The Spoon Theory (2003)
butyoudontlooksick.com
butyoudontlooksick.com
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.
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.
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.
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.
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.
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.
https://sciencebasedmedicine.org/what-is-integrative-oncolog...
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.
*The "In too much pain to eat" perk nullifies this status effect
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.
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.
https://en.wikipedia.org/wiki/Hell%27s_Angels:_The_Strange_a...
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.
- 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.
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.
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.
So it seems it is the second case.
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 would argue that they are actually high benefit, or at least appear as such to the person.
I don't think many people would willingly choose to engage in high effort/low benefit activities.
> Low effort, small-scale projects with immediate benefit/utility are much less taxing on health and don't require constant maintenance
They are also much less fulfilling and interesting to many people.
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 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.
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.
It's high cost of living that urban singles areas have and rural multi-generational homes don't.
> people who sell via Shopify or Amazon
If you're selling by mail countrywide, you're not a "local" business any more even if you remain a small business.
How this "spoons" analogy a good argument against that?
If automation didn't involve pushing people into deep poverty, it wouldn't have as much opposition.
Automatic sending wealth to capital instead of labor is another issue, perhaps better viewed as capital ownership being centralized as the actual problem.
> 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 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.
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 understood, but I take it that it’s from this.
The article doesn’t say when it was published but it looks quite old.
Interesting that it’s surfaced here, now.
<meta property="article:published_time" content="2013-04-25T11:24:09-04:00" />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).
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.
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.
I think the comments to this post testifies that no one has unlimited spoons. Most people struggle. Some more, some less.
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.
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.
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.
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.
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.
I agree.
> 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.
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.
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.
If this happens to you rarely, it was just a bad day.
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.
You don't have to do something at all.
And as I also said, and you confirmed, it makes sense if you have somebody in your circles who has such a condition.
Apart from that - my question was, why do you complain, or get annoyed?
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 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.”
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.
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?
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?
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.
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 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.
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.
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 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.
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.
The metaphor is a bit controversial nowadays, some people identify themselves as "spoonies". See this discussion.
https://old.reddit.com/r/illnessfakers/comments/aoz87i/who_e...
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”.
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.)