Shattered Crystalline Matrix

On Friday, September 12, 2009, I awoke with a slight sensation of partial numbness / tingling on the underside of my right foot. I didn't think much of it at first, naturally assuming that I had just slept on my leg or something like that, and expecting the sensation to go away shortly. However, instead of going away, it in fact began to grow worse, spreading to parts of my right side all the way from the neck down. By the time Monday rolled around, I was convinced that something was definitely not right; due to my history with my mother's illness, Multiple Sclerosis was pretty much the first thing that popped into my head, but of course I knew that there were a variety of other possibilities (such as a compressed nerve).

I made an appointment to see my GP, who examined me, but couldn't find anything particularly wrong; the only thing out of place was an elevated blood pressure. He agreed with me that the symptoms were potentially concerning, and admitted that hypertension was an unlikely cause of these particular symptoms, but prescribed indapamide for it anyway, with instructions to notify him if there was any change in the presentation of the symptoms, and otherwise just see how things go. Over the course of the next week, there was not much change in the symptoms; they seemed to vary in intensity and coverage over time, but becoming a little more pronounced. The sensation on the right side of my chest/stomach was particularly irritating and disruptive to my sleep: when lying down, it felt as if I couldn't breathe properly due to my chest not moving, even though there was no such actual obstruction — a rather disconcerting sensation.

The following Monday (September 22), as the symptoms had shown no signs of improvement, I contacted my GP again; he requested that I have my blood pressure tested again, to see if that had gone down yet. Strangely enough, it hadn't — the reading came in at 176/96 — but he referred me to a neurologist anyway, with an appointment arranged for the next day. The neurologist ran me through a more comprehensive series of tests, checking for loss of sensation, abnormal reactions, and so on, but also couldn't find anything specific; all of the affected areas felt "funny", but there was no loss of actual sensation, and all of my nervous responses were normal. He did check my blood pressure again, which was at around 160/80, but he suggested that this was probably just due to stress / anxiety, and that it would normalise after the whole situation was dealt with. His final conclusion was the most likely cause was something transient that would go away by itself; possibly a side-effect of a viral infection, just plain stress / anxiety, or various other possibilities along those lines. However, he wanted to send me for an MRI "just to be safe", even though he expected the results to come back clear, and I agreed to the procedure.

The MRI was two days later; not having been for an MRI before, I was not sure exactly what to expect, but the whole experience turned out to be rather boring. For one thing, I arrived around 15 minutes early for the appointment, only to find that they were running around 20 minutes late, so I spent a good while waiting around. The MRI itself consists of lying down on a tray of sorts, being instructed not to move your head at all, and then being slid into the machine itself for a good 30 minutes. I was somewhat bemused when they hauled me out halfway through to inject the Gadolinium dye (used to increase contrast on the scan), with the nurse giving me strict instructions not to move my head, and then quizzing me about which side my veins were better on as she attempted to find one in order to perform the injection. (How the heck would I know? I can't even see my veins right now!)

I received a call from the neurologist's rooms the following week to set up a follow-up appointment to discuss the results of the MRI. I figured this was just standard operating procedure, but once I arrived for the appointment and he began easing very slowly into the subject of the results, I immediately figured something had to be up, and indeed something was up. The MRI showed several spots of intensity, "compatible with active demyelinating / M.S plaques" thus indicating lesions and associated swelling in the surrounding area, and suggesting that I had in fact undergone several attacks / relapses prior to this event without even realising it.

According to the neurologist, the diagnostic criteria for Multiple Sclerosis would still require an additional "event"; either another presentation of symptoms consistent with a second relapse, or a subsequent MRI displaying further progression of the disease, but basically the reality was that I have MS. Some subsequent research indicates that in the (extremely unlikely) event that there is no further progression, this would be known as Clinically isolated syndrome. He then ran through the possibilities for treatment; at this stage, that basically amounts to the beta-interferon-related drugs, which do not cure the disease, but have a modest effect in slowing the progression of the disease. He also mentioned that various next-generation drugs are likely to become available within the next several years, which will likely be even more effective at slowing the progression. He also advised me to go onto the standard post-relapse treatment, which is a pulse of cortisone administered intravenously; this has no effect on the long-term progression of the disease, merely assisting with the short-term recovery, but he suggested that it would be easier to get approval from my medical aid for chronic medication if we were doing everything "by the book".

(One amusing part of this was receiving my copy of the MRI results in one of those huge X-ray print envelopes... containing nothing but a CD with the actual imagery, and an A4 printout with the radiologist's report, leaving a whole lot of empty space in the envelope.)

As there is, as yet, no long-term data on the comparative effectiveness of the different drugs that are available; the first of them was only approved in the USA in around 1996, and of course it took longer than that for medical aids etc. to begin paying for it, so most people have only had access to the drugs for around 5 years, probably 10 years at the most. I decided to go with Avonex solely on the basis of it being a once-a-week injection, as opposed to the others which require more frequent injection; although, as an intramuscular injection, the procedure will be somewhat more unpleasant. As of this writing, I am still awaiting a response/approval from the medical aid for chronic medication for MS.

My prognosis is currently reasonably positive; as the current treatments act to slow the progression of the disease, beginning treatment as early as possible in the course of the disease is obviously crucial to success of the treatment. With luck, the disease will be slowed to such a degree that by the time the symptoms become severe, I will already be dying of something else anyway. One interesting fact is that an early age at onset is correlated with a more positive progression of the disease, so my relatively young age at this point in time is not necessarily a bad thing. However, there's a huge degree of uncertainty in all of this, so the only real way to know how things will turn out is to wait and see.

Once upon a time, a South African missionary couple moved to the beautiful county of Zimbabwe. In total, they would come together three times to recreate the miracle of life, determined that their children should grow up amidst this precious Jewel of Africa, raised within an environment of love and joy. Alas, this story does not end with "...and they all lived happily ever after"; the first in a series of many tragedies was to strike in 1989. Merle Ann Jeanette Seligmann (Kilroe-Smith), a devoted mother and loving wife, began to experience double-vision unexpectedly whilst driving. After going before the usual procession of doctors and specialists, a neurological diagnosis of Multiple Sclerosis was finally made. As is typical of the disease, the initial symptoms disappeared not long after they presented, but the ever-present storm clouds could now be seen looming on the horizon, a Sword of Damocles inescapably threatening to drop down sooner or later.

The next in the series was to strike in 1994. Karl Johan Seligmann, a devoted father and loving husband, made the fatal decision to advance his return home to Zimbabwe from South Africa by one day; while driving through the area near Messina, another driver lost control of his car, causing a collision between the two vehicles. It would later be determined that while all of the identifying information provided by the responsible driver (ID, vehicle registration number, and so on) was fraudulent. Johan was rushed to Milpark hospital, where despite having sustained a dangerous head wound, he showed great promise of recovery. However, in June 1994, Johan passed away from a pulmonary embolism caused by a blood clot that travelled into the lungs; physicians had been hesitant to safeguard against such an event through the use of anticoagulants, due to the risk of reopening the equally dangerous head wound.

Meanwhile, time had passed on, and the world with it; the family chose to move to South Africa at the end of 1994. Merle's disease continued to progress; along with various other sensory malfunction, her ataxia began to intensify until she could not drive, nor walk, nor even crawl any longer. Throughout all of these experiences, the bonds between the remaining family members continued to grow and intensify, rather than showing any sign of weakening or fracturing. The ultimate test came when the decision was made to move Merle into a nursing home, as continuing care for her at home was no longer practical. This resulted in the physical break-up of the family; the children went to live out their lives with various different relatives. The bonds between them remained strong as ever, however; and they soon began to show their true capabilities as they began to carve out lives of their own, despite the adversarial odds they were faced with.

This chapter was finally concluded in June 2003; Merle passed away due to MS-related complications, an intact personality and intelligent mind trapped within the prison of her own body, and even her own brain, unable to communicate at all with all but those closest to her. Left behind were the ultimate product of her incredible yet doomed marriage union: their three beautiful and brilliant children, Tristan, Tiffany, and William.

This is a bit of a meta-post; an introduction and disclaimer, if you will, for an upcoming series of posts. First up, the warnings: these posts are going to deal largely with personal issues of mine, how I'm dealing with them, and my philosophy surrounding them. At times, things may get intensely person, emotional, even upsetting; hopefully there will also be some bright shining inspiration along the way to balance it out. If this this sort of thing doesn't interest you, or makes you uncomfortable, please feel free to skip over these posts. I'll be tagging them all "MS" for reasons that will soon be clear if you haven't already guessed at them, or don't already know part of the story.

Secondly, due to the personal nature of these posts, you may feel obligated to respond in some way; perhaps to express sympathy and support, perhaps to share supposed words of wisdom, or perhaps in some other way. Well, please don't; I am in no way hostile or opposed to any of those things, but these posts are emphatically not a cry for help or attention. I've received endless support and sympathy from those around me since the news first began to trickle out, so I'm not in trouble here; I'm blessed with wonderful friends and family who have supported me throughout my life. If you feel that describes you, then by all means, join the chorus of responses. However, if you really just don't care, that's also fine! I'm not going to be upset or offended by that attitude; indeed, I would rather you acknowledge that than try to dredge up false sympathy and words filled with meaningless hot-air.

If you are interested, but purely for academic reasons, or reasons of curiosity, that's also okay! Part of the reason I'm putting this out there is that I think there's a lot I can say that will be interesting for reasons on an entirely impersonal level, and I certainly won't be upset by people who are drawn solely to that. If you want more details, or have questions you want answered, then please ask away.

I don't want ls anymore. For that matter, I don't want directories anymore; I'm not even sure I want files anymore, but let's leave that one alone for now. So, before you conclude I've taken leave of my senses: of course, I don't mean just deleting the /bin/ls binary, and ripping functionality out of all existing filesystems. All of that can still remain on a low level, and that may well prove useful in implementing a higher-level layer; what I mean is that I no longer wish to be concerned about all of that anymore. Why not? Well... story time!

Once upon a time, the web was brand new and unknown; indeed, the internet itself was relatively small and new and experimental. You could easily keep a list of every website around, and so people just did that. Over time, the number of websites grew to the point where keeping a flat list was no longer practical or useful. Enter Yahoo! Other directory projects existed, of course, but Yahoo! was the most successful and well-known; they built a directory of (just about) every website, broken down into an impressive array of categories. More time passed, and finally the directory system began to break down too; it was simply not possible to list and categorise every new website due to the rate at which new sites were popping up. And thus was born the age of search engines; the technology has improved today, and you'll probably be using Google instead of Yahoo! — but today, when you want to find something on the internet, the first step is generally visiting a search engine, not navigating some directory-like site.

So, that's what I want for my own filesystem too; I don't want to deal with categorising a file in my directory structure, and I don't want to deal with digging through that structure to find it again later. I just want to associate sufficient metadata in addition to the data itself, so that I can search for it later and find it without difficulty. What this really amounts to is decoupling the view of the data from the data itself; instead of hardcoding one particular view (ie. the filesystem directory structure) into my data, I can instead choose to view the data any way I want at a later stage.

How do I get there from here? I guess that will have to wait for my next post.

Down the way, where the nights are gay,
and the sun shines daily on the mountain top;
I took a trip on a sailing ship,
and when I reached Jamaica, I made a stop.

But I'm sad to say, I'm on my way;
I won't be back, for many a day.
My heart is down, my head is turning around,
I had to leave a little girl in Kingston town.

— Lord Burgess, Jamaica Farewell

He is my only one, now that my time has come;
now that my life is done, we look into the sun.
"Seize the day, and don't you cry;
now it's time to say goodbye.
Even though, I'll be gone;
I will live on, live on."

— Dream Theater, A Change of Seasons

I just sent a mail to the Dosage mailing list announcing my retirement as maintainer; and this marks another step in the internal reorganisation of my personal project "workspace", as referred to in my previous post. Other projects going back on the shelf include Kali (the replacement services package being developed for Shadowfire), Eridanus (an IRC bot based on Mantissa and Twisted to which I haven't contributed much besides design advice), txAWS (a Twisted library wrapping Amazon Web Services APIs), txSmug (a Twisted library wrapping SmugMug's API), and FlyingCircus (an IRC quote database based on Mantissa).

What does being "shelved" entail? Well, firstly, it doesn't mean that I'm giving up completely on any of these projects, burning the source code, or refusing to ever work on them ever again. It does mean that I won't actively be thinking about or working on any of these projects; I might be persuaded to help someone out who's interested in taking over from me, but otherwise they're getting kicked out of my mental space to make room for working on other things.

This isn't necessarily the kiss of death for any of these projects; Dosage will slowly degrade over time, I guess, but maybe someone else will step up to the plate. Eridanus never really got any contributions from me, and the existing functionality isn't going to suddenly break. txAWS and txSmug are far from complete, but if you don't need anything beyond what they already provide, they're perfectly usable, and txAWS has other developers that may provide further contributions. Finally, FlyingCircus is pretty much "complete"; there's always room for improvement on any piece of software, of course, but it's perfectly usable as-is.

So, what am I going to be working on? Well, as always, most/all of my projects make use of Twisted and Divmod, and I'll continue contributing changes to those projects based on requirements of my own projects. Methanal is another project that falls into this category; and as a dependency / spin-off of the code base I work on for my day job, it'll probably keep ticking along. I'm not planning to package any new software for Debian, but I'll probably keep maintaining the software I'm already involved with, since there's not a huge amount of effort involved.

The "big one" is probably going to be EdgeVerse. In case you couldn't make any sense of the useless description on the website, or were too lazy to visit it, EdgeVerse is a project that's basically all about tracking media: books, movies, music, TV series, whatever. This includes tracking what you already own and have watched, tracking new releases that you're interested in, and of course tracking all of your friends too. It's ultimately a pretty ambitious project, and I'm not at all confident that it'll be able to succeed, but for now I'm going to be giving it a try (hopefully).

I'll no doubt be posting more about EdgeVerse in the days and weeks to come; if you're curious about the status of any project I haven't mentioned here, feel free to inquire in the comments, or by email / IRC / FriendFeed / whatever.

And the hope I had is dying;
and what we had has come undone;
then your smile, it melts away again.

— Caribou, Melody Day

As part of my new effort to actually start making progress again on some of my projects, I'm going through all the ones on my metaphorical desk, and deciding which ones to put back on the metaphorical shelf. One of those projects is the Debian New Maintainer process (and then more generally, being a Debian Developer); unfortunately, I've come to the conclusion that this is one of those projects that needs to be shelved. Some of the delays in my progression through NM can be attributed to waiting on my AM and so on, but largely it has been a matter of not having the time to spend on NM. As time rolls on, it seems even less likely that I'll have the time to finish the process off, much less actually doing real work as a DD; there's just a handful of packages I've ever cared about, and I'm starting to care less and less about all of this in general. I'm not sure yet whether I'll keep maintaining the packages I'm currently involved with, or just cut them loose (almost all of them have co-maintenance, or no longer matter much).

This decision has been a bit more disturbing than I thought it would be, and I'll probably think about it a bit more in the days to come, but for now it looks like this is the end of the road for me.

Stay tuned for more news about what other projects are going on the shelf, and which ones may be seeing some real activity on my part.

Zed Shaw of, well, internet fame (or infamy?) recently posted about the GPL, and why he uses it as the license for his software. I understand his reasoning, and I think I even agree that the GPL is the best way to achieve his goals; however, for my own work, I strongly feel that other issues take priority over the ones he raises.

For starters, there are practical issues with the GPL. The biggest of these is simply the fact that it is a copyleft license; by their very nature, any two copyleft licenses are either legally equivalent, or incompatible, and so this just doesn't scale. Even the GPL v2 is mutually incompatible with the GPL v3, which has presented some people with some unexpected nasty surprises. This kind of compatibility barrier causes non-trivial damage to the Free Software ecosystem.

Another main benefit of Free Software projects is that the community is not isolated into silos; everyone can freely mingle as they choose, collaborating on changes and so on., and this even extends to developers working on proprietary software projects. The GPL + proprietary model breaks this; the companies that have to purchase a proprietary license are effectively isolated from everyone else due to the nature of those licenses, and so they're likely to just stay locked behind closed doors, rather than supporting the project through interaction and contribution.

So, my motivations and reasoning are quite different from Zed's. I don't want to build a shrine to my awesomeness that all passers by can see; I don't have any objection to that goal at all, it's just not something that motivates me. I don't want recognition or credit for the work I do on my projects; I won't object to any kudos I receive, of course, but ultimately I just want those projects to succeed, even if it's at the cost of my own ego or fame. On the flip side, making use of GPLed code, even in my own Free Software projects, presents such a significant burden that I'm likely to think very hard about whether the dependency is worth it, rather than just recreating what I need on my own. I'm not sure that Zed's model of Free Software or "open source" projects is actually something that can survive in the long run; we need to play to our strengths, not our weaknesses...

Oh, in passing, I'd like to add that I'm very happy to tell people about how awesome the other projects I rely on are, and in fact I do so quite often; not all of us are "plagiarists", even if it looks that way to Zed. Then again, I don't (yet?) use any software he's created, so I guess that doesn't help him, although I still have a lot of respect for what he's accomplished.

And you run, and you run to catch up with the sun, but it's sinking;
racing around to come up behind you again.
The sun is the same in a relative way, but you're older;
shorter of breath and one day closer to death.

— Pink Floyd, Time

Surviving change is perhaps one of the hardest things to do, and yet it may be one of the most important abilities to master for a species, idea, movement, company, or even an individual in order to be assured of survival. The issue of changing "with the times" is often explored in fantasy / sci-fi fiction involving immortal beings such as vampires, robots, or even sword-wielding immortals from the highlands of Scotland. In Stephen King's Dark Tower series, the gunslinger Roland Deschain describes his world as having moved on; and while this may have occurred in a more dramatic fashion than most beings on Earth are likely to experience, the failure of much that once existed in Roland's world is still reflected in the pattern of our own world.

One of the key ingredients of the human life form is the ability to dream, to hope, and to otherwise plan for a future, however vaguely. Following up on those dreams and plans involves a varying amount of risk, but the possibility of equal or greater rewards is always there to compensate; being risky and daring along some axis is unavoidable in the pursuit of great things.

Unfortunately, over time, these dreams lose their relevance, becoming fruitless pipe dreams. As time slips inexorably onwards, the reality of life diverges more and more from the dream path until the dream becomes unattainable, or even undesirable. If one clutches to these faded dreams, they too will be dragged further and further away from reality, losing touch as they go; this is a trap that must be avoided in order to survive.

As humans, we carry around a tremendous amount of emotional and intellectual baggage. Of course, a large quantity of this baggage is absolutely essential; without any knowledge whatsoever, the human mind would be a pointless empty vessel. The difficulty is in discerning which items of baggage are useful, and which are not; since we can't figure this out, we just keep absolutely everything, accumulating an ever-growing collection. Eventually the weight of the baggage is so great that we are unable to take even one step further; and so there we remain, as the world slowly passes us by, leaving us to fade away in the emptiness that is left behind.

To survive change, one needs to truly accept that the world moves on. One may strive and struggle as hard as possible to control the direction it moves in, but the passage of time is something that ultimately cannot be reversed. Not all change is for the better — in fact, much of it may be for the worse — but once all is said and done, refusing to accept this change merely disconnects you from the world, ensuring that you will never again influence it.

The past holds many lessons that we might do well to rediscover and revive. One may often be tempted to dig up the corpses of old ideas, and revive them through some feat of necromantic sorcery, but such an endevour can only result in a doomed Frankenstein-like monster with no chance of survival. Take anything out of the environment or context that provides the ingredients necessary for it to live, and it will have no hope of survival; in addition, the new environment will have its own peculiar strengths and advantages, which need to be considered and taken advantage of for maximal effect.

Recognising and accepting the changing world is but the first lesson in surviving change, but it is a critical lesson to learn; ignore it at your own peril.

If the light of a thousand suns
were to rise in the sky at once
it would be like the light
of that great spirit.
— भगवद् गीता

I remember when we were so young,
you embraced my fears and made me strong;
but never did you actually hold my hand,
your silence no one would understand.
— Dream Theater, Speak to Me

I discovered this weekend that Fravia+ passed away about two months ago; I had read about his illness some time ago, but somehow missed the announcement of his death until now.

For those of you unfamiliar with this character, Fravia was one of the old school reversers (as in reverse engineering); or "hacker", in the sense that I personally identify with. In those days, knowledge was handed down from the great wizards like +ORC and others, but it was Fravia that truly brought the message to the masses (you may find his old site archived in various places). This was not merely about "cracking" software copy protection; but about taking things apart, understanding the way they work — and not just software, either. Later, he turned his focus to the meta-art of searching; seeking out information, wherever it may be hidden. His eccentric tone, which some no doubt found to be pompous and patronising, was something that endeared me to him from the very beginning; and the communities that sprung up around the gardens he planted were true jewels gleaming in the darkness of cyberspace.

Unfortunately, as time moved on, I lost touch with these communities, as I have lost touch with so many others. I still feel a strong connection to them, but I ceased participating in the interactions for whatever reasons, as my focus moved on to other places; and this is really what this post is about. Somehow, despite my efforts to the contrary, I'm unable to cling to everything I hold dear; like trying to gather the sea into one's hands, it just flows through my fingertips, and I don't know what to do about it. In some ways, this is similar to another problem I have previously described; dealing with ideas that are too big to hold in mind all at once. Yet, this is not quite the same issue; this is more of a social issue, wrapped up with issues of time and concentration. I somehow need to become my future self, without losing that which comprises my past self; to gain new understanding and insight, without losing that which was previously important.

And so, I find myself conflicted and disquieted; and most of all, mourning the passing of a great man, someone I would have liked to number amongst my friends, even if it were not so. Sail well, dearest Fravia, you are someone who will not be forgotten quickly or easily; and to those who perchance remember an old stranger, fellow traveller, or friend, I miss you all somehow, somewhere...

As a child,
I thought I could live without pain,
without sorrow.

And as a man,
I found it's all caught up with me;
I'm asleep yet I'm so afraid.

— Dream Theater, Metropolis Pt. 1

So if you're empty come with me,
and watch the world go by;
we'll laugh and laugh until we bleed,
just so that we don't cry.

— Cypher, Exit Stage Left

A good friend asked me a question the other day, something like: "What's your happiest memory of your parents?" I struggled quite a bit to come up with an answer to this question, and that effort really brought something into focus: that is, the difference in the way I perceive misery and happiness. Indeed, if you've read some of the "feeling" pieces of writing that I've posted on my blog in the past, you might easily come the conclusion that my life is defined by great misery and sadness; but while there's certainly been enough pain and suffering in my life, I would generally characterise it as one of happiness and contentment.

So, why all the sorrow and darkness? As I tried to think back to happy memories, I realised that I couldn't recall any single specific moment of happiness in my life; all of the happy times just blur together into one long stream of feelings, a sea of warmth and comfort. By contrast, the moments of sorrow stand out like brilliant points of light, frozen in the stream of time, individual moments of misery in a background of happiness. I can recall with frightening clarity most of these moments, down to the lines and bumps of the furniture, the dirt on the floor, the background sounds and noises, even the scents in the air; and most of all, the exquisite sensation or emotion of sorrow itself — what might perhaps be described as emotional masochism.

As a result, I find it hard to write about happiness and joy; there are no details to lock onto, no sensations to describe, no images with which a tapestry of metaphor may be weaved. Perhaps some day I'll find a frame of reference within which to describe these things; until then, I guess I'll continue to write about sadness and misery.

(Incidentally, I'm trying to work on bringing an actual character to life in their own right, rather than as a mere prop through which I attempt to convey a feeling; so with any luck, you'll be seeing some writing in that vein shortly...)