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Facebook’s trust engineers

If you’re interested in digital life and social science, the latest Radiolab podcast is fascinating. They start with an astounding perspective on the scale of Facebook, use an example of a problem that led to an engineering — and social engineering — solution, and then roll into the emotion manipulation study that caused a flurry of hand-wringing (including mine) last summer. The way that the Radiolab team unfolds this story is smart and interesting, and I recommend listening before reading my comments below.

http://www.podtrac.com/pts/redirect.mp3/audio.wnyc.org/radiolab_podcast/radiolab_podcast15trustengineers.mp3

While listening, I thought of the testing we used to do when I worked at Huge Internet Company. Much like in the podcast, I saw firsthand the differences between running tests that involved tens of millions of diverse people and academic experiments conducted with a few university undergraduates. We had facilities for eye-tracking studies, focus groups, and one-on-one testing, plus we did some in-home observation and beta tests. I led projects that were user-facing and host-based; they ran on our servers, not the users’ machines, and therefore could be updated on the fly.  We could try a product redesign with a couple million people before doing a full rollout or split what we showed to users for A/B testing. It was a marvelous way to learn about human behavior online. Though we weren’t doing things like skewing a person’s feed to have more positive or negative stories, we certainly tested different ways of naming our products and writing copy to increase attention, long before clickbait headlines. We played with color and shape and screen layout, and things as small as “OK” vs “Ok” and whether that button should be to the left or right of “Cancel” on a warning. How many online friends does the average user have, so we know how big the default messaging list should be?  How do people act and feel if their list of friends is smaller or larger than the default? Knowing what we had done, it was hard not to roll my eyes later when a professor would authoritatively cite a study with a test group of 80 American 18-22 year olds.

The Facebook engineers in the podcast clearly think that they are trying to help users. However, the line between help and potential harm or manipulation is thin and blurred. The social scientists in the piece are used to dealing with Institutional Review Boards (IRBs), and being part of academic professional organizations with codes of conduct that are designed to protect human test subjects from even the tiniest possible harm without a means for redress. The mindset of the two groups is very different yet both want useful information and a positive outcome for all.

If we start thinking about all the ways in which we are manipulated by organizations, I’m not sure that Facebook rises to the “most evil” level. Yet. Brand marketing is based on convincing people to buy one product over another, and it’s often done by giving a false impression or obscuring negative truths. Politics and media; need I say more? It can be argued that we have been done great harm by those groups through manipulation to sell a product or idea, rather than to help us solve a problem. Facebook has the reach and ability to manipulate billions of us without our awareness, and maybe an external ethics check would be useful. An IRB model, perhaps. (If you’re unfamiliar with an IRB, a simple explanation is that before research begins, it has to be approved by a board at that institution. They review the research question and methods, protection for subjects, and conformance with ethical rules. If you have been a subject in research and have a question or concern after the experiment, the IRB acts as a contact point as well.) IRBs don’t move at the pace of Internet companies, though — think of glaciers vs lightning, in my experience — and who would judge which companies or which changes require approval?

As a user, I hate the idea of anyone manipulating me for their own purposes, fact of life or not. As a researcher, I see the potential for harm and want ethical oversight, but I’m also excited by the knowledge we could gain from large and diverse subject groups. As a former tech manager, I know the ceaseless push for improvement and results as well as the need to quickly fix things that anger or confuse users. In the end, I’m not sure which voice in my head is the loudest.

 
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Posted by on February 13, 2015 in Research

 

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Privacy vs. personalization: finding a balance

Try to discuss data privacy with someone outside of the tech world and an indignant, “I don’t have anything to hide!” usually comes up. Yet most of those people not only have locks on their doors, they have doors! Maybe even curtains or blinds on the windows. What nerve, wanting to choose who can rummage through their personal things and watch their every move.

When I worked at a huge Internet company, our first steps into collecting data for the purpose of personalization were made with the best intentions. If we must show you ads in order to provide a service at a reasonable price, isn’t it better if the ads are relevant to you? Focus groups said yes. Won’t you be more interested if we help you find content and services that are connected to topics you already visit regularly? Those certainly had a higher clickrates. There was no nefarious goal but a desire to provide a more compelling product and minimize complaints. Over time, of course, the data gained a value of its own and that thin line between serving and exploiting users has been breached again and again.

This season of Parks & Rec has featured smart satire about a tech company that offers exciting products and services, but with utter disregard for personal privacy (though the company motto is, “Wouldn’t it be tight if everyone was chill to each other?”) The clip above is one example, where Gryzzl sends gifts to the townspeople of Pawnee that are startlingly appropriate. And that’s the thing: personalization can be wonderful, but when it’s done based on data gathered without your knowing consent, it isn’t ok.

Living with an Amazon Echo, I’m realizing what it’s like to have a digital assistant with very few ties into my personal data. It’s not good. It could be so much more useful by integrating with my email, messaging, calendar, network folders, and my Internet-connected devices. In fact, without those connections I don’t think it can be successful. Though I have some friends who are almost off-grid and others that have overshared since birth, I try to take a middle path: I want the benefits that come from detailed and accurate personal data smartly integrated, but I want my information protected like it was the Crown Jewels and never used or shared without my clear and unambiguous consent. I would like to require reauthorization to use my data, on a regular basis, perhaps every year or two. I believe I should be able to review the data that is collected and how it is being used, and be empowered to request deletions and amendments.

On the theme of reviewing what is collected, I downloaded a copy of my Facebook data this week. Even though I have a good idea of what I share and wasn’t concerned, the contents made me angry. What was in there?  Every event that I had been invited to, not just the ones I had accepted. My entire list of Friends (of course), but also requests sent/received but not accepted. My “Friend Peer Group” was categorized as “Established Adult Life”. Fair, I suppose. They had all of my Wall posts, including activity notes from apps that I have set not to share and that never appear on my Wall on Facebook itself. Every app I’ve used even once to enter a contest. Then, there was the ridiculous Ads Topics list, apparently for targeting purposes. Some of the items seem to be misunderstandings of my other data. Here, take a look at some of the bizarre ones, with my snarky commentary:

  • #Pro-Ject  [huh?]
  • #Harvest (wine)  [wine is lovely, but someone else can pick the grapes, thanks]
  • #Phonograph  [I also like my velocipede]
  • #Jesús Arellano  [who? I have a friend with that surname, but I do not have a friend in Jesús.]
  • #Farmer  [???]
  • #Calendar (Mac OS)  [I last used an Apple product in 1982]
  • #Gramophone record  [for the phonograph, duh]
  • #Shoe  [just one, please]
  • #World  [I keep my stuff there.]
  • #Colors (TV channel)  [?? Apparently a Hindi station. Hmm. I’ve got a color TV?]
  • #Extras (TV series)  [I’ve been an extra, but… I have no idea.]

None of those are particularly awful. It’s not as if they’ve wrongly labeled me as a two-time felon with a heroin habit. However, the items are inaccurate and stupid. I’m torn between more emphatically liking things that appeal to me and liking everything, to screw with the data.

If you’re willing to give away some privacy for a benefit, it’s incredibly important to read the fine print. I smashed my smartphone this week (insert lots of cursing because I’m not at my upgrade date), which gave me a reason to visit the Verizon Wireless website. I wasn’t aware of the Verizon Rewards/Verizon Select program before this, and sure, it sounded appealing: earn points by simply paying my bill and use those points for gift cards and discounts. Great. What’s the catch? Oh, it’s a big one. They’ll analyze my data and sell it to marketers to target ads at me. Here’s an excerpt from their participation agreement about what data they’ll use:

  • Addresses of websites you visit when using our wireless service. These data strings (or URLs) may include search terms you have used.
  • Location of your device.
  • Apps and device feature usage.
  • Demographic, interest and behavior characteristics provided to us by other companies, such as gender, age range, sports fan, pet owner, shopping preferences, and ad responses.
  • Demographic, interest and behavior characteristics developed by Verizon.
  • Information about the quantity, type, destination, location, and amount of use of your Verizon voice services and related billing information (also known as Customer Proprietary Network Information or “CPNI”).
  • Other information about your use of Verizon products and services (such as data and calling features and use, FiOS service options, equipment and device types).

Wow. There is no way on earth that I would opt in to that. I’m happy with Verizon’s service, but this? No. To make matters worse, a Time article about the program included this quote from Louis Ramirez of dealnews: “If you read Verizon’s Privacy Policy Summary, that means you’re subjecting yourself to telemarketing, e-mail marketing, postal mail marketing, and door-to-door calls.” Hell no.

The balance between privacy and personalization is extremely tough to achieve. I dream of a near future with useful devices, charismatic robots, and meaningful connections in the Internet of Things. That requires me to extend limited trust to corporations who have done little to nothing to earn it. At the same time, it has become clear that putting trust in any level of government is stupid; it makes the most sense to assume my personal data is being collected and can be retroactively searched and misinterpreted to suit any agenda. Whether or not I have anything to hide, I choose to have curtains and doors and locks on those doors; I want and deserve the authority to control access to my personal life.

For now, I seek to find a precarious balance by using privacy tools online (HTTPS Everywhere, Disconnect, Adblock Plus, Privacy Badger, and sometimes Tor). I skim Terms of Service before clicking, and I don’t install apps or programs that want more than I’m willing to give up, no matter how appealing they are. I don’t trust Google, but I choose to use many of their products because they work together and I don’t spread my data across a bunch of services. I have long-term alter ego accounts that I can use if I need, as well. These methods are occasionally annoying, but the whole result is something I can live with. I can keep my optimism and quiet my paranoia, and maybe that’s the best I can hope for right now.

 
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Posted by on February 6, 2015 in Culture, Digital Devices

 

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That quiz you aced and shared? Maybe it was rigged.

I find a couple of shared quizzes in my Facebook feed every day. Most of them are goofy, but when it comes to fact-based quizzes, it seems that nobody ever shares the ones they bomb. Is that because of human nature: image crafting, socially-acceptable bragging, and taking quizzes on which you expect to excel anyway? Or is it because the tests are completely fake?

This morning, a quiz asking “Could you pass the German citizenship test?” was shared in a Facebook group for German language learners. The initial poster was surprised she scored 100%. Others quickly added their comments, shocked but self-congratulatory that they only missed one or two questions. When one fellow said that he was sure some of his answers were wrong, yet he still scored 90%, my spidey sense began to tingle. So, I took the test a few times. It consists of 20 multiple choice questions, each with three answers. The questions remain the same and the answers don’t move if you repeat the test. My results?

  1. I chose the 1st answer to every question: my score was 100%
  2. I chose the 2nd answer to every question: 90% (2 answers wrong)
  3. I chose the 3rd answer to every question: 95% (1 answer wrong)
  4. I chose answers in the pattern of A, B, C, A, B, C, etc.: 95%
  5. I tried to choose a wrong answer on every question: 100%! Even though I chose the Stars and Stripes as the EU flag.

Hmmmmmmm. Logically, my first re-test disproves the accuracy of the quiz — if all of the A answers were correct, 18 B answers cannot also be correct. I repeated the test just to see if I could get a score below 90%. Nope.

So, I took another quiz on the same site. This one made the rounds in my Facebook feed earlier in the week: “How good is your school knowledge?”  Again I tried to answer every question incorrectly. Abraham Lincoln was the first US president. Poland doesn’t share a border with Germany. A tiger is not a mammal.  My results? 15/15! “You have accomplished the incredible feat to answer each question correctly. You are either damn clever or you have paid attention really well in school! You have answered all questions correctly and it is remarkable how much school knowledge you have retained in your head. We congratulate you as your school knowledge is simply unsurpassable.”

Back_Schulwissen_15

I began to comb my Facebook feed to see what other fact-based quizzes people were sharing, but I only see entertainment-style quizzes now. Other than knowledge tests like the ones above, there seem to be a few types:

  • Conversation starters: “What natural disaster is your temper like?” or “Can we guess your age?” These seem to lead to chatty conversation threads when shared, but let’s not call them scientific.
  • Modern horoscopes: “What color is your aura?” or “What is your spirit animal?” It seems that all the possible results are flattering and vague enough to apply to anyone, just like old school newspaper horoscopes.
  • Pop culture quizzes: “What would be your best subject at Hogwarts?” or “Are you as well-read as Stephen King?” Some of these are pure amusement, others — like the Stephen King quiz — are based in a factual list. More likely to share if you’re into Harry Potter or Stephen King, I would guess.
  • Just for giggles: “What is your stripper name?” “How would John Travolta mispronounce your name?”  That sort of thing.

Both of the fact-based quizzes I linked above were created by a German social media marketing firm based in Cologne. I bet their share rates are a lot better than quizzes with legitimate results. It’s not stated that the results are for entertainment only and not calculated, which I find deceptive, but does anyone really think that a 15 question multiple-choice quiz accurately reflects how much they remember from school?.

I guess the bottom line is: Don’t feel inferior if your social media contacts seem to have turned into the (IBM) Watson of online quizzes overnight, and you might not want to brag about your own results until you’ve checked the test.

 
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Posted by on December 30, 2014 in Side Topics

 

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Random thoughts and Rudolph

Ever start to write about a topic that’s just too large, leaving you wallowing in drafts and rewrites for days?  I did that with a post I began on the weekend, so I started another post to publish while I was thinking. Wouldn’t you know it, the second post is turning into a monster, too. A couple random thoughts will have to do for today, since it’s almost Christmas and I’ve got some last minute elf work to finish!

Playing Rudolph

My Amazon Echo arrives tomorrow. It’s not a comprehensive digital assistant, but I’m hoping it will be a decent voice-controlled music player/Bluetooth speaker with some bonus features. Since my personal data is mostly in the Cthulu-like tentacles of Google, I’d be more excited if Alexa (the Echo) and Google Now could work together (but no — Alexa even uses Bing for search results. Ugh.). I’m envisioning a near future where I have three disconnected digital assistants: Alexa, JIBO, and Google Now. That’s far from optimal user experience. Google Now is almost always in my pocket, JIBO can be moved around the house, and Alexa needs to be plugged into a wall, so I’m seeing Alexa in a niche role, sitting between my writing table and the kitchen to play music and answer simple questions.

I’m critical of Facebook for many valid reasons, but as a place to keep in contact with people I truly like but never see, it’s fabulous. A photo I posted yesterday got “likes” from people I’ve known for more than 40 years and less than 6 months. Family members, high school friends, college friends (from the late ’80s), college friends (from the early ’10s), colleagues at two companies, and friends met first in virtual worlds (gaming/SL). People who are spread around the US and Europe. People ranging in age from early 20s to late 60s. People with white, tan, and brown skin. Married/single/partnered, straight/gay/who knows. Military veterans and lifelong hippies, people all over the political spectrum. Of those whose religious faith I know, Catholic, Jewish, Jehovah’s Witness, Mormon, atheist, agnostic, Lutheran, Pentecostal, Buddhist, and Southern Baptist are all represented. My Australian and Islamic friends were slacking or my list could be a teensy bit more diverse.

I don’t put ads on my blog (though, since it’s a free WordPress site, you might see some). However, I do have links to non-profit organizations in my sidebar. If you do some charitable giving at this time of year, please give them a look. Kiva allows you to make small loans to entrepreneurs and farmers around the world who fall outside of the commercial credit system. Your money is repaid and you can loan it again and again. Doctors Without Borders has been stretched to the limit with the Ebola crisis this year. I have a slight preference for supporting Partners in Health, founded by anthropologist/physician Paul Farmer.  PIH does amazing and caring medical support work; I just don’t have a nifty logo in the sidebar for them yet. (Doctors Without Borders foolishly, in my opinion, rejected offers of assistance from medical anthropologists with experience in West Africa, whereas PIH takes a more holistic approach. They’re both excellent groups and use their resources well.)

This isn’t the easiest of holiday seasons, but if you celebrate at this time of year, enjoy! Christmas is my tradition, so I wish you a happy one.

Merry-Christmas-3-Hd-Wallpaper

 
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Posted by on December 23, 2014 in Relationships, Side Topics

 

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Finding peace without ignorance in a hyperconnected world

Winter sunset in Friesland

Once upon a time, our ancestors knew little beyond the events in their clan or tribe or village. News from the outside world came with the danger of travel and trusting others. Later with improvements in transportation, the growth of cities, and communication technology, when a crisis occurred in a land far away, they still might not hear about it for days, weeks, months, or ever.

It’s now possible to see a global array of horrors and indignities while sipping my morning coffee. I am not compassionate by nature. I am, however, quick to feel outrage at injustice, cruelty, and ignorance. Combined with a love of learning, this creates a personality type that can get quickly overwhelmed. In the past couple years, I’ve found myself breathless with anxiety and rage about some topics. This builds upon the past 15 years of increasing political animosity in my country, which I’ve felt as a stressful tightness in my chest. It doesn’t seem that I’m the only one in this situation. How can we deal with this? How can I?

The easy solution would be to allow myself to be uninformed. When I avoid the news for a while, I’m certainly less anxious and the world goes without me. Yet, that’s unsatisfying. I care about what’s happening to other people in other places. I care about what is being done in my name as an American citizen.

I could choose to be selectively informed. When I talk with my family and some acquaintances, I see what this could be like: to be very knowledgeable about network TV competition shows and local news scaremongering, but almost entirely clueless about the world at large. Many of these folks have favorite supplemental news sources that reflect their political beliefs — NPR or Rachel Maddow, Rush Limbaugh or Fox News. They share things on Facebook that make my jaw drop in amazement. Racist, stupid rants. Cluelessly idealistic things. They post something ignorant to Facebook, then go back to sharing clickbait quizzes. What type of oatmeal are you? I got Maple Walnut!

There are good and bad things about my current approach. I can be terrier-like in trying to make sure I’m informed. It’s not enough for me to see a headline about events in Ukraine. I start there, but then I talk with friends from Europe, I read Pravda online (both English and Russian versions), I study maps, I follow links from Wikipedia to learn more about Russian thinkers and philosophers, I read passionate essays from both pro-Russian and anti-Russian thinkers, I dig deeply into Russian nationalist writing that allegedly inspires Putin, I read summaries of Russian history to refresh my memory of books I’ve read in the past. I look through photo galleries and watch YouTube videos from Ukraine, Crimea, Georgia, and Chechnya. I think, talk, and write until I’m pretty sure I have a reasonable opinion. I can usually put a topic aside then. I can be content keeping up with the news and I don’t need to go digging again.

But sometimes, when the topic is something closer to home, I have a terrible internal struggle. There is a radical revolutionary inside of me. She wants to protest, riot, overthrow! However, she’s surrounded by the rest of me: introverted, shy, mobility-impaired, middle-aged, suburban. My husband and my SL partner add to the voices of reason, reminding me that I’m not much use in a march when I can’t walk a mile without pain. I might want to volunteer to organize protests, but when push came to shove, I’d collapse into guilty shyness. True and true. I have a revolutionary spirit. In another life, I’d be waving a flag atop the barricades. In this life, I use an app on my smartphone to turn up the furnace because I’m a tad chilly. I’m cozy and complacent on the outside, much to the endless disgust of inner me.

I thought about this when I read the essay Orwell’s World from the current issue of Intelligent Life magazine. It inspired me to reread Huxley’s Brave New World; I don’t think I can stomach 1984 again.

“We thought, after the year 1984,(interest in the novel 1984 and Orwell) would flatten out and disappear,” Bill Hamilton says, “and it would all look a bit old-fashioned. After the Wall came down, we thought even more so, he’d look like a creature of history.”

The vision of the future Aldous Huxley had conjured up in “Brave New World”, of a society rendered passive by a surplus of comforts and distraction, seemed more prescient. In 1985, the cultural critic Neil Postman argued in “Amusing Ourselves to Death” that Orwell feared that what we hate would ruin us while Huxley feared that what we love would ruin us. In 2002 J.G. Ballard, reviewing a biography of Huxley, said that “Brave New World” was “a far shrewder guess at the likely shape of a future tyranny than Orwell’s vision of Stalinist terror…‘1984’ has never really arrived, but ‘Brave New World’ is around us everywhere.” …

THE OPPOSITE TURNED out to be the case. As Bill Hamilton says, “It all came roaring back with a vengeance.” At the Q&A with the cast of “1984”, I asked the actors what they had researched in terms of everyday life in 2014 to help them understand the world of the play. One answer was Edward Snowden on YouTube showing how the National Security Agency (NSA) snoops on ordinary Americans, another was news footage from the pro-democracy demonstrations in Hong Kong, and a third—from the actress playing Julia…—was that the most useful research for her had been living in New York in the wake of 9/11. It wasn’t the horror of the two planes going into the twin towers: it was the fear and paranoia that followed.

Personally, I think we live in a blend of the two. We are observed, manipulated and controlled, but we choose to sate ourselves with bread and circuses. It isn’t selective artificial breeding and childhood Pavlovian training that condition us to spend our time on Dancing With the Stars and Call of Duty, or obsessing over the perfect local organic kale or posting photos to Yelp of our Fiery Doritos Locos Taco Supreme. There are so many ways to distract ourselves. (I would also argue that we use those “trivial entertainments” to build identity, socialize, and connect. They are not meaningless. However, they are choices we make in how to spend our limited time.)

I’m saved from a spiral of despair by a few things. I’m an optimist and I find small pleasures and reassurances daily. I read enough to know that many things are getting better. Quality of life has improved for billions of people during my years on this planet, despite inequality and violence. Segments of our environment are much cleaner and species have been saved. It’s a great luxury to fight for less sexist video games rather than fighting for the right to vote, which was granted to American women after my grandmothers were born.

Perspective is easy to lose and I think that’s one of the risks that comes with having unimaginable quantities of information at our fingertips. If I’ve been wallowing in the horrors of ISIS and the CIA and NSA and other assorted acronyms for a while, I can find some positive news for balance. It doesn’t diminish my outrage but it helps me see the bigger picture again. When my blood comes down from a roiling boil to a simmer, I rationally consider if there is something I can do about the issues troubling me the most. Writing letters or essays, signing petitions, donating money/items/time, or making changes in my own lifestyle — there is often an action I can take, even if it is small.

And sometimes, yes, I take a break. I don’t wake up to BBC World News on the television while skimming the headlines on several major newspaper sites. I read comics and look at pretty pictures instead.  That’s life, too.

—–

A side note: The image at the top of this post was one I took last night after reading the useful trio of Getting more out of Flickr articles by Caitlin Tobias. It inspired me to set up another account there for Second Life snaps, which then inspired me to stop being lazy about learning how to use the built-in photo tools. I don’t do any post-processing on my images beyond cropping, because I want to provide a realistic view of what you can see inside the virtual world, but I do tweak a lot of settings in the viewer.

 
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Posted by on December 12, 2014 in Side Topics

 

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Online and offline worlds collided and everyone survived!

As I said more eloquently in an update to yesterday’s post, I suck at interpersonal communication. I needed to be pushed to go outside my comfort zone and take a risk, and I did.

The best news: Jakob will be ok! He had surgery to remove a benign brain tumor this morning and will be in Intensive Care overnight, but his doctor says that he is recovering well and should be fine.

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I found Jakob’s sister on two social media sites and sent her identical notes in broken German in both places. To my overwhelming relief, she responded within an hour. Jakob had asked her to contact me yesterday! She was glad that I found her, she gave me the information about him, and she said that she’d like to stay in touch. She was very sweet and welcoming. I wonder what conversations she and her brother had in his hospital room.

Jakob’s sister and I are now connected on Facebook. His two carefully separated worlds have smashed together and as near as I can tell, the planet is still spinning as expected.

Time will tell if Jakob can recover most or all of his communication skills, but I’m optimistic. It seems he’s through the worst of the danger now and I think a gif dance party is in order. Read the rest of this entry »

 
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Posted by on December 5, 2014 in Relationships

 

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Tragedy, helplessness, and the stupid stigma of online relationships

[I updated this post on 5 December; more news at the bottom of the text]

This is a long, deeply personal post about a tragic twist in an online relationship. You might have read part of this story on another blog (many thanks to the friend who let me express myself when I needed release). Since this blog is not really anonymous and I’m writing about other people too, I’ll gloss over some details here.

I’m sharing this for a mix of reasons. First, to talk about some of the issues unique to online relationships, which are interesting on an intellectual and practical level.  Also, to ponder ways that others could avoid similar problems. And finally, because I’m heartbroken and need to talk; I don’t want to overwhelm my husband’s listening capacity and some of my other friends are narcissistic assholes who can’t hear, “my arm was cut off,” without immediately launching into a melodramatic 30-minute monologue about a paper cut they once had.

My dear friend is gravely ill, in the hospital in Germany, and there are so many unknowns that I could scream.

— The Relationship —

My Second Life partner Jakob and I have been close for two years now.  He’s a night owl in Germany, I’m a morning person in the US, so our schedules overlap strangely well. I sip coffee and chat with him during his lunch break, then we spend an hour or two together before he tumbles into bed for the night. Other than my husband, he’s my closest friend. We watched every Formula 1 race and some World Cup games together, our physical TVs tuned to the events while our avatars sat together and chatted in our home in SL.

wc_semi_2014

Unlike many SL relationships, we chose to connect beyond the virtual world. We Skype weekly so I can practice my German. We sent Christmas presents to each other and we’re connected with our real identities on Facebook. It was very exciting to plan my trip to Europe next spring: two and a half weeks of sightseeing with my husband, then two weeks of visiting Jakob face-to-face.

This has been a transformational friendship for me. Jakob met me (in the body of my alt) at a time when I was hurting from a friendship that ended badly, stressed with my academic work, and aching with health problems. I had separated my personality into two avatars on SL: my alt in the photo above that I used for escape, who was cute and sweet and carefree; and Kay, serious and academic and cold. Jakob met my alt but when I eventually “introduced” him to Kay, he broke through the walls I had built up there, too. He helped me integrate the two sides of my personality again. He encouraged me to keep pushing for medical answers, which led to my diagnosis of hip dysplasia and an early hip joint replacement that has given me back a lot of mobility. He helped me focus on peace and simplicity, avoiding drama and judgmental people. The changes that have come from this relationship have made my home life happier, improved my health, and focused my mind, which usually bounces around like a Super Ball.

Jakob is no more social than I am. I’m reluctant to write personal things about his background because that is his story, not mine. It is enough to say that he experienced deep grief a few years ago, entered SL because of the graphics and stayed because it was possible to interact with less stress or effort than offline. He never talked much about his life; he’d tell me that it was boring, he already knew about himself. However, we talked about everything from deeply intellectual topics to utterly silly, goofy jokes. We’re not children. I’m in my mid-40s and he’s older, and we developed a deep and meaningful bond.

— The Illness —

In early November, I noticed tiny changes in Jakob’s online behavior. He was always meticulous about correcting typos even if they were very easy to understand. Now, a mistake went unnoticed here and there. His impressive Germanic punctuality slipped: he was often a few minutes late and he fell asleep and missed our evening chat a couple times. We blamed it on the change from Daylight Savings Time. In hindsight and with automatic chat logs, I can see that he started becoming less expressive by the middle of the month. It was a small change — more non-verbal replies like “mmmmm” or “yessssss” or “hugs” — that I attributed to him being tired in the gloom of Autumn.

Then, two weeks ago, there was a huge change. That night as we chatted, his responses often contained gibberish or missing words, such as replying to “how are you?” with “I am tonight.”  More than 90% were non-verbal. I don’t say 90% as a guess. I say 90% because I’m a social scientist by training and I analyzed the chat logs. There was also a distressing change in his behavior, a sexual approach in a way that just wasn’t appropriate or normal for our relationship. I found it upsetting and stopped him. He apologized. He never apologizes. I told him I was worried about his lack of communication. When he signed off, things were awkward and confused between us.

A few things flashed through my mind. Was this someone else using his account? No… even his non-verbal replies were his distinctive expressions. Was he being a jackass? No. I’ve seen him grumpy and we’ve had small fights, but this was different. I went to the web and researched aphasia.

It didn’t take long for me to guess that he was experiencing expressive aphasia, difficulty speaking and writing though comprehension may be undamaged. The next morning, when his chat was again full of nonsense words, I asked Jakob directly if he thought he might have had a stroke. He said that he didn’t know. Over the next couple of days, there was some improvement in his ability to type but he continued to substitute meaningless words. We determined that he couldn’t see the mistakes: he thought his sentences were correct even when a word like “holyst” was used instead of “place”. I suggested that we use German instead, but he kept replying in broken English/gibberish.

I don’t know much about Jakob’s work, but at this point, I realized that I was probably the only person having extended conversations with him and noticing the problem. I told him I was concerned. By Saturday, as his ability to express himself improved a bit but his mistakes lingered, I begged him to see a doctor. He said he would go the following week. Though I was deeply concerned, spending sleepless nights worrying about him, I knew one reassuring thing: Monday was his birthday. He would see his family for a meal. If there was something wrong, surely they would push or take him for medical attention.

Or maybe not.

The day after his birthday, I got a morning email from him. “I am problame … riding on idoty … hopefily it mogdithy … sigh … so many problems .”  He had some computer problems the week before, but it was unclear if he was talking about that or health problems or whatever. He didn’t come online.  That evening he emailed that, “I will go to slape today” and he didn’t come online.

The next morning: “Moment to plill problem … I go to publick again today … will you problem when I am better.” Later he explained that he was now in the hospital and could not talk much: “.. i am in krankenkaus werde behandelt. … kann nicht viel reden. .. miss you a litt … send you more when i feel better…”

That was 8 days ago. Since then, I have gotten one or two emails a day, 5-15 words each, probably sent from his cell phone.

  • 7 days ago: ” nothing better … will stard more”
  • 6 days ago: ” will get coperaty the monday  … then  see. .. soo difficult  to  write  … sigh”
  • 5 days ago: “… waiting  the  weekend”
  • 4 days ago:  “… I slept  well … I hope  you too  … they  will  controll  me  tomorrow how  to  care  … will be  nice to  feel  better  with  you  again talking”
  • 3 days ago: “… I had check  … will  see  what  is  reason “
  • 2 days ago: “Es ist nicht einfach für mich zu reden … morgen erfahre ich wahrscheinlich was zu reparieren ist und wie und wo. Ich freue mich immer auf deine Schrift.” (roughly: It is not easy for me to talk. Tomorrow I find out what it takes to fix it and how and where. I always look forward to your writing.)  Then later, tragically, ” lch wünsche   es wird heilbar und kein vernichtender Krebs … es   ist  schlimm  … du  fehlst mir.”  (roughly again: I hope it is curable and not devastating cancer. It is bad. I miss you.)
  • Yesterday: “… i feel not  better … do not  know how  to  repair  it now  … i am  sad  … missing you so much ” and ” i am still in Krankenhaus and very sick  … very unhappy”

I have not heard from him in 24 hours.

Feel that? That’s my heart ripping into pieces like plastic stuck in a paper shredder.

— What Can I Do? —

Many times in the past week, I’ve had to stop, reread an email that I was writing to Jakob, and then edit it. He doesn’t need to hear about my heartbreak and anxiety. I’ve tried to keep the focus on his health and comfort.

But this is my space and I’m fucking frustrated. I want to know what is happening with my dear friend. I want to know which hospital he is in. I want to know what tests his doctors have done. I want to know his diagnosis and prognosis. I want to know if his family is visiting him every day. I want to know if they will pick up the Christmas package I mailed last week and take it to him in the hospital. I want to know if he will be himself again. I want to know if he is dying. I want to know anything.

I could try to contact his sister. She once viewed my profile on LinkedIn, so maybe Jakob told her about “a friend” and enough specifics that she could find me. He was surprised by it and a bit skeptical, so I’m sure he did not intentionally reveal that he had a relationship that started in a virtual world. I’ve thought long and hard about this. I know that Jakob didn’t think his family would understand, so I will not push myself into their lives at this difficult time. That would be selfish. If he wanted them to contact me, he could give them my email address. I need to let that be his choice.

I’ve considered another form of information fishing via Facebook. I could post to his FB wall asking “him” if he was ok. Maybe one of the cousins who are connected there would have information and would share it with me. It just feels wrong to do that.

Consider it karma, divine retribution, bad luck, or coincidence, but this particular group of circumstances is incredibly cruel. Jakob cannot express himself or tell me what is happening. Because it is a “secret” online friendship, I can’t contact his family out of respect for his wishes. His health collapsed right around his birthday and at the holiday season.

I’ve also considered going to Germany to be with him. Even before I looked at the prices for flights, my husband had done the research. About $1500 just for an economy ticket at this time of year, plus trains and a place to stay and food. Shit. We have some financial instability right now and that would be a very difficult amount for me. I asked Jakob directly, “Should I come? Would it help?” but I have not gotten a response. At first, I thought: Well, I’ll see him in May anyway, and if we spend those weeks at his home while he recuperates instead of relaxing in the mountains, that’s fine.  But now, I don’t know if it can wait that long. Let’s be frank: He’s been in the hospital for more than a week. They must have ruled out a stroke, hemorrhage, or clot in the early days with scans. I’m guessing that the test on Monday was a biopsy of a tumor they had found. (All speculation based on his notes above, but I think it’s a reasonable conjecture.) Sure, there are benign tumors or cancerous ones that can be slowed or temporarily removed, but nobody ever asks for a brain tumor for Christmas. Brain tumors are never good news.

I am reassured that he is in a country with a good medical system and that he has family nearby. Optimistically, I hope that he is getting excellent care and that people are treating him kindly.

I feel utterly powerless.

 — Learn From my Pain —

Many people who have been online for a while have already developed emergency systems, but let my experience be motivation if you haven’t. If people matter to you, they matter — it’s irrelevant whether you have physically touched or talked with voice or only communicated with text and pixels. Make sure you have a way for everyone you care about to be notified in case of emergency. Consider connecting trusted online and offline friends, through social media or other introductions.

It’s 2014. The stigma around online relationships is so tired and useless.

— Now What? — 

I don’t know. I’m sitting on the couch typing this, a snoring pit bull on my feet, with my husband telecommuting from a chair nearby. It sounds cozy and calm, but he went to the office this morning, then came back home because I was in tears when he left and he thought I might appreciate the company. I do.

I keep refreshing my Gmail inbox and I carry my phone with me constantly, the volume turned high. When Jakob first went into the hospital, I was able to relax and get some sleep. Now, with so much uncertainty and no replies to my notes… ARGH.

If you have some ideas, or advice, or hell, I’ll take some sympathy… leave a comment or contact me directly. Kay Jiersen in SL, or kayjiersen (at) gmail. I’m trying to do the right things but I’m neck-deep in the visceral emotions of the situation right now, so I know I don’t have the objective distance to think clearly.

come_home

Come home for Christmas, Jakob. Please.

— Updates — 

After writing this post, I had to concede that I’m not very good at interpersonal contact. I can study it, but I just don’t do it very well, myself. So, I listened to some of your advice. First I wrote to Jakob and told him that I would be writing to his sister if I didn’t hear from him by the next day. I asked him to please not be angry. I would appreciate that consideration if I were on the other side of the email.

Another night and morning went by with no note from Jakob. So, this morning, I broke through my own rules and contacted his sister. I found her on two social media sites and sent identical notes to both in broken German.

Becky and I talked briefly yesterday about all the little signs we look for in the digital world. For example, I can still see that Jakob’s phone is powered on and connected to a network, because he appears as “away” but not offline in Google Chat. A minute or so after I sent a Facebook note to his sister, I saw his FB account briefly online via mobile. Then, it was gone. I can speculate about that, but I really don’t know what happened.

 
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Posted by on December 4, 2014 in Relationships

 

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