Tag Archives: cancer

Jakob died yesterday

Jakob had been back in the hospital for a couple weeks following another collapse, but he had been doing better and there was hope that he could move to a nursing home. So, I wasn’t prepared when I got a Facebook message from his sister yesterday. She told me that he had gotten much worse, unable to eat, speak, or recognize people. The hospital gave him morphine for pain and called her, saying they thought the end was near. He died in his sleep before she could get there.

I’ve been anticipating this day for the past year, since he was diagnosed with stage IV stomach cancer that had already metastasized to his brain, and I’m glad he’s at peace. That didn’t stop me from curling in a ball and wailing as my husband hugged me in silent comfort. I said a few words to his sister in broken German and I’ll write her a proper condolence note today. Poor woman… she is overwhelmed and dreads the tasks of burying her brother and cleaning out his home. I feel terrible that I just mailed Christmas cards to her house for her and for him.

Me? I’m blogging because I am too heartbroken to go to sleep. This is my eulogy for him.

Talking at Armenelos

Today, December 10th — as it’s just past midnight — is the 3rd anniversary of the day I met Jakob Aulder in Second Life and we were inseparable from that first encounter. He was a difficult man to get to know. His profile warned off questions about Real Life and for the first year whenever I asked one, he’d reply with, “Does it matter?” When I said, “No, but I’m curious,” he would insist that he wasn’t interesting to talk about, because he already knew about himself. Stubborn, that one.

Jakob never learned how to use most features of the SL viewer, he hated exploring unless I scouted places first and teleported him, and he had only two outfits in SL: a pirate costume and swim trunks. He loathed dress codes and thought they were ludicrous in a virtual world. So, every day, he was my pirate. I’d dress as a wench or captain now and then to make him laugh. No matter how often I changed clothes or switched between avatars, he was constant.

GSI - browsing

He was bull-headed and grumpy, but he was unconditionally loving, too. He helped me through some difficult times with his simple, no-nonsense coaching. We both altered our sleep schedules so we could chat twice a day, every day: on his lunch break and before he went to bed. We watched Formula 1 races together, sitting on a couch in SL while each watching television in our RL homes. He directed me through German exercises via Skype and I read him a couple of German books, chapter by chapter, in recorded MP3s. Though he was already very ill when we spent two weeks together in Bavaria this spring, and the visit was terribly hard, I’m grateful we got to have it.

Quiet morning

We joked about his awful taste in music, but he was an ardent supporter of a few talented independent female artists. He was mad about Vienna Teng and Rachel Sage, trying to see them perform whenever they appeared within driving distance of his home in Germany. He liked when I sang for him.

The man behind the avatar was 64 years old, but the nearly two decades between our ages rarely felt like a gap. He was an artist, a pacifist, and an atheist who appreciated Buddhist philosophy, though he will be buried in a Christian cemetery near his father. His last RL partner passed away a few years ago and he is survived by no children.

Armenelos ocean view

Jakob had a standard SL account, so I suppose it will sit there until the Lindens archive it for inactivity. How long does that take nowadays? A year or more? I suppose his sister will archive his Facebook account but I’m sure he didn’t leave her his SL login. So he will remain, offline in my Friends list, until the Lindens take him away forever. I’m sure I’ll cry again then, too.

Sweet dreams, Jakob. May you be in a place with great wine and Asian food, cheesy music, and a TV channel with round-the-clock soccer and auto racing. I hope you knew you were loved until the end, no matter what. Om shanti, shanti, shanti.


Posted by on December 10, 2015 in Relationships


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I’m still alive, really

I’ve been neglecting this blog terribly. The good news is that it’s because I’ve been busy. My broken leg is doing pretty well, so I’ve gone back to normal activities plus writing. I still read tech blogs and websites, but honestly, research for my novel has taken most of my free reading time. I share interesting finds on Twitter when I can, even if I don’t have time to add commentary or flesh out a post for the blog.

NaNoWriMo starts Sunday and I’m using the event as motivation to get my fingers moving on my novel. I’ve been doing lots of research, plot and character development, and thinking. It’s time for me to churn out some scenes and chapters, even if the first draft is awful and full of holes. Though I consider myself a NaNoWriMo participant, I’ll be out of town for a few days next week and doubt I’ll meet the 50,000 word count goal by the end of the month. I’ll try!

Things are not going well for Jakob. I found out from his sister that he’s not online because he has forgotten his passwords and how to use his devices. Cancer in the brain will do that, it seems. He has stopped chemotherapy and gone back to smoking, though the cancer has spread to his lungs, and his sister is making plans for his end-of-life care. I haven’t signed in to Second Life in weeks because it hurts to go to the land we shared there, but I’m starting to feel the urge to go online and purge it all. I’ve been worried or mourning for 11 months and it’s exhausting; I want a fresh start soon. Is that cold? It’s not that I don’t care about him — I do — but he hasn’t been able to communicate since August and there’s nothing I can do but send him snail mail now and then. I may try splitting my evenings between SL and the MMORPG I’ve been playing, to ease myself back in.


I’m still playing ArcheAge and my main avatar has reached the maximum level of 55. There is freedom in that: I don’t have to worry about dying anymore because I can’t lose XP. I have fair gear for someone who doesn’t plan to spend an arm and leg on an MMORPG; the gap between what I have now and the next level is crazy. It’s not rare for a single endgame gear piece to cost the equivalent of $100-200… and that’s with a 7-piece armor set, weapon, shield, bow, and instrument. In the most bizarre twist, I’m now an officer in my guild although I rarely talk or do anything with other guild members. Heh. They seem to be nice people, but I don’t want to spend my time doing virtual farming and fishing when I could be learning boss, dungeon, and PvP strategies.

Another post when I have something to contribute to general Internet discussion, which could be tomorrow, could be in a couple weeks. I’m still here. Have a fun Halloween!


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Robots, MMORPGs, and the usual suspects

Archeage Waiting

The MMORPG I play (sort-of, for now, that’s one of my alts above), ArcheAge, is offline for a couple days while they perform server balancing. If all goes well, on Saturday the game will return and I’ll log on to find my avatars moved to a new server with approximately double the population of the old one. This isn’t necessarily a good thing for a solo player like me. The NA/EU distributor of ArcheAge makes large, frequent errors when porting over the Korean content to us. It would be comical if those errors didn’t often cost players lots of time and/or money. Some players didn’t follow the instructions for packing up their homes and farms and may be stunned to find months of work erased because of their own mistakes, too. I signed on to watch the last minutes of my server’s life yesterday. A player pasted the lyrics to REM’s “It’s the End of the World as We Know It” into faction chat and it was an appropriate send-off. I’m waiting for the restart with hope but low expectations.

Robots! Two mining robots from different companies encounter each other on a rocky planet. Their skills complement each other. Can they work together?


On to a couple of personal updates. Jakob remains in the hospital but is conscious, mostly coherent, and able to swallow soft foods like custard. I wish his whole ordeal was over but I don’t wish for him to be gone. As for me, I’m hobbling quite well but still restricted to putting only 50% of normal weight on the leg I broke. Cross your fingers that the surgeon clears me for normal walking when I see him next week. Large sections of my shin remain numb and the scar where he inserted the metal plate is grody to the max, but except for some stiffness in my knee I feel ready to go. Besides that, physical therapy is tedious and I’d rather get back to yoga classes.

Have a good weekend, everyone.


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Personal stuff spread across worlds

Swimming through the galaxy

The photo above is one of my avatars in the MMORPG ArcheAge. She’s not a rocketeer; I had her swimming in the ocean at night and noticed that if I angled my camera below her, the effect was interesting. Things are kind of nutty in that game right now. The company that runs it is doing some server balancing, consolidating servers that don’t have many players, allowing players a one-time free transfer to a high population server, and opening a “Fresh Start” server, where everyone has to start from level one again. My avatars are all on a server that will merge with another next month. At the same time that people are figuring out what to do, there are three special events underway — a daily anniversary event, a festival event that can be done three times each day, and a daily dragon event that takes place Thursday-Sunday. To get the best rewards, you need to participate frequently (and some of them are definitely worth it). Add those into the daily raids and dungeons that many players run to get materials for endgame gear, plus farming/fishing/trade/piracy or whatever people do to earn ingame money, and it’s fairly chaotic. I’m hoping to get a cloak and weapon from two of the events, but I resent having to arrange my schedule around a game.

Things are more difficult in the real world, though. Jakob is still in the hospital. I need to write to his sister for an update. The last time I heard from her, he wasn’t able to eat or breathe on his own, but he was demanding to be allowed to go home anyway. Meanwhile, I just started physical therapy, overdoing it so badly on the first day that I can barely lift my leg. Whoops. My knee makes a terrible crunching and grinding noise when I bend and straighten it, probably a sign of the arthritis my surgeon told me to expect. I’ll confess to some feelings of disappointment during the past week. Now that I don’t have to use a wheelchair all the time, I can get in and out of the house by myself, I can drive, and I can take my dog for short, slow walks. Woo! But there are so many things I still can’t do because “walking” requires both of my hands. I still need to use my wheelchair for cooking, for example, because I can’t carry a pot two steps from the stove to the sink if I’m standing. It’s summer and I’d like to go to the beach or go kayaking; those are still impossible while I need to use a walker. Today I simply want to stop at a store to pick up three items, but I have no way to carry them. I’m trying to be upbeat and keep doing more of what I can, even as the little frustrations nip at my ankles.

So, back to the virtual world, where I can run, dance, fly, walk, swim, and ride. I rarely sign on to Second Life, but this week I loaned part of my land to one of my husband’s friends for the Twisted hunt that starts next month. (Have you ever done the Twisted hunts? They’re diabolical.)  It made me think about the future. I own a big, quiet parcel of mainland space in SL. Jakob used to pay for half of it, but he stopped when he got sick. I can’t justify the monthly tier payment for such a big place, no matter how much I like it. I’ll need to get rid of part of it or come up with a money-making use for the space. It’s unfortunate, because a lot of the mainland is empty — including large areas near my parcel — and I try to keep my land neat and without ban lines. Jakob gets upset when I talk about getting rid of some land, so I’m in a very awkward limbo: I don’t want to upset him by downsizing, but the alternative is that I wait like a vulture for him to be gone.

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Posted by on August 26, 2015 in Gaming, Relationships, Side Topics


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Roundup: Anomaly, al-Asaad, Ashley Madison, Project Sansar, and a personal update

I have a bunch of small commentaries floating around in my brain and one massive post underway, so I think it’s time for a roundup. First though, a film. Anomaly takes place in the 1960s and is hard to explain. There’s a near-miss comet, an astronaut, a scientist, and the women they love. The pace drags a bit at times, but it’s very well made for a Kickstarter-financed independent project and it’s also a selection in the Sploid Short Film Festival.


Khaled al-Asaad

If you know the names of any archaeologists, I suggest that al-Asaad should top the list above grave robbers like Indiana Jones and Howard Carter (no matter how much we enjoy what they gave us, both fictional and real). In the American educational system, archaeology is a subset of anthropology; my university anthro department had an annual dig in the Middle East, a number of projects in the US, and a staff that was 40% archaeologists. I can understand the dedication it must take to work for a lifetime on discovering and protecting our shared cultural heritage. I can’t begin to fathom the resolve, courage, and selflessness Dr. al-Asaad showed in refusing to reveal the location of artifacts to criminal savages.

Ashley Madison hack

Is anyone else feeling ambivalent about this? I’ve seen vicious comment threads on articles about the hack and there certainly isn’t a consensus of opinion. Personally, I think it’s awful that private information is being revealed by the hackers. Infidelity can be devastating, but isn’t that an issue for the people involved and not the whole Internet? Ashley Madison is vile for a number of reasons, yet I can’t fault them for making money off an existing market; if you spent time on any Internet dating sites — as I did off and on in the late ’90s and early ’00s — you know that married people looking for a fling on the side can be found anywhere. AM grouped them together, tossed in some fake profiles to make the site more appealing, and made as much cash as possible off of it. I hope the company is sued into oblivion for their lax security and for the lie about completely deleting users who paid for that service, which allegedly inspired the hackers.

But on the other hand, the data-loving nerd in me is hungry for the details coming out about how many idiots used their work and government email addresses to register on the site, and sure, part of me wants to pump my fist when yet another “voice of morality” is revealed to be lying, cheating scum.  When private celebrity photos were leaked, I chose to look away. I won’t ignore the news stories that come out of this hack, but I won’t be combing the data for the names of friends, relatives, or colleagues, as I know some people are doing. That’s not my business. Some tips for anyone it may benefit: if you’re doing something on the Internet that you don’t want revealed, for heaven’s sake, use a throwaway email address! Buy a reloadable Visa gift card at a drug store if a credit card is required, and register with a fake name, address, and phone number. Use Tor or a heavily secured browser, lock your smartphone or get a burner phone, and don’t forget to turn off automatic backups. And, maybe you shouldn’t trust a company with a business model based on lying.

Linden Lab and Project Sansar

Someone sent me a note asking my opinion on Project Sansar and I really don’t have much to offer. I haven’t written much about Second Life or the next Linden Lab project in months. With my vacation and then accident, plus Jakob’s illness, I simply haven’t been spending much time in SL. My enthusiasm is currently ebbing, but I’ve had an SL avatar for 10 years now and know that cycles of excitement and boredom are normal for me. I’m sure the next time I go back in-world and explore, I’ll be struck by the creativity and beauty again. That said, there are SL bloggers who are covering the topic to death and back. I won’t be one of the early invitees to try Sansar as I’m neither a creator nor have I sought out a relationship with the Lindens, but I’ll be excited to see what’s there once I can have a look.

Personal stuff

Jakob is conscious and talking after a blood sugar crisis sent him to the hospital over a week ago. However, the doctor says that cancer is now active and growing in his stomach, brain, and liver. He is fighting pneumonia and cannot swallow solid food yet. Since Jakob doesn’t know or acknowledge that he still has cancer, he is demanding to go home (no way) and making life hell for his sister, the only person who visits or helps him. This is something I know well from the two weeks I spent with him in May: his illness has stripped away most of his kindness and intellect, leaving a selfish, arrogant, paranoid man. Those qualities were always part of him but now they are prominent. Even though this is not his fault, it’s a huge challenge to sustain empathy when he’s being an asshole. I’ll admit that I’m relieved he isn’t well enough to read or write yet, but I feel for his sister. Her latest text to me was anguished both from concern about his health and hurt from his behavior toward her. It’s possible to care about him and also want to tell him to get stuffed.

As for me, I took my dog for a short walk today! I’ve been cleared to put 25% of normal weight on the leg that had a tibial plateau fracture, which means that I wear a thigh-to-ankle hinged brace and I lean heavily on my walker whenever I step on that side. It’s slow and very tiring, but I know I need to rebuild my stamina. Of course, my wheelchair is still a necessary tool for longer travels or when I need to use my hands. I start physical therapy next week.


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Startup culture: everything old is new again

I might have additional posts inspired by the New York Times Magazine article “Silicon Valley’s Youth Problem”, but here’s the first. The article is a lengthy piece and not very skimmable, but you might want to take the time to read it.

Isn’t it a hoot when young people think they’re the first who ever had a thought or experience, in the entire history of humanity? I don’t want to bash author Yiren Lu, because she seems like a thoughtful and intelligent person, but similar articles could have been found in WIRED or Fast Company in the 1990s when I was her age. Back in those days, younger people worked on the whiz-bang front end applications — we called it the World Wide Web — while the older engineers focused on infrastructure, networking, and hardware at more established companies. Twenty years ago the exciting place to be was in website development. Now it’s apps. Either way, that’s where the excitement and opportunity is likely to be for younger, less experienced techies.

Side note: Couldn’t the artist have included a female figure in any of the four illustrations accompanying the piece? It’s that sort of thing that subconsciously indicates women are not part of tech culture. It’s no surprise that many of the comments assumed the author was male despite her photo appearing at the end of the article.

My first job in the Internet industry began 20 years ago this month. It was a startup. I interviewed for an administrative position, heard the partners talking about the need for a production manager, taught myself HTML that night, and went on to take the better job instead. It was a bold and stupid move but so things were in the early days of the Web. After a year and a half, I jumped to a job at Huge Internet Corporation, which later acquired the startup anyway. I’ve done contract work for other startups through the years.

Startups can be exciting, especially if they’re lavishly funded. When they’re not? Well, I remember rushing my boss’s personal check to the bank to cover payroll for the week, more than once. I remember months of fighting to get payment I was owed. At one job, I was always first to the office in the morning, which made the day our power was cut off even more exciting. Being young and at a startup is like tightrope walking without a net. There is an adrenaline rush and sometimes the risk can bring great reward, but that wasn’t my experience. In the first couple years I held three jobs simultaneously to pay my rent: a day job at a tech company, retail sales on evenings and weekends, and freelancing in between.

For me, it was much more fun to be at a young company: Huge Internet Corporation in the early days. We still had startup culture, enthusiasm galore, and a sense that we were doing something new, revolutionary, and important. Because the company had existed for a while, however, there wasn’t as much risk and there was better infrastructure. I worked ridiculous hours and there was plenty of grumbling and stress, but my first few year there were the best work period of my life so far. And yes, we had Nerf guns then too, and we shot each other as we dodged between the cubicles. We pranked each other mercilessly. We had Quake tournaments after hours. Most of us were young and single; our social lives tended to mesh with our work lives. Alcohol played a role in that culture, sometimes in the office or at informal parties in the parking lot. We had decent salaries and stock options; a good day on Wall Street could create waves of 28 year old millionaires and a bad day could bring tears.

Ms. Lu might not realize this yet, but companies age too. The culture changes as layers of management and oversight come in and as a maturing workforce changes their priorities to include on-site daycare, parental leave, and better retirement savings plans. Public companies have more paperwork; some of the blame for my burn out at Huge Internet Company can be dumped at the feet of Sarbanes-Oxley. The mandatory documentation, diversity committee review of new hires, accessibility review of every project, and on and on… it adds up, even when the intent is to change things for the better. Throw in some bad reviews from the tech press — oh how we used to fear Walt Mossberg! — and product management starts to get gun shy. Progress slows. Innovation is stifled.

Internet companies are still figuring out viable maturity curves. Some settle into their strengths and stop trying to compete with nimble startups. Some reorganize to make room for established business and creativity, as Google seems to be doing with its recent creation of parent company Alphabet, Inc. Some use size to keep their position while building side products in an attempt to future-proof the business (Amazon, Facebook). Some die. In the case of Huge Internet Corporation, management made some bad decisions, our business model shifted too slowly, and our core technology was outdated by the time it was released. The company still exists but in very different form.

However, when I look though my LinkedIn contacts to see where my former HIC colleagues are working today, I see quite an assortment, not only the “old guard” trying to trudge through the last decades of their careers at stable, long-lived companies. Those I was closest to are between the ages of 40 and 55 now. Many of them have C-level or Vice President titles at startups or smaller companies, or they are VPs or Directors at larger ones. A few started their own companies or became consultants. Others bailed out of the industry altogether to pursue new passions, from nursing to documentary film making to landscape architecture. They scattered across the country and a surprising cluster of them ended up in London. Generalizing about the whole group, just as generalizing about the younger wave of tech workers, misses all the interesting paths that don’t fit the desired narrative.


A short personal note. Some of you who have been reading this blog for a while know about my dear friend Jakob and I wanted to pass along an update. He and I haven’t been spending much time together since I broke my leg — neither of us has much to say, as we’re both housebound and unwell — but we still have a short online visit every day. Lately he’s been active and optimistic, cleaning his house and planning an October trip with his sister.

Unfortunately, he’s now back in the hospital. He had chemotherapy (he has stage IV stomach cancer) last Thursday and was groggy in the days that followed. By Sunday he wasn’t online. Yesterday his sister gave me the news that he was admitted to the hospital with a blood sugar level of 1300. Jakob is an insulin-dependent type 1 diabetic and when he is weak and confused from chemo, he forgets to do blood sugar checks. Since high or low blood sugar make him even more confused, that begins a spiral that he can’t control. I saw this a couple times when we took a vacation together in May. I’m translating from messages his sister sends me in German from her smartphone, but from what I can patch together, he’s reliant on machines right now. He didn’t recognize her and she says his eyes didn’t focus. Meanwhile, she says that his cancer is still spreading. The doctors are not offering her much hope at this point.

It drives me crazy that Jakob doesn’t understand the situation with his illness, and because of the language gap it is still unclear whether his doctors are actively withholding the information or if he’s refusing to hear it. He assures me that his cancer is gone and that the chemo will keep it that way. Of course that’s not true; I knew in May that another tumor had been found in his brain and that the therapy is destroying his liver and other organs. He’s made amazing recoveries before though, so I’m not rushing to say the end is near this time. We shall see.


Posted by on August 14, 2015 in Culture, Relationships


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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.


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.


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



Away for a few weeks

Kay avatar standing in a virtual airport, holding a suitcase and wearing sunglasses

This will probably be my last post until June. I’ve been planning one more big meaty post, but the pieces aren’t coming together. It’ll give me something to think about on planes, trains, and occasionally in automobiles.

Jakob continues to drift from ok to very bad and back again. We had a good conversation on Thursday, a lighter version of the intense talks we used to have, covering topics from immigration and refugees to train engineer strikes and the labor movement in 20th century America. But it was just an hour of having him back: he had trouble forming sentences yesterday morning and has missed two scheduled chats with me since. His phone is still home but he could be in the hospital again.  All I can do is wait for news. (Update: as of Saturday afternoon, he is definitely in the hospital.)

In his case, language ability is the canary in the coal mine: when something is out of balance, he loses vocabulary and responds to everything with only a few words and phrases, like a poorly programmed bot. I’m guessing this is because of the tumor he had removed from the language area of his brain. It’s hard to gauge how impaired his comprehension is at those times.Trying to coax some thought and words out of him yesterday, I asked about the weather. “It is nice,” he responded, but then he followed that with, “fire is grey.”  “Fire?” (no coherent response)  “Auf Deutsch is ok, dear.  ‘Fire is grey’ macht kein Sinn.”  “:))))”  … sigh….

After an argument earlier in the week, he sent me links to a doctor in the town where we’ll be staying and the closest hospital. He’ll be able to have chemo there instead of making the long trip back home. He also assured me that his sister knows about the trip. I don’t know her well, but if she felt strongly that he shouldn’t go, I think she’d tell me. I’m stressed with a lot of what-ifs, especially since I’ll have less contact with Jakob during the first half of my trip. I’ll be thousands of miles closer, but since he doesn’t like to use email or other chat programs and I won’t have a device for running SL, we won’t communicate much and I won’t have any sense of how he’s doing.

My husband says that our pit bull and I share a tendency toward obsession and I’ll concur. Neither of us is the most committed of obsessives — we’re both too lazy for that — but “Let It Go” is not our theme song. In this time of stress, I’ll try to take comfort from another group of philosophers:

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Posted by on April 25, 2015 in 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.


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


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