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Tragedy, helplessness, and the stupid stigma of online relationships

04 Dec

[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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9 Comments

Posted by on December 4, 2014 in Relationships

 

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9 responses to “Tragedy, helplessness, and the stupid stigma of online relationships

  1. girlforgetful

    December 4, 2014 at 2:13 pm

    Have you tried calling hospitals in his area? I would reach out to his daughter, too, since it means so much to you, awkwardness be damned. You’re friends, after all.

     
    • Kay

      December 4, 2014 at 3:13 pm

      I haven’t called hospitals, both for language and privacy reasons. It’s one of the things I struggled with. Calling a hospital or trying to work through a network of friends of friends to find where he is might serve MY interests, but not his. If I knew where he was, what would I do with that information? (That said, I’ve visited the websites of all the hospitals in his area and I have narrowed down the possibilities to two.)

      The family near him consists of his sister and mother. If it was a younger person, a daughter, I might be more willing to make contact. From what Jakob has told me about their tech knowledge and his relationship with them… well, it would be a self-serving thing to do. At this difficult time in their lives, when Jakob doesn’t have the capacity to explain, I feel it would be selfish for me to throw some American friend they don’t know into the mix. My thought is that I want them focused on HIM, not on parts of his life they weren’t aware of.

       
      • girlforgetful

        December 4, 2014 at 4:31 pm

        Ahhh. Well, you know what’s best. I hope he gets in touch again soon.

         
  2. jennspoint

    December 4, 2014 at 2:22 pm

    I’m so sorry for your pain. Everyone’s situation is unique, but I have been in a long-distance relationship which was similar in some respects to the one you’ve described, and there was a point when my friend became very ill. I went through several weeks of frustration and mostly silence before I simply had to accept the fact that his life was very compartmentalized, I did not “fit” into this new segment of his life.

    In that case, my friend did recover physically, but our friendship was never really the same again. He had re-bonded with his family in a way that left him with less of a need for a long-distance friendship. I had to accept the time we had shared for what is was – a very special chapter in both of our lives. Will there be another chapter some day? Who knows? But that one had ended, and it was time for me to start writing a new one for myself. In a sense I just had to let go….this was MUCH easier said than done.

    My heart truly does go out to you during this time. *hugs*

     
    • Kay

      December 4, 2014 at 2:51 pm

      Thank you, and thanks for sharing your story. I can understand the changing relationship dynamics you experienced and while I’m sure it was agonizing at the time, it’s helpful to read about the learning and acceptance that came later.

       
  3. Becky

    December 4, 2014 at 3:17 pm

    Kay: If you want to talk, listen or just jibber jabber about something completely unrelated to take your mind off things, come online and we’ll talk. I’ll be here for a few hours. Just don’t stew alone in your own thoughts, it’s a bottomless whirlpool.

    If not, then I’m going to lay this down in this comment: Find a way to contact his family now and get over this stigma bullshit.

    You don’t have to mention the depths of your relationship online. You can simply tell them you are a concerned friend that saw his deterioration online and have questions about his health because you care about him. If you feel you have to take this post down to limit exposure, then do so. There is *nothing* shameful about reaching out and contacting a friend’s family to find out if they are ok. Stop worrying about what might be right in a normal context – this is not a normal context.

    Stop worrying about them wanting their privacy. When people and pets important to me have been gravely ill, I welcomed every show of support that was offered. If that’s not how you’d see it, then fine. But don’t assume they’d be offended by a friend that was concerned about him.

    Stop worrying that Jakob would have provided your contact details if he wanted you contacted. He clearly is having trouble communicating in writing so any email or number might have not connected anyway. Also, he may be thinking he doesn’t want to expose you to his family, because that seems to have been your agreement in the normal context. Again, this is not a normal context, so stop acting normally!

     
    • Kay

      December 4, 2014 at 3:37 pm

      *soft smiles* Thanks for the direct talk, Becky, and I might come online. But, I’ll answer here publicly, too. You make some excellent points, especially about this not being a normal situation. The way I see it, Jakob is like me in many ways, and when I was in the hospital for cancer surgery, I told my immediate family and two friends. That’s it. I’m too socially awkward to appreciate what most people see as comfort.

      There is no way I could explain anything about our relationship to his family anyway. I read German well but my speech and writing are on the level of a very stupid 3 year old. As the clock ticks with no response, however, I am starting to compose a note to his sister in my head. Something no more than, “Pardon the interruption, but I’m a friend of Jakob’s and we talk often. I know he is in the hospital and had some tests, but I haven’t heard from him since Wednesday morning and I am worried. Is he ok?”

      ARGH. That goes against so many of my personal preferences, I can’t even….

       
      • Kay

        December 4, 2014 at 3:50 pm

        *sigh* In fact, I just sent a note to Jakob and told him that if I don’t hear from him by tomorrow, I’ll write to his sister, and I hope it doesn’t make him angry. At least I feel better if he (possibly) has some notice first.

         

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