It's been six months since I was diagnosed with MS. I don't know quite what to say about it. I'm doing fine, really. I am getting better. I'm frustrated and more than just a little bit angry that I can't find the right buttons to push and pills to take to just make it all go away, but I am undeniably better than I was and if I'm just honest about it I can see that I'm still improving. I just can't accept that I can't control it more and hurry things up.
I'm just stepping up the pace and starting to go to work three days a week. My employer has been incredibly cool through all this and the boost I get from every day I manage to go to work and feel like I'm actually doing some work, it's very hard to describe. I wish everyone could feel as happy about going to work as I do.
Having the perfect alibi for just doing... nothing... it's weird. Let's just say, when things just aren't possible to do anymore, it puts another perspective on it all. That old "you don't value what you have until you lose it". It applies to walking, running, going to work.
My promise for the weeks until the holidays: I'm gonna talk less about being sick. Enough of that already. Not because I don't want to but it's about frickin time to have some other things in my life too.
That doesn't apply the same way to writing though. I'm trying to find space for writing more and about more things, but I'm not going to limit writing about being sick, that's just for real life conversations. So, on blogs and stuff, more MS TL;DR.
2013-11-29
2013-11-22
Focus
Back in my twenties,I probably made the assertion that programming must be one of the most intense efforts of concentration and focus of just about any professional line of work. With age may come just a little bit of modesty and I wouldn't have claimed that later in life.
However, now that MS has made it so that maintaining focus and concentration have become some of my greatest challenges, I'm re-evaluating that. Drilling down into code, solving the problem, building the abstraction house of cards, is by far the hardest thing I'm trying to do right now. I have comparable difficulties in other areas but they differ in at least one critical aspect. Physical effort is hard because it's, well, hard. On the other hand it's the area where it's easiest to see the improvements, and it's incremental. If you pass an obstacle you've come closer to your goal.
Social interaction is incredibly tiring but at least it's self-driving. I do tend to nod off in conversations and I'm less active in discussions than I used to be, but at least it's situations that keep dragging one back in.
On the other hand, if a coder nods off, the code just sits there. You have to maintain focus through an effort of will. And that's frickin hard. I'm sure there are situations that are just as hard for others, like writing for instance. For me writing is pretty effortless but coding requires a level of concentration that is very hard to maintain. Keeping focus on writing for a long period of time would be similarly hard but at least in the short term, maintaining visual focus and staying awake are the bigger obstacles.
However, now that MS has made it so that maintaining focus and concentration have become some of my greatest challenges, I'm re-evaluating that. Drilling down into code, solving the problem, building the abstraction house of cards, is by far the hardest thing I'm trying to do right now. I have comparable difficulties in other areas but they differ in at least one critical aspect. Physical effort is hard because it's, well, hard. On the other hand it's the area where it's easiest to see the improvements, and it's incremental. If you pass an obstacle you've come closer to your goal.
Social interaction is incredibly tiring but at least it's self-driving. I do tend to nod off in conversations and I'm less active in discussions than I used to be, but at least it's situations that keep dragging one back in.
On the other hand, if a coder nods off, the code just sits there. You have to maintain focus through an effort of will. And that's frickin hard. I'm sure there are situations that are just as hard for others, like writing for instance. For me writing is pretty effortless but coding requires a level of concentration that is very hard to maintain. Keeping focus on writing for a long period of time would be similarly hard but at least in the short term, maintaining visual focus and staying awake are the bigger obstacles.
2013-11-15
One of my favorite videos
I've spent a lot of time watching some video channels lately, mostly about atheism and belief, because I believe that there is no way one's understanding of one's own position could be too deep. I've come to admire some of these channels immensely, for their willingness to open themselves to being yelled at, for their incredible skill and knowledge and common sense. I can't imagine any way to make a more important contribution to society. I wish I could do the same effort myself but I just don't think I'm cut for that task.
This clip below is a great example. It's from the channel The Atheist Experience, by the Atheist Community of Austin. In this episode, host Matt Dillahunty and co-host Jen Peeples take callers with religious questions and assertations.
I understand Dillahunty has been criticised for being harsh or hostile on the shows and I can't help thinking about what I felt when I first came across things like the writing of Dawkins. I did feel that it was too shrill, that the message should have been more subtle and gentle. A few years later and after seeing and reading more of the discussions I have abandoned that standpoint. There is no need or reason to be gentle about this message - all the more reason to admire the endless patience and goodwill of the hosts on shows like the Atheist Experience.
In this clip (episode #705, April 17, 2011) there are a few callers with general questions (but no screamers or preachers and nobody with a new proof for the existence of gods) but the reason I love the clip is what comes after the show's over. The program is an hour long but the clip continues with Matt and Jen talking to the final caller, and not only are they brilliant in dealing with the calls but the final caller is also great. It's a young man who is actually listening and making progress through the conversation.
If watching the whole 80 minutes is too long, the good part starts at about 57 minutes but I recommend watching the whole thing (and as many as possible of the other episodes from Atheist Experience).
The important thing: I want to say I admire that last caller to the show. He shows some of the best qualities a person can have: honesty and willingness to listen to a view different to one's own. I hope he goes far and I think he will.
This clip below is a great example. It's from the channel The Atheist Experience, by the Atheist Community of Austin. In this episode, host Matt Dillahunty and co-host Jen Peeples take callers with religious questions and assertations.
I understand Dillahunty has been criticised for being harsh or hostile on the shows and I can't help thinking about what I felt when I first came across things like the writing of Dawkins. I did feel that it was too shrill, that the message should have been more subtle and gentle. A few years later and after seeing and reading more of the discussions I have abandoned that standpoint. There is no need or reason to be gentle about this message - all the more reason to admire the endless patience and goodwill of the hosts on shows like the Atheist Experience.
In this clip (episode #705, April 17, 2011) there are a few callers with general questions (but no screamers or preachers and nobody with a new proof for the existence of gods) but the reason I love the clip is what comes after the show's over. The program is an hour long but the clip continues with Matt and Jen talking to the final caller, and not only are they brilliant in dealing with the calls but the final caller is also great. It's a young man who is actually listening and making progress through the conversation.
If watching the whole 80 minutes is too long, the good part starts at about 57 minutes but I recommend watching the whole thing (and as many as possible of the other episodes from Atheist Experience).
The important thing: I want to say I admire that last caller to the show. He shows some of the best qualities a person can have: honesty and willingness to listen to a view different to one's own. I hope he goes far and I think he will.
2013-10-21
What else could I tell you about experiencing MS?
Multiple sclerosis is different in every patient. I understand that, but it's very hard to accept the consequences of it. Once you have a diagnosis you want to ask your physician, "Can I recover? How much of this can be repaired? Will I get worse?" but if you have MS, no decent physician will make such a promise or forecast, because it's all individual.
Why is that? Simply put, MS just means you have some damaged nerves. How many and which ones, that's individual, and the nervous system is a really complex landscape. No two individuals have exactly the same layout of that landscape - sure, it follows the same basic pattern but the nervous system of an adult is like a tree. Two pines may look similar to a casual viewer but if you look carefully they are very different, as they are both the result of the environment where they stand. Even if they are cloned and have identical DNA, they will grow into quite different trees. With a random disease like MS which can affect any part of the nervous system, that matters.
I've come to compare it to pouring water on a slope. You can say "It will run downhill" but there really isn't much else to say that will be meaningful. Even if you only talk about slopes of such and such inclination and covered with a similar surface, on some level the results will differ.
Comparing MS to pouring water on a slope, "it will run downhill" corresponds to "some nerves will have damaged myeling sheaths". Apart from the type of damage to those nerves we don't know much about how this will manifest itself to someone with MS. The range of symptoms MS can cause is huge. If something in your body has a nerve - and it has - it can be affected by MS. Well almost, MS only affects nerves that are white matter, and generally not the peripheral nervous system. That doesn't really give much of your body safe passage from MS. Autonomous systems are generally excluded so MS probably won't affect your heart or lung functions, but a lot of functions you think of as autonomous but which actually are not, are frequently affected, such as nerves that control muscles you aren't consciously controlling. You cannot feel or control the muscle that controls your eyes' focus for instance, or the muscle that opens your bladder when you pee. Your throat may feel like a simple thing to control but: you do not have one effin clue how to swallow a mouthful of water unless those muscles do it for you.
As far as I understand, MS mostly affects the nerves at the boundary of decision making, where the simpler signal is about to be interpreted by the brain (or conversely, where decision in the brain is about to be transformed into signals to a muscle). One example would be the optic nerve, which I can describe in person. The function I lost was nothing that happens in the eye itself, but the ability to find some types of patterns - I lost the ability to find contours in multicolored images (as I described), my vision at the level you think of as "vision" seems quite untouched.
The frustration this causes is pretty hard to imagine. You don't know what will mend itself and what is lost, and the doctors won't say. And no matter how hard you try, most of the stuff that is affected is very hard to measure. Once you get past the really simple maneovers, it all comes down to willpower, because your enemy isn't really function, but fatigue.
I take walks, in order to practice. I need both to relearn how to walk, and I need to find both where my limits are and how to cope with them. Problem is, I find it very hard to say where my ability ends and willpower takes over, and that makes it very hard to measure improvements. In the beginning, I had very simple abillity tests: walking up the stairs, how many steps can I go without hitting or scraping the step with my right foot? After a while, I could climb two flights of stairs, so I started trying to run, and after a while I could do that too. I try to do anything that makes the whole thing more fluid, but that's hard to measure. The distance I walk every day improved nicely at first but once I had done it, the pace doesn't change much, and how long I can keep doing it is more something that's determined by the fatigue and my willpower than by any ability I can train.
I have one ally in trying to get my walks, anyway - Ingress, (app store) an "augmented reality game" by Google, where you play the game by visiting places in the real world and, well, doing things at those places. It let's me tell myself I'm not walking because I just "need to walk", I can tell myself it's a little bit important that I go visit that spot, even though I know exactly what is there and I was there earlier today. Convincing myself is sort of a game I play with myself. So far it has worked, at least inasmuch that it helped me move and get out a bit.
Writing these posts about the disease is part of me trying to relearn and get back ability, of course. My fingers have forgotten how to type, and I have trouble watching anything for any stretch of time, for two reasons: first there's a general problem of attention and concentration. Second, there's fatigue hitting the focus of my eyes. There's also a lot of frustration from typing so badly (horribly!) but at least I've relearned enough to be able to write this.
I didn't plan to make this a series at all, it grew by itself. I also thought this third part was going to be the last one but I think I may want to try to describe fatigue, too. Not right now though, I'm way too tired.
Oh, and I'm on the Enlightened side, of course.
My game today
When I was my sickest, I couldn't really take in information. As I've been getting better, I've started to catch up a bit. I've started reading about MS and neurology, and one of the things I've dug into is the trove of my journal notes, which I can get digitally. They're fascinating reading. They show the slow path of finding out what was wrong with me and they hint at some of the mistakes made by some of the people involved - I'm not saying those mistakes were necessarily the fault of the doctors, I can mostly understand why they thought the way they did. Much of the red herrings follow straight from my story as I lived it and as I told it, and not even my telling was at fault, I'd tell the same story again and it would have been fabulous if those conclusions those doctors came to had been correct. Sadly, I wasn't just depressed and in need of a good shrink.
There are also some interesting observations about me in those journal notes. Like "tends to give very long answers". I bet readers of this blog and people who know me in real life or from the internet would happily agree with that. I have no idea what giving long winded answers is supposed to mean in doctor-speak, but there it is, and it's true. I try to tell everything I have even a suspicion that whoever I'm talking to, and who probably knows more than I do about this crap, might recognize as relevant. Just like how I want my users to not edit or censor their error reports thinking they know what has gone wrong.
Another observation in the journal notes that at first I found baffling occurs several times, and I've gotten it a few times in peson as well, is that I'm "extremely competitive". This just doesn't fit my image of myself. I'm supposed to be this laid-back person who, if anything, seems to not care enough.
However, when it comes to driving my therapy on, I'm pretty vicious. I'm not allowing anything to stand between me and my workout. I decided as soon as I had some idea of what was coming that I would claim every benefit there was to be had. No shrinking from interviews or forms, if there was something I'm entitled to, I'm going to claim it. None of that "I'm doing ok, don't worry", I'm sick enough to take all the stuff that's promised and pity the fool that stands in my way cause I have a really heavy binder full of papers saying I should get it and I'll smack whoever tries to stop me over the head with that binder and a truck-load of guilt. So far, it's working pretty well.
Being me, I prefer therapy I can measure. My first weeks were quite easy - I couldn't walk up the stairs so I started counting the number of steps I could take and lift my right foot up the next step without touching it on the way up. After a week or two I could do it all the way up. I upped the challenge a bit, I tried running up but it's really hard work and often I can't do it because I'm too tired to begin with. I started logging my walks. I began using Endomondo a few years back for my inlines skating and it works just fine for my convalescent walks as well. So I started logging those walks and I'm really glad I did. They show very nicely the progress I've been making this summer.
One problem with walks is that I can't really increase the challenge beyond "walk for about an hour". I can't increase the tempo because I can't control my pace very well, every step is at the pace my body sets, not my mind. Secondly, MS fatigue sets a pretty hard limit on how long I can keep going, and evey day has a different limit.
One ingredient in my daily walks, from the start, has been Ingress.Ingress is an "augmented reality game" which means you play it in the real world and the game adds its game content on top of the real. In this case, there's some sort of ... stuff, coming from the centers of human activity and attention, and two sides of players compete to control the stuff. The game comes from Google and it's played on a version of Google Maps. The portals, as they're called, are assigned by Google from player submissions and the game is at least partially driven by Google's data of demographic and usage patterns. Wherever people move around becomes a hot spot in the game
The game is still officially in beta test but it's not hard to get a game account (as long as one is happy to remain or become an Android user). I got an Ingress account in January. At least that's when I tweeted about my first impressions. I loved it, it's a fantastic idea, beautifully implemented. I didn't play it a lot though. Back then, there weren't enough portals around for it to be all that fun and I wasn't interested enough to play a lot. Plus, since the game requires one to visit actual places in the real world (a bit like hunting geocaches) it was getting harder every day for me to play it.
However, once I emerged from the nightmare, in need of motivation, Ingress was waiting for me. By then the portals were everywhere and there were a lot more active players. I found I had a few portals within walking distance of my home, and I started visiting them every day. First one, then two, then more of them. I was also running my exercize tracker but that was always just logging. I soon started saying I was going out to "check on my portals". There's no real need to visit a portal to check how it's doing although you do need to visit them in order to harvest some resources needed to advance the game, it was just something I said to explain what I was going to do. And so, the game magically started to assume the responsibility to motivate me.
Ingress became a reason to get out, the scapegoat I both needed and wanted in order to take another boring, frustrating walk. I was already getting very frustrated with how hard it was to reclaim what MS had taken from me. Ingress became a goal that bypassed some harder things and set something small within reach and I let it motivate me and I blamed it for quite a few unnecessary expeditions to places I didn't really need to visit when I'd much rather have stayed at home on the couch, dozing off, instead of worrying about where to find a toilet and looking nerdy stumbling about with my crutch in one hand, phone in the other, looking for a portal to attack.
I let the game become my focus whenever I could afford to (and I still do). It's reminiscent of Jane McGonigal's Superbetter (in "the game that will add 10 extra years to your life". If you haven't seen it, do it now. Just click. You're welcome)
Now I didn't have a concussion and I wasn't depressed. I didn't have ALS ("The best part of having MS: not having ALS") or any other terminal illness. I certainly didn't want to die, quite the opposite: I thought I might be dying and I didn't want to.
The allies I make in this game are my allies in extending my life and getting better. Superbetter in McGonigal's words. We even have lunch dates to play. If you were ever a gamer, you can imagine.
I still have MS to deal with, and I don't have any illusions that I will discover The Cure (that would be a beyond-epic win - see McGonigal's first TED talk) or that my recuperation will take me anywhere near where I want to be, healthwise.
However... Among the really, really odd, spaced out weird, strange symptoms I've experienced, a recent one kind of stands out: if you know how touch displays work, you know that most of them will route a tiny electrical current through your finger in order to find out where you're tapping the display. That current is normally too tiny to be felt, but since a few weeks back... I can feel it. I'm speculating that my body is relearning so much, that might be allowing it to pick up this little signal and register it in my brain.
Or, maybe it's my level 10 special ability in the get-well game. Sort of like an X-men mutation. I think I totally deserve one.
There are also some interesting observations about me in those journal notes. Like "tends to give very long answers". I bet readers of this blog and people who know me in real life or from the internet would happily agree with that. I have no idea what giving long winded answers is supposed to mean in doctor-speak, but there it is, and it's true. I try to tell everything I have even a suspicion that whoever I'm talking to, and who probably knows more than I do about this crap, might recognize as relevant. Just like how I want my users to not edit or censor their error reports thinking they know what has gone wrong.
Another observation in the journal notes that at first I found baffling occurs several times, and I've gotten it a few times in peson as well, is that I'm "extremely competitive". This just doesn't fit my image of myself. I'm supposed to be this laid-back person who, if anything, seems to not care enough.
However, when it comes to driving my therapy on, I'm pretty vicious. I'm not allowing anything to stand between me and my workout. I decided as soon as I had some idea of what was coming that I would claim every benefit there was to be had. No shrinking from interviews or forms, if there was something I'm entitled to, I'm going to claim it. None of that "I'm doing ok, don't worry", I'm sick enough to take all the stuff that's promised and pity the fool that stands in my way cause I have a really heavy binder full of papers saying I should get it and I'll smack whoever tries to stop me over the head with that binder and a truck-load of guilt. So far, it's working pretty well.
Being me, I prefer therapy I can measure. My first weeks were quite easy - I couldn't walk up the stairs so I started counting the number of steps I could take and lift my right foot up the next step without touching it on the way up. After a week or two I could do it all the way up. I upped the challenge a bit, I tried running up but it's really hard work and often I can't do it because I'm too tired to begin with. I started logging my walks. I began using Endomondo a few years back for my inlines skating and it works just fine for my convalescent walks as well. So I started logging those walks and I'm really glad I did. They show very nicely the progress I've been making this summer.
One problem with walks is that I can't really increase the challenge beyond "walk for about an hour". I can't increase the tempo because I can't control my pace very well, every step is at the pace my body sets, not my mind. Secondly, MS fatigue sets a pretty hard limit on how long I can keep going, and evey day has a different limit.
One ingredient in my daily walks, from the start, has been Ingress.Ingress is an "augmented reality game" which means you play it in the real world and the game adds its game content on top of the real. In this case, there's some sort of ... stuff, coming from the centers of human activity and attention, and two sides of players compete to control the stuff. The game comes from Google and it's played on a version of Google Maps. The portals, as they're called, are assigned by Google from player submissions and the game is at least partially driven by Google's data of demographic and usage patterns. Wherever people move around becomes a hot spot in the game
The game is still officially in beta test but it's not hard to get a game account (as long as one is happy to remain or become an Android user). I got an Ingress account in January. At least that's when I tweeted about my first impressions. I loved it, it's a fantastic idea, beautifully implemented. I didn't play it a lot though. Back then, there weren't enough portals around for it to be all that fun and I wasn't interested enough to play a lot. Plus, since the game requires one to visit actual places in the real world (a bit like hunting geocaches) it was getting harder every day for me to play it.
However, once I emerged from the nightmare, in need of motivation, Ingress was waiting for me. By then the portals were everywhere and there were a lot more active players. I found I had a few portals within walking distance of my home, and I started visiting them every day. First one, then two, then more of them. I was also running my exercize tracker but that was always just logging. I soon started saying I was going out to "check on my portals". There's no real need to visit a portal to check how it's doing although you do need to visit them in order to harvest some resources needed to advance the game, it was just something I said to explain what I was going to do. And so, the game magically started to assume the responsibility to motivate me.
Ingress became a reason to get out, the scapegoat I both needed and wanted in order to take another boring, frustrating walk. I was already getting very frustrated with how hard it was to reclaim what MS had taken from me. Ingress became a goal that bypassed some harder things and set something small within reach and I let it motivate me and I blamed it for quite a few unnecessary expeditions to places I didn't really need to visit when I'd much rather have stayed at home on the couch, dozing off, instead of worrying about where to find a toilet and looking nerdy stumbling about with my crutch in one hand, phone in the other, looking for a portal to attack.
I let the game become my focus whenever I could afford to (and I still do). It's reminiscent of Jane McGonigal's Superbetter (in "the game that will add 10 extra years to your life". If you haven't seen it, do it now. Just click. You're welcome)
Now I didn't have a concussion and I wasn't depressed. I didn't have ALS ("The best part of having MS: not having ALS") or any other terminal illness. I certainly didn't want to die, quite the opposite: I thought I might be dying and I didn't want to.
The allies I make in this game are my allies in extending my life and getting better. Superbetter in McGonigal's words. We even have lunch dates to play. If you were ever a gamer, you can imagine.
I still have MS to deal with, and I don't have any illusions that I will discover The Cure (that would be a beyond-epic win - see McGonigal's first TED talk) or that my recuperation will take me anywhere near where I want to be, healthwise.
However... Among the really, really odd, spaced out weird, strange symptoms I've experienced, a recent one kind of stands out: if you know how touch displays work, you know that most of them will route a tiny electrical current through your finger in order to find out where you're tapping the display. That current is normally too tiny to be felt, but since a few weeks back... I can feel it. I'm speculating that my body is relearning so much, that might be allowing it to pick up this little signal and register it in my brain.
Or, maybe it's my level 10 special ability in the get-well game. Sort of like an X-men mutation. I think I totally deserve one.
A roundabout story about little boys and little girls
Note: this is actually a very old post that didn't get quite finished or published at the time. I'm publishing it now because I think ... well, mostly because I think the links are cool and anyone who hasn't seen them should check them out right away.
Part one: ...one boy at a time
I've been thinking about angles on this for a while, and reading this Huffington blog by Lisa Bloom about rescuing one girl at a time, made it clearer to me what I wanted to say. Bloom talks about taking little girls seriously. This is excellent. It's also sexist and blind - not in the way society at large is, but in a different way. It misses a point that I believe is the key to finding a society that lets everyone as far as possible feel that they're making headway in their pursuit of happiness. On one level, the Huffington blog is excellent and you should read it. In my opinion it examplifies exactly how one might approach girls. Now I'm going to state something I don't usually say: In this context, boys are exactly like girls. It shouldn't come as a surprise to anyone that you should do exactly the same thinking when dealing with future men as with future women. Those future women will share the world with those future men, and if one of those groups aren't equal and free, neither is the other.
It's like how you talk about the weather when you're chatting with someone you don't know.
Perhaps grown-ups really are more likely to treat a little boy seriously than they are to do so with a girl. I would claim that this is not very true or valid, but perhaps there are relevant cultural differences or something about social strata or unusual personal experiences. Whatever the case, I believe the point valid. Boys need intelligent nurturing just as girls do.
Part two: Being valued for what you do, or for what you are
Now let's switch topic for a moment. I recently came across Glickman's box (I know it's not all his but that's how I think about it), read The Performance of Masculinity if you haven't (there a sequel too, you know the drill). I'm not big on gender stuff but this revealed something to me, about how my self is formed. One thing in particular stood out to me: Manhood is defined by people as achievement and position. This is in complete contrast to me with what love and value mean. Love is something that will survive failure, value is intrinsic in the being, not in how you perform or conform.
Now, I want to go back to the Huffington blog. The statement that Maya should strive to be valued for what she does, perfectly reasonable on the surface, is, in a way, a trap.
I'm 100% meritocratic (that is a word, isn't it?) in almost every context. The contexts where achievement is not crucial is within relationships, family and friendship - every place where I'm first and foremost a person. Achievement is relevant outside that private sphere, and only outside. My value as a person does not rely on success or performance. Cogs, objects perform. People don't need to perform to be lovable.
That's not to say one shouldn't strive to perform, it's just not what you base personal life on. If personal relations are based on achievement, they're business relationships, not love or family. You don't have to perform to be worthy of love. It might help with the salary though.
Part one: ...one boy at a time
 |
| Image from the Achilles Effect. Girls words. Read the article for an explanation, |
If you talk to a 5 year old boy, are you really going to address him in a more sane way than that you'd use toward a girl? I think not. You're probably going to use the idioms and topics that little boys are showered with, at least if you want to connect with him. Cause you think that's all he knows and it's what you think he expects. Like these graphics.
 |
| Image from the Achilles Effect. Boy words. |
It's like how you talk about the weather when you're chatting with someone you don't know.
Perhaps grown-ups really are more likely to treat a little boy seriously than they are to do so with a girl. I would claim that this is not very true or valid, but perhaps there are relevant cultural differences or something about social strata or unusual personal experiences. Whatever the case, I believe the point valid. Boys need intelligent nurturing just as girls do.
Part two: Being valued for what you do, or for what you are
Now let's switch topic for a moment. I recently came across Glickman's box (I know it's not all his but that's how I think about it), read The Performance of Masculinity if you haven't (there a sequel too, you know the drill). I'm not big on gender stuff but this revealed something to me, about how my self is formed. One thing in particular stood out to me: Manhood is defined by people as achievement and position. This is in complete contrast to me with what love and value mean. Love is something that will survive failure, value is intrinsic in the being, not in how you perform or conform.
Now, I want to go back to the Huffington blog. The statement that Maya should strive to be valued for what she does, perfectly reasonable on the surface, is, in a way, a trap.
I'm 100% meritocratic (that is a word, isn't it?) in almost every context. The contexts where achievement is not crucial is within relationships, family and friendship - every place where I'm first and foremost a person. Achievement is relevant outside that private sphere, and only outside. My value as a person does not rely on success or performance. Cogs, objects perform. People don't need to perform to be lovable.
That's not to say one shouldn't strive to perform, it's just not what you base personal life on. If personal relations are based on achievement, they're business relationships, not love or family. You don't have to perform to be worthy of love. It might help with the salary though.
2013-09-24
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.
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.
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.
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.
So that's what I'm doing: training, practising walking and moving, looking for a medicine that will let me handle the fatigue.
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.
2013-09-14
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.
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