If you want to understand the day to day issues of real people then please watch the documentary *Pain Warriors* that is about Chronic Pain.
It is five stories, four of people with Chronic Pain, two that ended in suicides. My late wife Karen being one of them. The other story is of a doctor that the Medical Establishment destroyed for helping those with Chronic Pain. It is *NOT* a warm and fuzzy movie to watch.
For full disclosure I am a member of the cast, have been intimately involved in Pain Warriors production for several years. I receive no remuneration of any type. It is my mission to raise awareness of those suffering from Chronic Pain and Cerebrospinal Fluid (CSF) Leaks.
Pain Warriors can be found on Amazon Prime, iTunes, Google Play, Viemo (for international) and YouTube (sometimes, they are weird). The distributor set the pricing for the platforms and regions so check around for your best place to watch it.
We could really use your help. Our goal is to get Pain Warriors on Nexflix to reach a wider audience. For that to happen we need to have over a 100 positive reviews on The Internet Movie Database (the 100+ positive reviews on the other platforms don't count to Netflix).
Our segment in Pain Warriors is based on what has become known as "Karen's Journal". One reviewer wrote:
"Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day."
Thank You for your help and bring up this subject here.
> The other story is of a doctor that the Medical Establishment destroyed for helping those with Chronic Pain.
Was this the result of the industry crack down on the over-prescription of opioids and various opioid manufacturers being forced to cut opioid production and marketing?
Society went from one extreme of "we need to treat pain like a disease and medicate it", to the other extreme of "Holy moly we created an opioid epidemic, we need to cut production and sue manufacturers."
Obviously there were a lot of bad actors at play, and I imagine some legitimate practices and patients were collateral damage during these over-reactions.
I don't know about this specific movie, but my real life experience is that a doctor who dares to be compassionate in terms of long-term pain or opioid-substitution treatment often gets shunned by other medical professionals in the local community, up to and including blacklisting and professional/organisational harassment.
like ... if the community turns against one of their own, they manufacture a sort-of constructive dismissal sort of arrangement, and the doctor who stepped out of line behaves and never does that again, quits, or goes out of business.
It can be remarkably brutal and ruthless, and i have no doubt that it is purposeful and cruel by desgin.
Reflecting on how this applies to the tech industry, IME we're still very behind in accommodating those with chronic illnesses and disabilities. The 40-hour work week is still, on the whole, the minimum expectation across many FAANG-like companies. If falling ill during tenure, such companies ~generally seem receptive and supportive. But if you try to join such companies when you are already chronically ill or disabled, and ask for part-time working arrangements or reactive flexibility (e.g. I only have X spoons today so I can't work as much, but I can work a little ["semi-sick day"]), it's much much harder. Nowadays I only have about 2-3 hours of cognitive time per day. After that I need to lie down and do nothing. It seems so unfair that entire swathes of competent individuals are implicitly sidelined because of their illnesses or disabilities.
Strongly agreed! It doesn't just seem unfair, it is unfair.
I also think that there's much more celebration of "overcoming" disability or illness, rather than the much more sustainable (and difficult!) practice of changing your work patterns and lifestyle to live within your daily allotment of spoons.
My wife has chronic cancer* and one day when talking to the doctor at the hospice after a period of grueling treatment she talked about only having so many "spoons" in a day. The doctor liked the analogy as it was a fun way at looking at a real issue.
I'm pleased I now know where it comes from! This analogy helped us both come to terms with managing her lower energy levels.
* I use the term chronic cancer as she has Stage 4 cancer. The term terminal cancer to describe her cancer has been so incredibly unhelpful, its taken me years to frame where we as a family fit into it and how we can live. Essentially, the term has caused more fear than was warranted at the time. So until she needs end of life care, I won't call it terminal even though that is the expected outcome. That maybe 6 months from now or 6 years from now.
I know this thread is about the severely limited energy of chronic pain sufferers, but there's some good lessons here for the rest of us healthy folks as well.
While we have many more spoons than someone who's ill, our spoons are still limited in number each day, despite most of us assuming they are unlimited.
Congratulations, you have earned the achievement “chronic condition”.
Your rewards are as follows.
You have max exhaustion at all hours of the day!
Exercise recovery is bumped from next day to 2 weeks!
Your pain level is now on par with dying cancer patients!
Everyone now considers you lazy and incompetent!
Doctors now blame all symptoms on anxiety!
You gain +1 to medical research ability. But -20 to Reputation.
You now get spontaneous and useless medical advise from people that believe in essential oil.
You are now on timer with your job until sympathy runs out!
Disability now can mock you openly as clearly your faking and don’t have a real condition!
You are now a burden to your family!
+10 sneak score; you quickly learn to hide your suffering!
+20 to loneliness!
-20 to persuasion! Asking for help means doctors think your a hypochondriac.
+10 Planning!
Your kids may be orphans soon, make plans, read fine print on death benefits.
——-
Spoon theory is a great way to reduce guilt people who suffer, and simply can’t do as much on a day to day basis.
When I was first learning to ride motorcycles I came across "A Twist of the Wrist" by Keith Code, which uses a similar analogy for attention.
In this analogy, you have $10 worth of attention to spend. Maybe as a novice rider you spend $5 just coordinating steering, clutch, gears and brakes to keep the bike upright. You then spend $3 on navigating, which leaves you with only $2 left to pay attention to the traffic around you.
A more experienced rider might only have to spend $2 on physically riding the bike, leaving them with much more attention to pay to traffic and road conditions.
Fully departing from spoon theory, but sticking with money and motorcycles, this story was told to me by a friend of mine. This was a few decades ago and he was into racing Ducatis.
The wise old man at the track was explaining how to go fast. The people in the garage that night didn’t seem to be getting it, so everyone got in the back of the Ford van they used for parts and the old man drove.
“You have a dollar to spend. You can spend it on acceleration, braking, or turning. You need to be spending the whole dollar all the time.”
He was coming into a turn faster than any Ford engineer would have expected, gas to the floor. “I’m still spending the dollar on the gas.” He switched to the brakes, slamming them without skidding. The guys slid to the front of the van. “Now the brakes, I’m spending the whole thing. And then to turning.” The guys hit the side of the van.
This continued on, him ranting about dollars while driving around the track. My friend timed the lap and it was embarrassingly close to what they did on their Ducatis. That old man speed.
This notion of limits and edge reminds me of Hunter Thompson's musings on "The Line" in his piece about the Hell's Angels. He argues (wildly paraphrasing) that the fundamental draw (and in some sense, the art) of motorcycles or extreme sports is in finding that edge or limit. The problem he identifies being that you cannot really know where it is without going over it, with all the consequences.
I think he returns to the theme in "The Song of the Sausage Creature."
Myself, I can barely ride a simple bicycle more than about two hundred feet without somehow dislodging myself in a manner with roughly equal parts comedy and tragedy, but the way he wrote that and described the attraction of an edge where on one side laid a perfect moment-to-moment mastery of all of the physics in racing and the appeal of having absolutely nothing else matter at the moment because you simply haven't the space in your brain to do anything else ... and the other side, which involves multiple surgeries, rehab, and long phone calls with insurance companies, it was very appealing. "One of my finest addictions" indeed.
That's the theory. In practice, it's more complex and subtle:
- Not are limits are made equal. Some are okay to be approached from both sides, while others will make you crash very quickly. Racing is a lot about finding and feeling those limits, rather than just knowing that they exist and need to be applied.
- Changing gear, breaking, and applying gas all are physical actions that need some dexterity, to quickly switch between those within fractions of a second is sometimes infeasible. So racers end up just coasting for a short moment to avoid the high risk of a mistake for just a tiny gain.
- Throttle and breaks obviously can't always be fully applied depending on friction, or the danger of one of the wheels getting too much air.
- In a race there is a legit trade-off between lap times and tire wear. Losing too much material early-on will gain you some time initially, but make you lose more towards the end.
If ever there were a statement more universally applicable, I've not encountered it. :)
Racing is, of course, about finishing the race (or maybe the season) first (along with all of additional considerations that implies), not just lapping fast.
Sorry, is this true? Last days I spent a lot of time going crazy because our apps are consuming 90% of memory on our instances and I feel bad/scary for that.
1. Is the app breaking or failing or not serving its purpose in any way? First find the problem, then look for the causes.
2. Let's say your app is using 29G of the memory in a 32GB instance. If you put it in a 64GB instance, will it use 29GB of that, 63GB of that, or does it continue to grow until it runs out of memory and restarts? The first case means you have correctly sized your instance. The second case means the app is good about using almost but not quite all the memory available. The third case is a problem.
The app is not breaking for now, but it will if we send more requests. The problem we are facing is that if we keep adding more instances (we are using Azure web app) the other instsancs also consume 80% (I thought the original memory consumption would be split equally on all instances).
At a minimum, you have to define max correctly. That’s not 100.00% of RAM bytes or CPU cycles and is probably under 25% of Ethernet networks for example.
The principle is true and follows from the rule that no resource should be idle if there are requests that need it to be processed.
Memory, however is seldom the bottleneck. This is because most apps are not designed to queue requests if they don't fit in the available memory - they just allocate until they fail.
So, unless your apps are designed to queue requests in order to fit them into memory, this principle is probably not the explanation for the high memory usage.
I remember a similar anecdote about a legendary F1 driver (possibly Michael Schumacher, but I can't remember).
During practice the drivers talk to their team over the radio about the car's setup. Most drivers would stop talking in the corners and come on the radio during the straights.
This driver would apparently just keep talking all the way around corners. Driving the car was basically automatic, leaving him free to focus on optimising the car.
I work by effort/benefit ratio.
Many programmers start ambitious projects with very high effort and low
benefit, like e.g. a browser/os/videogame/library
which they maintain at expense of their health and limited time.
Low effort, small-scale projects with immediate benefit/utility
are much less taxing on health and don't require constant maintenance. Unix way https://en.wikipedia.org/wiki/Unix_philosophy#Do_One_Thing_a...
Benefit comes in multiple forms. There's the benefit you get
when finishing a project, and the benefit of gathering
experience on the way.
In the end that's the way we learn and improve: by pushing the
boundaries into unknown territory instead of always going with
the methods that have already been working. To actually be
sufficiently motivated to dive into a new hard area, having a
goal is important, even if it's unrealistic. And when the time
comes to actually build something serious it's good to be aware
of what to expect and be familiar with the tools.
I do something a bit similar with learning new tech. I used to just soak up whatever new thing I found interesting, but these days I don't have time to do this and so I have to make sure that every new thing I do learn "pays rent". It has to not just be immediately useful (unless there's no other way to solve the problem with my existing toolkit) but also to generate value in an ongoing manner for it to be worth the time investment.
This sounds like a life one would avoid when consciously thinking about it, yet this will be the destination for most people. I am constantly amazed by how people like geohot seem to escape this. And I am thinking if that could be a model for me, but then again I am maybe ~5-10 times less productive so that might be the limiting factor.
And btw. I love that in english you say “to spend time” it really captures the investment perspective that you mention.
One of the effects of society is to reduce the number of 'spoons' any person needs to 'spend' a day. This is probably a good argument against those who are anti-automation. As a more efficient automated society slowly lowers the 'minimum spoon bar' that is required for net contribution.
I once spent some time at an Amish community, and I saw their elderly and sick all living relatively productive lives. They were cooking, cleaning, watching children, and performing other small tasks that made everyone's life a bit nicer. The only reason these "menial" jobs were available to them was the deliberate inefficiency of the Amish lifestyle.
These things aren't unavailable in greater society. You simply have a choice. I'm not sure you have as much choice in Amish society, and I think the lack of choice is cruel.
If my elbow is broken, I can't cook efficiently. If it doesn't work correctly, same. If walking to the toilet saps my energy, I shouldn't be expected to do the same.
I should also now mention that elderly doesn't mean you are sick. Loads of folks are busy throughout old age. "sick" doesn't always mean you can't do anything, either, and I'm pretty sure the Amish communities take care of folks that can't.
They are unavailable in the sense that rent/utilities/transportation is expensive whether you want it or not, and minimum wage part time jobs won't pay rent.
It's high cost of living that urban singles areas have and rural multi-generational homes don't.
The key thing there is not "no automation" but co-living in the same community; the main barrier to having your retired parents look after the children while you go to work is the need of most people to move across the country to look for jobs.
But those are linked attributes. Automation encourages/requires centralization and industrial scaling, and efficient allocation of labor demands that said labor be liquid in regards to physical location, making jobs less situated. The workforce must become more mobile, flocking to the latest job locus, and therefore more settled people are left behind.
Alternatively, automation might act as a platform for small local businesses (think people who sell via Shopify or Amazon). Indeed, I believe Americans have got less mobile in recent years, not more, though I'm not so sure that is a good thing.
Yes it is local in the context of this discussion (working near your previous home). Of course you are competing with people in other localities who might outcompete you due to better local economic business conditions
The anti-automation argument isn't that automation is bad, and grueling labor is good. The argument is that being forced to change careers can be - depending at which age it happens for a person - anything from taking away significant amounts of wealth to complete impossibility. When you change careers, you usually start at the bottom of the ladder. Past a certain point, such switch is not recoverable, and best you can hope is that your children will start a good career early and won't be themselves forced to switch careers later on.
If automation didn't involve pushing people into deep poverty, it wouldn't have as much opposition.
The lean FIRE people show that the bad part of losing a high income career is the hugely wasteful lifestyle that preceded it, not the career or it's loss.
Automatic sending wealth to capital instead of labor is another issue, perhaps better viewed as capital ownership being centralized as the actual problem.
Achieving FIRE is relatively rare and privileged situation. Many families have non-negotiable expenses, particularly around healthcare. Even for those who don't, going lean will be a huge shock and a downgrade in quality of life. It's only reasonable such people will object. Much like I myself could survive on 20% of my income, but I wouldn't be happy about it being forced on me.
> Automatic sending wealth to capital instead of labor is another issue, perhaps better viewed as capital ownership being centralized as the actual problem.
That's the underlying issue. Not the fault of automation per se, but of the thing that drives it. It serves to highlight my point: anti-automation arguments aren't really about automation itself.
The arguments of those against automation are that it eliminates jobs and consolidates wealth to the owners of the automation facilities, completely eliminating the contribution of laid off workers who go on to work menial jobs else where.
How this "spoons" analogy a good argument against that?
It's both. But it's definitely an argument I've heard used against increasing automation multiple times including in historical contexts, so I'm unsure why you are saying it is not.
Indeed it is. And if you look at it, most of the arguments against tech in general - including all the hand-wringing about AI, privacy and evil tech bros - they're all arguments against capitalism. But it would be boring to repeat the same thing that's been repeated for the past 100+ years, so people instead confuse symptoms with cause.
It's not that. All these things have a common root cause in the form of businesses accumulating capital and making decisions to abuse people. The public discourse is distracted by focusing on minutia - AI does this, robots do that - instead of noticing the common thread: business people decide to use this technology to hurt people.
That's pretty broad strokes, and I am not sure it works everywhere. One of the other effects of society is to reduce -- and it has been fairly constant -- access to pain medication. At first you could nip over to the apothecary for laudanum or whatever. Then you needed a prescription from a physician. Next, one of the effects on society is insurance, so you must also navigate that to get your prescription. And finally the government comes in and decides on a ham-fisted "crackdown" on pill mills, nevermind people who actually need the stuff, so society has put another obstacle between you and relief, so there are quotas, hooray.
The other area where this falls down is standardization, and I think this is exactly a group of people to understand it. Twenty years ago programming was very much the Wild Wild West, but now, seemingly, everyone talks this Agile talk and now we "must" all program like one another, which includes odious morning standups and the being "on call" mentality of DevOps, plus even bog standard shops pretending that they have some kind of Silicon Valley burn rate and velocity to maintain. And if you cannot hack that, tough, find another industry. That's society and that's a transition that has been fairly rough if you are put in a position to count your spoons.
Assuming the benefits of automation are somewhat equitably distributed. But if someone has a decent job which then gets displaced by automation and their next best option is a more demanding job, then automation has increased their daily spoon demand.
I don't believe this especially. We've replaced a large amount of our work with a huge amount of bureaucracy. There's so much of it that it feels like I'm being overwhelmed by just it some days.
What exactly do you mean? You mean if you want to do something extraordinary, bureaucracy keeps you in check? I think "normal days" are pretty automatic in terms of bureaucracy?
It's a very catchy abstraction/metaphor. It did lodge itself in my brain quite firmly once I learned of it. It can feel defeatist to acknowledge such limits in concrete terms, but you gotta work with what you got...
I know people who are comfortable saying "i'm all out of spoons/only have a few spoons left"; it's pretty useful as frameworks go, and hard to express these things so succinctly in other ways. Just saying, e.g. "I'm drained" doesn't cover it when "drained" is the baseline.
> I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
What choices do you mean? I'd say that healthy people have more freedom so they have more choices to make. When you come down to it health is about freedom. Freedom from preoccupying pain, constricting impairment, freedom to do whatever. Choices are a symptom of freedom. We must have a different definition somewhere in here. Haven't read the article yet.
Edit: Having read the story, the spoons are a metaphor for units of personal energy required to do a basic everyday task, and the choices, as used in above quote, are compromises you have to make when you have too little spoons to do everything you'd like.
Edit2: man, it's easy to get downvoted in this thread. Do I come off as unsympathetic or something? I've been depressed for most of my life, so spoon-shortage isn't exactly new ground for me.
For what it's worth, I think that while freedom is everyone's ultimate goal, whether they comprehend it or not, it's not necessary for happiness (and not the same as happiness). Happiness is about accepting what is (whatever it might be). Unhappiness is about rejecting what is. To say that happiness depends on what you can do, is to project your internal rejection onto the external "capability", thus retreating to the comfort of not owning your own feelings.
Of course, if someone said "take this pill and you'll be able to do everything" I'd down the whole bottle, but that's because I'd rather circumvent the symptom, than face my own addiction to powerlessness.
Hard choices. The "Should I do X, or it will hurt me?", "Is it worth feeling bad for doing Y?" related to the disease and its impact.
It's not about choice as in a healthy person having a selection of 10 fun sports to decice which to play in a sunny day.
It's about difficult choices, like "I want to do this sport activity today, but should I do it and feel depleted for the rest of my day? I should double think about doing this"
In other words, we could say that healthy people have more options, but sick people (of the variety of the article, not somebody in a come e.g.), have more hard choices on what to do each day, even simple things (e.g. play with the kids).
Or even simpler things that we take for granted, eg brush teeth, get dressed in the morning, or even get out of bed. And no, I don't mean the usual Monday morning tiredness most of us have.
I have small fibre neuropathy in my arms and legs. I don't do the whole "spoons thing", but I do have to make spoon-style choices.
A choice I might make is: will I go out for a short walk with the rest of the family? By doing so, I'll hurt even more, and will need to sleep when I get back - so extra pain for me, and the kids miss out on playing with me later for an hour or two.
I think I agree with part of what you've said. I often think that disability is something imposed by the external world; it is society's expectations of functionality that are encoded into how we've designed our infrastructure and lifestyles. Spoons are in such deficit, largely, because the world is often unadaptable to our capabilities. We change. It remains fixed, expecting that same amount of capability in order to participate. Participation in the world is optional, but to sit alone in spoon-deficit for life is so so awful a concept, especially because it doesn't have to be that way if we only designed more parts of life to accommodate the entire spectrum of capabilities.
I try to tell myself that comments like GP's come from a place of taking one's health for granted, and have only experienced sickness from eating junk food or not sleeping enough.
I have a genetic disorder that makes me fragile, chronically ill, and limits my mobility. I do PT every day for 30-45 minutes - I've never missed a day since September. I eat healthy vegan food and sleep as much as I can (though painsomnia makes this hard.)
I'm doing all the right things, but I'm still sick. If I didn't do the right things, I'd be sicker. I'm still quite limited, and have to carefully plan things that my able-bodied friends take for granted. That's spoon theory.
A lot of people seem to be incapable of thinking in hypotheticals. All they know or care about is whatever they or close family members have experienced directly.
Oh my god, you're right. I'm cured! Thank you so much! No one has ever made this simple connection before and I'll never know how to thank you properly for your contributions.
Everybody has experienced having a flu. Everybody knows that feeling when you’re sick, and suddenly you realise how much you take for granted when you aren’t. In fact, you even start to _envy_ those around you who haven’t got whatever bug you have!
Being chronically ill is like living in that world permanently.
It breaks my heart, especially for those who become severely chronically ill with diseases like ME/CFS in their teenage years, with little to no indication things will ever get better. Imagine that, maybe spending your next 50-60 years housebound, or even worse: bed bound. Add to that the sheer scale of how ignorant or severely misguided many people are about chronic illness (even doctors, ESPECIALLY doctors!), which imposes such stigma, guilt, and shame on these sufferers.
TBQH I have a real dislike for the relativistic thinking that people apply to this. Everyone does struggle, yes. But the degree of struggle, for some, is exponentially more. To just participate in the smallest parts of life... eating, cleaning, emptying one's bowels, is a daily challange. What if you could only afford energy for one outing to the shop? What if taking a shower felt like running a marathon? What if making a meal was prohibiltely exhausting? The everyday small parts of life that most people enjoy are inaccessible to many. The degrees of separation between between an able-bodied person and a disabled person can be so massive.
So, yes, all people struggle, but the struggle of some denies them reaching the threshold of energy required to do even the minimum expected daily activites. That threshold is the crucial separator between isolation and participation. .. not even to mention the socioeconomic effects.
The phrasing of the article specifically invites relativistic thinking by starting from a premise that's obviously untrue for some, or even most, readers without long-term medical conditions.
In fact, when I first read it, it half-convinced me that I was sick too. Where were those unlimited spoons when I overslept, decided not to shower, put on a pair of dirty socks and sprayed them with deodorant because there were no clean ones left, got to the office an hour late, failed to complete any major task all day, fell asleep on the train and missed my stop, got home an hour later than I should have, ate half a tub of icecream and some raw carrots instead of cooking dinner, and went to bed leaving two days worth of dishes in the sink and still having no clean socks?
I'm still unsure whether I'm an unusually low-spoon individual, or whether the author thinks nominally healthy people are doing better than they really are, or whether there's actually something wrong with me, or what's going on.
So again, what is the point? I acknowledge that some (many) people have it worse than myself. Now what?
It is also a common recommendation to meditate on ones inevitable death daily. Maybe thinking about the fate of sick people could have a similar effect.
And of course one can wonder how to improve things for sick people. But that's only useful to some extent. I think it makes mostly sense for people in the social circle of the sick person.
I don't think there is much I can do for the spoon woman, safe for donating some money to Lupus research. And I also can not spend all my waking hours donating to various health research organisations (only so many spoons to go around). So maybe I donate some money to Lupus research, but beyond that, there would not be much benefit to me thinking much more about it.
When you bond with somebody with Lupus or another severe illness or who generally has it worse than yourself you can now better understand how they live their life. Many people don't know how such things affect a person on a daily basis. You just learned something about the human condition. Isn't that something?
The fact that you complain about somebody who complains about somebody, who thinks it's a good idea to bring up that "everybody feels bad sometimes" in a comment section about a personal report regarding a severe illness, should have told me that you are probably unable to learn in this regard.
I complain about stupid people who think it's necessary to bring up that "everybody struggles some more, some less" in a comment section about a personal report regarding a severe illness.
Let's say your fictional (?) dog dies and you talk about your experience with it. Should I tell you that my wife's dad died in a motorcycle crash? Or that everybody has their struggles? That would be the epitome of human decency, wouldn't it?
I think my comment might have been severely misunderstood. By saying that everybody struggles I did not mean "Stop wining because it's worse for others". What I meant was, we all go thorough periods when our spoons are not enough, and that this is totally okay. Going trough difficulties and thinking you are the only one is harmful and feeling alone in such circumstances is unnecessary because we all find our self there sometimes.
Yeah, nobody should feel alone. The spoon theory helped the author to feel a bit less alone, because her friend who did not understand her, could understand her a little bit more with the spoon theory.
Her friend probably thought, "hey I also sometimes feel a lack of spoons". But the enormous extent the author has to deal with spoon management still surprised her friend. It surprised me too.
I don't think it's ok to have such a lack of spoons. I think some people are indeed very lonely when it comes to their kind of lack of spoons. I don't think thinking that way is harmful. Getting such a severe illness is a severe loss of life quality. You will probably grief for the rest of your life. It's nothing you can fully move on from.
At least I would never hug a person with such a background while saying "I understand you". That is impossible for me. Hugging, of course, yes, but claiming any real knowledge about how such constant lack of spoons must feel is impossible for me.
That's again the classic power games bullshit. "You could never understand me", "It's impossible for me to understand you" and so on. That's overly dramatic and self-aggrandizing. And in the case of the person who is sick, also inducing unnecessary loneliness.
It not dramatic, simply the truth. What is so dramatic that I cannot fully understand somebody? I can perfectly live with that. I cannot fully understand you and I cannot fully understand the author. The author has a huge part of their life I cannot understand. Since I have children I can for example now better understand other parents, but I will never fully understand their individual struggles.
That is just acknowledging individuality and diversity. I will still demand stuff from those I cannot understand well. For example abiding to laws etc. Individuality does not automatically imply immunity to judgement or special treatment. You seem to think that.
I'm sure if I would tell you about the death of my dog in this thread, you would complain that I bring it up in the context of somebody with a horrible chronic disease.
I just want to understand your motivation, and the motivation of the OP. I guess I have a feeling you like to lord it over other people with the help of victims of diseases. (Similar things tend to happen when somebody dies - there are always people who then order other people around on the basis of "the deceased would want us to do x").
I never once said that the spoon women doesn't have it hard, btw. That is your interpretation. I want to know why it annoys you if people are not sufficiently sad about it. I probably live at the other end of the world, so I just wonder why it is so important to you.
Btw there is also a story about Buddha who told one of his suffering disciples to find somebody who doesn't have a hard fate, and they were unable to find somebody. I guess Buddha was a real asshole, according to you (he did exactly the thing you claim is a big no no).
> I guess I have a feeling you like to lord it over other people with the help of victims of diseases. (Similar things tend to happen when somebody dies - there are always people who then order other people around on the basis of "the deceased would want us to do x").
WTF man. "TBQH I have a real dislike for the relativistic thinking that people apply to this." So lordly!
> I never once said that the spoon women doesn't have it hard, btw. That is your interpretation.
I never interpreted it that way. The author of the report probably also does not want you to feel pity for her. She just told you a story about how life is for her and she came up with a analogy to make it more understandable.
Buddha also says: “Have compassion for all beings, rich and poor alike; each has their suffering. Some suffer too much, others too little.”
"lording" was a bit strong, I just couldn't think of better words to describe it.
You clearly seem to want me to do or feel "something". In the other thread you talk about things like "the decent thing to do", "showing empathy", and so on.
My question was, why. What's it to you. As I said, I don't know the woman with the spoons, and I also don't play down her predicament.
So why do you want me to behave in a certain way? That's "lording", for lack of a better word. You want to determine how other people have to behave.
No, I don't want you to feel something. I just think if you think the way you describe it, it's not very empathic and also not very thoughtful. And I wanted to tell you that in an attempt to give you another perspective on what padolsey wrote. I can live with you not being empathic or thoughtful. I just failed to give you another in my mind morally and intellectually superior perspective. I wanted to give it to you for free :)
You seem to have a problem with me thinking that about you. When I try to explain my perspective, you seem to try to dismiss my arguments by making up ways I might not be empathic myself etc.
You constantly ask "What is the point?" Why do you think the woman wrote about her spoon theory? What is her point? Do you really think padolsey wrote the comment on relativistic thinking to play thought police?
You don't want anything from me, yet you accuse me of not being emphatic. Or you just want to help me to communicate better, but then, how about reading other people's comments without prejudice?
The correct way to show empathy to you seems to be to show pity or say "oh my god it is so bad, I could never understand it, because I have it undeservedly so much better than you", or something along those lines?
"You constantly ask "What is the point?" Why do you think the woman wrote about her spoon theory? What is her point? Do you really think padolsey wrote the comment on relativistic thinking to play thought police?"
Indeed, I asked myself the question, I think it is a valid one. I thought her description was interesting and I therefore upvoted it. But I also resented her for the "you are all so clueless and could never understand how hard it is for me" vibes. To be honest, I get some "identity politics" vibes from that, it reminds me of the "white people can never know how bad it is for black people" or "men can never know how bad it is for women" nonsense, boiling down to "I'm so special". I don't like it also because it is so self-defeating. The spoon woman seems to think everybody else has unlimited spoons, which is of course not true.
And the relativistic thinking comment - I don't know? Maybe he wants us to be aware at all times, and make everything we have our privileged access to, also accessible to people with severe illnesses? Why did he make the comment?
> You don't want anything from me, yet you accuse me of not being emphatic.
So what? Isn't some dissent normal in a discussion. Not being emphatic is not the end of the world.
> how about reading other people's comments without prejudice?
I try to.
> Indeed, I asked myself the question, I think it is a valid one. I thought her description was interesting and I therefore upvoted it. But I also resented her for the "you are all so clueless and could never understand how hard it is for me" vibes. To be honest, I get some "identity politics" vibes from that,
So I don't feel those vibes. I think it's a wrong impression and a sign of you reading it without good faith.
> it reminds me of the "white people can never know how bad it is for black people" or "men can never know how bad it is for women" nonsense, boiling down to "I'm so special". I don't like it also because it is so self-defeating.
It's not nonsense. It's the other way around too. But it's not boiling down to "I'm so special". The question is what do we do with this information, that there are experiences that differ from our own sometimes much more, sometimes much less. You seem to see a fight here that I don't see.
> The spoon woman seems to think everybody else has unlimited spoons, which is of course not true.
To her it seems to be unlimited which is very telling.
It's like complaining about people who claim they live under a fascist regime because they have to wear masks in the supermarket. It's making a point about human decency.
Maybe for some people the consequences of lockdowns are more severe than for you. Aren't you all about feeling with people's predicaments?
Also I don't agree with the (common) argument that nobody should be allowed to complain about anything, because there is always somebody who has it worse, somewhere in the world.
Like with solving "first world problems" - yes, it seems frivolous to worry about getting an even better iPhone, while people are starving somewhere else. On the other hand, those people, if they can solve their immediate problems, would perhaps also enjoy having nice iPhones. So it is not inherently bad to worry about the existence of nice iPhones.
Or put differently, it can not be the only purpose of life to help people who have it worse. I mean somebody could adopt that as their philosophy, sure. But it requires people who need help, therefore it can not be a universal philosophy. If suddenly you run out of people who need help, you have lost your purpose in life again.
> Maybe for some people the consequences of lockdowns are more severe than for you. Aren't you all about feeling with people's predicaments?
Bringing up fascism to make your struggle important is never a good idea. I can feel solidarity without being reminded of really dark aspects of humanity.
> Or put differently, it can not be the only purpose of life to help people who have it worse.
I agree.
I only talk about acknowledgement. It's not that hard. Also it's simply unethical to compare first world problems with somebody starving in a concentration camp. You can do that, but it's annoying and stupid. I think it's ok to complain about stupidity of other people.
It's OK to worry about totalitarian control, as there are always groups and politicians working towards that goal. It's actually one of the lessons one should draw from remembering dark times.
Some people may worry more than others. I have read reports from therapists that they have clients from former communist countries who struggle with the lockdowns, because it reminds them or horrific things they experienced.
There are also a lot of people who have built up enourmous hatred and murderous thoughts because of Corona. Where I live, there are writings on the wall that "Covidiots should be burned" and stuff like that. It's not that far fetched to think about totalitarian regimes murdering people in that context.
> Some people may worry more than others. I have read reports from therapists that they have clients from former communist countries who struggle with the lockdowns, because it reminds them or horrific things they experienced.
Those are probably not the people who compare themselves with Sophie Scholl on protests or something like that. They know the difference.
> It's not that far fetched to think about totalitarian regimes murdering people in that context.
Really? I think this only makes sense when you have a rosy idea about how Totalitarism looks like.
"Those are probably not the people who compare themselves with Sophie Scholl on protests or something like that. They know the difference."
Are there many of those? Here in Germany we had one case I am aware of, and while I didn't follow it closely, it seems very likely that she has some kind of mental health issue.
"Really? I think this only makes sense when you have a rosy idea about how totalitarianism looks like."
Nobody claims what we are experiencing right now feels the same as life under fascism. Just that it feels like the prelude to it.
I don't think it is far fetched at all. We've seen major changes of our way of life and people's attitude over a short amount of time, and major divide in society, driven by fear.
The hate is real - people fear for their lives and the lives of their parents, and they are ready to blame whoever comes in handy. And the hate is murderous, especially because people fear about their own lives.
I think if you enter a shop without a mask, you can well except violence from some people.
And it can get worse if people refuse to get vaccinated. Already businesses promise not to do businesses with such people anymore. How can you NOT see analogies? You could say not getting vaccinated is voluntary, being Jewish is not. Nevertheless, there are parallels. Nobody claims the exact same thing is happening.
It seems likely to me that fear for their lives was also what drove people to adopt fascism. The rosy view is to look back and think it was just stupidity or "evilness". I think people also feared for their lives. Here in Germany they had just witnessed an extremely murderous war (at a scale we can not imagine anymore), murderous insurrections, stuff like that.
Ich glaube kaum, dass Faschismus der Furcht um das eigene Leben entspringt. Faschismus wird aus Stolz, Unzufriedenheit und der Sehnsucht nach Führung und Gleichschaltung geboren. Ich bin da kein Experte, aber Faschismus ist sicher keine Frucht um das eigene Leben. Meine Urgroßeltern waren sicher zumindest zum Teil Nationalisten, Rassisten, Antisemiten und Monarchisten. Das geht sicher vielen Deutschen und vielen Europäern so. Ich glaube in so einer Atmosphäre hat Faschismus leichtes Spiel. Faschismus ist aus meiner Sicht motiviert durch eine konservative Sehnsucht nach Ordnung in einer turbulenten neuen Zeit der Republiken und demokratischen Bestrebung, die viele einfach überfordert hat.
But comparatively, they do. They aren't considering that taking a shower that day might take the energy they have for the morning.
Struggling is different: It takes some energy away, but for many, you can theoretically take away some struggle. Get a new car, have enough food and money, get over a temporary health condition. Get time to get over a divorce. There are curese for many struggles. The same things won't help someone with a chronic disease... who often have the same struggles as greater society on top of whatever illness they have.
I wonder if I have a slight disability then. I have an over active mind, no diagnosis or anything, but I need to stay away from stimulating surroundings otherwise I'm going to have a bad time. I have to pick and choose what I do because if I run out of spoons I get intense anxiety and the desire to crawl into the nearest hole.
My favorite variation of this involves Dungeons and Dragons' spell slots mechanic. (Full disclaimer, I didn't make the concept, and can't find the post that I read it from)
For every long rest, you get a limited number of spell slots - for example at level 5 you get 4 level 1 spell slots, 3 level 2 spell slots, and 2 level 3 spell slots. These are all the "major" spells you can cast before you need to long rest again.
Some things may be more straightforward, and only take a level 1 spell slot. But it's still possible to run out of those. Luckily, you're able to use a higher level spell slot to cast that same spell. Sometimes this makes the "spell" more effective (using a higher level spell slot for programming might relate to intentionally putting more focus on it), other times you're just burning the higher leveled slot.
Other actions/spells may take more focus/concentration/energy/effort to do, akin to using a higher leveled spell slot. Naturally you can't do as many of those without resting.
Still other actions/spells are trivial for you to do. You can do those as many times as you'd like, and you don't feel (significantly) affected by them. These are your cantrips - the simplest spells, that can still be very useful.
I like this variation of the theory not just for the gaming flavor, but also because it changes the concept slightly from "this takes more spoons than that" to differently sized spoons, which feels more in line with how I relate to the tasks that give me trouble.
That's a very interesting variant. Since it works for healthy people as well, you can describe what changes more directly. It also captures that not all conditions are identical. For a healthy person, getting out of bed in the morning is maybe a level 1; making dinner is a level 2; going to the bathroom is a cantrip; maybe going to work is a level 3.
Now you have a chronic medical condition. With your particular condition, getting out of bed a level 3, you have no cantrips, and you need to spend 2-3 level 2's per week going to the doctor (rather than 2-3 per year). Now, you've used up your level 3's just by getting out of bed and going to work, you need to use level 1's to go to the bathroom, and you used a level 2 on a doctor appointment (so you're out of them by dinnertime).
Someone else may have no more difficulty getting out of bed, and may not need so many doctor appointments, but randomly once a month they just don't get any slots back in the morning. So, they need to keep that extra level 3 in reserve to go to work tomorrow in case that happens.
I've certainly heard the term 'spoonies' a lot in the chronic illness community, but this is my first time seeing this article. It's interesting to see HN decided to discuss this.
I was worn down by undiagnosed celiac for years. That was finally diagnosed, but then I became mysteriously ill again for a couple years, which turned out to be type 1 diabetes (actually 1.5, LADA). People definitely don't understand what it's like living with a limiting factor like chronic pain, fatigue or organ dysfunction until they've experienced it personally or watched someone very close cope with such a thing. Besides how difficult as the physical and mental issues have been, it's also cost me many relationships, financial independence, personal development and a great deal of work opportunities.
I can easily connect with the message of the spoon holding, but I see I misunderstood the metaphor. I didn't realize spoons were like effort tokens... I thought it just meant you had to do everything all day with the inconvenience of holding a bunch of spoons.
Obviously not as serious as a chronic illness, I feel like having kids and working during quarantine is similar. After taking care of work and their needs, you don't have very many spoons left for yourself. So I like this analogy a lot, it seems helpful in being realistic with yourself in terms of your capabilities.
I can remember when I had a severe flu / fever last year (in February so probably not covid) that I only had juice to work (code) for like 30min and then had to lay down for 2h. The strange thing is, I can only remember the numbers but not the true feeling. It is kind of surreal. I should be grateful every day that I am not in that condition and have much more juice/spoons available. Another thing is, no matter how many spoons you have, there is always Parkinsons law to burn through them in an unreasonable way.
I've been using this analogy for years, but never actually read the origin story. It is a great analogy not only for explaining to people why you cannot always do what they can, but it also helps people who acquire new medical problems think through what change they need in their life.
But that doesn’t prove that this story, spoon theory, is “addiction in a nutshell.”
Edit: my point is this story doesn’t match what I know about addiction at all. The woman consciously and deliberately allocating her energy (spoons) is not the life of an addict. Addiction is generally a life lived unconsciously.
If I was going to put it into spoon terms, it’s that you start your day with 30 spoons. Everything you want to get done that day requires a total of 20. But, you still end up short because you spent most of your spoons on drinking/blow/porn/games and in your moments of lucidity you just think “what the fuck”.
> "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point."
Not so sure about this... everyone has limited resources, time and energy being the biggest, finances usually a big one as well. How accutely you are aware of them perhaps depends on both your situation (such as having serious health issues that need attention) and what exactly you are trying to do with them.
Not taking your resources for granted is always helpful though. (Although someone else not sharing a resource doesn't necessarily make it worth more to me; e.g. I'm not happier to be able to walk specifically because someone else can't.)
It is five stories, four of people with Chronic Pain, two that ended in suicides. My late wife Karen being one of them. The other story is of a doctor that the Medical Establishment destroyed for helping those with Chronic Pain. It is *NOT* a warm and fuzzy movie to watch.
For full disclosure I am a member of the cast, have been intimately involved in Pain Warriors production for several years. I receive no remuneration of any type. It is my mission to raise awareness of those suffering from Chronic Pain and Cerebrospinal Fluid (CSF) Leaks.
Pain Warriors can be found on Amazon Prime, iTunes, Google Play, Viemo (for international) and YouTube (sometimes, they are weird). The distributor set the pricing for the platforms and regions so check around for your best place to watch it.
We could really use your help. Our goal is to get Pain Warriors on Nexflix to reach a wider audience. For that to happen we need to have over a 100 positive reviews on The Internet Movie Database (the 100+ positive reviews on the other platforms don't count to Netflix).
Our segment in Pain Warriors is based on what has become known as "Karen's Journal". One reviewer wrote:
"Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day."
Thank You for your help and bring up this subject here.