Understanding MS, my version

MS is frustratingly hard to understand. It's one of those things you hear about and see descriptions of and you just skip past it and think it's unpleasant and complicated and you don't really need that knowledge anyway. Since I was diagnosed with it, I had to reevaluate that skipping-past part, and this is my attempt at explaining it, primarily for my own understanding of what the hell is going on and how to deal with it, secondly to have a handy explanation when asked what's happening.

Do not read this to understand MS on a medical level, it is probably incorrect on a dozen points. It is only a layman's decription in order to understand what's going on and how to deal with it.

Some basics

The cause of MS is fairly well understood. It's an auto-immune disease, where the body's own T-cells damage the sheaths of the nerves (the myelin sheath). The damage is irreversible, there is no way to regenerate the sheath, although stem cell research looks like it could eventually provide a therapy that eliminates the ill effects. What triggers this attack is less well understood. It only happens in some people. There is an inherited risk but it is not a hereditory syndrome, though the risk is higher for Caucasian people than non-Caucasians, and the incidence is higher for populations in Northern Europe than elsewhere, and higher among females than among males. Onset is typically between ages 20-50.

That's all - as far as I understand - uncontroversial, but also not very helpful. You can't avoid it by living a healthy life and you can't escape it once it manifests.

To understand the consequences of MS, one has to understand a few things about neurology, which is complex far beyond any simple mechanical level. I've found a few analogies are helpful.

Timing

First, a nerve is not one cable that transmits a meningful self-contained message. Rather, it's a bundle of very simple signal paths, like a binary symbol - on or off. Actually it's probably truer to say it's a numerical value (an intensity) but it helps the think of it as a binary (on or off). Imagine you're watching like a film, showing the result of rolling a dice. Accounting for all the different ways the dice could fall, you'd need to monitor nine positions: the positions of a "six", when it falls so the lines of the six are horizontal or verical, plus the central position (for "one", "three" and "five"). We're glossing over that the dice may not always land in a well defined spot or orientation, it's actually not important.

You're watching - your brain is watching - a sequence of dice outcomes, each outcome represented as a set of signals in those nine spots. You can quickly learn what each combination of signals means. Only the spot in the middle: that's a "one". That middle one and the corners: that's "five". Two diagonal corners: "two". And so on. That's what your brain does. It sees that sequence and you experience it as those interpretations, although it is relayed to your brain as separate signals for each spot.

You're watching a series and it is meaningful to you once you've learned to interpret it. This is what you do as a kid, you learn to make sense of the world. Now imagine the timing of those positions being relayed to your brain changed. Perhaps you learned to interpret the signals using a system where the top row took 2 milliseconds, the rest of the signals too 3 milliseconds except the centre point which took 6. Now imagine you're watching one dice roll every millisecond. Cool, it can still be done, the rules are just a little more complex.

Now here comes MS: the damage to the myelin sheath changes the transmit speeds of the nerve. Some of the signals are delayed, say by 2 milliseconds, some by 3, some by 4, a few not at all. All the patterns you learned to look for are now irrelevant. You have to learn them anew. This is not impossible, but frustrating and slow. It's exactly like learning to walk again, which, incidently, is exactly what I just did.

This damage also affects a bunch of nerves that are used for stuff you willfully control but don't really have a conscious image of how you control them - you can't feel the muscle that controls focus of the lens in your eye for instance. You just think of what you want to focus on and, presto, the eye does the rest. If you have to relearn that, good luck trying to do it consciously. Relearning to walk up the stairs is easy by comparison, you know at some level which movements you need to repeat. Not so with the eye.

Chemistry and hydraulics

That's one side of the effects of MS - the easy side. The other side I've settled on to decribe the effects involves a bit of chemistry, or perhaps cars. If there's a leak on the brake system of a car (the old hydraulic sort, not some new-fangled electrical one), oil leaks out when you apply the brakes. The more you brake, the more leaks out, and the less efficient the system becomes. This describes what happens in a nerve with a damaged myelin sheath. The transmittor leaks out, making the signal weaker and weaker, and it leaks out when you use that nerve. Once enough has leaked out, the nerve becomes more or less useless - it feels like an overpowering fatigue that is nothing like what you feel after doing physical activity (muscle work), it feels more like the mental fatigue you feel after taking a math test. And that's exactly what it is, mental fatigue driven by mental activity - neurological activity.

The name "multiple sclerosis" means "many scars", and relates to those damaged myelin sheaths - those scars are both what changes the timing of the signals and what leaks the transmittor substance.

Training and medicine

There is no cure for MS. There are modification drugs, which are meant to stop the flares of the disease, so you don't get new scars, but that's all. You can train in order to relearn some of the signal patterns, and there are some attempts at preventing some of the leakage from the scars. There are drugs and recommendations that are aimed at a higher level, such as giving the body better ability to cope with the situation, like eating fish at least so and so many times a week (the reason is more complex than that).

So that's what I'm doing: training, practising walking and moving, looking for a medicine that will let me handle the fatigue.

Fun with damaged nerves

The nervous system is extremely complex and fantastic in every way, and when it gets damaged in some way all sorts of interesting things can happen. Recently diagnosed with MS, I've seen some pretty fascinating things happen to my body and how it interacts with the world. Almost everyone is familiar with those color blindness tests for instance, colored dots that hide a number and if you're color blind you can't see the number, so I'm told. This summer I was at the ophthalmologist because my eyes were giving me a lot of trouble, and when they showed me those multicolored plates, I thought they were broken, or dummies -  I couldn't make out any contours at all. I could still see the different colors of each little dot, I just could no longer make out the patterns. I'm told this is common in cases of inflammation on the optic nerve. I was relieved that when I did the test again a month later, I could actually see some shapes and I think this is something that will mend itself over time.

Another comic effect I experienced was when I lost my memory of taste and smell. Everything tastes the same as it always did, I just have no memories attached to it. Acquired taste was obliterated. So when I walked into the restaurant at work, I couldn't figure out what was being served without peeking. The familiar taste of something I loved as a kid was reduced to a purely intellectual recognition. Coffee... tasted like it did the first time I tasted it, awful. This was a bit of a problem as I was a pretty big coffee drinker. I blamed the sleepiness I felt on caffeine abstinence and after a while I had actually relearned to like coffee.

It took much longer for me to stop hating ice-cream. I got pretty sick after eating a lot of ice-cream when I was 12. The particular flavor that triggered it was chocolate ice-cream, with chocolate crust and hazelnuts. In case you're familiar with Swedish ice-cream, "88:an" is the culprit. After that I very rarely ate ice-cream, never chocolate ice-cream and wouldn't touch ice-cream with hazelnuts in it. Since it's something I don't eat, it took me a while to discover, but that bad memory of ice-cream also lost its hold on me. When I started having difficulties walking, I started inventing things I wanted to do, and one of the things I decided I wanted was to go get an ice-cream on a hot day. I decided I was going to eat ice-cream and like it. And I did. Whether it's a good or bad side effect of MS I'll let each reader decide, but as with the weight loss, I have to say my opinion is that it isn't really worth going through MS just to lose some weight and eat ice-cream, not even when you get to do both at the same time.

Whiteboards and markers can't be teaching the way blackboards and chalk did

Watching public exchanges over use of computers and tablets in schools and the effect it might have on kids' ability to read and write, I'm suddenly thinking about my college days, and the professors who really knew how to wield the chalk.

Ingrid, who wrote - flawlessly - with her right hand and swiped - simultaneously - with her left hand. Damn, that improved my speedwriting.

Anders, who taped a piece of chalk to his three middle fingers. Oddly, those two math profs were also among those who had the best writing hand.

And whatever the universe might mean by it, as I was pondering all those memories, this happened to show up.

I miss college.

Excuse

I've been so busy not updating my Google+ feed, I haven't had time not to write any bloggery lately.

Consider this a warm-up. Or a bad excuse, your choice.

Vilks

This is a translation of a bloggery post I made in Swedish last year. I've been intending to translate it for a long time but never got around to it. I hope it's better than the google translator and any babelfish attempts... 

In July of 2005, I was with family in Skåne, down in the south of Sweden and we had a field trip to Kullaberg. It was quite hot, the water flasks we carried were all gone by the time we got back. There were plenty of people down at Nimis and after a while we spotted the artist himself, Lars Vilks coming down the path to the building site carrying tools and with some planks on his shoulder. He climbed about nailing wood to the sculpture and after a while took up a position on a rock where he sold books and stamps while conversing the ladies.

Burnings in Kuala Lumpur

My first edits on Wikipedia were made sometime in 2002. I kept editing mostly because I like to write. With time, English Wikipedia became a little too crowded and the articles started to fill up. When starting to write in an article that was up until now almost empty or didn't exist at all, just about everything you do adds something, but as the articles improve it gets harder to add and more like work. I tired of English Wikipedia and moved on to the Swedish version. While I was relatively early on the English wikipedia, on the Swedish Wikipedia I was among the first. I was user #42. Around that time I also started adding images. Pictures  differ from articles in that the space for items doesn't fill up, there's always room for one more picture if something.

By the time of our visit to Kullaberg in 2005 I brought a decent camera and had already planned to get some pictures of Nimis since I knew there weren't any good ones. I was never fanatical about Wikipedia but I was going there and I had a camera so I thought I'd get some pictures, no more than that to it.

So, when Vilks appeared on site, I waited until he was free, introduced myself and asked if he would mind posing for a portrait for Wikipedia. Vilks didn't mind. If I had to guess, I think he had a rather fuzzy idea of what Wikipedia was and its impact, or what drives Wikipedians - not that I mind, I'm a layman if anything when it comes to his field. I felt there was a certain symmetry to it. Vilks asked if I wanted to get a portrait with him brandishing his trusty hammer. I said no thanks, that wasn't quite the portrait I had in mind.

"The picture"

Once I got home, the Nimis pictures ended up on my computer but I didn't get around to uploading them until two years later. By then, Vilks' roundabout dogs drawings had been published which made me realize there were still no portrait on Wikipedia. I chose a couple pictures and uploaded them and they were at least good enough to be the main pictorial material on the articles about Vilks on both English and Swedish Wikipedia, and probably some other languages as well.

In 2010, Jihad Jane appeared in the news. Media reported that the woman had done research about Vilks online and I wondered about how much there might be to find. It seemed likely that she had at the very least seen my pictures. Back when I added the pictures there hadn't been that many other images to find. So I looked around again and it seemed reasonable to assume that Jihad Jane had got her fundamental knowledge and image of Vilks from the article and the image I had added about 4 years earlier (if I understand correctly, Jihad Jane was apprehended in 2009),

It didn't stop there. "My picture" was also present in articles about Jihad Jane, roundabout dogs and various other topics. Considering search engine behaviour and the high ranking Wikipedia material gets, it seemed reasonable to assume anyone who had been reading about Vilks, Jihad Jane, roundabout dogs, had also seen "my picture."

You'll note I call it "my picture." It is still mine. I'm the only one who can sell the picture. What I cannot do is to stop someone from redistributing it under the terms laid down by Wikipedia. I can't prevent anyone from publishing it or from printing and posting it on a wall - or burn it. The history of the file is available to anybody and the creator (me) is readily visible. It is farily easy to track down individual Wikipedia contributors and I never made any attempts to hide my identity on Wikipedia.

In March-April of 2010, fundamentalist muslims carried out a number of manifestations at Swedish embassies in - if memory server me right - Lahore and Kuala Lumpur. In Lahore they burned a horrbly misshapen effigy of the Swedish flag, in shades of green and pink, but in Kula Lumpur they had a proper regulation flag for the burning. Apparently, it was stolen from the embassy's flag pole. Someone had also made other preparations: along with the flag, a bunch of print-outs of Vilks' portrait from Wikipedia were burned. I.e., the photo I took.

The picture continued to turn up in various contexts. In May 2010 Vilks was set to appear in Uppsala (my hometown) which was heralded in one of the free newspapers in town in a nearly full-page article illustrated with the portrait I took, covering a lot of the page. I thought about attending the event but eventually it didn't happen. By now, enough had happened that I thought I had some relevant questions for Vilks and I thought there was some discussion to be had around it, for instance regarding the publishing of the portrait.

I didn't make it to the event, which with hindsight was a disappointment as well as a blessing. Since then there have been assaults and attacks on Vilks. Debate seems mostly to have calmed down but mention of the roundabout dogs keeps reappearing all the time, for instance in the messages left by the Swedish suicide bomber just before holiday season 2010.

Taken a step back to ponder it all: Do I think it was right to publish the portrait? Would I do it again?

My thoughts are mainly these: First, Vilks is by his own choice a public persona. Pictures of him continue to be published in media, including after Jihad Jane's arrest was made public. If anything, they increased in number. I'm not aware of any attempts by Vilks to limit these publishings. His mission is, if I understand it correctly, to reach as many as possible with his discussion and with his debate. So I don't think I let him down by publishing the portrait.

Granted, I didn't immediately publish the portrait when I had taken it but only after the first round of publicity. I'd probably do it again today if I had the choice. Given the choice now, I'd say it's not we who follow clear ethical rules that need to align with those following a shakier compass.

Finally, there is one thing that I'm very thankful for in all this: Saying "No, thanks" to the portrait of Vilks brandishing his hammer. If anything, it would have looked really awful being burned along with the flag in Kuala Lumpur.

Geolocation

In yet another weird coincidence, right after I wrote about augmented reality and online integrity this one guy released a little tool called Creepy. Ok it's not such a great coincidence cause a lot of people are talking about these things but, whatever. This tool collects geolocation coords from posts in twitter and flickr. I'm thinking it could perhaps be enhanced to include at least facebook, gowalla and foursquare.

I've never been to Iceland. Really.

Some online blurbs blurbed about how frightening this tool was, so of course I had to try it out. So I grabbed the installer (creepy on github, it's available for linux and Windows, mac version in the works), showed it one of my dirty socks and said FIND!

And nothing came out. Of course. I (@Teodric) never added coords to a tweet.

So I tried with some other people. Politicians. Musicians. Actors. Tech journalists. Friends, even.  One had coords given, in one frickin tweet. Subject of that tweet? "what happens if I check the coords box?" Finally I tried a few Sweden democrats and some pornstars (Wonder if there's prejudice involved here?) but not even those were dumb enough (or cool enough, you choose) to add coords to their tweets.

I did find one tweeter who apparently adds coords to his tweets every now and then, I think to show off where he is today - @Magnusbetner, Swedish comedy guy.

As a scary illustration of how far social media and information technology already intrudes on our lives, I'd say Creepy fails. But give it a year or two and I'm certain it will show interesting things.

The page on github lists the various means the tool has of finding geolocation tags.

Reality, with a little help

Allright, augmented reality will be all over us shortly, and literally. Are you sure you want to do this?

You will be using technology that adds information layers to your senses in realtime and connected to information systems around the world. There are already existing products or prototypes that do most of these things:

Add information about a person. The information you can dig out on the net about a person is staggering. Your blog, facebook and tweets, your memberships, your jobs, anything media has published about you - it's all there. Your crimes and your achievements. Soon it may be displayed in a bubble over your head: little icons or flags for tax evasion or being a member of a club, the name tag's size varying depending on your number of friends and followers.

Add GPS-navigation overlays to guide you. Finding a street, a store, the nearest trash can, public toilet or first aid kit, it will all be very, very easy.

Translate text. In real time. More than one language on the restaurant menu may become quite rare. This is already here.

Bring features to your attention. Knowing what you usually ask for and what you clicked on yesterday, it's no biggie pinpointing related things in your environment. If you researched Big Ben last week, you probably wouldn't mind being reminded the first time it comes into view.

Recognize persons or features. You will know it when the guy with 50000 twitter followers comes into the restaurant. Conversely, if you have a lot of followers, they will find you when you step into a restaurant.

You will know your heart rate, blood pressure, the time and temperature, how many steps you've taken today, that you're about to catch a cold and that your bus is late. You will see how much weight you've put on since yesterday. You will know the fire alarm went off at your kids' school and that there's no milk in your fridge at home.

There will be skins. Choose '70s to have everybody look like... on second thought, that theme will doubtless be outlawed. There will be goth skins though. Your boss will wear a long black cape (she will think it's cool) and the secretary will be in a corset and crinoline (he will hate you), if you choose. And you can exchange their faces for one another, too, not a thing they can do about it. It's only what you see in front of your eyes, anyway. (From the commercially acknowledged "suitable" skins appearing, it will take approximately 48 hours for nude skins to appear. 72 hours later an Avatar theme comes out and 2 hours after that it's pulled by lawyers, replaced 5 hours later by a theme showing green skinned aliens. By then, the most popular themes will be Horde skins and some cultural equivalent of Justin Bieber)

Crowdsourced applications will alert you to the location of the nearest cop, so you can get help. Or so you can make sure nobody's watching.

Your glasses will show you on what shelf in the store that particular brand of canned beans are.

The coffee shop will have your perfect blend ready on the counter as you walk by, with you morning bagel next to it, no matter if you're an hour early or late, it will still be fresh.

You will be alerted that you are about to burn your chili.

None of this is news to you, but have you actually stopped to think about how much your world is about to change?

How will we defend our integrity against this? There will be no defense against a political opponent who easily spots you and walks up to punch you in the face. You and those around you will no doubt get it on film (and post it on Youtube 60 seconds later) but there will be no way to avoid it. If you've ever been spotted in the jersey of the team from the north side of town, watch out if you're going to the south side.

Sitting in a bar and double-blinking at a girl you like - will it increase her like-count, or will it send an invitation to share a dinner and movie? That's user customizable.

But you will never walk down the street again, and not be recognized. The advertisement will call out your name, and will know you bought condoms last week and lice schampoo the week before that.

It's Minority report, it's Robocop, it's a hell of a lot of things. Not all of it is good and a lot of it will take you by surprise.