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The terrorist inside my husband's brain
- smoyer 10y agoThere'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. https://news.ycombinator.com/item?id=12617586 https://news.ycombinator.com/item?id=12617586
- Normal_gaussian 10y agoThis title is more descriptive and the other, older, discussion has no comments. Merge may still be useful to remove other link.
- wldcordeiro 10y agoThe title here is editorialized, I'd prefer to keep her original title.
- Normal_gaussian 10y agoAh 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.
- quickly 10y agoYes, exactly. I would not have come across this had the editorialized title not gained more traction.
- deleted 10y ago[deleted]
- anexprogrammer 10y agoQuite 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.
- ScottBurson 10y agoI saw the other title and skipped it. I think this one is fine as is. ETA: I suppose "The terrorist in Robin Williams' brain" would be a fair compromise.
- Normal_gaussian 10y agoMentioning that it is written by his widow was a large factor in me clicking the link.
- DennisP 10y agoEditorialized or not, actually mentioning that it's about Robin Williams is helpful. I skipped the other link, and I'm glad I didn't miss the article.
- srean 10y agoIts a little unfortunate that the bag of metaphors in popular American discourse have come to contain little beyond "war against *" and "terrorists".
- smoyer 10y agoI'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).
- sctb 10y agoWe 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. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html
- dchuk 10y agoHaven'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. Going to read this on the plane home.
- AustinG08 10y agoBig fan of the song Robin Williams by CeeLo Green https://www.youtube.com/watch?v=nfesrob8hW4 https://www.youtube.com/watch?v=nfesrob8hW4
- Kenji 10y agoThis 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.
- theoh 10y agoAs 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.
- Kenji 10y agoIn fact we know that life circumstances matter in triggering these conditions That doesn't mean it's not physiological in nature. Life circumstances can trigger a heart attack. I think it is not only honest but extremely helpful to search for physiological signs.
- svag 10y agoI didn't know about the Lewy body disease, so here is a link to the Lewy body dementia association https://www.lbda.org/category/3437/what-is-lbd.htm https://www.lbda.org/category/3437/what-is-lbd.htm
- snake117 10y agoI 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.
- Normal_gaussian 10y ago> 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.
- usaphp 10y agoWhat is the point then going to doctors searching for a reason of your problems if you don't even tell them truth about your symptoms?
- tunesmith 10y agoIronically, that point could be lost on those suffering from these sorts of symptoms - hallucinations, paranoia, etc.
- Normal_gaussian 10y agoI 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.
- texthompson 10y agoIt 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. I might be wrong though. :)
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- jacquesm 10y agoTaking into account his profession you have to wonder to what extent he was shielding his loved ones from how bad it really was. Poor man.
- brennebeck 10y agoThis was one of my first thoughts - trying to imagine how he was really feeling while putting up a strong face for everyone, especially his wife.
- davidhariri 10y agoWhen 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.
- Theodores 10y agoSome reality please... Robin Williams, by his own admission, was a life-long drink and drug user. If he wasn't on the class 'A' drugs then he was drinking to excess. If he was 'cold turkey' in re-hab then he was on other prescription drugs, none of them needed by normal people on a day to day basis. I am sure that with each hangover and come-down there was something telling Robin Williams that some part of his brain was being fried, even if he would prefer to look for another drink rather than dwell on the negatives. I do know people in their late teens and early twenties that drink 'Robin Williams style' and I fully imagine they will have fully scrambled brains by the time they get to middle age, if they get that far. I don't have much influence over them, however, those people with 'stardust' on them do. Therefore it would be better if the unvarnished truth were told through true stories, i.e. 'drink and drugs will kill you, look what happened to so-and-so rock/movie star' rather than pretend that some evil tooth fairy randomly gave our great hero some cruel disease. Why do some people take drink/drugs? Why do some people need to be funny? What traumatic things happen to a child to make them a comedy genius? Why isn't that enough and a fall into drink/drug abuse practically certain? Instead of these questions we have 'the terrorist inside my husband's brain' as the viewpoint.
- Lxr 10y agoDo 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.
- losteverything 10y agoIf 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. Keep your words from others' eyes and ears
- j_koreth 10y agoCan mods change this mobile website link to http://neurology.org/content/87/13/1308.full http://neurology.org/content/87/13/1308.full?
- deleted 10y ago[deleted]
- guelo 10y agoA 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.
- im4w1l 10y agoSystems 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.
- RodericDay 10y agoI 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.
- Cyph0n 10y agoAnd the origin of the original quick hack is still unknown because there was no version control at the time of the Cambrian explosion.
- deleted 10y ago[deleted]
- dsego 10y agoI 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.
- HSO 10y agoThis 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.
- wreft 10y ago"the sad Zeitgeist of our time notwithstanding" This sounds like one of those sentences that sound deep but don't mean anything. Can you explain?
- sndean 10y ago"Even though it seems that words have diminished meaning in our modern society." Or something like that.
- llamaz 10y agoDespite the Zeitgeist [1] of naming things after war or terrorism [2] hopefully words still have meaning [3]. [1]: spirit of the times/current fashion/popular tendencies [2]: which causes war/terrorism to lose meaning because it refers to everything [3]: compare with [2]
- HSO 10y agoI 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.
- gilaniali 10y agoIt 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?
- bigtunacan 10y agoSpeaking 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.
- zhs 10y agoSorry 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.
- bigtunacan 10y agoStiff Person Syndrome. It is extremely rare and occurs in only about 1 in 1 million people. https://en.m.wikipedia.org/wiki/Stiff_person_syndrome https://en.m.wikipedia.org/wiki/Stiff_person_syndrome For this particular illness, 6 years is the average amount of time it takes to diagnose. Just to help put it in perspective.
- gotts 10y agoThis reminded me of a "My Beautiful Broken Brain" documentary.
- medion 10y agoThis 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.
- Grangar 10y agoI 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.
- medion 10y agoThis 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.
- kposehn 10y agoDupe of https://news.ycombinator.com/item?id=12616007 https://news.ycombinator.com/item?id=12616007
- rayne58 10y agoTo make it a little more readable I drop this is on alot of websites just edit the CSS and drop it on the bottom body { margin:1em auto; max-width:40em; padding:0 .62em; font:1.2em/1.62em sans-serif; } h1,h2,h3 { line-height:1.2em; }
- narrator 10y agoThe 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.
- nradov 10y agoWhat 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.
- narrator 10y agoA good counterpoint to this is Banting and Best (https://www.nobelprize.org/educational/medicine/insulin/discovery-insulin.html 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.
- dredmorbius 10y agoI'm seeing any number of themes in this piece that call out for discussion, only a few of which are being picked up here. Mental health, stigma, betrayal, and volition The whole nature of mental health and stimatisation runs deep in contemporary society and this article. Even with acknowledged issues, Williams likely hid the most troublesome symptom, hallucinations, from his wife and others. Unlike physical disease or injury, which can be considered happening to us or our containers -- bodies -- disease of the mind fundamentally affects our very ideas of identity and perception. When a person's responses to the world change, when their recollection of events turns unreliable, when their response to the present becomes chaotic, when they themselves cannot trust the messages of their own sense, you're diving into some very deep, dark waters. Interacting with, caring for, and living with the mentally ill is exceptionally taxing. Norms of social behavior fail to exist, and the least interaction can become both a trial of comprehension and a battle of wills (though not necessarily this). And patterns which were once firmly established change, by the week, sometimes by the day or hour. This is a reason that the role of primary caregiver is such a tremendously challenging one. The response of others, including medical professionals, is also taxing. Normal expectations of volition and will simply do not apply. When there's an organic, chemical, or pathological underpinning to behavior, it's not simply a matter of "just try harder" or "you're smart and capable". To the point that comments suggesting this themselves become tremendously painful. Celebrities and disease For better or worse, a characteristic of fame and celebrity is that they focus attention. Susan Schneider Williams's essay on her celebrity husban, Robin Williams's encounter with a rare, difficult to diagnose, and profoundly There's a tension at HN over whether or not authors or personalities matter, are relevant, or should be disclosed. I feel rather strongly that they do. HN management disagree. There's a recent discussion of that here: https://news.ycombinator.com/item?id=12573874 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 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 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_V/Chapter_1 https://en.m.wikisource.org/wiki/The_Wealth_of_Nations/Book_...
- amingilani 10y agoO Captain! my Captain! rise up and hear the bells; Rise up—for you the flag is flung—for you the bugle trills Seriously, 109 comments and no one said it?
- pm24601 10y agoI remember all the people ( looking at you Tony Robbins) who put RW's suicide as some failing of character. this should make it painfully clear to all those with opinions about others on the internet to STFU
- ilaksh 10y agoThis 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. http://www.sens.org/ http://www.sens.org/
- stamm49 10y agoSorry but a medical disease has nothing to do with "terrorism". Is this just a way to grab headlines or clicks?
- Dorisb85 10y agoWhen people say hackers are not reliable i laugh at them. I was introduced to this hacker when i had marital issues with my husband,he helped me hack into his emails. Him and his team are professional hackers and they offer other services such as clearing bad driving and criminal records, background checks, monitoring locations, locating missing people, tracking scams e.g (online dating scams, cyber frauds), bank account hacks and transfer, facebook, whatsapp,text messages, phone records, email hacks, teaching individuals on how to become pro hackers and counter hacking hackers. They offer same day services too, and of cause he provides proof of legitimacy. If you need a hacker contact Mikhail Saratov via his email-(cyberlord7714@gmail.com). Him and his team saved my life literally, at least i owe him publicity. If he doesn’t respond tell him (Daniella) recommended him…