Tag Archives: health

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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A few short thoughts

I thought that the solitude forced upon me by a broken leg might be a great opportunity to write. How wrong I was! I don’t know if it’s constant exhaustion fogging up the sharper edges of my intellect, but I have a pile of half-finished, unpublished posts. I’ll spare you those until I can refine the thoughts.

There are two TV series airing now that would seem to be my bailiwick: Mr. Robot on USA Network and HUMANS on AMC. Basic themes: hacker vigilantism, androids that feel (and human interaction with lifelike bots). I’ve read glowing reviews of Mr. Robot, but we watched part of the 2nd episode and thought it was terrible. The acting, the characterizations, the script, everything. Am I missing something? On the other hand, HUMANS is intriguing so far. It makes my husband and I wish we had a Synth to help around the house, especially while I’m partly out of commission.

Tomorrow I visit my surgeon to remove the staples from my leg, x-ray it, and see how my healing is progressing. Of course I hope to hear, “My god! I’ve never seen someone heal this quickly. Kay, forget staying off that leg for three months. You can walk now. Hell, do a jig if you want! You’re practically the female Wolverine, with that healing speed!” What I expect to hear is, “Looks good. No weight on that leg until September.” I’m surprisingly upset by the immobility and restrictions of this surgery. I usually stay home alone, contentedly, all week, but knowing that it is impossible for me to leave the house without assistance makes it feel like a prison. I find it ironic that a relatively common injury like a broken leg is more debilitating than cancer or a hip replacement were for me. I’m sure it will be better when my leg is healed enough for me to sleep and sit upright more comfortably. It’s certainly strange to have Jakob sending me sympathetic emails and worrying about my health, and I remind myself frequently that my condition is temporary and before I know it, I’ll be ok again.


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Personal technology and temporary disability

Silver lining: while my broken leg heals, I’m in a good position to reflect on how personal technology can play a role in surgical recovery (or temporary/permanent disability, or quality of life for the elderly). Now that I have the energy to sit at my computer for a while, I’ll reflect on how that technology has changed in the past few years and the near-future opportunities, as well. I’m still taking narcotic painkillers now and then, so I won’t promise to be coherent.

Non-digital assistant: my dog is in full nurse mode

Non-digital assistant: my dog is in full nurse mode

Social contact

Having a smartphone with various messaging options and friends/family who use 21st century communication protocols makes such a difference. I’ll contrast my experience with that of my hospital roommate. She was in her early 60s and had a cell phone of some sort, but she only used it for voice calls. That’s better than only having the hospital landline, but still not the best solution. Why not?

  • Annoying in close quarters: I heard every detail of every conversation she had, day or night. While this sometimes provided entertainment — I got to hear her embellish the story of her surgery with each call and gossip maliciously about people she had just spoken with — it was infuriating when I was tired and in pain. The other side of that coin is that she had no privacy. With text messaging, I was able to converse silently at any time.
  • Phone tag vs message threads: One afternoon my roommate was bored and I think she called half the people in her contact list without getting an answer. She left some messages, sighed a lot, and then flipped on the TV. I had conversations underway with my husband, local friends, and distant friends from Oz to the Orkneys, and if there was a pause of minutes or hours while someone slept/worked/ate/did something else, it was no big deal. Asynchronous communication means you don’t always have to stop and start a conversation, but can pop back into a thread as time allows.
  • Presence indicator: In a related vein, when I was having a bored mopey afternoon like she had, I could see who was active online rather than fishing through my address book.

Part of the isolation of being housebound or in the hospital is that the ability to participate in the lives of others is reduced. It’s impossible to attend parties or go to events. Social media allows me to still have a presence in those activities. I won’t argue that watching a concert video my friend posted is the same as going along, but Liking and commenting on it shows I’m aware of and interested in her life; it helps refresh our connection. I can read and watch news to stay connected to the larger outside world, but social media keeps me connected to the more personal spheres.

There are options available that I didn’t use: Skype or FaceTime video chats, for example, or keeping up with other social media platforms, or trying to use Second Life on my phone. Now that I’m home, I can return to virtual world socializing. I don’t have much of an attention span for it yet, but I know I’ll appreciate being able to travel, dance, drive, and simply move through a three dimensional world.

Personal entertainment

I can clearly remember the first time I played an arcade game: Centipede, in Buffalo Children’s Hospital, early 1982. 33 years later I sprawled in my hospital bed and played far more advanced games on my phone. I also had access to a couple hundred CDs from my collection and limitless music streaming on various platforms. I could choose from thousands of streaming movies and TV shows.

My hospital provides each patient a television with a decent selection of basic cable channels. It’s quite nice, but at night when there was less demand on the WiFi network, I propped up my smartphone and streamed Orange is the New Black on Netflix. Being able to choose something for myself when I was dependent on others for my basic needs was invaluable. In a little way, it helped me remain me and feel less lost in the pain and humiliation.

Even now that I’m home, when I can’t sleep I flip open TuneIn Radio Pro and listen to a podcast or play a silly matching game until my eyelids are heavy. Those are much better options than staring at the ceiling and obsessing over the ache in my leg.

Home automation

My Internet of Things automation options are few right now: an Amazon Echo, two WeMo switches, and Nest thermostats. None of these were options for me a mere five years ago, however, so it’s interesting to consider whether they make a significant difference. For me, I think the answer is a firm, “Yes, but….” Yes, these devices make several things much easier and enable more independence, but there is so much potential just over the horizon.

While I can’t climb stairs easily, my bed is in our first floor dining room. The Echo and my Android smartphone give me the ability to turn lights on and off, adjust the temperature, and run the fan if I’m a bit overheated. The Echo recognizes the WeMo switches but not the Nests, which is annoying.  I can say, “Alexa, turn on family room,” to have her activate that WeMo switch, but the IF recipes that can pair Echo with Nest are clumsy hacks, things like “if I add any item to my Echo To Do list, set the Nest to 72 degrees.” There’s significant room for improvement.


I’m lucky. My stupid body might injure easily, but it also heals like a champ. I expect to be walking again by Fall and my gadgets can go back to being toys more than tools.  For now, though, I’m glad I have more options than I did just a few years ago.



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Becoming a cyborg is awfully slow and painful

At least, it is if you do it my way: having severe injuries that must be repaired with metal, a tiny bit at a time. I haven’t gotten a single servo or a power pack yet!  Such a failure.

I’m in the hospital, you see.  On Monday I broke both my tibia and fibula, just below the knee. Now there’s a metal plate reinforcing my tibial plateau and it’ll be 2-3 months before I can put any weight on that leg. I should have some badass scars, but the function of the knee itself may always be impaired.  I’ve got another day in the hospital and then I’ll go to a rehabilitation center until I’m well enough to take care of myself. Like Segues and old school Daleks, stairs are my nemesis, and my house has many of them.

I’ll get back on track with my blog when I can. I only have my smartphone with me and I’m not sure rehab will have wifi.  See you soon, I hope.


Posted by on June 19, 2015 in Health - Mental & Physical



Balancing the natural and digital worlds

I’m still adjusting to technology after a month of being away from everything but my smartphone. It’s amazing how much my mouse hand and forearm hurt; I think it’s time to trade in my beloved but clearly harmful thumb-ball mice. I started using them long ago to ease carpal tunnel syndrome, but now they’re a shortcut to tendonitis.

Logitech trackman mouse image

As much as I love the digital world, it’s not so easy to transition back. Facebook is tedious, most of Twitter is petty or repetitive. I craved media when I couldn’t have it, but now I skim the sites I used to read and everything looks boring. I can’t get excited about video games or virtual worlds. It’s all so much meh right now. It’s not that I’m less interested in current events, technology, gaming, anthropology, and thought-provoking issues, but the bar for my attention is higher.

So, as I find my balance again, this might be a good time to write about another occasion where I lost it. I don’t agree with the people who fret about screen time, saying that technology is making us incompetent and antisocial. However, I think that technology can exaggerate some parts of a personality while diminishing others, and we need to be responsible and self-aware of how it’s changing us.

I grew up in the country, swimming in the local creek, building tree forts, biking to nearby stables to ride horses. I was in Girl Scouts and 4-H.  It didn’t distress me to find a gutted deer hanging in our garage and I would help my mom wrap packages of fresh meat for the freezer. Yet, a little over a decade ago, I was in a very different place. The change had taken place gradually, but I isolated myself from the natural world more and more. I lived in a third-floor suburban apartment, working 10+ hours a day at a tech company and spending most of my free time online. “Cooking” was microwaving, though I ate one or two meals at the company cafeteria on weekdays. I became squeamish easily, even something like raw chicken would make me gag. I hated being sweaty or dirty. My lifelong arachnophobia had increased to the point where I would shake and burst into tears at a tiny spider across the room. I wasn’t a shut-in — I traveled and dated — but I had become very… delicate.

I was also burnt out. After a few months of introspection, I begged my way into the next round of corporate lay-offs, sold or stored my things, bought an RV, and took off for some solo travels in the US and Canada. My RV wasn’t expensive but I was in no way roughing it — I had a queen-sized bed, nice little kitchen, TV, and satellite Internet. Still, it’s impossible to have that lifestyle without getting dirty. You can’t be delicate when you’re dealing with your own sewage. After facing some hand-sized spiders in Florida and living with a changing array of bugs, my arachnophobia began to fade (it’s completely gone now). When I decided to stop roaming, found a job at another tech company and another apartment, I felt like I had a balance between the natural and digital worlds again.

I’ve managed to keep that balance. It’s not always the same — the proportions of time spent digitally/physically vary over a range that shifts with obligations, weather, passing interests, relationships, and health — but if I swing too far in one direction, I’m confident that I’ll find equilibrium again soon. I’m aware of it.

If you happen to find yourself in the same position I was, I don’t think you need to up-end your whole life the way I did. Pick up a hobby that takes your hands off the keyboard for a while. Get dirty in nature, even if that just means sitting on the grass — not a blanket — in the park. Push back at things that make you uncomfortable. Find a balance that works.

For me, now that I’ve finished writing this post, it’s time to step away from the computer for a while. See you soon.



Posted by on June 8, 2015 in Health - Mental & Physical


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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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Watching “The Incredible Bionic Man”

Yesterday I watched The Incredible Bionic Man on Netflix. It’s a strange Smithsonian Channel documentary from 2013: a group of scientists gathered state-of-the art bionic parts and assembled them into a “man”. The results aren’t completely successful, but as a mainstream introduction into what’s possible in bionics now and coming in the near future, it’s not bad. Here’s the trailer.

There were a few things I liked. The main doctor in the film — Dr. Bertolt Meyer — has a bionic hand. His reaction when he tries a new prototype is fantastic.  A scientist making bionic ankles reveals that he has two bionic legs and claims he wouldn’t want real ones if a wish could grant them. “Normal bodies are boring.” And, the film does bring in someone to be the voice of ethics, to ask questions about human life extension, whether it’s ok if only the rich can afford bionics, and what we will do when people want to remove undamaged parts to upgrade to bionics. He doesn’t answer them, but at least he raises them.

On the other hand, the show overuses the concept of Frankenstein’s monster.  The central idea of building a man from bionic parts — would it have some sort of life? — is quite silly, though effective for showing just how many parts of the human body can be replaced by machines. The short section where they had the creature talk, probably using text-to-speech, was not as funny as they seemed to think it was.

I love my prosthetic hip joint so much that I’ll confess, I daydream about having all my other problematic parts replaced.  Left elbow, left shoulder, whole right foot, maybe the other hip, and hey, can you do something about the tendon in my right hand that keeps getting tendonitis?  However, my father-in-law had a prosthetic leg and it was terribly awkward, uncomfortable, and often painful. The bleeding edge tech in this documentary is not available to most people, nor will it be soon.

Take a look if you have Netflix or you can see a few more short clips on the Smithsonian Channel page about the show.


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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.


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.


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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