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Category Archives: Health – Mental & Physical

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.

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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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Why my optimism about bionics has faded

Though I still get excited when I see footage of bionic exoskeletons and limb supports — devices that promise greater ability to the disabled and superhuman strength and endurance to all — I doubt that anyone I know will benefit from them in the next 20 years. My optimism is dimming with my current experience trying to obtain a new leg brace. Currently, I’m wearing the brace on the left below. It’s a fine brace, though its technical advancements over Forrest Gump’s braces are mostly in materials, padding metal with plastic and replacing buckles with Velcro.

legbraces

That brace model must have particularly long legs. I need to extend the calf section to diminish sliding, and with the thigh portion compressed as far as possible, the brace nearly stretches from my ankle to my crotch. Also, since I’m a human female and my legs have curves, the dials at the hinge float away from the sides of my knee. This is the brace I was given in the hospital post-surgery and it’s actually very helpful for stability. However, it’s difficult to walk with a natural gait while wearing it, and to venture into TMI territory, it’s damn hard to get my pants down far enough when I have to pee.

It’s been three months since my surgery and my only remaining movement restriction is no impact: no hopping, skydiving, competition Double Dutch, etc. The stretched ligaments around my knee make it wobbly and it has a tendency to hyper-extend, so my surgeon wants me to wear a brace all the time. I rarely wear it in the house because it’s a pain, but I wear it whenever I go shopping, walking the dog, picking apples in the yard, or whenever my attention could drift for a moment and allow my leg to collapse again. I’d happily wear it more if it was a few inches shorter and fit better.

To that end, my surgeon has written two prescriptions in an attempt to get me a smaller, custom-fit, hinged knee brace. That’s not as simple as you’d think. The one local orthotic provider who would do it doesn’t accept my health insurance and gave me a quote above $900. I’ve spoken with four others in my area and their responses boiled down to: they don’t have a low profile brace option for a tibial plateau fracture, they don’t care that I’m 3 months post-surgery and my doc wants me to have a smaller brace, but they’d be happy to sell me a brace similar to the one I already have. A couple of the people I talked with treated me like I was a whining, non-compliant patient who needed to be spoken to in short, carefully-pronounced words. The one I spoke with this morning insinuated that the problem was insurance. I have a diagnosis that connects to a certain code and that code goes with a certain range of braces, and flexibility is not an option.

What remains is for me to find a brace online and pay for it out of pocket. The braces that I think my surgeon has in mind are too expensive ($550 and above) but I can find some in the $200-300 range that might work. The key features I need are a hinge that prevents hyper-extension and a rigid frame to maintain alignment. I hate to spend more when we’ve paid off the high deductible on our insurance plan for the year, but I don’t see another option.

If it’s this difficult to get a medical device when the product isn’t cutting edge technology — in the US and with good health insurance — how can I be optimistic about wide usage of bionics beyond the military and industry? I read articles like this 2010 piece from Fast Company, Bionic Legs, i-Limbs, and Other Super Human Prostheses You’ll Envy, and I have such mixed feelings. The article cites a gruesome profit motive for creators of kickass prostheses: the increasing number of lower limb amputations due to skyrocketing incidence of diabetes. Awful. But then I think about how medical costs are inflated, looking at things like the prices for knee braces like the one I need,and I wonder how many of those diabetic patients will even have a chance at the sparkly new technology. Diabetes and poverty are positively associated, so many of the people expected to need amputations are also those with the most restrictive health insurance, least ability to shop around for a doctor, and often, challenges with time and transportation that make treatment compliance more difficult. My father-in-law had a prosthetic leg. It was a heavy, uncomfortable, painful piece of crap. My guess is that’s what most poor and many middle-class amputees can expect for many years to come.

I now look at the thrilling videos of bionic prosthetic developments the way I look at Top Gear supercar reviews. I can appreciate the science, technology, and design that went into them, and I can envy the few that get to have them, but I don’t expect to see any in my neighborhood.

 
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Posted by on September 22, 2015 in Health - Mental & Physical, Transhumanism

 

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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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Identity: Tell me, who are you?

Who are you? Who are you now, and is that the same person you always are and always were?

I’ve always played with identity. As a child I was imaginative and, let’s say, indiscriminate about the boundary between reality and fantasy. The first sign of this may have been when I was five and screamed for days because my parents said my imaginary friend couldn’t move to our new house. A couple years later they began dropping me off at Sunday School with instructions to go to church alone afterwards. (As an adult, I understand that they relished their child-free Sunday mornings more than they cared to adhere to the dictates of Roman Catholicism. Fair enough.) I would sit on the hard pew and imagine I was blind. Or maybe deaf. I’d concentrate on what senses would still be available and try to tune out the one I “lost”. Sometimes I’d refuse to say any words aloud because then, I was a girl who didn’t speak English.

Harlequin 1

It isn’t uncommon for little girls to have a phase of fantastical confusion, but usually other interests or maturity put an end to it. I read this compelling New York magazine article about the two girls who stabbed their friend in the so-called “Slender Man attack” with empathy and growing discomfort. Luckily my crazy imagination never extended to violence and I channeled my make believe into society-approved acting and writing. Nevertheless, it’s embarrassing to recall how much I lied. Sometimes the reason was manipulation — inventing a dire health crisis to get extra time for chemistry lab reports — but often it seemed the stories came out of my mouth before I processed them anywhere else. Why on earth would I spontaneously pretend to be an exchange student from England when I knew almost nothing about the place and my accent came from playing Anna in “The King and I”?  That’s who I became to the cashier of a bookstore I visited on a field trip. WTF, younger me?

In my 20s I began to make a conscious effort to stop lying. The impulse remains in me as a stress reaction. It’s commonly said that people who compulsively lie do so for attention, but that couldn’t be further from my truth. I might lie to blend in, or to end or shorten an awkward conversation, or to divert attention from something I don’t want to discuss. It’s rare; usually I cage the lies behind my teeth before they leap out.

But, what about sliding into different identities online? Where are the lines drawn between performing a role, exploring parts of oneself, and outright lying?

I’ve had a blog off and on, mostly on, for 14 years. As a blogger I am honest in the way that a 2×4 board is not exactly two inches by four inches, yet it’s accepted as such until there’s a need for precise measurements. I may change names and locations and mess with timelines. I skim over details. The emotional and intellectual content is always as true as I can make it, but the rest is flexible enough to condense for narrative clarity or warp for privacy. I feel that my blogging identity is synchronous with who I am offline. You wouldn’t be greatly surprised when meeting me in the physical world after reading this site.

Identity with multiple avatars in a virtual world is more complicated. Take this scenario as an example: someone who knows I have multiple Second Life avatars invites me to come to a dance club, and I reply, “Let me sign on as Kay, because my alt doesn’t go to places like that.” I am the conscious person who animates both avatars and my reply makes it clear that I’m comfortable going to the club. Who, then, is not?

Before you say that I simply draw a line between two roles that I play online, let me add that if I went to that club as my alt, I — physical me — would feel the mild distress of being in a place that is out of my comfort zone. If I changed to my main avatar I’d feel confident and at ease in the same place. Both of them are me, but I have parceled out my personality among them and though they’re more alike than they used to be, some differences remain. Luckily for most people who meet me online, I’ve put most of my hostility and anger into my rarely-used second alt, but beware if you ever run across her. She can be a monster.

He sat to take a photo with me

When I’m in SL, I make an attempt to be honest or silent about my RL. My online identity may only reflect a portion of who I really am, but it is consistent and leaves open the possibility for people to get to know me better. That hasn’t always been the case, but it is now. That doesn’t mean I welcome conversations about offline details until I know someone well, but I’m not part of the “SL is SL, RL is RL” contingent (valid and perfectly acceptable, just not me). Considering my childhood, it’s a little surprising that I don’t enjoy online roleplaying. I’ve tried, but I can’t pretend for long before I want to make deeper connections with more authenticity. And, I frakking hate paragraph-style roleplay… but that’s another topic.

This topic was on my mind because I gave birth to a new identity over the weekend. I’ve known for a long time that I wanted to use a pen name for my serious writing. I’m a private person and whether I have any success or not, I want a buffer between me-the-author and me-the-person. The timing was right. I was reading Margaret Atwood’s Negotiating with the Dead: A Writer on Writing about her early days as a poet and writer:

If I had suspected anything about the role I would be expected to fulfill, not just as a writer, but as a female writer — how irrevocably doomed! — I would have flung my leaky blue blob-making ballpoint pen across the room, or plastered myself over with an impenetrable nom de plume, like B. Traven, author of The Treasure of the Sierra Madre, whose true identity has never been discovered. Or, like Thomas Pynchon, I would never have done any interviews, nor allowed my photo to appear on book jackets; but I was too young then to know about such ruses, and by now it is far too late.

We live in a media-saturated time and I’m no Pynchon, so I don’t expect to remain effectively anonymous, but simply detached. Atwood talks about the dual nature of being a writer, which I can relate to so well. It was the following section from her book that convinced me it was time to give my writing doppelganger a distinct name.

Now, what disembodied hand or invisible monster just wrote that cold-blooded comment? Surely it wasn’t me; I am a nice, cosy sort of person, a bit absent-minded, a dab hand at cookies, beloved by domestic animals, and a knitter of sweaters with arms that are too long. Anyway, that cold-blooded comment was a couple of lines ago. That was then, this is now, you never step twice into the same paragraph, and when I typed out that sentence I wasn’t myself. …I’ve read more than one review of books with our joint surname on them that would go far toward suggesting that this other person — the one credited with authorship — is certainly not me. She could never be imagined — for instance — turning out a nicely browned loaf of oatmeal-and-molasses bread….

What to call the writer-me who takes sympathetic characters and tortures them mercilessly? My husband and I brainstormed a list of first names and then I pulled a few surnames from books I love, we mashed them together in different arrangements, checked them in Google, and said them aloud. I had to change the spelling of the surname I preferred, but then, there she was. I showered her with gifts to solidify her reality: a domain name and website, a Twitter feed, and a Facebook account. Eventually I hope she’ll be like a uniform I slip on for work; not as comfortable as my home clothes and with some different rules of behavior attached, but still me inside.

 
 

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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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Considering “The Immortalists”

I’ve been wanting to see the 2014 documentary “The Immortalists” since it was released, so when it appeared on Netflix this month, I streamed it immediately. Here’s the trailer if you haven’t seen the film:

The documentary is mostly focused on Bill Andrews and Aubrey de Grey, evangelical researchers fighting to “cure aging”.  They’re interesting fellows and the filmmakers are rather sly in how they cut together their personal and professional stories. You can watch simply to see two passionate people pursuing a cause in which they fervently believe, or go deeper into the scientific and ethical issues that are hinted at throughout the narrative.

Some spoilers for the film are below, so stop here if you want to see the story unfold on your own.

I was struck by several things as I watched. First, that neither man has done the basic act many people do to ensure that some part of themselves lives on: reproduce. De Grey married a scientist in her mid-40s when he was younger and there was no mention of children with the two girlfriends revealed near the end of the film. Andrews mentioned several failed engagements in his 20s, and when he found a partner, she was past reproductive age. Though the men talk about future generations, it’s somewhat surprising that neither will have descendants of their own among them.

The two men have different approaches to the problem of aging. Andrews points to the fact that our telomeres behave like the tick of a clock counting down: each time a cell divides, the telomeres become shorter.  Therefore he sees the key problem as one of resetting the clock by extending telomere length. De Grey, on the other hand, is concerned with waste material that builds up inside cells over time, attributing diseases of aging and perhaps aging itself to the toxic effects of waste that normal processes were unable to clean. The enzymes to break down that material exist, he insists, explaining that no accumulation of those toxins can be found in graveyard dirt.

After reading that, if I told you that one man had a hoarding mother whose home had to be emptied of tons of trash when she died, and the other runs ultramarathons of incredible duration, could you tell me which was which? Of course you could. The filmmakers don’t rub your nose in parallels like those, but they provide the material for you to find them.

As much as I admire de Grey for shamelessly wearing scrunchie ponytails in public (I wish I was so brave), he sometimes seems overly aware of his brand image and perhaps he’s read a bit too much Heinlein. Andrews seems earnest but grasping, lacking the hippie chic of his polyamorous, heavy-drinking counterpart and desperate to be taken seriously before time runs out.

The parts of the film devoted to questioning the science or ethics of either approach are small but significant. Andrews comes under attack by the scientist who discovered that there is a limit to human cell divisions. De Grey engages in a debate with someone who argues that humanity is responsible for too many problems on this planet as it is, and that overpopulation, global warming, and other problems need to be addressed before we greatly extend human life.  I thought his response to that — that other scientists are working in parallel on other problems and that we do not have good predictions about where things will be in 100 years — was quite good, but I also, like his opponent, fear a sudden breakthrough in life extension.

Personally, I think that life extension research is vital for space exploration and colonization that I feel must be part of our future. I think it poses ethical problems here on Earth, where money and access to Western medicine would decide which populations would first have radically lengthened lives. I think of de Grey’s comment about his mother, shown in the trailer above, where he says she certainly hadn’t done everything she wanted to do in her life. I’m sure that will be true for me, too, but the limiting factor is money more than time. Should a person have to prove that she could support herself for additional decades of life before being given a therapy to provide them?  If not, how will society, economic systems, and family structure have to change to accommodate a new group of super-seniors?  Will super-seniors of limited means be forced to work menial jobs and submit to strict lifestyle restrictions to earn support from society? (Not a crazy suggestion: in some parts of the US, people who receive support money from the government have limits on how it can be spent, may have to work a low-level job unless they are medically unable, may have to submit to drug tests, and may only be able to live in some areas, among other constraints.)

I’m also basically skeptical of preserving our organic selves. Our bodies and brains are wondrous things, but they’re so complicated and flawed. Though I often think Ray Kurzweil is nuttier than a fruitcake, the idea of being able to upload enough of my consciousness to be “me” is more appealing than trying to repair this bag of meat for eternity. Perhaps we’ll discover, definitively, that consciousness cannot exist without a significant amount of human flesh. If it can, however, sign me up for a simplified digital and robotic casing that can be upgraded to whatever comes next. Writing from my wheelchair, I’m not so impressed by my current organic packaging, but the metal bits seem to work just fine.

 
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Posted by on July 24, 2015 in Health - Mental & Physical, Transhumanism

 

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What are your superpowers?

With the new promo for Heroes Reborn getting wary praise and superhero movies a constant presence in theatres, people with big badass powers seem to be all the rage. I find myself more fascinated with the concept of micropowers: small deviations from the norm that provide an advantage. Have you ever considered your own superpowers, even if they’re micro in scale?

Poison_Ivy_(Uma_Thurman)_4

For example, I don’t react to poison ivy or poison oak. Once when I owned a home in the Shenandoah Valley, my parents visited and helped me clean out the brush at the back of my property. The next day they were both covered in itchy welts while I was unscathed. It’s not much of an origin story. That micropower facilitates my heroic deed of pulling the poison ivy along our fence every year and sparing my husband some days of itchy madness.

I can digest lactose as an adult. This might not sound like much, but researchers estimate that at least 65% of people in the world — and  over 90% in some populations — lose the ability after weaning. Advantage granted? Well, this is indeed micro: I only have to carry enough Lactaid in my purse for my husband and I can eat all the ice cream I want without gastric problems. Hmm. On second thought, let’s not underestimate the ability to eat lots of ice cream. (Side note to supervillains unaware of my power: imprisoning me in a cage made of Ben & Jerry’s Americone Dream would be a terrible thing to do. Terrible!)

I’m weirdly flexible. Not quite as bendy as Mr. Fantastic, but enough that my yoga instructor often has to give me a more challenging version of a pose, and positions that I consider comfortable and relaxing seem like bizarre contortions to others. I wish I discovered this as a child, when it might have been useful for sports or dancing!  Now it’s useful for things like scratching every part of my back by myself. Whoopee. However, this is a superpower with a built-in vulnerability: I can be more susceptible to injury. Tighter tendons and stiffer joints might have prevented the hyperextension that broke my leg last month.

Anyone out there have a fun or useful micropower to share? I’ve been considering this topic in some of my writing — or lately, in some of my thinking about writing, because I’m finding it hard to be productive — and I think small powers can be just as fascinating to explore as the world-changing ones. Maybe not advantages as tiny as mine, but somewhere between lactose tolerance and time travel, there’s a sweet spot.

 
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Posted by on July 16, 2015 in Health - Mental & Physical, Side Topics

 

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