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Category Archives: Relationships

My hardest online to RL transition

I’ve been meeting people in the physical world that I first encountered online since 1989, when some of my closest friends came out of a random topic BBS at my university. So, I’m not new to it and I assume that few of you are, either. We know the basics of managing expectations, nailing down make-or-break details, keeping safety in mind, etc. Every time I meet someone new in this way, I’m used to the short time of awkwardness as physical and online selves blend to form a new image of the other person.

Meeting Jakob was my most difficult transition so far. (For anyone new, Jakob has been my closest companion in the virtual world Second Life for more than two years. Six months ago he was diagnosed with stomach cancer that metastasized to his brain. He has had surgery, radiation, and chemotherapy since. This trip was planned long before his illness was detected.) I was certainly not at my best when we were together because I was distraught and stressed; it wouldn’t be fair if I said critical things about him without saying that I was whiny, petulant, angry, evasive, and temperamental. When I met him, I had just finished a 2.5 week trip with my husband that was tiring but fun, reinforcing what an excellent partnership we have and how well we work together. I really wanted to go home. Jakob had just gotten out of the hospital and I felt like I was fulfilling an obligation to assist him on the trip; it was not for my enjoyment in any way and I dreaded it. I was terribly afraid that he would have a health crisis and I had some simmering resentment because he refused to change plans to have a trip with less effort — closer to his doctors and in a hotel instead of a rental apartment, for example.

It snowed on our trip, too.

It snowed on our trip, too.

We met at a train station near Jakob’s home and I was already stressed: he hadn’t replied to my emails asking where to meet, so I hauled my suitcase around and tried to make hesitant eye contact with any man who vaguely resembled the pre-illness photo I had seen. I sent worried texts. Finally, I spotted a little old man wearing a soft colorful beanie like I had sent Jakob when he began chemo. Oh, that was him. I was shocked. The illness and treatment have made him look decades older than he is. (The next week, he showed me a gallery of photographs from the last few years and the difference in his appearance is so terribly sad.) This little man was shaky and confused, wearing clothing several sizes too large, and he didn’t recognize me at first, either.

Our bad start continued to get worse. Chemo left Jakob with a lot of confusion, which increases when he’s tired and when his blood sugar is too high or low. He lost the ticket from the parking garage, causing a minor crisis until, unsurprisingly, it was located in the pocket of his pants. He put the GPS into demo mode and didn’t understand me — I was driving — when I protested that the screen didn’t match where we really were, I didn’t know where to turn, and I couldn’t figure out a German GPS system at 90 mph on the autobahn. Plus it was raining. And there was lots of construction. A drive that was expected to take four hours took more than six, and when we arrived, it was too late to go to a restaurant or market. I went into the bathroom, shut the door, and wept with exhaustion and stress.

By the second day, my reserves of patience and compassion were gone. So was the worldly and opinionated Jakob I had known, replaced by a frequently confused, babbling, stubborn man who criticized me when I wanted to read, use the Internet, or turn on the television. He used to hate to talk about himself. Now that was all that he did. On one hand it was nice; I learned things about him that I had never known. However, it was the sort of self-involvement that hijacked any conversation and in his confusion he told the same stories over and over. If I didn’t react with interest every time, he was annoyed. All of his choices were self-centered, as well. He might ask what I wanted, but he would immediately ignore it.

—–

Now…. I must pause here. If I was my normal self — not shocked, exhausted, and homesick — I would have adapted more quickly. I wasn’t. I just wanted to run away. I lost my appetite and by the third day, I clearly had a cold, too. I got very little sleep the next two nights because I couldn’t breathe or stop coughing. (Germany, wtf is up with the Apotheke? Extract of thyme won’t help much with a bad cold. I wanted some damned Robitussin. Jakob said it was because of universal insurance; things we expect over-the-counter in the US require a doctor’s visit and a prescription in Germany. I don’t know if that’s true. However, when I could barely breathe and I discovered that the Apotheke had given me herbal remedies, I swore a lot. Oh, and btw, they didn’t do a damned thing. I was sick for the rest of my trip.)

Jakob and I eventually reached an equilibrium.I care about him; we have been close for two and a half years and I feel awful that he is suffering from this terrible illness and the even more destructive treatment. It is tragic. He repeatedly insisted that the surgery, radiation, and chemo had killed his cancer, and that he only needs a few more chemo sessions and then he will get stronger again. I smiled and nodded quietly each time. “Oh really? That’s good to hear.” Meanwhile, I knew from his sister that his hospital discharge paperwork said he had a new brain tumor and that his liver and spleen had been damaged by chemotherapy.

—–

Before we met in person, I knew Jakob was stubborn, sometimes argumentative and difficult. What I discovered was that if anyone tried to give him advice or say he shouldn’t do something because of his health, he would reject it immediately. Everyone was “just trying to control” him, and the hospital and nursing staff only wanted to keep treating him for the money. I bit my tongue a lot.

In many ways, the mental changes Jakob had from chemo turned him into my 98 year old grandmother. The repeated personal stories from the past, confusion with modern technology, minor paranoia, and not really listening to anyone else. They’re both greedy with food; for my grandmother that is from a lifetime of denying herself treats, for Jakob it was excitement that he could taste things again after a few weeks away from chemo. Once, he insisted that I tuck leftover sugar and coffee creamer into my purse when we left a cafe. He would get obsessed with something like a piece of lint on his shirt, ignoring everything around him. They both have crazy health theories, like when Jakob speculated that I caught a cold from drinking tap water. Is that so different from my grandmother’s insistence that when you hiccup, a drop of blood falls from your heart? (To where, I have no idea.)

I’m so unthinkingly polite that I automatically apologize to inanimate objects when I bump into them. I was aghast at some of Jakob’s rude behavior and I don’t know whether it was caused by his illness or not. (I’ve omitted specifics because I don’t want to paint a negative picture of him that could be the result of chemo fog, but I was offended and disgusted.) Jakob thought I was overreacting. I also discovered that he was a smoker; he only smoked once while we were together, but I would not have made plans to spend two weeks with someone who smokes. It’s not judgment — smoke what you want — but I can’t stand the smell and it wouldn’t be fair to either of us.

This wasn’t my vacation. We did get to do some sightseeing, but with me doing all the driving, guarding him from falls on uneven pavement, rushing to pay when he got confused (couldn’t recognize his bank card or paid the wrong amount), and struggling to understand things with my mediocre German because he couldn’t always help explain. Some days were better than others. Some were awful. I did his laundry and reminded him to bathe, did almost all of the cooking and cleaning and carrying, and tried, with mixed results, not to complain about it often.

—–

I was afraid of the responsibility of Jakob’s illness before the trip and that fear was justified. I was surprised to learn that he has had Type 1 diabetes for more than 20 years; something he never told me, so I had assumed his problems with blood sugar regulation were treatment-induced diabetes. Nope. He’s insulin dependent and it became my job to give him pancreas enzyme pills before meals and remind him to check his glucose level regularly. He refused to moderate his diet in any way, popping candies into his mouth like, well, candy, and drinking wine or beer with lunch and dinner every day. As a result, his levels were over 600 once (it took more than a day for him to recover from that), over 400 a few times, and often in the 250-350 range. If I dared to suggest that he change what he was eating, he’d go off on a rant. In the final week, he began having blood sugar crashes every night. I’d hear him get up and I’d join him at the dining room table, where his blood sugar would measure in at 40-60. He’d gobble some gummi candies and I’d get him to eat something more substantial, like yogurt or pudding, to round out the sugar spike. Once his numbers were normal, we could go back to sleep.

On the final Monday night of the trip, I woke to a crash and whimpering. Jakob was sitting in his open suitcase on the bedroom floor, wide-eyed and shaking. He didn’t respond when I called his name or waved my hand in front of his eyes. I ran to the kitchen, grabbed candy, and fed him until he was coherent enough for me to get him to the table. I handed him his blood sugar kit and he nodded, zipped it up, and carefully packed it away again. I had to make him eat more sweets before he could understand and operate his glucose meter, and his levels then were in the low 60s. If he had been alone, that crash could have been catastrophic.

Then there was the final night we were together. Jakob had already been awake with a sugar crash at midnight, and he woke with another one around 4:00am, but it was accompanied by severe abdominal pains. He ate all of the sweets that remained in the house but his blood glucose level would not rise, measuring repeatedly between 60 and 80. He started eating the only useful thing we had left, sugar cubes, but his level stayed low. For two hours he moaned in pain until he finally called the medical emergency number. The EMT examined him quickly and called an ambulance. We were at the hospital by 7:30. They gave him some painkillers, scanned his abdomen, and waited for a huge fax of information from his doctors, but ultimately his pain faded and they could not identify the cause.

—–

Some people are born caregivers; I am not. I’m not naturally compassionate and when I’m helping someone in a stressful situation, I tend to be cold, practical, and glum rather than warm and encouraging. At the end of the trip, I was relieved to go home. I had a physical sensation of anxiety releasing its grip the next day.

Jakob matters to me, and now that we are both separated by thousands of miles again, our emails and chats are affectionate and pleasant. He and his family are grateful that I helped him have a vacation, and he was so pleased to eat normal food and go for walks, things he hadn’t done in six months. Today he had chemotherapy again. It’s a new combination of chemicals and he’s hoping it won’t rob him of his renewed energy and sense of taste. I’m not optimistic, but I say, “I hope so too”, and “We’ll see”.

I don’t know what it would have been like to meet him in RL before he was sick. I could speculate, but there is no way to know, so that’s a dead end. He’d like me to visit again. I told him how expensive that is and the practical reasons why I can’t make any promises. I left out any emotional reasons.

He’s back to living alone in his apartment now, with his sister checking on him when she can. I’m haunted by the image from one morning on vacation when he woke before me and decided to be nice and make breakfast. When I got up, there were two heat-and-serve rolls sitting in the cold oven and Jakob was standing next to the stove, where a burner glowed bright red with nothing on it. He was too confused to understand that he had turned the wrong dials, and slightly upset when I gently pushed him out of the kitchen before he burned himself or set something on fire. I don’t want him deprived of his freedom if he can take care of himself, but I’ll be nervous between messages for the foreseeable future.

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Posted by on June 2, 2015 in Relationships

 

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I’m back home

street art on the Danube Canal, Vienna, of a person in antique diving helmet sucking up the water through a bendy straw

Art on the Danube Canal, Vienna

Hello again. I may not have an on-topic post for a while, since it’ll take a week or two to get caught up on technology news again. Heck, it’ll take a few days just to get through the recordings on my DVR. I’ve got a pile of anecdotes and rants I might share, blog-appropriate or not.

The last two weeks of my trip were spent with Jakob,or rather, the RL person behind the avatar, who is quite different. It’s hard to parse out the source of the differences: online vs. offline, vacation vs. everyday life, or that damned cancer. I’m very glad I was able to give him a break from chemotherapy and hospitals (almost; that’s a story for later). Jakob is very very sick. No good news on that front.

There is a lot more to write, but I need to process my thoughts and get through jet lag. It’s good to be back.

 
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Posted by on May 30, 2015 in Relationships, Side Topics

 

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A personal aside

I’m working on a more topical post about exposing things online, from whistleblowing to shaming to filming excessive force. That’s going to take a while, partially because I’m a bit overwhelmed by RL things. If you care to read some personal rambling, I’ll continue below the image. Otherwise, see you soon.

Second Life Kay avatar watching her AI pet wolf howl on a grassy hill

[Quick background for anyone new: My Second Life partner Jakob, who has been my closest companion other than my husband for the past two and a half years, has stage IV stomach cancer. His symptoms developed suddenly in November; he had surgery in December to remove a tumor that had metastasized to his brain, had whole brain radiation in January, and began palliative chemotherapy in February. Next month is a vacation that we began planning almost a year before he became sick: I’ll be traveling in Europe with my husband for 18 days and after that Jakob and I planned to rent a place in the Alps — a few hours away from his home — and explore from that base for two more weeks.]

Jakob was just in the hospital for a week because of his blood sugar scare (he seems to have developed treatment-induced diabetes from the chemo, along with anemia, hypercalcemia, and pneumonia). He has been rocketing from hypoglycemia up to critically high blood sugar levels. He returned home Friday morning, but I’ve received no messages since then and he hasn’t been online. I contacted his sister, who told me that he isn’t well. He continues to have problems and he fell this morning. He didn’t hurt himself, but he needs and will soon have daily in-home help. Update: I got a short email from him after I had written this but before publishing it, saying that he’ll be online tomorrow to watch the Bahrain Grand Prix with me. Fingers crossed.

I feel so bad for him. He had very little experience with illness and then his life changed suddenly and horribly. Once we saw how sick chemo was making him, I wanted to be more realistic and stay closer to his home for our vacation, but he refused to alter the plans. He told me he was looking forward to the trip and I know it was motivation for him to keep going. He was deeply in denial, too.

Here we are. I leave for Europe in nine days and am scheduled to pick him up in under a month. In his current state (his sister describes him as “listless and unmotivated”, almost unrecognizable to her), I wonder if he has reached the realization that the trip, as planned, is no longer possible. He needs daily help for everything from changing his IV to basic hygiene. I can’t do those things, especially not in a rental apartment in a small village, a four hour drive from his doctors. What a tragedy.

On a selfish note, I’m devastated. I’m losing my dear friend in bits and pieces. Some days he’s chatty and sweet, though he doesn’t have energy for long talks anymore. Some days he’s confused or just missing. I’m frustrated that on the trip with my husband, his first time in Europe, I’ll be fighting to stay present and not worried about Jakob or what comes next. I’m angry that Jakob has refused to make new plans (though I understand and empathize). Regardless of how I feel about it, I’ll make the best I can of the entire trip. I expect that my time with Jakob will be spent at his home. Maybe he will be well enough for short day trips. I meet him fewer than four weeks from now and I feel like I’m racing the clock.

Thanks for letting me vent.

 
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Posted by on April 18, 2015 in Health - Mental & Physical, Relationships

 

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Urban planning is much more fun in game form

Though Jakob gave me a pet wolf to keep me company when he’s unable to visit with me in Second Life, I didn’t open SL all weekend while he was in the hospital. The weather was gorgeous and I spent some time puttering in my yard or sprawled on the deck, enjoying the sunshine. I also needed a distraction rather than a reminder of Jakob’s illness.

Screenshot of street view from Cities: Skylines game

Enter Cities: Skylines, available on Steam. It’s how SimCities should have evolved but didn’t, and it’s an engrossing game. I found it frustrating at first while I learned the game mechanics — how to move the camera, how to build a bridge, how to place stops for a bus line — but it’s simple to enable mods for unlimited money and unlocked progression milestones and play less carefully while learning.

It’s exciting that there’s an active modder community, developing items from custom buildings to improved management panels for public transportation to color correction and different lighting models. One of the things I love about SL is the creativity of other residents and I’m a huge fan of user-created content. The company-created content is good, as well. While writing this post I discovered that both the CEO of Colossal Order and the Lead Game Designer are women. Woo-hoo!  That shouldn’t matter, but until it’s more common, I think my moment of celebration is reasonable.

 

Jakob remains in the hospital but his sister says he is stable again. This was a close call; he was too weak and confused after chemo to remember to check his blood sugar, which zoomed upward to critical levels. Living alone isn’t very safe. I have mixed feelings about our upcoming trip. On one hand, I’ll be with him, so I can get him care promptly. On the other hand, that’s a lot of responsibility, especially in a small mountain village in a country where I barely speak the language. Thanks to Google Maps I’ve located a hospital about twenty minutes from where we’ll be staying, and I can explain his illness in German if needed. Thinking ahead gives me a little more confidence.

 
 

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Emotional robots and all the feels

With Ex Machina opening (it’s on my list for the weekend Seriously?? Not in wide release?? WTF??), Slate published an article about emotional robots — or at least, the emulation of human emotion by artificial intelligence. It’s a good piece.

The human tendency to anthropomorphize means that we only need a tiny hint of emotion and interaction to perceive much more. Many of us see our vehicles as having distinct personalities, after all. I think interactivity and a touch of randomness make the most difference between us reacting to something as an object or as a creature.

In Second Life, animated wolf with limited AI watching other animated creatures in a vegetable garden

After I wrote about Second Life gacha recently, I bought a few Piccoli by D-Lab. There have been Christmas and gardening sets offered at The Arcade, but before I saw them in the video I embedded, I had no idea that they were animated.  They are, and they’re adorable.  I have a few pieces set up in the yard and the Piccoli creatures wander around, tending the garden, riding birds, visiting, chatting with moles, and turning on the water sprinkler. They’re absurdly cute and can be picked up and held, but they don’t interact with non-Piccoli people or things.

In the photo above, you can see my wolf greeting one of the Piccoli.  Wolfy is a pet from the Virtual Kennel Club. His appearance and animations are less detailed and smooth than the Piccoli, but he is designed to interact with people and things. The commands he can learn are sophisticated by SL standards: there is a standard set of commands, but behaviors can be chained, customized, and given priority if he receives praise for doing them.

Which creature provokes an emotional response: the twee and gorgeous Piccoli or the cruder but interactive Wolfy?  Wolfy, hands down. I’ll go into the yard to watch the Piccoli for a couple minutes, but when I sign on and find Wolfy carrying a different toy or he howls after I pet him, I’m touched. The Piccoli are predictable; I’m curious to see what Wolfy will be doing. The answer to that can be amusing. He greets other scripted objects, so I sometimes find him greeting a couch or lamp.

Wolfy was an Easter gift from Jakob, to keep me company since he can’t be online as much as before. It’s sweet but also heart-rending to have this wolf as a stand-in for my partner.

Last Thursday, Jakob wasn’t healthy enough for his biweekly palliative chemotherapy. He and I are connected on a family app that shares our phone GPS data with each other, so I know he went to the hospital for a few hours yesterday — when his treatment was rescheduled — and he returned home. I haven’t heard from him at all, though, and the app can’t locate him now (his phone might be off). He has missed two of our scheduled meeting times and hasn’t sent an email. This worry is hard to take. [Update: I exchanged notes with Jakob’s sister, who told me he was taken to the hospital by ambulance today. His blood sugar has been up and down like a roller coaster and he was incoherent. I won’t hear from him until he’s back home, but his sister is kind enough to give me news now and then.]

Health permitting, Jakob and I will have our vacation in five weeks and though we’ve had to alter some plans to make it possible, we’ll do our best. It’s a bit like Amsterdam in The Fault in Our Stars: it won’t be easy, it will probably be dangerous, but he really needs a chance to experience more than being sick in his apartment or the hospital. As the weeks zip by and his health remains so fragile, I’m increasingly nervous about taking him far from his doctors, but he insists it will be ok. Wish us luck.

 

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Ways we adapt to mix real and virtual

I can’t help thinking of this as I sit on my couch at home and simultaneously sit on one in Second Life, watching the Australian Grand Prix with Jakob.

Snapshot_293

That’s our virtual living room. It doesn’t make sense to try to stream the race in SL — our real televisions look much better and provide commentary in our respective native languages — but I pull the ESPN website live coverage into a “TV” above our fireplace. See the clocks over the loveseat? We have one for SL time, one for my time zone, and one for Jakob’s. The collage on the wall has photos we’ve taken offline, but there are some online photos on the fireplace mantel.

Since our virtual lives are extensions of our offline lives, blending the worlds is normal for us. There is no hard line between the two. Others make a sharp distinction between “fantasy” and “reality”; it’s exciting that we have spaces now where we can do that. That’s not my style at this point, though. Virtual life is more effortless and easier to control, with some added features and some removed, but it’s part of the overall thing I call my life.

Blending virtual and real was a gradual process for us. Something I’d love to study is the delicate negotiation that some people do when they meet anonymously online and then begin to disclose personal details. It took months for Jakob and I to share our real names and more precise locations. He was practical when I wondered about personal details, responding with, “Does it matter?” Often, once I thought about it, the answer was, no, not at all. He doesn’t like to talk about himself and he tells me it’s boring. I didn’t know his age until a couple years after we met, though my guess from his musical tastes and some dates in his stories wasn’t far off. It just didn’t matter.

I should interject at this point that when I started collecting data on SL profiles for a research project, I was surprised by how many of them had (what they claimed to be) first life personal details. Sometimes the details were small and still anonymous, a time zone or country and a sex. Often a sexual preference or gender identification was listed. The percentage that disclosed more details — city, marital status, age, profession, number of children, photos, and even name — was unexpected.

Jakob has wanted to find a project we could do together for a while, but it was a challenge to find something that fit our skill sets and time. Now, finally, we’re almost ready to open our little in-world art gallery. It mixes both worlds as well: I’m the interior designer and curator of the virtual gallery, but the art consists of his photographs from the physical world. I’ll confess, this is more important to both of us now that he is sick. You can be sure I’ll write more when it’s complete.

 
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Posted by on March 15, 2015 in Embodied Experience, Relationships

 

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The fog of memory in a digital age

Lately I’ve been working on a novel with a plot line based loosely on events in my life almost 20 years ago. My recollection of the story has one narrative and set of characters — some are still friends, some I’ve lost touch with, and some are gone. Memory is subjective and I’ve never claimed to have a great one. I remember useless trivia but forget people and things from my own life. However, even two decades ago, everyone in my story was active online. So, I wrote for a few weeks from my memories, then I went to the Internet.

Wow. What had been cloudy to me is slowly becoming clear and my reaction to this is complicated.

Through the mist

I thought the story had taken place over several years. It hadn’t. I had been struggling with the details of the timeline, yet there were some things I could verify, like when a movie was released or when a CD or book was available. I searched for those and started making corrections. I discovered that someone had already written part of the same story in an anthology. I read that and it confirmed the dates I had found. In the end, it turned out that the framework of the story had lasted 22 months, not 4-5 years.

Then, I opened some long-ignored backup folders and looked at dates on old, low rez photographs. Instead of clarity, this led to more confusion.  So many things that loom large in my memory overlapped in such a short period of time. It’s shocking to me now.  I went through month by month and made notes based on the evidence, rearranging the list of scenes that had taken a different shape in my mind.

This morning I did what I had been dreading: I read through a dozen logs of chats between a friend and I, saved from that period of 1996-97.  The almost random nature of the conversation hints at what I know was speedy banter between two adept typists who had developed their own way of communicating — vulgar and raw and full of cultural references. The logs paint a very unflattering picture of me. I was single, struggling with illness, juggling freelance gigs and trying to make ends meet in a very expensive area. But, I was also manipulative, insecure, deeply unhappy, immature, and narcissistic. I can see how my attempts to be the Cool Girl may have even encouraged some very dangerous behavior in my friend.

It’s going to take me some time to process what I rediscovered and in the end, I’m sure it’ll make for a better story. The “me” character doesn’t feel like me anymore, because she isn’t: she is a fictionalized version of me at a very different time in my life. It’s a lot easier to let go of my ego and let her be the flawed person she needs to be, growing a personality distinct from my own. On the other hand, I have to deal with the reality of who I was and wonder, now, who I am.

Assembling the timeline and reading those chat logs allowed me to piece together the facts again, so that I can step away from them and be sure my novel is a work of fiction. If I wasn’t writing, would it be better to just remember the softer, slower version of that time? For me, I think the answer is yes. Relationships that have become more meaningful with time stretched out lazily in my memory. I have happy remembrances of times between the chat logs but they are now punctuated by those harsh jabs of reality. When we can easily archive so much of our lives, and some people are actively recording every minute they can, maybe we need to consider what benefits we get from shifting memories.

 
 

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