hospital after visiting hours, she sought to connect with other patients by finding them online.

    The blog’s name 65_RedRoses, originated from her childhood inability to pronounce cystic fibrosis; she, as have many other children with the disease, called it “65 roses.” Markvoort added the word red because it was her favorite color.

    Markvoort was the subject of a Canadian documentary also called “65_RedRoses.” It showed her harrowing experiences with the disease: violent coughing, vomiting, IVs, the painful procedures that made her scream.

    Her dreams: "Stepping out of this room ... skipping down the street breathing free, free."

    Her dreams: “Stepping out of this room … skipping down the street breathing free, free.”

    The documentary followed her as she waited for a double lung transplant and as she formed online friendships with two American girls who have cystic fibrosis. The film ends on a happy note: Markvoort got her lung transplant and appeared to be on the road to recovery.

    But less than two years later, her body began rejecting the organs. Her lung capacity dwindled, and every breath became laborious.

    Sometimes, her blog posts were raw, filled with “episodes of projectile vomiting, hours of gasping for breath, waves of nausea lulling out into hours of sleepiness.”

    “I’m drowning in the medications,” she wrote. “I can’t breathe.”

    Initially, Markvoort’s mother, Janet Brine, said, her daughter’s openness made her feel uncomfortable.

    “We connect differently than your generation. I’m part of the digital world,” Brine recalled her daughter telling her.

    The constant theme in Markvoort’s blog is love.

    In a video entry where she talks about her impending death, Markvoort said: “I think I’m very lucky, because I’ve loved more than you could possibly think, could possibly imagine. So I’m celebrating that: celebrating my life.”

    Markvoort grew up in a suburb of Vancouver, Canada. Girly to the core, she dyed her hair red and loved outrageous fashion like pink boas, polka dot dresses and striped knee socks. She was crowned a beauty queen (of New Westminster, a suburb of Vancouver) and attended University of Victoria, hoping to become an actress.

    "Hope resounds. I am not dying. I am living living living more each day." Markvoort is seen here with her sister, Annie.

    “Hope resounds. I am not dying. I am living living living more each day.” Markvoort is seen here with her sister, Annie.

    But she couldn’t pursue that career because of her unpredictable health.

    “But she has found other ways to have that artistic outlet, and writing the blog is one of them,” her mother said.

    She championed cystic fibrosis awareness and organ donations. From Los Angeles to Poland, letters, stuffed animals and cards poured into her hospital room.

    “I felt so selfish when I stumbled across your [LiveJournal] on here, because I’ve been smoking cigarettes for years, taking my lungs for granted. You helped me quit the worst habit I’ve ever had,” one wrote.

    When Markvoort was too frail, she dictated blog posts to her friends and family.

    “She had already processed the concept of dying,” her mother said. “And for her, she came to terms with it quite quickly. For her it was like, ‘Oh, my gosh, I don’t know how much time I have. I have things to say.’ There was a sense of urgency on her part.”

    Sometimes, her posts have no words, just pictures of her and her loved ones, with their eyes crossed, tongues sticking out and comical gestures.

    “This is the end of my life, but it’s not the end of my love,” Markvoort said in a video entry.

    She died the morning of March 27.

    In the same style that she had allowed her readers (who were often strangers) into her life, Markvoort’s family plans to hold a memorial service that will run in a live stream on her blog at 7 p.m. ET Friday.

    “She indicated that she thought it would be a cool idea if whatever we did, was made available for her online blogging community,” her mother said.

    (Taken directly from CNN Health and can be found at this link: Death at 25: Blogging the end of a life)


    Senators Get Involved for a Facebook change!

    April 27, 2010

    You know Facebook has made it big when senators are pushing to make changes on Facebook functions. In the article, Senators urge Facebook to change privacy settings, the issue of privacy is brought up as this social networking site tries to expand and make more profits. Check out the video on the link also to further understand this article.

    The article is below and has been directly taken off of the CNN Politics website:

    Washington (CNN) — Four Democratic senators called on Facebook CEO Mark Zuckerberg on Tuesday to reconsider the recent changes in its privacy settings and asked the Federal Trade Commission to streamline guidelines regarding privacy on all social networks.

    “Now, users have less control over private information, and it was done without the users’ permission,” Sen. Charles Schumer, D-New York, said on Capitol Hill.

    Schumer and Sens. Michael Bennet of Colorado, Mark Begich of Alaska and Al Franken of Minnesota sent a letter to Zuckerberg about Facebook’s decision to allow third-party sharing of users’ information.

    “We are writing to express our concern regarding recent changes to the Facebook privacy policy and the use of personal data on third party websites,” the senators wrote. “The expansion of Facebook — both in the number of users and applications — raises new concerns for users who want to maintain control over their information.”

    Last week, Facebook began a “small pilot program” with Microsoft Docs.com, Pandora and Yelp that would offer personalized experiences when visiting those sites.

    “These partners have been given access to public information on Facebook — such as names, friend lists and interests and likes — to personalize your experience when you’re logged into Facebook and visit their sites,” Austin Haugen, a Facebook product manager, wrote on the network’s blog.

    The senators specifically took issue with the changes because the new settings require users to “opt out” if they do not want to share any information.

    “The way to go is opt-in,” Schumer said. “The default position should be that the information is not shared, not that the information is shared.”

    Amplifying his colleagues’ concerns, Schumer called on Facebook to “reverse its policy so that users have to opt in to shared data, rather than opt out.”

    The New York Democrat added, “The onus here should be on Facebook, not the user.”

    Franken emphasized the difficulty for users to opt out under the current settings, saying he would “read what you have to do to opt out, but we really only have so much time.”

    Bennet, who was a superintendent of the Denver, Colorado, Public Schools before being appointed to the Senate, expressed concerns about children not understanding the privacy issues.

    “We want to make sure that when it comes to the very important question of privacy, that the users of these websites are in control of their most personal information,” he said. “This is an evolutionary technology. There is a huge amount of benefit that comes from Facebook and companies like Facebook. But we have to be vigilant to protect the information that is in a sense personal.”

    Facebook defended its privacy policies in a letter to Schumer before Tuesday’s news conference.

    Elliot Schrage, Facebook’s vice president of global communications, said the changes allow for enhanced personalization and social activity while providing users with the ability to limit who is able to view their information.

    “Facebook is designed to give people the tools to control their information online and our highest priority is to keep and build the trust of the more than 400 million people who use our service,” Schrage wrote. “These goals were central in the development of the new products we announced last week. Specifically, these new products and features are designed to enhance personalization and promote social activity across the Internet while continuing to give users unprecedented control over what information they share, when they want to share it, and with whom. All of Facebook’s partner sites interact with a user’s consent.”

    Schumer also called on the FTC to streamline guidelines on all social networks to allow users to easily understand privacy settings when signing up for sites.

    Peter Corbett, CEO of iStrategy Labs, said Facebook’s privacy policies are common among digital companies and websites.

    “The onus is on the user to opt out of data collection for every major site,” said Corbett, whose firm consults for major brands on digital strategy.

    Corbett noted that Google collects search information and Amazon collects a detailed analysis of what books and music its consumers are browsing to recommend other products.

    “Most users probably don’t understand how to opt out, nor care,” Corbett said. “They want an easy way to buy books on Amazon or connect with friends on Facebook. We have sacrificed privacy for convenience.”

    CNN has a business relationship with Facebook that allows CNN.com users to recommend and share stories with their Facebook friends. This kind of arrangement is not what the senators expressed concern about.


    TOW 16: Top 10 List for Learning to Blog

    April 26, 2010

    1. Be consistent: The more you blog the more beneficial it will be to you and to others. If there is not a constant stream of information coming from your blog than others will not want to read it (unless your blogging for a class and students are required to write on others blogs haha).
    2. Interact with others: Blogs are a great source of useful information! There are a lot of PR professionals that blog daily and that can give you tips for your blog.
    3. Tell the truth: your credibility is on the line. Always be truthful and make sure you credit and site people, books, websites, and others’ blogs that you take information from. Being honest with your readers allows them to trust your site and allows them to be honest in return.
    4. Use an APA style book: The Associated Press Stylebook is a great resource for any question you might have about “capitalization, abbreviation, spelling, numerals, and usage.” The book also has many other features that make it a Public Relations Students best friend.
    5. Check for spelling and grammar: Your writing should be casual but if there are errors your readers might consider your blog uncredible.
    6. Use hyperlinks and add picture and video: make your blog interactive. No one wants to look at a plain page with a bunch of words. Hyperlinking allows readers to see exactly what you are talking about and get connected to the rest of the public relations world.
    7. Think about who you are writing too: keep your audience in mind and be relatable.
    8. Allow for discussion: talk about current topics and ask your readers questions.
    9. Keep it simple: Don’t confuse your readers with jargon and vocabulary that they will not understand.
    10. Respect your audience: don’t use inappropriate language or obscenities— be professional with your word choices.

    Public Relations in Thailand

    April 26, 2010

    While this following PR campaign video may not interest many people it holds significance for myself. In less than a month I will be moving to Thailand for two months! The video itself simply shows some Thai students working on a PR project, but this shows the importance of the public relations field world-wide. As we are learning and blogging for our class students across the world in different languages are learning similar techniques in the PR industry!


    Chapter 15: Giving Speeches and Presentations

    April 26, 2010


    Ok so who loves giving speeches????

    Yah I don’t know many people either who just love giving speeches either. So when reading this chapter I found the “basics of giving a speech” to be of great help. When you’re in the public relations field your speeches need to be as professional as possible and you need to be able to coach your clients on how to properly present their own speeches too!

    So let’s begin to take a look at what Public Relations Writing and Media Techniques (by Dennis L. Wilcox) says about giving a speech!

    • Giving a speech is all about the delivery!!!
    • Know your objective: your speech needs to accomplish something.
    • Structure your message for the audiences ears:

    There is no chance to go back, no time to let it slowly digest, no opportunity for clarification. The message must get across now or never.”

    • Tailor all remarks to your audience: find out as much as you can about your audience beforehand. For example the following factors could change how you should present your message: age, occupation, gender, race, education background, vocabulary, group memberships, politics, religion, etc.
    • Give specifics:  the more specific you are about the details of your topic the more likely your audience will remember them. Generalizations get you nowhere.
    • Keep it timely and short: end of story!
    • Use gestures and eye contact to your advantage: this can make or break a speech. This helps to establish your creditability to your audience.— Do realize that nervousness fits into this category and is distracting to your audience.

    TOW: Week 15

    April 25, 2010

    In his book, Public Relations Writing and Media Techniques, Wilcox  describes that a social media news release is an electronic news release “pioneered by the major distribution services, such as Business Wire, PR Newswire, and Marketwire, now make it possible to embed high-resolution photos/graphics, video, and audio components.”  Social Media News Releases are also termed Multimedia News Releases or Smart Media Releases.

    So what makes a Social Media News Release superior to a plain news release? The appeal is much greater to journalists who focus on the online news sector. With cell phones, computers and PDAs on the rise, people have shifted to the internet to retrieve the latest news. Giving a journalist more information makes their job easier. If the SMNR is created in a proper format and the information is news worthy, than sending your information in a SMNR form versus a news release could make the difference between your “news” getting published or not. Bloggers also use SMNR as a source to publish current information. SMNRs are extremely useful only when created in the proper way. If links or tags are overused than the SMNR could harm the image of your company or client. With all the multi-media features on this news release it is also easy for the reader to get distracted, so be precise with your message because it is the most important part!

    Here are three blogs that discuss the importance of SMNRs:

    1. Presitt: Open question to journalists: Standard press releases vs. SMNRs
    2.  PR-Squared: A Radical Suggestion for the Social Media Release
    3.  Mark Evans Tech: What Ever Happen to the Social Media Press Release

    (picture taken from Presitt)


    PR Within the Hotel Industry

    April 25, 2010

    For a recent assignment in my Hotel Operations class I was given the task of interviewing Convention Service Managers (CSMs) from hotels across the United States. The correlation between my Public Relations Minor and my Hotel and Restaurant Management Minor began to connect. In chapter 14 of our Public Relations Writing and Media Techniques book, I read about the use of email, memos, and proposals. With in a hotel especially convention hotels all three of those aspects are important.

    At all of the hotels the CSMs are in charge of similar tasks that require long hours and precise decision making.  Overall each of the CSMs are handed over the events after the Sales Department had planned the overall specifics that were issued to the client in the proposal. Since all of these hotels have over 700 rooms there is always an event in-house and several in the planning process. To be a CSM you must be prepared to multitask and make split-second decisions that will impact large amounts of people. Overall the fast-pace process and smaller tasks like making BEOs, sending out memos, and dealing with clients through phone calls and emails before the event starts.

    So hopefully from this quick preview you can see that having knowledge of the public relations field is helpful when working as a Convention Service Manger within a hotel.