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.
This is not a (legal) option where we live. He was also taken by the state and is under the full control of the nursing home where he is in palliative care.
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.
One reason why we might be better at debugging is doctors are penalized for "fuck it, what happens if I do..." and we are not.
We get to mess with large permutations of different causes and effects, that we stimulate, in a short time while that would be unethical for medical professionals.
> One reason why we might be better at debugging is doctors are penalized for "fuck it, what happens if I do..." and we are not
I get anxious every time I have to debug live systems. Developers are lucky because we can reproduce and test fixes on non-live systems. As a bonus, we can step through the code at critical junctures and can examine the complete state of the system
When you have a large, distributed system with many moving parts, debugging no longer applies. To top that off, you in no way have a complete "view" of the state of the system and you have to piece together clues from varying parts. Taking into account the user "story" of what happened, which is usually vague.
I always liken it to being a detective trying to piece together a crime scene from incomplete clues. But now that I think about it, it's also quite a lot like trying to diagnose an illness from symptoms.
I'd debugged live systems that where for side projects. One such example was a game server who I wrote a few thousand lines of code for. All with no test suite, all with no other eyes inspecting it, absolutely no documentation, and all with a usually incomplete git history.
I had about 2-4 systems talking to each other for this project (that's counting the system that I wrote that works as a plugin/module loader and all of it's plugins as 1 system).
It's a relic from my past that I'm glad I left behind. Editing plugins live, writing everything in usually the one or two days of free time I had between school engagements, and a few other tricky things that happened, this was probably one of the most funny projects I worked on.
By the end of it, I had two config file formats for pretty much everything, I opted out of using the right tool for the job most cases, and I kept having to upgrade hardware which was a pain in the ass since I didn't have any setup instructions since I made the damned thing.
It was quite a bit of a mess and I can definetly agree, debugging live systems, debugging distributed systems, and debugging unverified/untested/undocumented systems is crap too.
I'm pretty sure that being a doctor is the same as this except thousands of times worse. The amount of times I've messed up when working on my spaghetti plate was more then I can count and I'm pretty sure the human body is more slopily put together then my leaning tower of crap.
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.
I like to keep that in mind when I consider what kind of solutions machine-learning will bring us, what kinda processes will be going on under the hood.
> 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.
First of all, sorry about your father. My comment that follows is in no way trying to diminish what you have been through. Please do not take it that way.
What your describing sounds a lot like team debugging and trouble shooting! Trial and error of a failed hypothesis, further testing when someone looks at the data with fresh eyes. Finally a solution, or in your case, clarity.
Unfortunately, it was the worst kind of debugging, throw drugs at the problem and see what sticks. If it doesn't work change the dosage, then some more drugs to counteract the side effects, then clean up and start over. It feels so unscientific and medieval.
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.
Clinical systems interoperability has improved a lot in the past few years. But decision support and automated diagnostic tools (like IBM Watson) are still constrained by lack of complete and accurate patient symptom data. It takes a lot of time and expertise to correctly observe symptoms and enter them in a way that computers can understand. I don't think that automated diagnostics will be widely used until computer vision, pattern recognition, and natural language processing advance far beyond the current state of the art.
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.”
Except that cancer and infectious disease really are conflicts and invasions, no metaphors needed. At the cellular level you really do have cells killing cells based on recognition of whether they are not they are recognized as "self".
The other comment says this more briefly, but: it is true that the immune system draws this distinction. Every human cell with a nucleus presents a set of molecules on its surface, and immune system T cells use that to determine whether or not to trigger an immune response (where "immune response" means "kill the cell which presented an unacceptable set of molecules").
Autoimmune diseases occur when immune cells improperly categorize some "self" cells as "non-self" and trigger immune response on them.
Describing the behavior of immune cells as categorizing cells in 'self' and 'non-self' is itself an example of engaging in metaphor. It's an example of anthropomorphising the behavior of cells.
You can just as easily describe the behavior of immune cells as categorizing cells into 'healthy' and 'unhealthy' and killing the 'unhealthy' cells. Suddenly the disease is not about internal conflict, but about internal hygiene. And when the immune system kills 'foreign' cells, it's not because they are foreign, but because they are found to be 'unhealthy': deviating too much from what it considers 'healthy'.
This is a simpler explanation. Apply Occam's razor: the immune system does not care about whether something is 'foreign': that's a more complex, and more precise, judgement than is needed to determine whether something needs to be killed. The broader category of 'unhealthy', deviating from the template/norm, is sufficient and that is the only thing the immune system needs to determine.
Except that the immune system's idea of what set of molecules to accept and what set to kill is not based on a generalized idea of what a "healthy cell" looks like -- otherwise we wouldn't have such trouble matching people for organ transplants, since our immune systems would just accept any generically healthy organ.
Instead it's dependent on the (specific to the individual) set of genes controlling the major histocompatibility complex, and so is very much a "self" ("derived from my genes") versus "non-self" ("not derived from my genes") determination.
Yes, what is 'healthy' looks different for each individual. That doesn't mean that something is found to be 'healthy' because it is 'self'.
The immune systems primary function is housekeeping: killing cells that are still completely 'self', but are old, worn down or dysfunctional in some other way. Killing 'invaders' and cancers is minor in terms of the numbers of cells destroyed.
As your transplant example shows: something foreign can be found to be entirely 'healthy' by your immune system. So self vs. foreign is too narrow.
An immune system that only kills cells determined to be 'non-self' would be woefully insufficient. It needs to kill cells that have become unhealthy, for instance clogged up with misfolded protein, all the time, even when those cells are clearly still 'self'.
See also my comment to ubernostrum further downthread. There is no compelling reason to frame cancer or infectious disease as a conflict or invasion. Doing so is just as reasonable as framing housekeeping as a conflict with 'foreign dirt' or an invasion of 'the outside world into your house'.
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.
That's mincing words. Being bipolar feels like an assault on my psyche that exists for no reason other than to make me miserable and to meticulously sabotage everything I do. I totally understand feeling like having a terrorist in your head, because it's a great way to describe how I feel sometimes.
In the title, the author is using a metaphor, which is a figure of speech in which a word or phrase is applied to an object or action to which it is not literally applicable.
And the contention here is that it's inappropriate (unless you mean to suggest that diseases are sentient or otherwise capable of intention to foment terror) and overplayed, and it ultimately corrodes the meaning of and devalues the word.
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!).
> This word terrorist needs to just go away. Call them criminals.
Terrorists are criminals whose main motivation is political. The main motivation of other criminals is not. One term is more specific, so they are not interchangeable, and the term terrorist carries useful information when used properly.
Of course, diseases are not politically motivated, so that analogy is not great.
I've often wondered what effect it would have if the media universally started referring to "suicide bombers" as "mentally imbalanced religious fanatics".
Some suicide bombers are children, coerced or fooled into it. "Go stand there in the crowd. Your parents will be proud. If you dont, something very unfortunate might happen to your little sibling."
I agree with your general gist, but terrorism has an actual meaning - trying to push your political agenda through application of terror (it doesn't have to be murder per se)/
But yes, American political dialogue could do with more multi-polarity, and less us vs them dichotomy.
I looked up entrée, and the Wikipedia page says that the American usage of the word is actually older than the contemporary French meaning of a dish served before the main course.
The contemporary American meaning (the main course) doesn't seem really older than the contemporary French meaning.
> The word entrée maintained this meaning of a substantial meat course served after the soup/fish and before the roast in Britain, France, and America until well after the first World War.
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.
A small group of people is not going to survive at a modern, first-world, technological level of civilisation, providing itself with oil, coal, electricity, silicon chips, cotton, synthetics, pharmaceuticals, food, lumber, iron, steel, aluminium, glass, etc., etc.
It might manage to provide for itself at a ~1650 level of subsistence, in a favourable climate.
What group is it you're hiving off from society exactly?
Because in the same way that your arm is an integral subunit of a whole which makes no sense without that contextualising state, any organised subunit of modern society will stop functioning in its subunit sense.
An isolated business, or factory, or town, or neighbourhood, or even family, will no longer have its prior context.
You'll all but certainly see a massive amount of mortality.
Some very small sets of individuals might survive, but, again, within an entirely different context. And only in the right nourishing environment.
Much as a few select cells from an arm might, if sufficiently general, continue to exist if put in an appropriate nutrient solution, protected from bacteria or other disease, and generally cared for.
I don't think you're conning on to the systems view of this concept, and the distinction between individual and society, or cell and organism.
I agree with everything you said, but I think you're completely missing my point.
> any organised subunit of modern society _will stop functioning in its subunit sense_.
Yes, there will be high mortality, but that former subunit can go on and recreate a new, different society. An arm will just die. A 90% mortality rate is completely different than 100% mortality.
My point is that the analogy between society and the body is very imperfect. The body is much more fascist, and the biggest reason is because of how reproduction works.
Evolution has spent over a billion years shaping multicellular, sexually reproducing organisms; sexual reproduction provides strong selective pressure to favor cells that contribute to the organism as a whole. By contrast, large-scale human society (larger than a tribe of ~100 people) has only existed for a few thousand years.
That's why we value individualism, liberty, and so forth -- it's literally against human nature for society to completely dictate to the individual, whereas it's natural and correct for a cell to sacrifice everything (e.g. apoptosis) for the body, because only by helping the body can the cell help propagate its own genes.
Just think about it for a second -- cells regularly check themselves for damage, and if they determine that they are too damaged, they immediately commit suicide. If they fail to commit suicide, the immune system kills them. Can you imagine mass, compulsory euthanasia for terminally ill people, but enforced by the police + military? Because that's one implication of the 'society == body' analogy.
If you want another example, ant and bee society show much more eusociality than human societies. Workers very readily sacrifice themselves to defend the colony/hive, whereas it takes a lot of training and effort to get humans to fight effectively. That makes sense, because eusocial insects are more closely related to one another than humans are to each other, and workers cannot reproduce while there's a queen. The mechanism of reproduction strongly influences the level of eusociality.
>>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.
Yes, and also the problem with metaphors linking the human body with society is they are essentially communist also. In communism, the individual has no place if he/she is lesser equal and has almost all importance/power if he/she is more equal like politburo member or their crony.
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.
I think it's less because of fear, and more because of hate and anger that drives people to act the way they do and the laws after 9/11. Yes, everyone claims the new laws are to "keep people safe", but they all seem to follow the same pattern of trying even harder to catch criminals, punish them more when we've caught them, and lower the standard of evidence necessary for conviction.
After all, most people in the USA don't live near high value targets, and I doubt most people are afraid of terrorism in their day to day lives (the occasional highly unusual occurrence being the exception).
The truth is terrorist have engulfed themselves in anger and hate, and as the saying goes, hate breeds hate. That's what is happening to the USA. People are too embarrassed to admit it. After all, the modern enlightened individual has grown past hatred, right? They leave such petty emotions behind, don't they?
So, no one wins. Not the terrorists, nor the people... well besides a few power hungry elitists who should be lined up against a wall and shot (just kidding), but I think you see my point.
It's just a instinctual lizard brain response to a instinctual lizard brain action. And the more we deny we hate, the more it controls us.
Frankly, I'm too lazy to find a citation, but IIRC (99% sure) revelations from Al Qaeda documents have included that they knew exactly what they were doing, and the plan was to strike fear and cause economic costs – they viewed it as a response to ever-decreasing availability of funds and a recognition they didn't have the backing of enough civilians or soldiers to do something as ambitious as found a nation.
ISIS' founding logic was Al Qaeda failed, and surely that was because it wasn't ambitious enough, and not pure enough. The solution was to rebase on fundamentalism and use the remnants of the Iraqi army to create a safe space for a caliphate to rule.
Of course, I'm offering absolutely nothing to back my assertions here, so it's fair to ignore this. :)
I was nervous writing that post, imagining someone would think of even more severe things we lost, that I surely couldn't remember everything while furiously tapping out a post, and they'd glibly refer to it as if I had forgotten the fall of Western civilization had occurred, while I only cared about money!
I told myself this was being far too fearful. Surely those reading would recognize that the absence of every other cost in the post: the lives of hundreds of thousands, mass surveillance, the Patriot act, etc, etc, etc, and recognize that I couldn't enumerate everything in a post that was already too long.
I worried more about narcissistic performance art, someone hopping in, vastly exaggerating with statements like habeas corpus was rolled back! and I had ignored it, and that seemed unlikely as well. Surely this was all manifestation of anxiety, anxiety I have to address.
It's impossible to respond to your post with a response involving reason, you're not appealing to reason.
You made an unfounded assertion, with a scolding for not enumerating your unfounded assertion in my list of consequences of 9/11. This list is no list – it's literally two items that I had chosen specifically for that paragraph because A) they were important to my reasoning B) they were the two explicit goals of al Qaeda operations, decided upon as the best strategy after increasing scare resources limited potential scope of operations, and lack of appetite to become a religious nation-state.
When called on your unfounded assertion and scolding, you attempted to take a step back. You sarcastically mocked my defense, by conflating the time I took to write a long post, with me taking time to write a long list of absolutely every cost to humanity after 9/11. You claimed my response was really just imaginary concerns and a personal attack, complained I didn't engage your unfounded assertion, and posted two pages of the table of contents of an unidentified book.
I spent ~10 minutes trying to learn more about the author and his assertions, and couldn't find any information on Google that would remotely shed light on your unfounded assertion.
Even if I had, it doesn't change anything. The most charitable version of the only argument you've offered is I'm callous to care more about trillion of dollars in economics consequences that our fundamental rights as a society. That's not what happened. All that happened is I built the paragraph around mentioning al Qaeda's only two explicitly goals, and that they had accomplished them at level beyond their wildest imagination.
At the end, I'm thinking, this was utterly a waste of time for the both of us, except you've gotten to engage me two posts in a row now. That's usually the mark of a troll.
I'm OK with letting my responses to stand as they are with a note of objection to your extreme mischaracterization of content and your claims of knowing my 'intent'.
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.
I didn't mean to be pompous. My native tongue is German and I didn't know a better word than Zeitgeist for what I wanted to say.
I feel that language in general is being used in a different way today than even just a few years ago. Admittedly, I don't have objective measures for this but I know I am not alone in this assessment. Even the Economist recently ran a feature about this lamentable phenomenon.
Zeitgeist has the meaning not only of "the spirit of the times" (literal translation), but of the sense of a binding or constraining dominant ideals and beliefs of a time, which can be viewed as proscribing a cage within which a set of contemporaneously accessible ideas are constrained.
The idea was promoted by Albert Szent-Gyorgi in a 1970 book, The Crazy Ape.
There's a good overview of the concept in this VSauce2 video:
> 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.
I experience mild hallucinations when stressed out or drunk. Lack of sleep is another trigger. I haven't had it diagnosed but I suspect HPPD, stemming from some badly times mushrooms trips a couple of years ago. I find it mostly ignorable thankfully.
I was aware of the hallucinations for one year before I told anyone about it. Have only talked with one friend about it a couple of times. It is a difficult subject, and hard to relate to for people that haven't experienced hallucinations. And on the other hand is it an deeply private sensation that is very hard to convey.
That they are usually just predictable visual "enhancements" like trailing images, pulsating or undulating motion, or shifting colors. I see these as mild compared to something like intrusive movement in the peripheral vision, or hallucinations that react to the external world.
I think many people envision hallucinations as these grand visions - like an LSD trip or something. So, when they wonder, 'am I having hallucinations?' the answer to them is clearly no.
Hallucinations can be as minor as seeing unexpected movement out of one's peripheral vision. It's can be occasionally seeing shadows that initially appear to be something else. Because those types of things seem relatively minor, people tend to disregard them. But, they can be a signal of some neurological system acting abnormally.
Right. My wife sometimes has auditory and occasionally the sorts of visual hallucinations you mention. I suspected it for some years but never asked her. She finally told me about it a few years ago. I've known her since the '70s.
It's not an easy thing to discuss with people. There has to be a lot of trust that, even if this person I tell thinks I'm crazy, they won't ditch me because of it.
This is one thing that's certainly an issue but another is that people's idea of what a hallucination is being shaped by movies and tv. So people end up having this idea of what hallucinations are that has nothing to do with reality and so naturally when they do have hallucinations, it makes far more sense to dismiss them as optical illusions, weird lightning, a noise coming from the neighbor and stuff like that.
Now I am sometimes asked, "Did you hear that?" Sometimes yes, often no. The greatest relief she shows is when I tell her one of the cats jumped off something.
My mother has LBD (as near as the doctors can tell, because it can't be diagnosed while the patient is alive) - and we're pretty sure she hallucinates, but she doesn't share that with us. She used to tell us about seeing some random animals running through the yard - some fairly unbelievable, but plausible things.
I would fully expect myself to have convinced myself that I am not experiencing hallucinations - particularly because hallucinations are often incredibly minor.
I am also very mindful about the dangers of telling people things that will alter how they interact with you.
Combining these I find it likely that there be a very high bar for knowing something like that - especially as it is likely a personal suspicion. Not all doctors qualify as over this bar.
Of course I would actively seek a doctor I was comfortable disclosing everything to, yet I understand a reluctance to do so.
It turns out that the people who need the most help might have a hard time telling doctors the truth about their symptoms for a variety of reasons. I think you're right that this would be better, but I think it would be really sad to avoid helping people just because they had problems with self-awareness and communication.
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
Do you have any evidence that drinking/drug taking leads to LBD? Otherwise, this is just a classic it-won't-happen-to-me-because-I-do-X justification (see: I won't get cancer because I eat well, I won't have a car accident because I'm a good driver, etc) which is pretty harsh to those who are affected.
If you said that to me after my sibling died i"d punch you in the mouth (or if possible I'd make it so you never can die, a fate worse than death).
Respect the living by respecting the dead.
Even if everything you say is true or if he was a Martian or of he was a programmer he is gone. Some time people simply make mistakes with words. You have a chance to delete your comment.
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.
Sorry to pry, but may I ask which neuro-muscular disease you're referring to? A bit fascinated by the inability of many doctors to make proper diagnoses when dealing with neurological issues.
No worries. It's no big secret for me. Most people don't know what it is; I even got a blank stare from an ER doctor once when I was taken in during an extremely bad episode.
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.
What do you expect? Medical professionals are not witch doctors or snake oil scammers. The first rule is "do no harm". It would be wildly irresponsible to inject a patient with stem cells or whatever just for the sake of trying something. If there's a reason to suspect that stem cells might help then encourage them to conduct a properly controlled clinical trial.
Many hospitals do have chaplains (priests and others) on staff. Some patients find them to be a great source of comfort.
A good counterpoint to this is Banting and Best (https://www.nobelprize.org/educational/medicine/insulin/disc...). These guys back in the 20s discovered insulin and brought it to market and started using it on patients in widespread distribution in 3 years. As soon as they figured out it would work by injecting a dog, then themselves, then a patient they went into a children's hospital and started injecting kids with it who were in diabetic comas and they started waking up. These days their research would require multi-million dollar clinical trials and take 10 years or longer.
The point being, the drug testing process for terminal illnesses is very very slow. There are also drugs that show some efficacy in curing Parkinsons like Nilotinib, but they won't cure anyone who isn't getting it outside the system for at least another 10 years, even if it works perfectly. I think there should be some more risk tolerance and looser regulation for people with terminal illnesses as long as the research is done on a non-profit basis. Even if you had the cure for a terminal illness right now it wouldn't be on the market for 10 years and a lot of people would die needlessly because of that.
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.
There's a second posting of this link on the second page (at the moment) that has the actual article's title - perhaps the discussion can be merged and the title normalized.
We marked the other submission as a duplicate and changed the title of this one from “Heartbreaking essay by Robin Williams' wife about what happened to him”. Since the original title is neither misleading nor linkbait, the guidelines ask that we keep it.
Ah yes. Removing "Heartbreaking" is something I would agree with. However I would not have read an article with the other title - it makes it seem like more fluff about terrorists.
Quite so. The title changed after I'd clicked the link. Without the mention of it being a piece by Robin Williams wife I'd have skipped over assuming it another piece about radicalisation.
I'm not disagreeing ... The original title didn't result in a discussion here. I purposely said "normalized" for this reason (maybe the original title with Robin Williams in parenthesis after Husband).
This is absolutely heartbreaking. Who is cutting onions here?
I think as time goes on, we will find more and more physiological sources for severe mental health problems, and that is a great step towards proper diagnosis and, hopefully, cure. Before reading this article, I thought he 'just' suffered from depression and thus a condition that cannot be diagnosed physically.
As things stand, it's unhelpful to assert that there's a purely biological cause for something like depression or schizophrenia. In fact we know that life circumstances matter in triggering these conditions, and the more honest/sensible psychiatrists use the umbrella term "biopsychosocial" which conveys the systemic and interpersonal nature of the problem.
Haven't read the article, but the timing is interesting to me: I'm just finishing my honeymoon, and our last waiter in Costa Rica looked and acted in a way where I told my wife he seemed like a robin williams character...and then I got really bummed out realizing we won't get any more of his characters again.
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.