I attended this years annual American Academy of Neurology meeting in Vancouver and Susan Schneider Williams talked briefly at one of the plenary sessions. Her speech was shorter than what was in this text and yet had a similar message.
It was pleasant overall as it gave the plenary session that day a more humane feel. It is very easy to get wrapped up in the biochemical underpinnings of diseases and all the hype of the clinical trials being presented. We were reminded briefly of how their is a person behind all those symptoms and how the condition can affect the family as well.
This piece was particularly haunting for me, having watched my father go through almost the exact same thing, including the PD diagnosis, lots of confusion about what was wrong with him, etc.
LBD is a horrific - the hallucinations are utterly terrifying to watch someone go through. My father did not commit suicide, however I have often thought that I wish he had, his decline has been so rapid and horrible - witnessing his fear has been torturous - today he cannot move or talk, and is barely conscious, it is simply a matter of time until something like pneumonia will take his life. His symptoms started at age 58.
I don't want to come across as crass, but have you considered euthanasia? My father has lived through brain cancer for 9 years until he opted for that, before that he was waiting for something like a heavy cold to take him. Thing is, if you don't go outside the house anymore you have a very low chance of getting sick.
A common failing I've noticed in complicated multi-symptom diagnoses like this disease is that doctors tend to treat each symptom individually instead of trying to connect the dots of all the symptoms. As a programmer used to debugging complicated systems it makes no sense, my first inclination when multiple things popup at the same time is to look for the underlying root cause.
I think this sort of thinking involves a false equivalence between computer programs and the human body.
Going out on a limb I'd say that debugging is a skill that's learned in practice, not taught, so if it was as easy to "debug" the human body as it is to debug a computer program, why would computer programmers be better at debugging in their domain then doctors are in theirs? Surely doctors would have varying degrees of skill in this regard, but so do programmers, and it's likely that a) "good" doctors would count this "debugging" as one of their most important skills and b) that Robin Williams had really good doctors.
These factors seem to make diagnostic medicine quite challenging:
* It's often impossible to gather the information you need to make a certain diagnosis without an endless series of tests that may be prohibitively expensive or dangerous to the patient's health themselves.
* Feedback to attempts to "probe" the problem e.g. trying a course of a certain medication may be very difficult to interpret because of delayed reaction, individually unique responses, and/or other external factors that make it difficult to attribute some observed effect to cause X.
* The patient is not getting any younger this whole time, and may become impatient with the process and accept an imperfect solution or simply not have enough time due to the progress of their illness for all avenues to be explored.
* Patients may deliberately hide some of their symptoms, e.g. the article's author's theory that her husband was keeping hallucinations secret.
Systems programmed by humans typically have coding standards. The human body on the other hand has been haphazardly developed over billions of years by the principle quick hack on top of quick hack on top of quick hack.
It's a complete mess of spaghetti code where anything that happens is the result of dozens of sub-systems trying to invoke or override each other.
> my first inclination when multiple things popup at the same time is to look for the underlying root cause.
The problem is that programmers can make a hypothesis and then test while doctors can't.
Doctor's are effectively engaging in "shotgun debugging" because they don't have good "this cause to this effect" for a lot of systems. The drugs they have to effectively "unit test" don't have narrow effects, so those add extra uncertainty.
They're getting better. And I wish the "deep learning" people would target this much harder--it's almost an ideal candidate (we have these symptoms--we ran these tests--give us a probability list of the top 5 things we should be ruling out next). However, getting the data seems to be the problem.
You treat the symptoms because the patient is suffering, not to solve the problem.
If you have a live system bringing in millions of dollars everyday but it hangs every once in a while, do you reboot it, or attach a debugger to it while it's hung?
I think the old "if all you have is a hammer.." applies here.
My father is now being treated for dementia, unknown cause, but they suspect Alzheimer's. Several months ago he was hospitalised after a psychotic break. When he was being admitted, I told the psychiatrist about my late grandfather's dementia but it went unnoticed. After several months of antipsychotics (which did remove the delusions) and antidepressants his condition did not improve. In the end she finally ordered brain scans and performed a full barrage of blood tests and a neurological assessment to discover there is brain sclerosis.
You see the same thing in nutrition and exercise. A lot of people want to boil down every issue to a single factor. Either fat is the only problem or sugar or carbs or whatever. The body is a complex system and a lot of factors have to be in balance. But I guess that's hard to communicate and work with.
What you call a complicated system is trivially easy compared to the complexity of the human body. The truth of the matter is that humans alone are simply not good at this. There is way too much information that needs to be considered both about the individual patient as well as medical knowledge of diseases.
What is necessary is to force the medical community to build up better tools for medical diagnostics and the storage and exchange of patient health information.
Lack of systemic thinking across a great many areas is unfortunately overly common. Including in software and technology, but hardly limited to that.
Answering the criticism raised in several responses, it's not that a deep and systemic understanding is specific to software, and inapplicable elsewhere. Yes, the fact of a human-constructed system may make the intention of a system clearer, and its detection easier, but the entirety of existance, at least as our brains are fundamentally equipped to make sense of it, is a system. Primary phenomena are rooted in underlying systems, prerequisites, causes, and interactions. "Five whys", or any other set of inductive explorations, is not a privilege of software systems and workers alone.
The asystematic approach is one that is, paradoxically, a result of increasing complexity of knowledge itself. Rather than individuals spanning multiple disciplines or even subdisciplines or specialties, they're are trailed off into individual leaf-nodes of research, skill, and application, and efforts to break out of this pigeon hole are obstructed at virtually all levels of the system.
Pay and reward are largely commensurate with specialisation. Reputation is contingent on specialisation. Procedure compensation is contingent on specialisation. Access to diagnostic equipment is contingent on specialisation.
And so forth.
Each individual member associated with treatment has their own very small aspect as their particular area of concern.
In software, it's like the person who resolves a bug in medical pricing codes by simply applying the value that was expected in that specific instance for a price, rather than, say, fixing an algorithm or lookup table such that the right answer appears regardless of specific circumstances (I'm paraphrasing from an actual bug/fix story seen recently). From the point of view of a naive management system, that worker has a very high bug resolution rate -- but they're treating the symptom only of an underlying software deficiency.
In a similar vein: you can "fix" a water spot on a wall by repainting the wall.
Or you could replace the plaster that's been waterlogged.
Or you could seal the exterior wall leak that's allowing water in.
Or you could shore up the foundation that's settled, allowing the wall to leak.
Or you could address the underlying geology -- a sinkhole, ground subsidence, a fault line -- that's causing the foundation to move.
Paint is cheaper than plaster is cheaper than siding is cheaper than concrete is cheaper than earth-moving equipment. And there may be an appropriate level of fix. But walking through the problem to its fundamental source(s) provides a full understanding of the problem.
This is obviously painful for the family and the fans, and I hope my words are not taken in the wrong way.
But I really wish Americans (and yes, I think it's mostly Americans who have this tendency) would choose their words more carefully.
If I am not mistaken, we are talking about a disease. What makes the analogy to "terrorism" apt here?
For a while, everything seemed to be a "war" ("war on drugs", "war on crime", "war on bla"…). Now, everything that inflicts pain and trauma, it seems, is "terrorism".
This may not be the right occasion to complain about this. But at the time of reading, it is top of the list at HN and this kind of conflation really bothers me. Words still have meaning, one would hope, the sad Zeitgeist of our time notwithstanding.
There's a really amazing book by Susan Sontag, Illness as Metaphor (and a followup she wrote in the late 80s called "AIDs and its metaphors") which talks about this need to speak about disease as a conflict or fight, or as a foreign invasion or corruption. It's a fascinating book also because it compares the 20th century ways of talking (or not talking) about cancer with how tuberculosis was discussed in the 19th century and before, and both the differences and similarities, especially with regard to a different understanding of how disease operates.
People conceptualize their own illness in very different ways. An author I very much respect, Jenny Diski, died recently, and in her final series of essays about her life and her cancer (and impending death), she said at one point, “under no circumstances is anyone to say that I lost a battle with cancer, or that I bore it bravely. I am not fighting, losing, winning, or bearing.”
Have you ever lived with someone with a mental illness? I definitely see the relationship with terrorism. Terrorism thrives on fear - "will they attack today?", "Will they use some horrible method of attack?", "Will I be able to handle it?", etc.
Living with someone with mental illness can strike fear into a person. "When I get home from work, will I get normal spouse, or lunatic spouse?", "Will I need to take my children away from this situation, or will we have a nice normal meal?", "Will I get fired for constantly having to leave work to deal with this shit, or will it calm down for long enough that I can accomplish some of my life goals?"
It can be very terrifying dealing with something like this, and frankly, I find the metaphor extremely apt. I understand your distaste of how the word is used in the media, but please understand that not all of us use these words lightly. These diseases really can be literally terrifying to the people around the disabled. It can literally feel like someone or something is torturing your loved ones when you see what happens to them.
I came to the comments hoping someone would address this. I'm American and totally agree. This word terrorist needs to just go away. Call them criminals. Call the networks "organized crime."
Look at the bombing in NYC recently. "we do not think this is terrorism" said our idiot mayor. It is terrorism if someone detonates a bomb in a street! Period. If you mean "we're waiting to see if he's part of a broader network of terrorists working together," then say that! Words are powerful and in America we are pretty bad about using them incorrectly (see: entrée as a main course!).
The problem with metaphors linking the human body with society is they are essentially fascist. The "parts" have no value and the "whole" is supremely important.
So it is incumbent on people who use these metaphors to remember that in society the "parts" (i.e. each individual) do have value. Otherwise it's too easy to turn things around and say, "Terrorists are like disease, we must kill them all; that fast-growing ethnic group is like cancer, we must cut it out."
I don't blame the author in this case as it's a very personal account, but readers should be sure to keep the distinction in mind.
You are sadly witnessing one of the darkest consequences of 9/11.
It was such traumatic event for the entire society, due to its stark reminder that we weren't safe, and the modern world hadn't solved every problem, after decades of comfort.
There's a feedback cycle of increased fear, leading to unrealistic demands to fix it, leading to "solutions" that are immensely amplified by the media, and the politician's justifications of the solutions. That leads to increased fear...ad nauseum, to the point that you could credibly do a "Exisentially frightening" find and replace for every instance of "terrorism" and "Exisentially frightening (noun)" for terrorist. They're increasingly synonymous, and terrorist is the one losing definitive meaning.
I don't blame politics for this. We elect them by popular vote, and don't usually reward them for giving us a stern talking to, rather than addressing our exisential fears. But, they could have avoided the types of solutions they've trumpeted. Solutions that killed tens of thousands of Americans and foreigners, altered the way we live, and wasted trillions of dollars that should have been spent lifting ourselves up.
The terrorists won. They've done exactly what we know they wanted: create vast fear in the populace, and impose high economic costs, with relatively small acts committed by madmen.
Hopefully we start choosing more reasonable solutions, responsibly fund the ones we've found (the TSA caused multi-day delays in major cities this summer), and stop demanding the impossible from our politicians. Popular opinion about Middle East military action is tortured logic. You can't be mad about Iraq, Libya, and Syria. They express the full spectrum of action we can take — at least, as far as the general public perceives it. There's interesting distinctions, but few are well-informed enough to have that be informing their opinion.
Looking up one of the definitions of terrorism, I see "the systematic use of terror especially as a means of coercion".
This being the case, I think it's more or less appropriate here, since the article says, "I was getting accustomed to the two of us spending more time in reviewing our days. The subjects though were starting to fall predominantly in the category of fear and anxiety"
On the other hand, I suppose you could argue there is no coercion being involved. In any case, I don't think the title was meant to link this to anything political but rather just an actor causing fear.
I think her intent was simply to invoke empathy for what happened to her husband (to try to put us in his shoes). It wasn't meant as any kind of a broader social or political metaphor.
After reading the article I thought it was a great metaphor. Agreed that in the US too many things are "war on x" but I felt this was a good use of the word "terrorist".
I grew up in Germany during the Baader Meinhof days so to me terrorism has a specific, slightly different meaning to its use here in the US now but words have different meanings in different contexts.
Do you truly feel like Americans moreso than any other nationality choose words poorly, in your estimation? That seems like a fairly unsupportable hypothesis. One might say it's a poorly chosen place to point the finger.
I agree mostly, but I think not the usage of this analogy is the real problem in this specific case. I think the usage here is apt as a figure of speech. However, like you already pointed out, the usage of the word terrorist in general is inflationary and has a strong significance from its literal meaning. The notions compete with each other on this level and for some readers reading those words in this context appear to be like a cheap, sort of unfair stake in the battle(!) for attention.
When your husband, Robin Williams passed away, I mourned for him. I was only someone who greatly appreciated his humor and drama. As a personal mourning for someone whom affected me as a viewer, I watched "What Dreams May come"....
It is one of his saddest and yet most beautiful movies. I live with, and am married to someone with Bipolar disease. I am grateful and happy she accepted me, yet I know she has it. It's OK, as I shall be aside her. But I know she has had similar beliefs and impulses. And please, do not believe I'm comparing us two; I am not.
I can guarantee one thing; He won't be forgotten. I know how much he affected my life, in the humor, and the great joy of his films and comedies. His comedy was infections, in the most joyous way possible! I nary could stop laughing on his 2011 comedy he gave that was recorded by HBO! We had to stop the recording for a half-hour for us(not we-us!) to catch our breath! And eventually, we continued the insanely-funny comedy!
He was such a wonderful and amazing reporter... And yet when he passed, I mourned. I have only mourned for very few.... and yet when I didn't think I would mourn for someone whom I only knew through their acting, I did.
We lost someone very special to all of us. Whether it was through their comedy, their hilarity, through their drama, or through their serious drama; he was special to so many of us.
I do hope you not only survive, but greatly thrive! One of the things you can do is be yourself ! Don't forget that! You can also continue his legacy; do what you're doing right now and continue bringing the thought and reminder of this disease. It's not common yet, and still needs further advocacy. You're in a perfect area to bring this area of genetic/prion disease to light.
And, please don't forget yourself! Yes, Master Robin Williams (yes, a master, in the arts of Comedy, Drama, and Acting)was a great person who brought his laughter and commedia to all, but don't forget yourself.. You succeed him. Do the best you can do, in his name. It may not be commedia. If may not be acting. But that's OK. Do what you do the best!
If you don't empathize with the terror this disease caused her, and her metaphor to 9/11 and other terrorist attacks, there's nothing I or anyone else can say or explain that will make you understand.
> He never said he had hallucinations. [...] it became evident that most likely he did have hallucinations, but was keeping that to himself.
I do not know if I would tell people about hallucinations. It is bad enough to be out of control of your function, but to have no trust in your experience is terrifying. I wouldn't be surprised if I convinced myself I didn't have them in order to feel in control.
When I heard Robin had passed I had assumed it was from depression, but what does that even mean? This essay has really challenged me to go deeper on what mental illness is- a disease just like cancer that has causes which can be mechanical.
It's heart-breaking to think of a person with no way out of rapid decline other than to check out early.
It was widely reported that the "comedian" was "suffering from depression"
It fed into an existing trope and nobody was willing to have the conversation that would challenge that, or if they did it was viewed as insensitive and downvoted to the point of censorship
It is astounding that someone with the resources to pay for the best medical care was unable to arrive at the correct diagnosis. As we move towards AI assisted diagnoses, hopefully such suffering can be mitigated.
Do neurologists follow checklists when diagnosing symptoms? Will this case change their procedures going forward?
Speaking from personal experience (I suffer from a rare neuro-muscular) disease. If you have a very common disease it is often somewhat quickly diagnosed and treated. The less common the disease the longer it takes and the more likelihood of early misdiagnosis.
Often times there are symptoms overlap. A patient may not display or disclose the symptoms that makes it stand out from the others.
Many diseases are diagnosed by physical examination only as lab results can't pinpoint many diseases. This makes it difficult as the doctors you are seeing may not have any/enough experience with the disease to properly diagnose.
In my case it took over six years to get a correct diagnosis and treatment. My doctor is quite humble which served me well as other doctors might have misdiagnosed and treated me incorrectly. In my case the doctor said to me after several months of testing and examinations, "There is clearly something serious wrong with you, but I'm not smart enough to figure out what." After that he became more of a puppet master sending me to different specialists until finally, after 6 years I found one who was familiar with my illness.
LBD can only be diagnosed through microscopic analysis of brain tissue. Though symptom-checklists work, LBD patients are frequently misdiagnosed as PD or Alzheimer's. Some of the meds for those diseases make LBD symptoms much worse, so that is another way LBD can be identified. Happened with my mom.
The problem with diseases like this is doctors having nothing to offer at all. A relative of mine had this condition and they had so much trust in their doctors. They'd go to the doctor regularly and every time the doctor tells them they're sick after giving them a few trivial tests, sends them home and sends them a bill. It's a real farce.
They could try some radical therapy, like stem cells, but they don't. Instead they keep going to the doctor who is happy to take their money and tell them there's nothing they can do.
I feel like the doctor should have a priest on staff to tell them to say their hale mary's and douse them with holy water. At least it would partially justify the cost of the visit.
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:
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.
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.
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?
________________________________
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.
This is a type of dementia, which is in fact an age-related disease. That is not to say that getting old is the main cause, but aging is simply related.
I am convinced that the only truly effective way to tackle most age-related disease (which includes most diseases that kill people) is by comprehensively acting against fundamental aging mechanisms.
[+] [-] snake117|9 years ago|reply
It was pleasant overall as it gave the plenary session that day a more humane feel. It is very easy to get wrapped up in the biochemical underpinnings of diseases and all the hype of the clinical trials being presented. We were reminded briefly of how their is a person behind all those symptoms and how the condition can affect the family as well.
[+] [-] medion|9 years ago|reply
LBD is a horrific - the hallucinations are utterly terrifying to watch someone go through. My father did not commit suicide, however I have often thought that I wish he had, his decline has been so rapid and horrible - witnessing his fear has been torturous - today he cannot move or talk, and is barely conscious, it is simply a matter of time until something like pneumonia will take his life. His symptoms started at age 58.
[+] [-] Grangar|9 years ago|reply
[+] [-] guelo|9 years ago|reply
[+] [-] caconym_|9 years ago|reply
Going out on a limb I'd say that debugging is a skill that's learned in practice, not taught, so if it was as easy to "debug" the human body as it is to debug a computer program, why would computer programmers be better at debugging in their domain then doctors are in theirs? Surely doctors would have varying degrees of skill in this regard, but so do programmers, and it's likely that a) "good" doctors would count this "debugging" as one of their most important skills and b) that Robin Williams had really good doctors.
These factors seem to make diagnostic medicine quite challenging:
* It's often impossible to gather the information you need to make a certain diagnosis without an endless series of tests that may be prohibitively expensive or dangerous to the patient's health themselves.
* Feedback to attempts to "probe" the problem e.g. trying a course of a certain medication may be very difficult to interpret because of delayed reaction, individually unique responses, and/or other external factors that make it difficult to attribute some observed effect to cause X.
* The patient is not getting any younger this whole time, and may become impatient with the process and accept an imperfect solution or simply not have enough time due to the progress of their illness for all avenues to be explored.
* Patients may deliberately hide some of their symptoms, e.g. the article's author's theory that her husband was keeping hallucinations secret.
[+] [-] im4w1l|9 years ago|reply
It's a complete mess of spaghetti code where anything that happens is the result of dozens of sub-systems trying to invoke or override each other.
[+] [-] bsder|9 years ago|reply
The problem is that programmers can make a hypothesis and then test while doctors can't.
Doctor's are effectively engaging in "shotgun debugging" because they don't have good "this cause to this effect" for a lot of systems. The drugs they have to effectively "unit test" don't have narrow effects, so those add extra uncertainty.
They're getting better. And I wish the "deep learning" people would target this much harder--it's almost an ideal candidate (we have these symptoms--we ran these tests--give us a probability list of the top 5 things we should be ruling out next). However, getting the data seems to be the problem.
[+] [-] snarfy|9 years ago|reply
If you have a live system bringing in millions of dollars everyday but it hangs every once in a while, do you reboot it, or attach a debugger to it while it's hung?
[+] [-] dsego|9 years ago|reply
[+] [-] maxxxxx|9 years ago|reply
[+] [-] DasIch|9 years ago|reply
What is necessary is to force the medical community to build up better tools for medical diagnostics and the storage and exchange of patient health information.
[+] [-] dredmorbius|9 years ago|reply
Answering the criticism raised in several responses, it's not that a deep and systemic understanding is specific to software, and inapplicable elsewhere. Yes, the fact of a human-constructed system may make the intention of a system clearer, and its detection easier, but the entirety of existance, at least as our brains are fundamentally equipped to make sense of it, is a system. Primary phenomena are rooted in underlying systems, prerequisites, causes, and interactions. "Five whys", or any other set of inductive explorations, is not a privilege of software systems and workers alone.
The asystematic approach is one that is, paradoxically, a result of increasing complexity of knowledge itself. Rather than individuals spanning multiple disciplines or even subdisciplines or specialties, they're are trailed off into individual leaf-nodes of research, skill, and application, and efforts to break out of this pigeon hole are obstructed at virtually all levels of the system.
Pay and reward are largely commensurate with specialisation. Reputation is contingent on specialisation. Procedure compensation is contingent on specialisation. Access to diagnostic equipment is contingent on specialisation.
And so forth.
Each individual member associated with treatment has their own very small aspect as their particular area of concern.
In software, it's like the person who resolves a bug in medical pricing codes by simply applying the value that was expected in that specific instance for a price, rather than, say, fixing an algorithm or lookup table such that the right answer appears regardless of specific circumstances (I'm paraphrasing from an actual bug/fix story seen recently). From the point of view of a naive management system, that worker has a very high bug resolution rate -- but they're treating the symptom only of an underlying software deficiency.
In a similar vein: you can "fix" a water spot on a wall by repainting the wall.
Or you could replace the plaster that's been waterlogged.
Or you could seal the exterior wall leak that's allowing water in.
Or you could shore up the foundation that's settled, allowing the wall to leak.
Or you could address the underlying geology -- a sinkhole, ground subsidence, a fault line -- that's causing the foundation to move.
Paint is cheaper than plaster is cheaper than siding is cheaper than concrete is cheaper than earth-moving equipment. And there may be an appropriate level of fix. But walking through the problem to its fundamental source(s) provides a full understanding of the problem.
[+] [-] HSO|9 years ago|reply
But I really wish Americans (and yes, I think it's mostly Americans who have this tendency) would choose their words more carefully.
If I am not mistaken, we are talking about a disease. What makes the analogy to "terrorism" apt here?
For a while, everything seemed to be a "war" ("war on drugs", "war on crime", "war on bla"…). Now, everything that inflicts pain and trauma, it seems, is "terrorism".
This may not be the right occasion to complain about this. But at the time of reading, it is top of the list at HN and this kind of conflation really bothers me. Words still have meaning, one would hope, the sad Zeitgeist of our time notwithstanding.
[+] [-] _petronius|9 years ago|reply
People conceptualize their own illness in very different ways. An author I very much respect, Jenny Diski, died recently, and in her final series of essays about her life and her cancer (and impending death), she said at one point, “under no circumstances is anyone to say that I lost a battle with cancer, or that I bore it bravely. I am not fighting, losing, winning, or bearing.”
[+] [-] initram|9 years ago|reply
Living with someone with mental illness can strike fear into a person. "When I get home from work, will I get normal spouse, or lunatic spouse?", "Will I need to take my children away from this situation, or will we have a nice normal meal?", "Will I get fired for constantly having to leave work to deal with this shit, or will it calm down for long enough that I can accomplish some of my life goals?"
It can be very terrifying dealing with something like this, and frankly, I find the metaphor extremely apt. I understand your distaste of how the word is used in the media, but please understand that not all of us use these words lightly. These diseases really can be literally terrifying to the people around the disabled. It can literally feel like someone or something is torturing your loved ones when you see what happens to them.
[+] [-] cylinder|9 years ago|reply
Look at the bombing in NYC recently. "we do not think this is terrorism" said our idiot mayor. It is terrorism if someone detonates a bomb in a street! Period. If you mean "we're waiting to see if he's part of a broader network of terrorists working together," then say that! Words are powerful and in America we are pretty bad about using them incorrectly (see: entrée as a main course!).
[+] [-] tominous|9 years ago|reply
So it is incumbent on people who use these metaphors to remember that in society the "parts" (i.e. each individual) do have value. Otherwise it's too easy to turn things around and say, "Terrorists are like disease, we must kill them all; that fast-growing ethnic group is like cancer, we must cut it out."
I don't blame the author in this case as it's a very personal account, but readers should be sure to keep the distinction in mind.
[+] [-] refulgentis|9 years ago|reply
It was such traumatic event for the entire society, due to its stark reminder that we weren't safe, and the modern world hadn't solved every problem, after decades of comfort.
There's a feedback cycle of increased fear, leading to unrealistic demands to fix it, leading to "solutions" that are immensely amplified by the media, and the politician's justifications of the solutions. That leads to increased fear...ad nauseum, to the point that you could credibly do a "Exisentially frightening" find and replace for every instance of "terrorism" and "Exisentially frightening (noun)" for terrorist. They're increasingly synonymous, and terrorist is the one losing definitive meaning.
I don't blame politics for this. We elect them by popular vote, and don't usually reward them for giving us a stern talking to, rather than addressing our exisential fears. But, they could have avoided the types of solutions they've trumpeted. Solutions that killed tens of thousands of Americans and foreigners, altered the way we live, and wasted trillions of dollars that should have been spent lifting ourselves up.
The terrorists won. They've done exactly what we know they wanted: create vast fear in the populace, and impose high economic costs, with relatively small acts committed by madmen.
Hopefully we start choosing more reasonable solutions, responsibly fund the ones we've found (the TSA caused multi-day delays in major cities this summer), and stop demanding the impossible from our politicians. Popular opinion about Middle East military action is tortured logic. You can't be mad about Iraq, Libya, and Syria. They express the full spectrum of action we can take — at least, as far as the general public perceives it. There's interesting distinctions, but few are well-informed enough to have that be informing their opinion.
[+] [-] rifung|9 years ago|reply
Looking up one of the definitions of terrorism, I see "the systematic use of terror especially as a means of coercion".
This being the case, I think it's more or less appropriate here, since the article says, "I was getting accustomed to the two of us spending more time in reviewing our days. The subjects though were starting to fall predominantly in the category of fear and anxiety"
On the other hand, I suppose you could argue there is no coercion being involved. In any case, I don't think the title was meant to link this to anything political but rather just an actor causing fear.
[+] [-] kafkaesq|9 years ago|reply
[+] [-] zwieback|9 years ago|reply
I grew up in Germany during the Baader Meinhof days so to me terrorism has a specific, slightly different meaning to its use here in the US now but words have different meanings in different contexts.
[+] [-] oldmanjay|9 years ago|reply
[+] [-] ff10|9 years ago|reply
[+] [-] eveningcoffee|9 years ago|reply
The title does not resonate with the expectations to the content.
[+] [-] kefka|9 years ago|reply
When your husband, Robin Williams passed away, I mourned for him. I was only someone who greatly appreciated his humor and drama. As a personal mourning for someone whom affected me as a viewer, I watched "What Dreams May come"....
It is one of his saddest and yet most beautiful movies. I live with, and am married to someone with Bipolar disease. I am grateful and happy she accepted me, yet I know she has it. It's OK, as I shall be aside her. But I know she has had similar beliefs and impulses. And please, do not believe I'm comparing us two; I am not.
I can guarantee one thing; He won't be forgotten. I know how much he affected my life, in the humor, and the great joy of his films and comedies. His comedy was infections, in the most joyous way possible! I nary could stop laughing on his 2011 comedy he gave that was recorded by HBO! We had to stop the recording for a half-hour for us(not we-us!) to catch our breath! And eventually, we continued the insanely-funny comedy!
He was such a wonderful and amazing reporter... And yet when he passed, I mourned. I have only mourned for very few.... and yet when I didn't think I would mourn for someone whom I only knew through their acting, I did.
We lost someone very special to all of us. Whether it was through their comedy, their hilarity, through their drama, or through their serious drama; he was special to so many of us.
I do hope you not only survive, but greatly thrive! One of the things you can do is be yourself ! Don't forget that! You can also continue his legacy; do what you're doing right now and continue bringing the thought and reminder of this disease. It's not common yet, and still needs further advocacy. You're in a perfect area to bring this area of genetic/prion disease to light.
And, please don't forget yourself! Yes, Master Robin Williams (yes, a master, in the arts of Comedy, Drama, and Acting)was a great person who brought his laughter and commedia to all, but don't forget yourself.. You succeed him. Do the best you can do, in his name. It may not be commedia. If may not be acting. But that's OK. Do what you do the best!
May the deities he and you believe in bless you.
[+] [-] unknown|9 years ago|reply
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[+] [-] hogrammer|9 years ago|reply
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[+] [-] late2part|9 years ago|reply
[+] [-] wreft|9 years ago|reply
This sounds like one of those sentences that sound deep but don't mean anything. Can you explain?
[+] [-] Normal_gaussian|9 years ago|reply
I do not know if I would tell people about hallucinations. It is bad enough to be out of control of your function, but to have no trust in your experience is terrifying. I wouldn't be surprised if I convinced myself I didn't have them in order to feel in control.
[+] [-] davidhariri|9 years ago|reply
It's heart-breaking to think of a person with no way out of rapid decline other than to check out early.
[+] [-] cloudjacker|9 years ago|reply
It fed into an existing trope and nobody was willing to have the conversation that would challenge that, or if they did it was viewed as insensitive and downvoted to the point of censorship
[+] [-] Theodores|9 years ago|reply
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[+] [-] svag|9 years ago|reply
[+] [-] gilaniali|9 years ago|reply
Do neurologists follow checklists when diagnosing symptoms? Will this case change their procedures going forward?
[+] [-] bigtunacan|9 years ago|reply
Often times there are symptoms overlap. A patient may not display or disclose the symptoms that makes it stand out from the others.
Many diseases are diagnosed by physical examination only as lab results can't pinpoint many diseases. This makes it difficult as the doctors you are seeing may not have any/enough experience with the disease to properly diagnose.
In my case it took over six years to get a correct diagnosis and treatment. My doctor is quite humble which served me well as other doctors might have misdiagnosed and treated me incorrectly. In my case the doctor said to me after several months of testing and examinations, "There is clearly something serious wrong with you, but I'm not smart enough to figure out what." After that he became more of a puppet master sending me to different specialists until finally, after 6 years I found one who was familiar with my illness.
[+] [-] Pokepokalypse|9 years ago|reply
[+] [-] narrator|9 years ago|reply
They could try some radical therapy, like stem cells, but they don't. Instead they keep going to the doctor who is happy to take their money and tell them there's nothing they can do.
I feel like the doctor should have a priest on staff to tell them to say their hale mary's and douse them with holy water. At least it would partially justify the cost of the visit.
[+] [-] j_koreth|9 years ago|reply
[+] [-] dredmorbius|9 years ago|reply
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?
________________________________
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_...
[+] [-] ilaksh|9 years ago|reply
I am convinced that the only truly effective way to tackle most age-related disease (which includes most diseases that kill people) is by comprehensively acting against fundamental aging mechanisms.
http://www.sens.org/
[+] [-] pm24601|9 years ago|reply
this should make it painfully clear to all those with opinions about others on the internet to STFU
[+] [-] AustinG08|9 years ago|reply
https://www.youtube.com/watch?v=nfesrob8hW4
[+] [-] kposehn|9 years ago|reply
[+] [-] jacquesm|9 years ago|reply
[+] [-] brennebeck|9 years ago|reply
[+] [-] unknown|9 years ago|reply
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[+] [-] gotts|9 years ago|reply
[+] [-] amingilani|9 years ago|reply
Seriously, 109 comments and no one said it?
[+] [-] stamm49|9 years ago|reply