I'm seeing any number of themes in this piece that call out for discussion, only a few of which are being picked up here.

Mental health, stigma, betrayal, and volition

The whole nature of mental health and stimatisation runs deep in contemporary society and this article. Even with acknowledged issues, Williams likely hid the most troublesome symptom, hallucinations, from his wife and others.

Unlike physical disease or injury, which can be considered happening to us or our containers -- bodies -- disease of the mind fundamentally affects our very ideas of identity and perception. When a person's responses to the world change, when their recollection of events turns unreliable, when their response to the present becomes chaotic, when they themselves cannot trust the messages of their own sense, you're diving into some very deep, dark waters. Interacting with, caring for, and living with the mentally ill is exceptionally taxing. Norms of social behavior fail to exist, and the least interaction can become both a trial of comprehension and a battle of wills (though not necessarily this). And patterns which were once firmly established change, by the week, sometimes by the day or hour.

This is a reason that the role of primary caregiver is such a tremendously challenging one.

The response of others, including medical professionals, is also taxing. Normal expectations of volition and will simply do not apply. When there's an organic, chemical, or pathological underpinning to behavior, it's not simply a matter of "just try harder" or "you're smart and capable". To the point that comments suggesting this themselves become tremendously painful.

Celebrities and disease

For better or worse, a characteristic of fame and celebrity is that they focus attention. Susan Schneider Williams's essay on her celebrity husban, Robin Williams's encounter with a rare, difficult to diagnose, and profoundly

There's a tension at HN over whether or not authors or personalities matter, are relevant, or should be disclosed. I feel rather strongly that they do. HN management disagree. There's a recent discussion of that here:

https://news.ycombinator.com/item?id=12573874

The fact that this story concerns Robin Williams, famous and beloved comedian and actor, is salient if only because it means that he received care, diagnostic, and autopsy attention that few other patients would receive. If not for his fame and affluence, this would be just another tragic death, likely by suicide and depression. Instead, we've a deeper understanding of the real mechanisms at play.

The story has similarities to the Irvine "PTA mom" story -- a drugs bust turned into a story of framing and false accusations. But for particulars of place and social status, that story could have had a very different ending.

https://news.ycombinator.com/item?id=12616118

Disease as metaphor

The inability to rely on established norms, prior patterns, experiences, and personality are where I see the titular concept coming into play. The condition here violates both the patient's and the author's fundamental trust in the Universe. Robin Williams couldn't trust his own senses, and was, literally losing that which was most central to any of us: his mind. Susan was losing the friend, partner, and husband, to something she couldn't see, couldn't name, didn't understand, and couldn't combat. I cannot think of a better description of terror than that: to be threatened by an omnipresent, invisible, awesomely powerful, and hugely destructive enemy, with no sense of when or how it would strike next, and no effective means to defend against it.

Systems, understanding, and response

There's a thread here about the failure of modern medicine, and perhaps the US healthcare system specifically, to address sufficiently complex and systemic conditions. Again I'm disappointed in much of the HN follow-up, which incorrectly interprets the @guelo's comments as being specific to programming. They are not.

The problem is a general one: our perceptions -- both our "five senses"[1] and those extended through technically-mediated, extended, or created sensing capabilities -- only inform us of very topical conditions. It's up to the diagnostician to draw deeper inferences.

As I commented on the linked thread, perversely, the deeper and more complex our understanding and knowledge, the greater the tendency toward non-systemic thinking, or at least of creating a loose flying swarm of individual specialist none of whom have a large-picture view. The roots are numerous (taking a systemic view of non-systemic vision): education, specialisation, compensation, healthcare administration, research, drugs and therapy development, and more. The result is having to run rough herd over providers to ensure that the full patient is being considered, not just some interesting subsystem behavior.

https://news.ycombinator.com/item?id=12620044

Understanding vs. cure

There is, finally, the problem that understanding is a possible route to a cure, but is neither sufficient nor necessary. There are treatments which have worked without understanding (salycilic acid, from willow bark, against headache, and citrus, against scurvy, as two historical examples), and there are cases in which additional information remains stubbornly ineffective in promulgating effective treatment.

A good friend of mine died some 25 years ago from a condition which was then rare, poorly understood, difficult to diagnose, and stubbornly resistant to treatment. A quarter century of medical advance has rewritten that sentence only very slightly: the specific chromosomal nature of the condition is now understood, and a genetic test could identify the gene transposition triggering the condition (though not the triggers of that transposition, yet). So to that extent, the condition is better understood.

It remains only poorly treatable, with many cases having a prognosis of 50% to 90% mortality, and the specific therapies date to the 1970s, 1960, and 1950s, or before, with little if any change. One's views of medical advances can be somewhat coloured by such experiences, and what I've observed is that much of what's proclaimed to be improvements in medicine can be broken down two two general mechanisms:

1. Improvements in baseline medical care available to all.

2. Specific and frequently very highly targeted advances. These can be tremendously beneficial, within those narrow areas, but as with complex keys, the locks fitted are frequently few in number.

There are exceptions and potential exceptions. Broad-spectrum antibiotics and development of vaccinations both provided tools to address a wide range of threats. Gene sequencing and synthesis, and stem cell treatments, offer some promise of broad new areas of therapeutic mechanism. In large part though, genetic medicine has been more diagnostic than therapeutic.

What understanding of mechanism does allow though is twofold.

First, having a known enemy, one who can be faced and seen, removes a significant element of the dread of the unknown assailant, which can have some comfort.[2] Even if the result is no net curative medical therapy, the path becomes known, and perhaps mechanisms for symptomatic treatment or palliative care.

The hope, of course, is that knowing cause one may focus on cure, or at least, to borrow from the military metaphor, counterattack. That's not certain, but it is a possibility.

Another element, tying in with the notion of systemic approach, above, is the thought when faced with some set of phenomena, a complex of symptoms, of considering "what is the possible common underlying element here?" Again, treatment of independent symptoms by specialists tends to draw away from this, but a reasonable thought, not just in medical circumstances, is: supposing we did have a deeper understanding of this, or more complete diagnostics, what then could we do or could we hope to achieve?

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Notes:

1. There are actually significantly more than five, though the convention "five senses" of sight, hearing, smell, taste, and touch, persists. A good general text on perceptual psychology makes fascinating reading.

2. There's a surprisingly relevant concept from Adam Smith's Wealth of Nations. Looking up his use of the workd "invisible", I found two mentions. One the greatly misrepresented "invisible hand". The other though refers to the "invisible death" faced by combatants in modern (that is, gunpowder) warfare:

*the noise of firearms, the smoke, and the invisible death to which every man feels himself every moment exposed as soon as he comes within cannon-shot, and frequently a long time before the battle can be well said to be engaged, must render it very difficult to maintain any considerable degree of this regularity, order, and prompt obedience, even in the beginning of a modern battle. In an ancient battle there was no noise but what arose from the human voice; there was no smoke, there was no invisible cause of wounds or death. Every man, till some mortal weapon actually did approach him, saw clearly that no such weapon was near him.... In these circumstances...it must have been a good deal less difficult to preserve some degree regularity and order."

Which is to say, Smith here is addressing specifically the terror of facing an unseen, unpredictable, and deadly threat.

https://en.m.wikisource.org/wiki/The_Wealth_of_Nations/Book_...