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Tag Archives: health

Wednesday films: Chef, phlebotomist, and dubstep robots

Three short videos for your Wednesday enjoyment! The first is a cute musical film (wait for the drop).

 

Dubstep Dispute from Fluxel Media on Vimeo.

The next two are recently released robotic news videos. One is for a robot chef, or at least, an automated kitchen system that uses robotic arms. I don’t see it being practical, but the suspended robot arms are similar to something in a story I’m writing. The last video is for a robotic phlebotomist. I saw an article suggesting that this would be good for people with fear of needles. No, it would not be!  Dear heavens. I have a fainting response to needles and the slow process of holding my arm in place and then the machine putting in the line would be awful.

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Posted by on April 15, 2015 in In the News, Our Robot Overlords

 

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Retaining agency in serious illness

This post is off-topic for this blog, but it’s something I’m passionate about. Read or skip as you wish.

fuckcancer

Many of you reading this know that my dear SL partner, Jakob, has stomach cancer. It metastasized to his brain before it was detected and he’s gone through surgery, radiation treatment, and heavy doses of drugs. He’s out of the hospital now and feeling awful, but he’s alive and we’re so thankful for that. I’m grateful for every short conversation and I’m looking forward to seeing him in May. I’m trying to be supportive without shaping his narrative. If he’s exhausted, he’s exhausted. He doesn’t need to pretend otherwise.

My husband reminds me that I have a particularly good background for this situation. I was diagnosed with endometrial adenocarcinoma at age 40 and in the first year I devoured material on the subject of cancer: blogs, medical papers, ethnographies, philosophical essays, autobiographies, and research studies. I learned a lot and formed some strong opinions, later arguing at a conference that framing cancer treatment as a rite of passage (a theme I found in many pieces) did a disservice to the patient. I’m also vehemently opposed to using war metaphors, though they are hard to avoid, pushing patients to be cheerful, and the pinkification of November.

Recently I got into a Facebook exchange with an acquaintance of mine. She is in her early 20s, bright and shiny and enthusiastic, and she volunteers at a nearby cancer treatment center. I watched her posts for months without saying a word. “The patients who are still so cheerful in the face of this disease are my heroes!”  “How can I be grumpy when the patient I’m helping with chemo is smiling? What a heart!”  Finally, I wrote her a private message. I told her how much I appreciate her dedication to helping others and her optimism.  I asked though, how she felt about cancer patients who were crying or angry. Were they less noteworthy because they didn’t live up to her standard of behavior?  I suggested that she read Bright-Sided: How Positive Thinking Is Undermining Americaby Barbara Ehrenreich. Her response was unsubstantial, informing me that close relatives of hers have had cancer and… well, I don’t know what her point was, exactly, and I decided not to push.

I believe that telling someone to smile is an act of control and aggression. This has been recently debated around the topic of street harassment but it’s pervasive and vile in healthcare, too. I think it is a way of making patients compliant and less troublesome. Some people will be upbeat and optimistic throughout their treatment and beyond; I’m downright snarly sometimes but I usually kept my sense of humor and tried to be nice. Others will be angry, frustrated, depressed, hostile, or even melodramatic. They might not be as easy to understand or embrace yet I think it’s important that a person be allowed to retain his selfhood and personality, while still receiving treatment as complete and compassionate as that given to a sweet martyr. I hope that I never make Jakob feel that he has to act one way or another for my benefit.

Think of the glowing descriptions of patients with serious illness that you might have heard — the performances that win Academy Awards — and you probably think of words like brave, upbeat, cheerful, and strong. I can’t count the times I’ve heard the myth that patients with positive attitudes have better outcomes. In the research I reviewed, I found that attitude doesn’t seem to do a damn thing, but patients who feel some control over their health and decision-making do better than those who feel passive.

My adenocarcinoma would have been deadly as it spread, but I was lucky and it was caught early. I had very severe symptoms and even though I had to fight against ignorance and incompetence, I had a diagnosis within three months. In some things I was too passive but I’m proud that I stood up for myself in other areas. For example, I don’t handle needles well and after my surgery I was ordered to inject myself with the blood thinner Heparin, in my abdomen or thigh, twice every day for weeks. It was shockingly painful and left huge dark bruises on my legs. Before I left the hospital, I was so upset by the injections that I would burst into tears as soon as the nurse entered the room with the Heparin tray. So, I quickly decided, fuck that. I forced myself to get up and walk as much as I could. I did laps in the hospital, past the maternity ward that was cruelly on the same floor, and then walked slowly around my block at home with my husband hovering nearby as a spotter. It was hard and exhausting, but it was better than injections. The nurse assigned to me by my insurance company was horrified; my oncologist shrugged and said it was my choice. He’s a surly bastard sometimes but I like him. Honestly, I think the simple fact that I made a decision for myself and followed through was important to my recovery.

Jakob seems to be holding up ok, but I understand his feeling of helplessness. (I write knowing he might read this and that he encourages me to tell my own stories. I’m aiming for truth without a lot of his personal details.) He graciously credits me with deep understanding based on my own experiences, but I didn’t face anything like he is facing. I went through some similar emotional and mental struggles during times of uncertainty, but they were eventually resolved. Being castrated during my reproductive years — let’s not call it something more gentle, because it wasn’t — was very damaging to my body and mind, but it does not compare to the ravages of brain surgery and radiation.

Cancer is a particularly cruel illness because it is you. Cancer cells don’t come from outside the body, they are your cells, displacing their normal neighbors in their struggle to thrive and spread. Even if you have a well-integrated sense of mind and body, it’s hard not to fall into Cartesian dualism and see your body as a separate entity from your self. I’ve never been good at that integration and cancer made it worse: my body is this treacherous thing made of meat that lumbers about catching illnesses and needing mechanical repairs and looking lumpy under clothing while my mind rolls its imaginary eyes in frustration. My body is Lennie and my mind is George. My body is Ignatius J. Reilly and my mind is Sherlock Holmes. My ego has chosen sides, you see.

In about 9 months I can say confidently that I no longer have endometrial cancer. I’m not waiting for test results or a change in my health but simply the passing of my 5 year treatment anniversary to put me statistically into the “permanent remission” pile.  Jakob has stage IV cancer and his statistics are grim. When we talk about my visit in May, or even watching the first Formula 1 race of the season in a few weeks, he says, “I hope I survive.” Me too, dear.  Me too.

—–

[About the tweet from Zoë Keating above: her husband has stage IV lung cancer that has now metastasized to his brain, and they are preparing for him to have whole brain radiation treatment. I can’t echo her statement strongly enough. — Update, Feb 20: Her husband Jeff passed away yesterday morning. So fast and brutal. #fuckcancer]

 

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Borrowing someone’s eyes through an app

The Be My Eyes app uses video chat to match a blind person who needs information from something visible with a helper who can do the seeing for him. It seems like a clever solution to allow the blind to overcome small challenges without giving up independence.  (via Co.EXIST at Fast Company)

 
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Posted by on January 30, 2015 in Health - Mental & Physical

 

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The one in which I bury the extremely bad news

It’s a trope in vaudeville routines and farces: two people have an ambiguous conversation, one of them making an incorrect assumption so they’re actually talking about different things, leading to belly laughs from the audience. “Who’s on First?” is a classic example. As I found this week, it’s not so amusing when the topic is serious and it happens to me.

Contemplating

To catch up those who haven’t been following my personal story, my SL partner Jakob showed signs of illness a little over a month ago. This first appeared as problems using language when we were chatting online (detailed in this post). He was diagnosed as having a brain tumor.

That’s where ambiguous cross-talk bit me in the ass. Jakob could not write after surgery to remove the tumor and I got updates from his sister. Her Facebook messages, even when translated carefully, were very upbeat and reassuring. They removed it and he will be fine again! They checked his lungs but they’re clear! They’ll move him to a more comfortable room! Such good news.

But it wasn’t. Re-reading her messages after I got more news yesterday, I can see the clear problem: she must have thought I already knew that his tumor was cancerous. Without that information, she seems to be saying that it was benign and he will have a full recovery.  With that information, her notes still seem overly optimistic, but they’re not worthy of the gif dance party of relief that I posted.

The vast majority of malignant brain tumors are metastasized cancer from another part of the body, usually the lungs. That explains why the doctors checked for a problem there. They kept looking and yesterday there was confirmation: there is cancer in Jakob’s stomach. There are more test results expected later this week, but he has stage IV cancer, and at this point it appears to be gastric cancer. (There is still a possibility that it started somewhere else, spread to his stomach, then spread to his brain — but that’s not better news.) Gastric cancer metastasizes to the brain in fewer than 1% of cases and the prognosis is extremely poor. Median survival time is measured in weeks and there is no 5 year survival rate.

I find comfort in data, so I read some studies I found on PubMed, like Gastrointestinal cancer and brain metastasis: a rare and ominous sign, published in 2011 in the journal Cancer. Here is a quote from the paper. SR is surgical resection, WBRT is whole brain radiation therapy.

Response to treatment is poor among patients with brain metastasis arising from gastric cancer. York et al noted neurologic improvement in only 4 of 24 (16.7%) patients treated with either SR+WBRT (n = 3) or WBRT alone (n = 1). Median survival among the WBRT group did not differ from patients who received steroid monotherapy (9.0 weeks with WBRT vs 7.0 weeks with steroids, P > .05). Kaskura et al reported a median survival of 24.0 weeks in the surgical group (SR, n = 2; SR+WBRT, n = 1) compared with 10.8 weeks in the WBRT group (n = 3) (P < .05). The longest median survival was observed in patients treated with both surgery and WBRT (54 weeks; range, 22-83 weeks). In general, the prognosis of gastric cancer patients who present with brain metastasis is dismal, and treatment is palliative. Younger patients and patients with less extensive systemic disease may benefit most (if at all) from surgical palliation.

Jakob is younger than the typical patient with this disease. He had surgery quickly after his neurological symptoms appeared. He has his first radiation treatment in early January and he’s at an excellent hospital where they have a strong focus on quality of life. Optimistically, he may push the upper limits of the survival range for treatment with surgery and WBRT, which is about a year and a half, and feel comfortable most of the time.

Looking at the numbers through tear-blurred eyes yesterday and seeing some median survival rates as low as 9 weeks (9 fucking weeks!), I immediately started looking at options to get to Germany as soon as possible. His sister asked me to wait until they know more, after his first radiation treatment. I’m not sure that she understands that the treatments are to extend Jakob’s life a small amount, not to cure him, and it’s not my place to hammer that point home. I already have plane tickets to see Jakob in May. That’s 22 weeks from now. I think I’ll be scraping together some cash and going much sooner. With luck, we can have a second visit in May.

 
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Posted by on December 17, 2014 in Health - Mental & Physical, Relationships

 

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Online and offline worlds collided and everyone survived!

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

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

ftpst2smsfvtfu4n1fc2

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

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

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

 
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Posted by on December 5, 2014 in Relationships

 

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Tragedy, helplessness, and the stupid stigma of online relationships

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

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

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

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

— The Relationship —

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

wc_semi_2014

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

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

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

— The Illness —

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

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

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

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

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

Or maybe not.

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

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

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

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

I have not heard from him in 24 hours.

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

— What Can I Do? —

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

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

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

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

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

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

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

I feel utterly powerless.

 — Learn From my Pain —

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

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

— Now What? — 

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

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

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

come_home

Come home for Christmas, Jakob. Please.

— Updates — 

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

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

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

 
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Posted by on December 4, 2014 in Relationships

 

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Next weekend: Int’l Disability Rights Affirmation Conference in SL

idrac1poster

Everyone is welcome to attend this conference, sponsored and hosted by Virtual Ability next Friday and Saturday.  Presenters — including anthropologist Tom Boellstorff — will speak about topics from web accessibility (interface design and rights issues) to assistive technology and inclusion. The full schedule can be found here. Times are posted in SLT, which is Pacific Daylight Time. I’m hoping to attend one or two sessions.

These are important topics for anyone working in web or technology design, far beyond SL. If you’re not a current Second Life resident and want to attend, it’s quite easy to create a new free account, choose one of the pre-made avatars, and attend. Be sure to get set up and download the viewer software well ahead of time. You can drop me a note if you need assistance.

 
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Posted by on September 27, 2014 in Health - Mental & Physical

 

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