Pixel Scroll 9/17 Second pixel to the left and straight on till Worldcon

(1) Curbed LA is not alone in thinking “The New Look of the Petersen Automotive Museum is Really Really Bad”.

petersen automotive museum

Shawn Crosby hit the nail on the head – “It looks as if the Petersen had skinned Disney Concert Hall Buffalo Bill style and is wearing its bloody outsides like a dress.”

(2) A critical headline also provides the first clue that Io9’s Germain Lussier is down on another project — “The Latest Stephen King Book To Become a Fatally Disappointing TV Show Is…”

The Mist is about how a group of citizens react when—you guessed it—a mysterious mist takes over their town, filled with horrible monsters. Both the movie and novella mostly take place in a isolated supermarket but the TV show will only use that as inspiration, and will have a larger scope.

(3) Anne and Wil Wheaton are hosting “Fancy Dinner: Burgers, Beer, and a Book” on October 20 from 6:30-9 p.m. at Crossings restaurant in South Pasadena. Admission is $100 per person. Click on the link for menu and other details.

At the end of the evening, you will get your own, autographed, advance copy of our book “A Guide To Being A Dog by Seamus Wheaton.” Proceeds from this event will be donated by Crossings to the Pasadena Humane Society to support our participation in the Wiggle Waggle Walk.

(4) This is a good example of what people look to SFWA for — Jennifer Brozek discusses “How Do You Ask For A Blurb?” on the SFWA Blog.

How do you ask for these blurbs without making a nuisance of yourself? You do your research. Many professional authors have “blurb and review” policies in place on their websites, mostly out of self-defense. An author can read only so many books when they are not writing or doing their own story research. Some of these policies may be “No. I will not blurb your book.” Some of them may be “Talk to my agent.” Whatever the posted blurb policy is… follow it. That’s the polite and correct thing to do.

If you have an agent, you can talk to them about talking to the agent of the author you’d like a blurb from. Your agent should have a decent handle on who can be approached and who should be avoided. If you don’t have an agent, you need to do things the old fashioned way: ask.

(5) Steve Davidson harkens back to his Crotchety Old Fan days with “The Things Robert Heinlein Taught Me” at Amazing Stories

What this little episode did remind me of is the fact that, in many ways, Bob served as a surrogate grandfather for me.  Both of mine passed before I’d been on this planet five years, and as anyone who has read Time Enough For Love can tell you, a rascally, unrepentant and self-assured grandfather is a must have in the proper development of the creatures we euphemistically call little boys.

And of course it then occurred to me that there were quite a few humorous (and not so humorous) lessons to be had from all of Heinlein’s books and, lacking the kind of social restraint that would undoubtedly have been passed on to me by a real-life grandfather, I have decided to share some of them with you.

(6) “The Cold Publishing Equations: Books Sold + Marketability + Love” is Kameron Hurley’s latest autobiographical post based on her royalty statements.

Being above average is important, because being average sucks —

The average book sells 3000 copies in its lifetime (Publishers Weekly, 2006).

Yes. It’s not missing a zero.

Take a breath and read that again.

But wait, there’s more!

The average traditionally published book which sells  3,000 in its entire lifetime in print only sells about 250-300 copies its first year.

But I’m going indie! you say. My odds are better!

No, grasshopper. Your odds are worse.

(7) Wallpaper Direct has a fun infographic about Doctor Who villains through time.

The role of The Doctor has been assumed by 12 respected actors, each bringing their own quirks and characteristics to the programme. Along with his Mark I Type 40 TARDIS (Time and Relative Dimension in Space), the time travelling rogue has blasted his way across space, but not without gaining some enemies in the process.

From the Daleks to the Cybermen, we take a look at the most notable enemies from the Dr. Who franchise.

And they’d be thrilled to see you some wall covering from their Dr. Who Wall Mural collection.

collection925_main_

Officially licensed wallpaper murals based on the latest BBC series with Doctor Who starring Matt Smith as the Time Lord – from the company Black Dog Murals. The mural is easy to hang – paste the wall product and each is supplied in a box, with full hanging instructions. Please read the hanging instructions carefully. The mural is supplied in pre-cut lengths. The lengths are sometimes reverse rolled due to the manufacturing process. If you are in any doubt regarding direction of pattern please refer to website.

(8) Steve Davidson is back with another installment of what’s eligible for the Retro Hugos that will be voted on by next year’s Worldcon members – Part 4 – Media, specifically, the Long Form category.

Best Dramatic Presentation, Long Form, is well served in 1940.  Not necessarily because there were a lot of worthy films, but only in comparison to Best Dramatic Presentation, Short Form, which has to settle for serial episodes and cartoons.  Television shows were still almost a decade away.

However, when it comes to film there are a few interesting contenders, and, fortunately, the vast majority of eligible works are known and viewable, thanks largely to the Internet Archive, Youtube and copyright law.

I’m looking forward to short form, where there should be a trove of radio shows and phonograph records, too.

(9) Steven H Silver saw this today on Jeopardy!

Category:  “E” Readers

Daily Double Answer: This novel by Sinclair Lewis caused and uproar for its satiric indictment of fundamentalist religion

Question from returning champ: What is Ender’s Game?

Lost $2000.

(10) Francis Hamit’s new book Security Matters: Essays On Industrial Security is available in a Kindle edition from Amazon. Says Francis:

It’s hard reality actually from the security industry; the experiences that inform some of my fiction.  There are some dramatic moments and instances recounted and the writing is some of my best. If it were a poetry book you’d at least look at the sample.

The volume is edited by Leigh Strother-Vien and Gavin Claypool.

A collection of “Security Counterpoint” columns that originally appeared in Security Technology & Design Magazine between 1993 and 2001 about problems and concerns that are still relevant today. Francis Hamit spent 21 years in that industry in operational, sales and consulting positions.

(11) A tough day for the let’s-you-and-him-fight crowd – because John Scalzi begins “How Many Books You Should Write In a Year” with this preamble:

Folks have pointed me toward this Huffington Post piece, begging self-published authors not to write four books a year, because the author (Lorraine Devon Wilke) maintains that no mere human can write four books a year and have them be any good. This has apparently earned her the wrath of a number of people, including writer Larry Correia, who snarks apart the piece here and whose position is that a) the premise of the article is crap, and b) authors should get paid, and if four books a year gets you paid, then rock on with your bad self. I suspect people may be wanting to have me comment on the piece so I can take punches at either or both Wilke or Correia, and are waiting, popcorn at ready.

If so, you may be disappointed. With regard to Correia’s piece, Larry and I disagree on a number of issues unrelated to writing craft, but we align fairly well here, and to the extent that I’m accurately condensing his points here, we don’t really disagree.

(12) “Here’s how the first humans will live on Mars –and why traveling the 140 million miles to get there will be the easy part” – despite the headline, it’s not a story about The Martian. It’s a pointer to an eye-grabbing infographic based on TED speaker and technologist Stephen Petranek’s book on How We’ll Live on Mars.

[Thanks to Mark, Francis Hamit, and John King Tarpinian for some of these stories. Title credit goes to File 770 contributing editor of the day Iphinome.]

177 thoughts on “Pixel Scroll 9/17 Second pixel to the left and straight on till Worldcon

  1. This isn’t nearly as extreme as Meredith and others, but I’ve had asthma since I was about four, and wasn’t diagnosed until my mid-seventies, when I had an asthma attack in the office of a doctor who had asthma herself. Until then, describing my symptoms to anyone at all was a waste of breath.

    Even after that–most people, even too many medical professionals, don’t think of asthma as a serious condition. I guarantee you my mother never understood that I have a life-threatening condition. On one occasion, when things were serious enough that I insisted my mother drive me to the emergency room, she wanted to stop on the way to pick up coffee at Dunkin, because the ER coffee is awful. (I was a meanie and insisted we go straight to the hospital.)

    Another “cherished” memory is having a friend (who was much more reasonable) drive me to urgent care because I was barely breathing, and having the doctor tell me I wasn’t doing at all badly, I wasn’t even wheezing. But I insisted, and she did a lung capacity test, and concluded that I wasn’t wheezing because I wasn’t moving enough air to wheeze–more or less what I’d been trying to tell her.

    And that’s with a disease that’s widely known and moderately common. I can’t imagine trying to get care from unfamiliar medical personnel for a rare disease that any random doctor or nurse is unlikely to have ever encountered.

    But it’s only 1806, and even anesthesia hasn’t been invented yet, and antibiotics are over a century away, so perhaps I shouldn’t be surprised.

  2. Ok, it’s the year 12015 and I’m giving up on reading Chuck Wendig’s Star Wars Tie-In at 17% into the story. It’s taken me 10K years to slog through it thus far and I just can’t keep taking one for the team, even though I said I would when the original furor over the tensiness or personness of something of the book erupted.

    The tense is fine. No issues with the way the book was written. I just don’t give a damn about what’s happening in the story. Much as I like Star Wars, I’m just not a good tie-in novel reader.

    Off to dust off my TBR mountain and find something new to read. I have a lot of time to make up.

  3. Junego — The text app I have on my iPad is PlainText, which will, among its simple set of features, give you a word count on a Select All. Don’t know how much it is now, but it was fairly cheap when I got it back at the dawn of time.

    (In 2668, however, it is preserved in a museum which, like all buildings in this era, is a plain box of aerogel walls, genetically-modified hardwood floors and nanocrete structure in real reality and whatever you want it to look like in augmented reality.)

  4. Can I just chime in about architects who don’t factor acrophobia into their designs? Especially when they do things like have bridges over an atria with transparent sides and no other way to get over to other side. Or all the elevators have glass walls.

    In 3730, all buildings are from IKEA and come in a myriad of flat pack boxes.

  5. In every year, it is critical that architecture includes windows. I don’t see windows in that metallic homage to the zebra

  6. In 3730, all buildings are from IKEA and come in a myriad of flat pack boxes.

    In 4213, we’re still looking at those flat pack boxes and wondering what to do with them.

  7. @hypnotosov wrote: 

    It’s always funny to me that people will quote any half-remembered thing from decades ago as simple fact, whereas Wikipedia always comes with a qualifier.

    Excellent observation! If I may, I’d like to quote you on that. 🙂

    On the topic of King adaptations, I always loved that the TV version of The Dead Zone said in the credits: “based on characters from a novel by Stephen King.” I always thought that was refreshingly honest, as well as rather amusing. When the show Haven came out, I joked that it should say, “based on a setting by Stephen King.” 😀

    I think we need a contest to decide what The Lawnmower Man should have said at the beginning.

  8. Xtifr —

    I think we need a contest to decide what The Lawnmower Man should have said at the beginning.

    “Based on a title by Stephen King”?

  9. @Xtifr:

    “Assigned the title of a random story written by Stephen King.”

    Here in 5168, the buildings look like solid concrete slabs, but they’ve got fiber-optic filaments woven into the concrete to provide natural light.

    (That’s actually a thing, BTW. At least, the tests I know of look promising. Visually opaque, but able to transmit light.)

  10. How about a classic:

    WITH THANKS TO
    STEPHEN KING
    FOR THE USE OF THE TITLE
    THE LAWNMOWER MAN

    right before the Titles credit.

  11. Rusty Spaceship on September 18, 2015 at 12:59 pm said:

    How about a classic:

    WITH THANKS TO
    STEPHEN KING
    FOR THE USE OF THE TITLE
    THE LAWNMOWER MAN

    right before the Titles credit.

    I would amend to “WITH APOLOGIES”. Here in the year 6779, there is still no forgiveness.

  12. @rusty @joe They still owe Vernor an apology for ripping off “Run Bookworm, Run!” for the start sequence of that film.

    (In 7075 I’m wearing my nanohelper cocoon house as I wander over the surface of Io, bathing in the sulphur lava flows and watching ring light glisten through the volcano plumes. Sadly I have to go back to the office on Callisto tomorrow. It’s been a good vacation.)

  13. @Lis, that’s horrible. I guess I’m relatively lucky in that at least my asthma was diagnosed early on— it just wasn’t really treated. Short-acting bronchodilators barely worked for me at all, but that’s what I was given, so I spent many, many hours as a kid just sitting over on the sidelines struggling to breathe until an attack passed; never got any more effective acute or chronic treatment till I was in my twenties.

    The thing is, I know I saw primary-care doctors as a kid for the usual checkups. I or my parents could’ve at any time mentioned how severe my symptoms were; I know they were concerned about me. My best guess is that we just didn’t make a big deal of it because we didn’t understand that there was any more that could be done, so we were just trying to cope. And I bet that happens with a lot of patients.

  14. We know more people will match this show if we attach Stephen King’s name so we randomly used “The Lawnmower Man” to trick you into watching. Stephen King was paid for use of title. Thank you for falling for this trick. Enjoy this show which has nothing to do with said book.

    Might be too long for a credit?

    Here in 7508 we find your entertainment media baffling.

  15. @Mike Glyer For one example, I look at that picture and I think of razor wire, that is sometimes wrapped at the top of security fences. For another, I look at that exposed metal and I think about something that will rapidly rust (not that the building actually will). Etc.

    I think rust would improve matters.

    Right now, it’s just “edgy,” without being at all interesting. It looks like it’s just a standard building with a funny skin, and I don’t think architecture and costumes go well together. If it, like the EMP, manages to marry form and function so that it’s not apparent where one ends and the other begins, I’d learn to tolerate the silly exterior, but I’m not optimistic.

    Here in 7656, we are in the post-architectural age and spray foam structures to fit around our few possessions.

  16. @Eli — Part of the issue for me is that my father smoked heavily, and tobacco smoke is a significant trigger for me. My attempts to explain that I had trouble breathing around cigarettes was dismissed as a child’s self-absorbed dislike of the smell. And my dad was very polite about it; he never brought a lit cigarette into space acknowledged to be “mine,” such as my bedroom or the play room.

    That was absolutely saintly for a smoking parent in the early sixties.

    I’ve bounced forward to 8790 to enjoy a Martian vacation.

  17. @Lis I can relate to dad’s smoking causing health issues. My hearing issues are due to ear infections caused by dads smoking. Links fully made when ear infections went away after parents divorced. Came back when my 1st husband smoked in the house. Went away when he smoked outside although I got bronchitis and pneumonia a number of times while living with him (I didn’t link probably clothing and his body/hair). Stopped after divorce. Ear infections were how I found out my stepson was smoking. Stupid kid smoked in the apt instead of outside like his dad did.

    Doctors not listening to kids who woulda thought? Snugs stinks to have health problems because of stuff like this & not believed so not treated.

  18. My latest Kickstarter: The only magazine in Europe devoted to independent comics is open to subscription. 64 colour pages of articles, interview and comics European Comics Journal

    I backed their past campaign. I’m backing them again. They support a number of other comics on Kickstarter helping people get a start.

    Hey what happened to the time machine?

  19. Here in the year 6440, we have forced all of our architects to focus on good storytelling, rather than these social justice themes!

  20. wasn’t diagnosed until my mid-seventies,

    Sorry, Lis, your mid-seventies, or did you mean mid-twenties? (My vague impression of you is that your mid-seventies would be at least 20 years away if not more.)

  21. @NelC:

    Thx, I’ll check PlainText out.

    Hmmmm. We seem to have ceased time travel for the moment. It’s 2015!

  22. On the architecture debate, as a London resident*, I’ll note that (a) both the Barbican and the National Theatre in London are perfectly fine (indeed, I think the NT has definitely ‘matured with age’, and (b) I bet that when, e.g. St Paul’s was being built, there were people grousing about this horrible modern architecture that is destroying a perfectly good view. The skyline of major cities changes all the time, that’s what they are for. I love the transformations, although I will admit that some of them take longer to get used to than others. (I was sold on St Mary Ax, or the ‘Gherkin’, almost straight away, but the Shard still feels slightly out-of-place.)

    *I have only lived here for twenty-five years, so I don’t feel qualified to call myself a Londoner.

  23. @junego

    I still give myself occassional pity parties :^]

    I think the odd pity party is healthy, so long as you do it in moderation. I’ve high-tailed it out of support groups that were nothing but doom and gloom (plus whenever wheelchair bus spaces came up things got fraught), but not letting myself mourn every once in awhile wouldn’t be good for me either.

    Some of my weirdities are difficulty building up calluses and then having the calussed skin peel off down to blood a week or so after the stimulus stops and other strange skin foibles.

    Oh, I’ve had that one! I hadn’t realised it was a Weird Thing; I’m always finding out that something I thought was normal actually wasn’t. My skin stuff is mostly fragility; I don’t heal well and I bruise very easily. Plus the striae everywhere, which I think is the most common one for skin things in general. Oh… And the soft velvety skin, too, but that one is a bonus really. Except when calluses might come in handy, but I preferred piano to guitar anyway. 🙂

    I remember you mentioning that you have to keep a high salt diet. Is that because of syncope/orthostatic intolerance? I have had bouts of that off and on.

    Yep, it is. I got lucky for diagnosis by happening to have one of the few London experts on it working at my local hospital, which meant when I turned up at neurology for unexplained blackouts the neurologist knew enough to send me over to said expert in cardiology. It still didn’t happen in time to keep me from getting kicked out of college (they thought I was making it up for attention), but it could’ve taken a lot longer and it was totally unmanageable without knowing what it was and how it worked, so I got pretty lucky. The annoying thing was that it probably kicked off because I was trying to be healthy and cut down on salt, which I’d always eaten “too much” of by ordinary standards. Bodies are smart and will ask for what they need!

    I read that, depending on which type E-D you have, the genetic mutations may be different for people with similar symptoms. […] Do you have other family with the problem?

    I hope they start pinning the genetic side down. It would be nice for things to be more trackable, traceable and predictable. The number of types of collagen affected can vary so widely, it makes it difficult to treat outside of the hypermobility clinics, and having one nearby is a postcode lottery. Mine is mostly joints, with some skin, and some digestion, plus co-morbid things like the nervous system issues (as well as the blood pressure fail, I have some failures to communicate which have never really been explained). (It’s also looking possible that osteogenesis imperfecta – brittle bones – might be an EDS variation, but there’s so little research on EDS that there’s no way to be sure either way. It isn’t something I have so my interest is purely academic, but the crossover is quite striking.)

    We’re not sure where it came from because there’s nothing obvious amongst parents, aunts, uncles and cousins, but my eldest sister may or may not have had vascular type (we’re not sure and we can’t find out – she died as an infant – complete with still the worst bedside manner story I’ve ever heard – bad news should not be broken to a young mother alone in the hospital with a casual “oh, you do know she’s braindead, don’t you”), and my other two sisters both have specific joints that cause issues to a greater or lesser degree, but not as all-the-joints-plus-random-stuff as me (which I’m very grateful for – I like my sisters and I’d rather me than them).

    It’s entirely possible that the weaker handful of joints affected to varying degrees sort that my sisters have would fly under the radar, though, so its hard to be sure about whether other relations do or don’t have it, especially if its turned into arthritis and stiffness by the time anyone knew to ask. I try and keep the awareness up within the family and hopefully in the future it will be caught sooner if it needs to be.

  24. Drat, I miss the time machine already.

    Re: London architecture

    The Gherkin is lovely, but some of the stuff built since is just not good, even ignoring the odd melted car. The Shard ended up being very ugly.

    @HelenS

    I know someone who has both Ehlers-Danlos and Hermansky-Pudlak (a form of albinism). Zebra squared, as it were.

    Doubling or tripling or quadrupling up is annoyingly common with Ehlers-Danlos. I’m not even sure I’ve met someone who only had the one thing rather than slowly collecting diagnoses as they go along. Something about the genetic mutation, maybe?

    @Bruce Baugh

    Belatedly: Meredith, we need some kind of I Was A Teenage Gimp special interest group. (My porphyria hit when I was 15.)

    Yes! It isn’t a good time for onset, is it? I’m sure there are benefits compared to other ages (late enough that you get a childhood, early enough that you adapt before already having your life-path set in stone, and yes I’ve spent some quality time brooding on the subject), but wow, I had more than enough to deal with at that age without my body getting up to extra shenanigans as well.

    @Lis Carey

    Asthma can be so underestimated. My mother has it (none of us inherited it, luckily, although I can’t breathe and get terrible coughs in times of higher pollution) and she had an awful time with a year in Spain for her languages degree. She ending up losing a terrifying amount of weight. She still has some clothes from right afterwards that I haven’t been able to fit into since I was twelve, and I was a pretty skinny teen.

    Knowing when and how to get pushy is a vital survival skill for anyone who has to interact with medical professionals.

    @Tasha Turner

    Thanks for the Kickstarter link! Looks interesting.

  25. There seems to have been a shortage of warm summer days this year, at least in London

    Seattle stole them this year. I’m sorry.

    Rick K on September 18, 2015 at 10:50 am said:

    I used to work next to the new Seattle library so was a frequent visitor. Once I got used to it I realized that the building is deceptively functional: if you take the really long escalator up to the top, then you can walk down the spiral and collect books along the way. There is enough room to house the collection. There are lots of seats and desks, and the computers are always fully utilized. But the Design Concept is always in your face going “I am Rem Koolhaas. Look on my works, ye Mighty, and despair!”

    We did the book spiral thing the first time we visited — I had seen it praised really highly in, I think, The New Yorker. And that part of it seemed functional enough, I guess. But it was also what cemented my sense of the whole space as aesthetically hostile toward paper books.

    Most of my visits since then have been for events in the auditorium.

    It ran so far over budget that the library lost its independent taxing authority

    Yeesh, that sounds horrid.

    But it’s not like Seattle DOESN’T get itself into that sort of trouble in other areas. There’s a certain would-be juggernaut stuck deep in the ground near the waterfront that I could name…

    Xtifr on September 18, 2015 at 2:10 pm said:

    Here in the year 6440, we have forced all of our architects to focus on good storytelling, rather than these social justice themes!

    Heh.

  26. On Kickstarter- I’m told that the game designer who came up with Shadowrun and Battletech will be doing a Kickstarter around the end of this month for a new turn-based computer version of Battletech.

  27. Meredith: I did know that about EDS and comorbidities, but I don’t think albinism is one of the usual suspects.

  28. …I think that was Kipling.

    Indeed it was; In a Neolithic Age

    And I left my views on Art, barbed and tanged, below the heart
    Of a mammothistic etcher at Grenelle.

    It’s such a cheerful poem.

  29. So I went off and looked up EDS in Wikipedia.
    I hadn’t realized there was a syndrome attached to the hypermobility thing.
    Me, my siblings, my dad, my daughter.
    All I got out of it was the ankle I sprained regularly for years, and an ill-defined feeling that my joints aren’t put together very well, that my muscles are willing to do things that my ligaments won’t support.
    But the kid is much more limber than I ever was – hands flat on the floor, linked hands go easily around to her back and the like – though it’s still not as extreme as some of the photos.
    And the crowded teeth, and digestive issues of various sorts.
    I thought everyone’s joints cracked a lot, and that crowded teeth were just a thing.
    I guess I should pass the information along to her, though it will follow immediately upon information about her dad’s hereditary heart-valve problems.
    (“Nothing to do, no immediate consequences, but tell your doctor to look for it.”)
    So, another parental dilemma: emotionally I would prefer the whole sheltering and protecting thing because life is hard and this feels hard.
    But intellectually, I’m wedded to the concept of complete information sharing.
    And I think this might give her an Aha! moment that solves minor mysteries.
    Off to compose Non-Alarming Informative email.

  30. What advantage does clicking the ticky box give a person? And why do I never get exciting timestamps?

    I mentioned the conversation about horses and zebras to MySonTheDoctor and he said “Yes. But in A&E you prepare for lions, tigers, and bears.” Which he explained means that instead of looking for things based on how common they are but on how bad it would be for the patient if you didn’t find it.

    I liked all the ugly buildings referenced here that I could find a picture of. I think my architecture philosophy is that public buildings should give people things to talk about.

    On the reading front, late as usual and reading out of order as usual, I just finished N K Jemisin’s “The Broken Kingdoms” and I loved it even though I usually am not attracted to stories with gods in them. It felt like I was reading the flipside to a Zelazny novel.

  31. @Lauowolf

    It isn’t much to worry about if there hasn’t been much going wrong so far, except being aware of the basics: Don’t show off your flexibility, even if it feels fine. Do stay fit because all the muscle tone you can get will help keep everything in one piece. Probably don’t play tennis if you’ve got any instability in your leg joints because a wrenched knee isn’t much fun and takes forever to heal. Do tell your doctor because it might help treating anything that’s related like the digestion stuff.

    Something around 10%* of the population have hypermobile joints, and 10% of those actually have problems with them (or anything else collagenish). Lots of musicians, ballet dancers, gymnasts etc. have hypermobile joints and are obviously very fit and healthy.

    The best way to protect your daughter (and any offspring she has, or your siblings have, or your siblings offspring) is keeping her informed so if anything does go wrong, it can be dealt with more quickly and efficiently. Trust me when I say that if I’d found out it was being kept from me I would have been very, very upset.

    *Statistics may or may not be accurate because the research is still limited and also this is relying on my memory.

  32. @Lucy Kemnitzer

    The ticky box (and accepting the subscription) is helpful if you want to keep tabs on the conversation without going back to the page or keeping the browswer tab open. The time travel is an intermittent bug with the comment preview window where it displays the wrong date; it doesn’t seem to be doing it right now, sadly.

    That sounds like a sensible attitude for A&E.

  33. Also RE the date bug^H^H^H feature, it took me a while to figure out where people were seeing the date, because it doesn’t show up until you type something in the comment box. Once you type a character in the comment box, check where it says eg “Lucy Kemnitzer on September 19, 2015…” If the stars are correctly aligned, you will discover you are posting from a year completely other than the one you’d thought. Right now, alas, as Meredith pointed out, I am posting from 2015, where I’ve just finished s02e01 in my re-watching of the original Star Trek series, finished “The Hogfather”, and started “Redshirts” to align my reading with my televisioning.

  34. @Meredith
    Trust me when I say that if I’d found out it was being kept from me I would have been very, very upset.

    I’ve already emailed her some links.
    It was one of those brief, forlorn parental pangs, where maybe something would go away if I ignored it.
    Just possibly rough, coming a week after telling her to go have her atrial valves looked at.
    But this might be more useful, since she’s talking about getting into weight-lifting, and that might be a bit problematic.
    If there are issues, this gives her a way to process it.
    (Like me, realizing that swimming is fine, but too much effort and my elbows ache for days – I can do it, but I have to be mindful.)

  35. @Lauowolf

    Hmm, weight-lifting? So long as she was sensible about it I think that could be fine. There isn’t any twisting, really, which is the main sport-thing to avoid (like the fast turns in tennis and some swimming strokes), and there’s no impact either, which is the other thing that can be a problem. A lot of exercising with bendy joints is just listening to your body and pacing things so you’re not exhausting any of the muscles around any particular joint too much. Weak wrists might be an issue but if she hasn’t noticed that yet it probably isn’t a factor.

    Swimming is actually my number one favourite physical activity. I’m no good at it but everything being cushioned and held up means I can move around for much longer than usual. I would honestly stay in water all day if it wasn’t horribly impractical! There’s a reason that the zebras who are campaiging to get EDS recognised by the paralympic authority are all swimmers. 😉 (It doesn’t fit neatly into any of the categories they currently have, so right now people with EDS can’t compete as disabled athletes, even if they use a wheelchair on land full-time.)

    ETA: Some people with EDS have trouble building and maintaining muscle, so if she doesn’t find that herself it may or may not be worth mentioning. It isn’t worth worrying about unless she finds her progress reeeeally slow, but it might be helpful to know in advance if she’s not the type to give up ahead of time on a maybe.

  36. Maybe stick to powerlifting over Olympic lifting. Olympic lifting is a delightful pastime, but it does involve fast joint turns and hyperextensions. Powerlifting is good stuff, though, which should if anything strengthen joints. Even the bench-press is a whole-body exercise in powerlifting, since you plant the feet and drive through the legs rather than isolate the chest muscles.

  37. It also occurred to me that if her elbows hyperextend easily she might need to be careful to avoid that while lifting. Straighten rather than what feels like straightening them.

  38. “…it might be helpful to know in advance, if she’s not the type to give up ahead of time on a maybe.”

    She did fourteen years of ballet, in the face of mean girls, with basically no encouragement from teachers.
    In her final year she did a lovely bendy Arabian for Nutcracker, on pointe and professionally partnered with lifts and things, with teachers saying they had never expected her to get that far.
    (Three other girls in her class are professional dancers now, the bar was very high.)
    She can be very determined, maybe more so than she should be.

    Re weight-lifting, I worry about her soldiering on through pain, if there is a possibility of doing actual damage.
    She pretty much already knows that she just doesn’t build muscle, so it’s good to know there is a reason for it.
    I just wish I’d put it together sooner.
    It explains her gum issues – impeccable dental hygiene, but two surgeries before she was twenty, and the tendonitises, and just lots of stuff.
    The only mystery that doesn’t fit in are the ovarian cysts – but that’s probably just some other cruddy gene she got from me.
    Argh.
    Parental beating-self-up time.

  39. @Lauowolf

    If she can manage ballet she can probably handle weight-lifting IF she’s sensible about resting in-between. She might need more recovery days than other people to let everything rest and heal up. She should be able to differentiate between okay-pain and okay-time-to-stop pain for the sessions themselves if she’s used to doing physical activity (in my experience, the latter feels like tearing).

    The ovarian cysts might still be EDS-related actually – both cysts and endometriosis occur more frequently in hypermobile people. I have no idea why, but they do. Comorbidity is common.

    But most importantly: It isn’t your fault. It isn’t your fault that she inherited something from you, any more than its your parent’s fault that you got it. It isn’t your fault that you didn’t magically trip over information about it sooner. None of this is your fault, and she wouldn’t want you to beat yourself up.

    I ought to know. My parents go through fits of beating themselves up, too.

  40. Er… TMI possibly but probably also tell her that avoiding progesterone-only contraceptive pills/methods might be a good idea. If she’s already taking one and there was no worsening of joint laxity or pain after starting it she’s probably fine with them, but they can play merry hell with some zebra’s symptoms. Combined pills are less problematic, usually. (Also, go easy on physical stuff during that time of the month. It brings with it increased flexibility – because progesterone – and increased risk of injury. You don’t need to full-stop – unless you do – but extra caution is advisable.)

  41. Sorry for delay…

    First thing I want to say is: What happened to your mother when your older sister died – I can’t EVEN!!!!!!!! My empathy neurons weep.

    Meredith on September 18, 2015 at 4:13 pm said:

    junego said:
    “Some of my weirdities are difficulty building up calluses and then having the calussed skin peel off down to blood a week or so after the stimulus stops and other strange skin foibles.”

    Oh, I’ve had that one! I hadn’t realised it was a Weird Thing; I’m always finding out that something I thought was normal actually wasn’t. My skin stuff is mostly fragility; I don’t heal well and I bruise very easily. Plus the striae everywhere, which I think is the most common one for skin things in general. Oh… And the soft velvety skin, too, but that one is a bonus really.

    Sounds like yours is more like Classic E-D. Mine is pretty straight up Hypermobility Type. No striae, skin not as stretchy or velvety (but have always had comments about my soft skin), not as fragile or bruisy either – but not exactly “normal” either.

    I hope they start pinning the genetic side down. It would be nice for things to be more trackable, traceable and predictable. The number of types of collagen affected can vary so widely, it makes it difficult to treat outside of the hypermobility clinics, and having one nearby is a postcode lottery. Mine is mostly joints, with some skin, and some digestion, plus co-morbid things like the nervous system issues (as well as the blood pressure fail, I have some failures to communicate which have never really been explained). (It’s also looking possible that osteogenesis imperfecta – brittle bones – might be an EDS variation, but there’s so little research on EDS that there’s no way to be sure either way. It isn’t something I have so my interest is purely academic, but the crossover is quite striking.)

    Didn’t know about the the brittle bone connection, I has intylechule curiosity, too. 🙂

    Part of the reason the genetics are still unknown/confused, imo, (besides rarity, lack of money and newness of the science) is that some of the causes may not be in the genes themselves but in switches (which are really hard for science/medicine to identify) and/or epigenetics and/or gene combinations.

    I have read that almost no one with E-D gets rheumatoid arthritis and, as you point out in another response, many gymnasts, musicians and others are very flexible and never have serious problems because of it. So there may be an evolutionary benefit to having these genetic alleles or modified switches to the gene(s).

    The problems may come when a “flexible” gene line gets a mutation to a switch that governs how often and/or how strongly one of the CT genes works. Or if 2 flexible gene lines procreate and some children have extra flexibility that causes more problems. Or something that happened to one of our flexible grandparents affected their germline to produce some grandchildren with extra flexibility.

    Oops, got a bit carried away there. Just my noodles about why it may be so difficult to find the cause(s) for most and why it seems to be so variable even within families.

    At least there ARE hypermobility clinics and some awareness in the UK. In the US even most rheumatologists are nearly clueless about it…most don’t even realize/remember there are different types with different symptoms and problems. I have had so many physicals where I show a Dr. how hyperflexible I am (well, was flexible, the early osteoarthritis finally overcame most of the hyperflexibility) to PROVE I have the signs of this genetic disease and they write that I’m “within normal limits” in flexibility!

    We’re not sure where it came from because there’s nothing obvious amongst parents, aunts, uncles and cousins, but my eldest sister may or may not have had vascular type (we’re not sure and we can’t find out – she died as an infant – complete with still the worst bedside manner story I’ve ever heard – bad news should not be broken to a young mother alone in the hospital with a casual “oh, you do know she’s braindead, don’t you”), and my other two sisters both have specific joints that cause issues to a greater or lesser degree, but not as all-the-joints-plus-random-stuff as me (which I’m very grateful for – I like my sisters and I’d rather me than them).

    So far neither of my sibs or their children are affected. No aunts or uncles. A few first and second cousins with variable, but not disabling, issues. My son has no issues at all. (His wife is very flexible with slight digestive issues). My grandson has hyper extended elbows and more flexibility than most 19 year old males but no problems so far. Granddaughter just turned 12, so too young to tell. (sigh) I worry.

    It’s probably good I only had 1 child. Pregnancy seemed to start my back and digestive issues at 20. It just got slowly worse as I aged.

    It’s entirely possible that the weaker handful of joints affected to varying degrees sort that my sisters have would fly under the radar, though, so its hard to be sure about whether other relations do or don’t have it, especially if its turned into arthritis and stiffness by the time anyone knew to ask. I try and keep the awareness up within the family and hopefully in the future it will be caught sooner if it needs to be.

    Agree pretty much completely. Hard to tell if the stories about a ggrandparent were because they might have had E-D or medicine/science were just more primitive.

    I want a Star Trek type medical couch with wand that tells exactly what’s wrong and can effing FIX IT!!

  42. @Meredith
    It’s a good thought.
    They tried putting her on a combination pill, after the cysts, but it made her feel icky, so she dropped it.
    And then she and her girlfriend got married last year, so it ends up kind of unnecessary.
    (And that is yet another part of why some species of puppy had me feeling pretty rabid.)

  43. I had crowded teeth and cracking joints as a young’un, and endo and yet I have always been the least flexible person ever. There are just things that go wrong.

    However, my high school chemistry partner was very tall and bendy, except for Osgood-Schlatter in her knees. She got excused from PE, and being restricted from sports was no problem since… well, we went to our first Star Trek convention together. On balance, she figured a pain that would probably clear up in a few years, but gave her an excuse to skip gym class (so very fraught as a teenage girl) and spend more time reading SF was a good deal.

  44. I’d like to thank the native zebras for giving me an origin for a technology on which I intend to base a story. Imagine temporary mind-swapping as a medical diagnostic tool, to let a doctor spend some time in the patient’s body and check out the symptoms from within.

    Of course, by the time the story rolls around, the tech will have moved beyond that into Uberish territory – recreational and for-profit swaps. Naturally, that’s when something will have to go wrong…

  45. Uhm, folks — some of these symptoms are raising red flags for me. I’ve been diagnosed with fibromyalgia, and I thought the digestive problems I have might be part of that…

    BUT — I’ve got some of the skin issues you’ve mentioned (velvety, stretch marks, bruises VERY easily) and my rheumatologist calls me his most flexible patient…

    So — what KIND of digestive issues?

  46. Probably one of the Officially Diagnosed people should properly answer this.
    My Google Diagnosed daughter has always had recurring problems with what from a parent’s perception had seemed to be just a sluggish digestion, along with issues with random abdominal discomfort, and a lot of heartburn.
    I’d assumed that last was my mother’s and my hiatal hernia turning up early.

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