How I Fell in Love with a Schizophrenic
asserttrue.blogspot.com
asserttrue.blogspot.com
They've been writing their own operating system in assembly for the last few years: http://www.losethos.com/ and now http://sparrowos.com/
For more: http://qaa.ath.cx/LoseThos.html
Would love him to read a (short) autobiography some day, he does seem incredibly interesting, smart, intense and of course somewhat unstable.
For anyone interested, here's a video in which he introduces his OS: https://www.youtube.com/watch?v=WAr-xYtBFbY
(http://www.bbc.co.uk/dna/place-london/plain/A694523)
Responses to him ranged from people interested in him as a person, and in his treatment (or lack of); through to hostility at his very many posts and his attempts to evade filters; to really unpleasant baiting of a person with a mental illness or nasty mocking.
We've got the opportunity to listen to this guy, whether we agree with him or not, or can parse out signal from noise or not, and we've instead said "Ah, fuck it!" and shadowbanned him instead of simply scrolling down.
There are enough difficulties making this forum work with relatively "normal" people and relatively ordinary social frictions. Trying to add into the mix the need to compassionately tolerate someone whose posts are so inflammatory would become a nightmare for everyone involved. I wish I could say otherwise because I am not personally comfortable with banning someone merely because they have a mental illness. However, pg and others already lament how the forum has lost quality, already are beating their head against a wall trying to address the issues which caused that, etc. They aren't qualified to help someone like losethos fit in and get along. It is a tricky thing to do under the best circumstances and a very large, very public forum only magnifies the challenges involved. The way mental illness expresses itself is partly influenced by social factors. The social factors here would almost certainly make him behave worse, not better. Most people have no idea how to constructively interact with someone who is genuinely mentally ill and it is all too common for group response to the situation to seriously compound the problem.
If it were a smaller forum and if I were one of the moderators, including him might be constructive. But here, I don't think so.
I don't feel I am being very clear. I have a medical condition and am not at my best today. So, sorry if that doesn't clarify anything for you.
I see no reason to suggest that subjecting losethos to a similar debacle would benefit anyone. I wish it weren't so, but the reality is that most "normal" people just aren't as nice as they would like to believe they are and they don't hesitate to do truly gruesome things as long as they can find a way to pretend it isn't really their fault (distinguishing between "IRL" and virtual interaction is a convenient way many people justify being assholes online).
An entire forum ganging up on one vulnerable individual and blaming the victim for it is an all too common testament to this ugly underbelly of humanity. The people in charge here are wise to not allow a situation which would actively foster such ugliness. In the abscence of a better answer, the current solution errs on the side of at least not sending the message that lynchmobs are welcome here. The ugliness would not stop with losethos. It would spread and soon no one would be safe here.
> (distinguishing between "IRL" and virtual interaction is a convenient way many people justify being assholes online).
Yes x 1000000.
Have a good evening.
[1] Some of the comments are noise. The pretty harsh language would be challenging for some people to not respond to.
I posted a "Ask HN" question inquiring about this user and his comments, and my post was marked "dead" within a minute. Only thing I've ever had marked dead on here (that I'm aware of at least).
Thank you for your explanation; I would have never guessed it was something like schizophrenia.
The general consensus is that he deserves to be treated like a human. He may, sadfully, have a mental illness. That's why further inquiries are shut down.
If you pay attention you'll notice that the verse he quotes are relevant to the topic at hand - he's not just posting randomly.
In fact, it appears the nature of his posts has been discussed quite a bit on HN over the last few years. I'm still somewhat new here though, so I imagine as people continue to join HN questions about his postings will continue to be asked. And you can't really blame them for being asked (how was I supposed to know what that prose meant?). I suppose the best solution is that instead of downvotes and ridicule (as I found in many previous topics on here), linking to the same page I have above would eliminate a lot of contention and confusion.
EDIT: Yikes, I'm not sure I'm coming across like I meant to. I'm not implying being different is bad AT ALL. Sparrow, I really like your operating system and will download it tomorrow to learn about it.
I really liked the goal he started out with. Creating a 64bit C64 type environment for young programmers to mess around with and learn to build stuff.
My intent is not gawking. My intent is to confront everyone with the reality that they're indirectly shunning one of their own (if anyone fits Hacker News, it's someone who wrote his own entire OS/language/demos/etc) due to mental illness. Due to the way that hellbanning works, he continues to reach out to us, and we ignore him.
I consider this to be one of the great failures of this community.
Furthermore, as you can see by some of my sibling replies, many people are _not_ actually aware of Terry or his accomplishments. SparrowOS is actually pretty amazing, for a number of reasons, and so I wanted to draw attention to them in a time when it's conversationally appropriate.
I am not religious in any way, but since Terry quotes the word of God so often,
> “Then the King will answer,
> ‘I tell you the truth, anything you did for even the least of my people here,
> you also did for me.’
>
> Matthew 25:40
I'm not saying the right answer is to un-shadow ban him either. I don't know what the right answer is. But I can tell you that I think about him and it a lot. I wish more people would. Frankly, I saw http://i.imgur.com/USsN6.png this morning and almost cried.
But I don't agree in practice that HN is the best place to find discussion of things like a hobbyist OS written in ASM, because it is so strongly oriented toward the business end of the startup scene. It is very typical to see posts about how engineers are arrogant and socially inept, or how annoying it is that there is so much technical stuff on HN, or how RMS is dangerous and revolting, etc. So frequently the yardstick for judging things is popularity and money and ability to manipulate perceptions, rather than knowledge or playfulness or building things which are really high quality for its own sake.
So while (say) Zuckerberg's "Hacker" concept might go down well here, I don't think that old school "Hacker" values really have much place here.
I would like to see it more and more away from Zuckerberg and more and more towards old school, so I'm attempting to be the change I want to see in the world. ;)
Anyway, schizophrenia is a very complex illness, with five major subtypes and many related disorders. I am not a doctor, and I'm not privy to his medical history, but what I can tell you is that it affects individuals in different ways. It's entirely possible that Terry is only lucid when he's talking about CS stuff; I don't know if that's true or not.
For more, I'd start here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001925/
> They've been writing their own operating system...
Not criticizing, just pointing it out. I read it and wasn't sure why you had used "they".
I actually used 'they' because I generally don't try to gender someone unless I know what pronoun they wish me to use. It's just default speech for me. You'll note that I replaced it with 'someone with schizophrenia' and tend to use "Terry" rather than 'he' even; "Terry" can certainly be a woman's name.
That said, something about the above sentence tripped my othering-detector, so I had a moment of 'ugh,' but as I said, it went away. I don't think it was incorrect/wrong usage, I was just sharing a strange moment that happened in my own head. I don't know why my brain parsed it as "those people can't have a normal conversation" instead of my usual genderless usage.
The OP does have an interesting question because a characteristic symptom of schizophrenia is a loss in train of thought. This seems apparent in his posts because they seem, in a lot if ways, to diverge away from the actual topic (such as meeting God, which also demonstrates delusional thinking).
It's interesting because such losses would make it hard to sit down and focus on writing something coherent, which seems like it'd apply to programming just as much as writing and speech. Though, if he becomes very lucid when discussing CS stuff, perhaps programming as an activity itself provides that lucidity.
Programming may be his therapy. Occupational therapy is often pushed in mental hospitals (I speak from experience).
Either way, it's not even a good idea to try and approach, even it with the best intentions, for you don't know of the damage you may be causing. It's hard to believe but you have to be very, very careful of what you say or you risk furthering his mental health problems. It sounds cruel but the best thing would be to let them be, or at most focus 100% on CS.
I speak from my experiences as a mental health patient and becoming very close friends with a schizophrenic.
I have worked with people like this, seen marriages to schizophrenics (somewhat less severe that Sally), and seen families supporting children with severe autism. Many of these are wonderful people and you are blessed to be able to see this.
But you, yourself, are going to need help to make this work.
Doing this for 18 months is one thing but you are going to need to build serious structural support for yourself to make the long haul. Build friend and family relationships where you can talk about what you are going through and which are committed to helping you through it. Make money, save as much as you can and avoid debt like plague, you already have enough stress in your life. Get a life insurance policy, get a will that creates a trust for Sally and receives the proceeds of the policy. If you are of any faith consider building up your church community.
You are essentially married to a not-normal person. You're going to have not-normal problems. It's okay to feel sad and tired and frustrated. Have people around you to help carry the load.
You have taken on a vocation as mental health advocate and social worker. Case management, navigation of the health system, is actually a profession, if you look around you'll probably find tools and practices to help you deal with the enormous administrative overhead involved with services.
Please don't take this the wrong way, but you should go get yourself checked out for psychological and emotional dysfunction. You are clearly yourself not-normal, which is awesome, but take seriously the possibility that you've got weaknesses of your own that need work. If you had ADHD or depression meds would make enormous improvements in your functionality. Even if it's all good, being in therapy, even only once a month, might not be a bad idea. Having a professional who knows you and can spot signs of depression or stress or anxiety could be handy.
I can't say enough how much I admire your vision and determination. My apologies if all of this has already occurred to you. Please take care of yourself.
Do you really, honestly think the author will be happy - and for long (say more than 2 years, after the initial thrill of doing something odd and new)?
It does not looks like a sane relation to me, but more like a relation based on needs - such as the need to "save" someone (frequent with young upperclass women) or such as a profound emotional need to display love.
"I'll throw myself in front of a bus for her if she wants it" - this doesn't looks like a good thing to say about a relationship - especially about a relationship with someone hearing voices who might recommend such things.
Are normal persons (or life) so boring that one needs to import another person problems - especially unfixable problems given the state of our technology regarding schizophrenia?
(my cousin has a severe form and spends most of his time in various institutions)
I tend to agree. But it's something that common to many relationships, not just those involving people in unhealthy relationships.
> - especially about a relationship with someone hearing voices who might recommend such things.
I'm not sure people with a psychotic illness recommend directly that another person should throw themselves in front of a literal bus.
And I hope that OP has enough insight to recognise when the (metaphorical) bus is real or a product of illness.
> Are normal persons (or life) so boring that one needs to import another person problems - especially unfixable problems given the state of our technology regarding schizophrenia?
I am not talking about the OP here. With that disclaimer out of the way: sometimes life with someone who has a severe mental illness is just more fun; it's more exciting; there's more stuff to do. This can be useful - you go to different places and experience life in a different way. Or it can be unhealthy, with dependence and enabling and people wanting to "fix" others and getting locked into a cycle of recovery and relapse. The pre-mania phase of bi-polar can be incredibly productive for some people.
I don't give that good odds for their happiness. But as good odds as I give my self.
It is 9 months in, the author and the woman are incredibly in love. Many people never get that, at all. Ever. I had it and lost it.
So I disagree with your dissenting opinion. It is worth trying.
The hard part is to leave failed relationships before getting so much scars that you will be emotionally dysfunctional after the mourning phase. If their relationship fails, I hope they get out ok. [edit: The failure modes here seems as _the_ scary part.]
And now a New Year resolution that will garner me many an upvote -- talk computer stuff on HN. :-)
That phrase you highlighted ("throw myself in front of a bus") also impressed me when I read the post. It tells me that the author himself should get some help.
If there's something I've learned after more than a year of being together with someone with a mental problem is that you need to take care of yourself before you can take care of somebody else, otherwise you're both going to drown in problems.
The author said they'd already tried a bunch of dating outlets with no success, and then they found this wonderful woman that they fell in love with
Believe it or not people with mental illnesses have wishes and hopes and dreams too, and having a partner nearby that loves you can make some things a whole lot easier, and make life seem worth living even in the toughest times.
I've managed to live a pretty "normal" life so far, even with my health issues. I have both Bachelor's and Master's degrees. I've been with my wife for 5 years so far. I've held down jobs pretty well, with ever-increasing levels of responsibility. I have healthy hobbies that take quite a bit of attention but do not become overriding obsessions.
My wife and I have different struggles than most other couples. She is most definitely not with me because it's novel, nor to "save" me or any other sort of co-dependent nonsense.
Schizophrenia may not be fixable, but it is controllable to a degree and with care it doesn't have to mean a life in institutions or a life without a satisfying career.
I have mild hallucinations. Pretty regularly I have odd physical sensations, like the skin on my legs is sloughing off or very convincing body dysmorphia. Stuff like this is worst when it keeps me awake. Exercise or a hot shower tend to fix this.
When I am really stressed out I have some auditory (usually more or less ambient noise) and visual (usually motion at the corner of my vision) hallucinations. The visual/auditory hallucinations usually only kick in when working 50+ hours a week for extended periods and worried about personal things. To minimize these periods, I work super hard when I am working and try to keep complications to a minimum. I'm sure it has held my career back somewhat not to have the same capacity for work hours as others. (Yes, 50+ hours a week is minimal for a lot of people, but for me I need that extra time to relax and recuperate.) The last visual/auditory hallucinations I had were pretty recent. The past couple of months required some 60ish hour weeks, I had a good deal of disrupted sleep and my wife had some health problems.
I have strict routines. When they are broken I tend to get upset. For example, I have a rigorous exercise routine. When it snows and it makes it harder to get to the gym or out for a run, I get disproportionately angry. I eat things in a very particular way, if someone disrupts this I get angry and will probably tell them about it.
I don't like it when people repeat what I say unless I explicitly give them permission. An example is that my wife might discuss something with me and then discuss that with someone else, and include my view on the subject. That upsets me.
I do not struggle much (at all?) with paranoia or catatonia.
There is some more, but I'm not super comfortable sharing in a public venue where potential future employers are likely to see.
I recognize all of these things are not normal. Over the years I've built up a good set of filters that keeps most people from even noticing. That's not to say I bottle up the reaction, it's just that I've built in some mental processes that help keep the keel even.
I thought about deleting the posts. I'd really rather practice not worrying about what people think about it. It's a part of me and if others can't accept it, that's okay.
I could never say anything bad about her. (How could I? There's nothing bad to say.)
I'm sure she's a nice person, but no one is perfect. My concern when I hear someone say something like this is that they're in denial about the things they don't like about their partner; and those things will pile up, since they're not getting dealt with, and one day the dam will burst and all those things will spew forth.
I am not saying he shouldn't stay with her, but as others here have commented, it would be a very good idea for him to be in therapy. This is going to be a bumpy ride at times, and he is going to have to understand himself better so he can be there for Sally.
Ultimately, I do think I love her deeply, but since we've parted we've both done much better socially, and she seems more motivated and focused on her treatment. Obviously schizophrenia is a very different situation, and I hope OPs story doesn't go that way, but there are definitely some of the same things I recognized in myself in the first year of our relationship in this post. Hopefully OP can maintain the balance between support and life-long self-sacrifice.
And what shall the gentleman do? "Well I love you but it's probably a mistake because I'm probably a mess myself so let's just walk away from it?" Even were this situation as bad as you imagine that strikes me as a soul-killing response to problems.
I agree this looks rough but I've seen some very bad situations that ended up looking like something from Disney. Those situations had heroes and those heroes went through some crazy shit. There is hope.
So. The guy is going for it. Are we satisfied to comment that it will all end in tears? Or shall we look for some way to help it to a better end?
It isn't enough here to note the risk. You have to offer something constructive. I don't say "not hard", perhaps this relationship is a terrible idea and if it is so then it is no kindness to pretend otherwise.
But the OP simply isn't going to hear "dude, co-dependent, not good". If you see trouble clearly enough to say so then you have a duty to offer some path around it or through it.
It is OK to size up a potential relationship and make a practical decision about pursuing it before you actually fall in love with someone.
For most people, starting a relationship with a severe schizophrenic is a bad idea. You're letting yourself in for a lot of suffering and very likely you'll further injure your loved one when you eventually leave because you can't take it any more.
I think part of growing up is recognizing that not every person you feel attracted to is actually a good person for you to be involved with. Letting feelings of attraction trump one's better judgement causes a awful lot of misery in the world (usually in much less dramatic but much more common scenarios).
I'm speaking of the general case here. As you say, sometimes seemingly reckless relationships do work out. Kas clearly doesn't regret falling in love with Sally and I hope that they go on to have long and reasonably happy lives together.
Absolutely.
But that size up should consist of more than simple pattern recognition.
I think part of what people are picking up on is that for all his generosity of spirit and love for Sally, he's decidedly unsympathetic to anyone else which suggests to me he's underestimating things. Was Mr. WoW a horrible human to begin with? Did he know what he was doing? Did he have the support structure you excellently advised about creating in your other post? Did he just love WoW or did WoW become his only escape from a situation he could no longer handle? Those aren't questions for anyone, just ones I might ask myself.
The simple fact is that you don't have the right to say that to someone, not ever. To consign someone to permanent failure, to even call into question their reality as a person ('broken') is unutterably cruel.
We all have the right to choose who is in our social life, and we have the right to choose our boundaries, as arbitrary and possibly awful - or healthy - as they may be. There really are people in the world that have serious mental illness, and it's okay to not want them in your life. But that does not give you the right to consign them to a label, and to predict their future, and to dehumanize them, calling them 'permanently broken'.
I'm still friends with her, but not particularly eager to try again with a relationship. We try to see each other once every month or two to catch up on each others' lives, but otherwise aren't in regular contact (because when we are in regular contact, bad things happen). Both of us are dating other people.
Also, back when I was a teenager I had many of the same mental issues she did. (Perhaps that's why I latched onto her, and why we have such a tendency toward codependency.) What helped me recover from them was not the people who did the darndest to help and bent over backwards for me, at the expense of their own well-being. That tended to actively make things worse. Rather, it was having adults in my life who served as solid role models, secure in themselves and their own lives, who would interact with me as a person but still set very firm boundaries. And they were relentlessly patient about this. It took about 5 years. You can't be relentlessly patient with someone for 5 years unless you are simultaneously taking care of yourself and carrying on with your own life.
I wish the author the best and hopefully something good comes from it, but my guess is that it will be a tragic relationship with tragic end results.
That, exactly that, is what life is all about. If you don't get it don't bother living life until you get it. Simply put, because your existence won't have any meaning to drive yourself through the hard work ahead through the path that will change a life beside your own.
To the OP, people like you still give me hope about the mankind. All my best feelings and thoughts will be with you and your beloved one. I'm sure you'll get through that, and live happy. It's just a matter of time.
So, WoW?
http://www.amazon.com/Shut-Stop-Whining-Get-Life/dp/11180245...
Sometimes the old method of having one's parents choose a mate appears to be the better thing. Some cultures will investigate a potential mate's family background several generations looking for physical or psychological problems, thus averting potential disaster or the bearing of flawed offspring.
On the other hand statistics show that when love strikes, such marriages last longer and result in more children than arranged marriages.
Can you choose who you fall in love with? Likely no, but you can know when it's happening and terminate the process if you see serious warning signs. In this story the warning signs were explicitly posted at the entrance gate.
Woah, woah, woah. Surely you don't mean that anyone deserves my or your or anyone else's romance and love. These things don't mean anything unless they're freely given.
This is a bit confusing to talk about, because the terms colloquially applied to such behavior (the insensitivity of which the current context makes clear) are "crazy" or "psycho." Every time she did something destructive, I had to ask myself: is she doing this because she's mentally ill, or because she's "psycho?" Meaning, in less offensive language, is this purely mental illness, or is she also a cruel, capricious, irresponsible person? I couldn't even be sure it was valid to ask the question, but my intuition said the latter. She was just as destructive to herself as she was towards everyone else, but then again, so are many people who simply have "issues" without major mental illness. On the other hand, she had ongoing symptoms including auditory hallucinations (her version of "well" was when she knew they weren't real), and she often made strange connections between things, strange jumps in conversation, which she couldn't explain coherently. I always felt guilty about holding her responsible for her behavior. After I cut off contact with her, I felt very guilty about it at first, because I had such intense feelings for her. I thought, "If I run away from her, who will ever stay?" When I caught myself thinking that way, though, I knew I had made the right decision.
The reason I tell my story is that it's possible Kas has satisfied himself on which aspects of Sally's behavior and personality are "her" and which aspects are due to her mental illness. He says she's "Guileless, straightforward, self-aware, good-hearted, open-minded, always truthful, always kind," which does not describe someone acting under the influence of schizophrenia. When he says he would throw himself in front of a bus if she asked him to, he's clearly not talking about the schizophrenic Sally, unless he has a death wish. If he has separated her from her mental illness, perhaps it's no different from loving someone who has any other disability.
This is all bound up in the question of free will, of course. People generally believe in free will, and they treat mental illness as a limitation on free will. If you believe that personal history is just as binding as mental illness, then any discrimination on the basis of a person's behavior is equally just or unjust whether they are mentally ill or not.
Side note to others - in my experience with people with schizophrenia, they usually prefer to be referred to as just that, "a person with schizophrenia", not "a schizophrenic". People are more than just their illness.
It's an outrage that a disabled person is expected to live independently on $661 a month.
Even in Canada where we have social assistance and state healthcare the disability pensions here are abysmal. I spent my adolescent years growing up with a single disabled mother and that's pretty much all she gets to this day; less than minimum wage. If it wasn't for me working long hours after school and the alimony from my estranged father we wouldn't have made it. It's frustrating that she cannot live close to where her primary health care providers practice and cannot even get to them on her own any more.
I wish we'd spend less money as a society on jails and war and more on eliminating poverty and researching ways to enhance the human condition.
> When I feed the poor, they call me a saint,
> but when I ask why the poor are hungry, they call me a communist.
>
> - Dom Helder CamaraBut when it comes to mental illness, it's different. Those afflicted are somehow no longer a part of our in-group, and it becomes easier to turn our backs on them. This post is a sort of therapy for me as well, you see, as I've turned my back on two similarly afflicted former friends. Difficult decisions indeed.
To be sure, medication is not always effective for schizophrenia, but the disease's course without medication is a terrible one.
I'm not sure how schizophrenia is handled in other countries, but in the US you can't force medication except in a hospital (often via the ER). And there is a dire lack of facilities that specialize in treating and supporting people with schizophrenia.
Once on a section medication can be forced. But lack of capacity to make the choice is not automatic, and so people have to be careful when forcing treatment. This is especially true if there are "Rainy Day Action Plans" or "advanced directives" where the patient has (while well) laid out plans for their treatment when ill.
There are also community treatment orders where people can be forced to take medication while living in the community.
In theory there are protections for patients. In practice there's a scary amount of abuse of the system. Doctors use coercion (they say "go in voluntarily or I'll section you", with they must not do) or once in hospital patients are forced to take medication which they disagree with, and which they haven't consented to, and which they've had previous bad effects from, while not allowed to take a medication that they've used before.
The UK has a complicated system of NHS (free) health trusts buying provision from private hospitals. This especially happens with mental health services. Services for young people are underfunded and over crowded. Services for people with learning disability are the same. These are some of the most vulnerable people in our society; they may have suffered horrific abuse at the hands of a family member; and abuse may continue when they go to hospital. (There are a number of high profile cases in the UK that came to light last year.)
When $1,500 of tax payer money is being used every day to detain young anorexic women in hospital you don't want former Mugabe torturers working with them. (http://nehandaradio.com/2011/07/19/mugabe-cio-henchman-in-uk...)
Having said that, we have good services for people with psychotic illness. And we've developed good services for "people with first episode of psychotic illness" because early intervention is helpful.
It's like a jail - at least the public system is. I was also threatened to be scheduled again by a person part of the team who do a follow up after you are released because I refused to allow them to visit my home (I agreed to this just to get the fuck out of the hospital). Shortly after you're admitted, they sit you down with a psych, his intern or some student and 2 nurses, ask you a bunch of questions and while the others sit there and watch you like an exhibit. It's such a game, one can't pretend they are 100% well otherwise they know you're lying while on the other hand, you can't be truthful because then you know they're going to force you to stay. I have insight into my delusions and I know which ones are real and which are not.
I managed to talk them into letting me leave and thankfully avoided the poisonous, mind numbing shit they say I should take. In the event they would force me to stay, I already figured out a way to scale the wall and leave. Of course, you can imagine the drama that would proceed that, thank fuck it did not come to that but I will not take their medications.
The first time I was in voluntary, they put me on zyprexa (pretty sure these medications have caused me numerous health issues) and I got out a week later and stopped taking that rubbish but the 2nd time they forced me into the hospital. Now, I won't contact them again regardless of what I need, you're best to keep it all to yourself because these people will kill you, it might not be their intent but they are so biased by the fact you're in there as a patient that they feel they need to give you something regardless of the reality.
BTW - being scheduled stays on your medical record. So now in the event that I actually need some medical assistance, they'll look at my history, think "oh he's been scheduled before, lets schedule him again!" I'm pretty sure I have some sort of brain problem (aneurysm, tumour, cancer, not sure) but I can't get help because the moment I mention this stuff, they'll assume it's because of my past history. I can die here or I can die there, which do you think I'm gonnna choose huh?
These places don't help the mentally ill, they just drug them up and shutter them away.
This is unfair. From my limited understanding, it's not just FUD, the medications do "dull" their wits and have very unpleasant physical side-effects that any person would legitimately not like. It may make them "more normal" to some extent, but at a cost.
While I know this to be true in cases like that of my own family member, your comment about the side-effects of anti-psychotic meds is entirely valid.
> It's the kind of thing that makes me ashamed of my own country.
I think the author is extremely ungrateful for having been born in a country that even provides _that_.
Do you know that _software engineers_ at Microsoft India, yes Microsoft of all places, get paid Rs. 30'000/month ($600/month) when they join in as a trainee?
People, we're talking about software developers under the monicker of "trainee"; people who've been through 4-year college _and_ been smart enough to get accepted to Microsoft India (in a highly competitive country) -- getting paid $600/month.
This guys has all his facts wrong when he says $600/month is bad in Gabon, and he's being totally ungrateful when he criticizes the U.S. gov. for what they're giving; not showing an iota of thankfulness.
Does the author know nearly 50% of children (hundreds of millions of children) in _India_ are malnourished?
In India, a completely healthy person who can't find a job, will be left to starve by both government and society. It's a ruthless, cold, heartless nation compared to the government of the U.S. In fact in India, even food meant for the poor is stolen by greedy politicians. It's a terrible country.
You should be thankful to be an American, instead of expecting even more from a government that far surpasses most countries in the world in terms of what it does.
He also has a book called "Rethinking Madness" which is amazing.
Basically, there is no medical evidence for classifying schizophrenia as a disease. He believes that it is a state the mind creates for itself when it's surroundings stress the person out too much. There are very high recovery rates for schizophrenia in 3rd world countries, which he believes is due to the lack of medication.
Looking at the state of schizophrenics in India, I find this hard to believe.
Well, yes, it's really easy to say that a disease doesn't exist if you ignore all the people who are suffering from it.
> they don't just do better because they're given less drugs, it's also because of social differences in terms of how families interact with each other.
What "social differences"?
Schizophrenics in India are far more likely to go undiagnosed and untreated, which only exacerbates the problems for them and their families. That's a big difference from saying that there's a high recovery rate, let alone that it's not a disease.
Not sure if that statement is entirely reality-based:
http://en.wikipedia.org/wiki/Prognosis_of_schizophrenia#Inte...
I think the best way to think about it would be use the biopsychosocial model. It might start for psychological or social reasons, but it eventually causes biological changes in the person.
It was structured very differently from conventional psychiatric treatment centers. Most of the staff were volunteers and uniforms were not used. There were only a few clients/patients living there at any one time. The staff fostered an environment of trust and openness. They did not medicate the clients and instead they tried as much as possible to be open to the psychotic material of the clients. In such a supportive environment, most of the clients showed improvement in their psychotic symptoms in as little time as a week. Staff were picked on the basis of their personality and experience with altered states of consciousness as it was felt that would make them better able to connect with the psychotic clients. The doctors on staff did have the ability to medicate and sedate clients if absolutely needed.
So, while I do think schizophrenia has a heritable component, the current medical model may not always be most appropriate or effective treatment.
Beauty stays till 40-50, Intellect till 60-70, after that, only those who love each other for the heck of it, truly stay happily ever after.
Thanks for sharing your and Sally's experiences. It takes a lot of courage to do.
Your calm words will, I hope, do a lot to explain what it's like.
> I think most guys, on a first date, upon hearing a young lady talk seriously about being visited by aliens, would probably find some reason to cut the evening short. I merely listened. Sally "knew" the alien visitation wasn't real. But it felt real enough to her when it happened. So I asked her to tell me about it in detail. And I listened, without passing judgment. She ultimately laughed the whole thing off, but I knew it was an important part of her reality.
Talking to people who have hallucinations or who hear voices is sometimes fascinating. Sometimes they start the conversation and you don't know that anything is different, and because they are not lying the story sounds utterly convincing. And then, maybe, some odd details start creeping in. Or maybe the story is about alien visitation and it's obviously not true from the start, even though the person telling the tale it utterly believable.
> She didn't know that when a yellow car pulled in front of her on the road, it didn't mean there was danger ahead.
At their gentlest these paranoias and delusions seem similar to everyday superstitions. I think that's what makes it harder for people to understand just how strong the feelings are.
> As a disabled person (who can't work a normal job, because of the severity of her residual symptoms), Sally gets a monthly check for $661. That's it. That's all. No more. Here you go: $661 a month, now go take care of yourself.
This is the thing I really want to talk about.
I live in the UK. We've had a variety of different disability benefits over the years. Unfortunately those benefits have not kept current with modern treatment; nor with modern political directions; and now we're in the unpleasant situation of needing to cut our massive welfare bill, but not having any suitable alternatives for people yet, and not having adequate support for disabled people.
For example, in the 1980's people with bad back were told to not move, to lie flat on their back on a firm mattress. Many people were signed off work for years because of bad back. We know now that's terrible advice. If there's no underlying illness causing the backache (and there can be serious illness causing backache) you should carefully take pain killers, and keep moving. Some exercise will help recovery, and some other exercise will prevent relapse. So, now, with bad back you might need a bit of time off work to let the pain killers start working, and then a bit of time to get the exercise going, but then you can return to work full time.
Applying that to MH problems we see that people with mood disorders like depression were cocooned away from stress. "Don't go back to work, because you'll trigger another episode of illness". But many people want to work. They do not want to live a life on benefits.
Ideally you have a programme that finds people the work they want to do, and then gives them time-unlimited support for that work. That support would be things like helping someone sort out transport; explaining to a boss what reasonable adjustments (a legal concept) means; discussion about difficulties staying in work and how to resolve those; discussion about any prejudice that is happening etc.
Such programmes exist, but are patchy and usually very busy with long wait-lists.
And because our benefits system hasn't caught up people can get caught in nasty situations. There's a variety of benefit schemes to help people get back into work, but if you're working (even with a severe, enduring MH problem) they might take the disability benefits away from you, which can then shut down other parts of your support network; and which can be very stressful for some people. Coping with complex benefit and tax systems is not helpful when you've just started your first job in 12 years.
So, while we have made a lot of progress, there is still a lot of progress to be made. I wish you and Sally all the best for the future!
One thing that is being tried is more direct scrutiny of people on various disability benefits who are certainly capable of working and caring for themselves, but got 'in' under a more permissive system when the bills weren't as high.
I know this because of some acquaintances I know in the UK who have been on various disability benefits for some years, and they update us on the hoops they're having to jump through to requalify every so often. Keep this up and weed out the people who are capable, so there's more resources to go to those who truly need it.
Unfortunately at the moment the assessment, while with a real doctor, is merely a box ticking assessment. You turn up in a clean shirt and tie (because you have a crippling OCD)? You don't get points. You turn up unshaved, unshowered, in an unclean t-shirt? You get points. At the end someone adds up all the points you get. If you get more than X (for physical problems) or more than Y (for MH problems) you get the money, otherwise you're fit to work.
Very many people who are deemed fit to work go on to win their appeals.
And that's the fundamental problem.
Is a wheelchair user able to work? Obviously, yes, there are many jobs someone in a wheelchair can do. Is a person who is totally blind able to work? Again, yes, there are many jobs that person could do. It's the same for people with mental illness; they might be able to work in a quiet office but not do anything customer-facing. The might be able to do many jobs, but need a bit of help to get those jobs.
Moving people off disability (disabled and not working; (we also have "cover extra costs of living because you're disabled benefits which get paid if you're in work or not)) benefits probably just moves them onto different benefits. They might still qualify for housing benefit and tax credits; the person caring for them might qualify for carer's benefit; etc.
Benefits and Tax in the UK is a mess. :-(
We seem to only have systems that provide benefits/services to people who don't work at all. Going back 20+ years, I worked (at a burger king!) with someone who ended up quitting because it was 'better' for her to be on our state's welfare program. Why? If she worked, and earned more than (IIRC $120/week or something) then she would lose all her benefits, which added up to far more than she could buy on the $120/week she might earn working at BK.
What struck me then that would make far more sense is to offer a sliding scale of benefits, but phase them out if you didn't work at all. She could have stayed working at BK at, say, $120/week, and in return received another $100 in benefits, have been far better off, but instead, the system deemed it better to have her earning nothing, and living off the state for $150/week.
My numbers are probably off some - it's been 20 years since we had that conversation, but it was one of the first times it struck me how backwards our regulations and policies are. It's not gotten any better in those intervening 20 years.
On the other hand, if you want to be self sufficient both now and in retirement you need to make around 50% more. So, where is the break even point?
Compared to the ATOS (the independent assessors) who are real doctors but who are forced to operate to a very strict, limited, set of tick boxes. That kind of works for some physical disorders.
"On my bad days I cannot stand for more than 30 minutes"; "On my bad days I cannot walk unaided more than 10 metres".
Thus, real doctors are not allowed to use their subjective experienced judgement.
http://en.wikipedia.org/wiki/Atos#Controversy_over_disabilit...
I think the problem is that white-collar professional hazing is designed to weed people out. It's built to separate and elevate the uber-reliable (who are often the least creative) above the rest by subjecting people to contrived stresses and subordination. Investment banking analyst programs (120+ hour weeks) are the worst for this, but it's far from limited to one industry. Most companies aren't interested in someone who can't show that he went through 3 years of stressful bullshit and came out a survivor.
If offices start accommodating people with these illnesses, then the whole hazing program has to be thrown out. I would argue that the hazing is not really necessary for most jobs, but my view is a minority position among the people in power. The hazing doesn't only come from above, of course. Subordinates and colleagues can "shit test" (one of many Game-isms that applies to white-collar employment) just as hard as managers. This is why "too nice" managers often end up with young wolf problems, and the eaten are the people who are less able to deal with the inane, nonproductive stress.
I say this as a person of extremely high creative talent with a mild mental illness (panic disorder) that has slowed my career considerably (now, less so, because the therapies work and I'm down to 2-3 serious attacks per year, although I'd have a lot more if I tried to compete on hours). In this corporate uber-reliability game, I'm one of "the weak" and I'm supposed to lose. The fact that I'm extremely strong in other ways (creativity, software, mathematical intuition, writing) is irrelevant to subordinate white-collar positions.
I absolutely agree that we should give these people meaningful creative outlets and allow them to have purposeful lives. No question there. However, this requires dramatically re-defining "Work". It requires eliminating the years-long wringer of nonsensical competition that people have to engage in before they're trusted to do anything real with their time. We have to blast centuries of social behavior, not all of which is the fault of "management", away outright. It's not something that can be done overnight.
The difference between the "weak" person who shatters at a 60 hour-per-week effort (over 12 weeks) and the "strong" one who can stretch to 85 is unimportant, because if you're smart, you don't push people to the rightward side of the decline curve unless it absolutely can't be avoided.
Reliance on differences is human reliability is like having a 50% faster processer but implementing an O(n^3) algorithm when an O(n) exists. It made sense in a few pre-technological professional contexts, but no more in the typical white-collar world.
You want the creative people who'll automate away the need for human reliability, which is limited even in the most stable people.
My point is that the white-collar office regime measures people based on their decline curves rather than their performance under good conditions, and that may have worked at one time, but now it selects for the wrong traits and, additionally, makes typical institutional work inhospitable for people like the OP's wife.
Obviously, there are exceptions. You want an uber-reliable person for U.S. President. For a software engineer, you care about overall ability and performance, not worst-case.
Even though there are many companies who would immediately fire that person; they are missing out on a lot of potential by doing do.
As for jobs like programming where some degree of eccentricity is acceptable - I think it depends on how amazing that person is. If you're a genius you probably will find opportunities that will accept a decent amount of erratic behavior. If you are a below-average programmer, your employers are not likely to be as accommodating.
I wouldn't want even a well-treated schizophrenic flying a plane, but for most jobs, I think it's possible to make an arrangement where the person's health problems don't pose a safety risk or freak other people out.
Regarding "99% of the time they are fine", how many people don't have 2-3 sick days per year? If nothing else, that rules out everyone with kids. I suppose it depends what they are doing during that other 1% and how easily they can manage it, and when it comes to psychosis (with which I have no experience or expertise) I am way out of my depth on that one.
One alternative to this is to work on solo projects - there are many people with mild mental illnesses that can find some degree of success in artistic pursuits, academia, or small businesses. But you're explicitly talking about corporations, and there's a reason why organizations can't tolerate unreliable people.
I say this as someone who is much closer to the creativity end of the spectrum than the reliability end. I worked very, very hard to build up the sort of mental toughness and team awareness that lets people count on me to follow through on my commitments, because I knew that if I didn't develop those skills, I'd be marginalizing myself to working on unimportant projects. I'm still quite eccentric when it comes to work habits (I'll often waltz into work at 1:30 PM and have very irregular hours, and I hate it when anyone tells me what to do), but I make an effort to check e-mail and IM from my phone, even when not officially working, and take care of anything necessary to unblock somebody else before I work on my pet projects.
You can't make all jobs like this, but that's hardly the point - lots of jobs can be like that, and they aren't only by choice.
My point is that if you can only do work off the critical path, you're marginalizing yourself because such work is by definition "on the margins". And if you ever discover something huge that's worthy of investment, they'll have to take it away from you and give it to somebody reliable to lead so that people can work under him. (Many startup founders find themselves in this position; they'll come up with a brilliant breakthrough and then VCs will kick them out and hire an outside CEO because they're fucking up the company. Hell, that's basically what happened to Steve Jobs at Apple the first time around.)
Forgive my cynicism, but I think that 99% of what determines who can acquire trust in the corporate system is a person's decline curve. That's how people are tested. The winners are the extremely reliable and the sociopaths who can hack the system. Technology is more enlightened, but still corrupted by typical white-collar culture.
The importance of reliability depends on the job. You wouldn't want an emotionally unstable person as someone's boss, for sure.
In the larger tech companies, the people I've known who have these sorts of problems seem to take hiatuses and come back when whatever episode is complete and they're ready to begin work again. I don't really know how it works on the HR back-end, though.
If the two of you ever considered having kids, there'd be a few things you'd do well to prepare for. I am the child of a severe manic-depressive/alcoholic. I can't begin to tell you the myriad ways this has effected my development, but the influence runs deep and strong. Your children will grow up in an environment of chaos, where crisis is often the default state of affairs. I'm not saying your kids will, in the grander scheme of life, be any worse off for the potentially unstable environment in which they grow, but it can make them feel unusual, left out and alone in comparison to their peers. With any luck, they'll be as well-rounded, if not moreso than anyone else, not in spite of but because of their experiences with a close relative suffering from severe mental illness.
I wish you the best of luck and send all my love to you both.
For some people (most of them, I imagine, not schizophrenics) they do: http://en.wikipedia.org/wiki/Synesthesia
>Our meeting was the fluke of the century. I happened to be scrounging around on Craigslist one day looking for a furniture item. Sally happened to be on Craigslist looking for pet supplies.
Read: one person was posting to a personals section, the other browsing. Not much of a fluke.
For the record, I do not suffer from schizophrenia.
1- Red - Sharpness 2- Blue - Blunt/powerful 3- Yellow - Soft 4- Green 6- Orange 7- Purple 9- Black 11-19- Shiny/Metallic colours
I alternate between brutal honesty on my condition (the approach of this woman) and hiding it (what I'm going through now), and I'm not sure if it's better or worse either way.
I'm pretty aware of people and tend to stay away from "savior" types who think they can come in on a white horse and save the day. As well intentioned as they might be, the behavior often seems unhealthy. I don't know enough about this particular situation but the phrase "I'll throw myself in front of a bus for her if she wants it" seems like a typical thing one of them would say.
I often marvel at the dysfunction of seemingly "normal" people going around without any sort of diagnosis, compared to my actual behavior, which is always at least somewhat stigmatized. I hope that for their sake the relationship works out for them, but for my own peace of mind, I push those people away...
You have a hard road ahead of you. Some advice, from someone with plenty of experience with bipolar disorder (family, romantic relationships, business partners):
* Study Eastern approaches to mental health and spirituality. Buddhism will accept you regardless of whether you have any metaphysical beliefs whatsoever. "You may not believe in God, but God believes in you." (Actually, Buddhism is theologically agnostic and compatible with theism or atheism, but that's an aside.) Don't expect miracles, because it takes decades to get good at this and mentally ill people can't "meditate out of" their illnesses, and but the insights into the mind from meditation and yoga can help both of you.
* You both should avoid all recreational drugs, including alcohol and tobacco. Both of you. Normal people can use drugs like psilocybin, marijuana and LSD with low levels of risk. You can't. Even if you're neurologically normal, your circumstances are abnormal and these drugs are unpredictable even in the best circumstances.
* You have hard travels ahead of you. It's probably good, even if your mental health is totally normal, for you to see a therapist.
* Exercise. It won't always clear everything away, but it will make the situation better.
Just throwing money at someone with a tenuous grasp on reality is not kindness. More won't help.
I'm mostly asking about people who don't pose a danger to others, but who have several episodes a year where they might require a short in-patient stay in hospital.
Someplace where food, shelter and medical care are provided, but not locked or anything - people are free to come and go (including to a job) as they please.
Individual rooms with privacy of course.
It's a stopgap, but one that exists because there are no good solutions. If you'd like to change the situation you're free, but sniping and scoffing is not mercy.