Shattered Crystalline Matrix

A suited man smiled, said:
"It's just a matter of time;
you can have the world at your feet by tomorrow,
just sign on this line."

Hold tight, limelight;
approaching the paramount,
with the sun in our eyes;
fearing family ties, legalise, compromise.

To the practical observer,
it's just a matter of time:
you can deviate from the commonplace,
only to fall back in line.

I understand mine's a risky plan,
and your system can't miss;
but is security after all
a cause or symptom of happiness?

— Dream Theater, Only a Matter of Time

Wow, it's been far too long since my last post; and since I left things on such a dismal note, I decided to bang out a quick post.

It will probably come as no surprise to hear that I was way too busy and stressed out around the time of my last post. Since then, I've not actually paid much attention to matters of health at all, and they haven't intruded on me either; I've also spent the last few weeks with my family in Cape Town, doing pretty much nothing, just getting away from it all. Having a chance to step back, relax, and look at things from a clear perspective has allowed me to make some decisions which will probably ease my stress levels in the future, although I can't really discuss those here and now.

In other news, I've finally gotten around to the last step of migrating Dosage development to Launchpad: the source repository has now been converted to bzr. I've also started the process of going through the outstanding contributions and either integrating or discarding them, so I guess you could call that progress.

Jonathan has been doing some awesome work on a new tab widget in Methanal, which will serve as a vastly improved replacement for Nevow's "tabbed pane" widget, as soon as somebody (ie. me) gets around to reviewing the code.

And… more later.

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.