Empathy and its Limits
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- Опубліковано 27 лют 2023
- In which John thinks about the limits of empathy, how we conceive of suffering, and how little he knows about being a bird. This video uses a format called The Format.
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“I’m not disabled, you are just temporarily abled.”
- from a wheelchair’d guest speaker at my college architecture 101 course. Always stuck with me.
I'm dealing with a (hopefully) temporary sort of disability and I'm finally learning this lesson
I’ve also seen comments that say “don’t call me temporarily abled or differently abled or special needs” or any other euphemism that you feel will make me feel better about my condition. Being disabled is not a curse. Having a disability is what it is yet it doesn’t dictate who I am or what I choose to do.
Wow, great.
@@terrycrews1760 As a paraplegic who needs a wheelchair... Yes. I get so tired of the "differently abled" feel good stuff that people say to make themselves feel better.
Guess what, all that feel good talk doesn't change the fact that I can't stand up or control some of my bodily functions, but I'm super glad it makes other people feel less uncomfortable when imagining what my reality is like /s
Exactly this. Sometimes people are born with it. Sometimes it's acquired. If you live long enough, chances are you will become disabled in some manner, whether by an accident, illness, or the consequences of aging. What is death, if not the ultimate disabling event?
It's incredibly frustrating that we treat disabled folks so poorly. Same goes for our elders in care homes. Do we not have the foresight to recognize that we'll suffer as they suffer now should we end up in care homes?
There's something very soothing about The Format
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Gotta take it down a notch in 2023. -John
Yes and it’s actually taking it up a notch
I just like that it's "The Format". There's no attempt to describe it or categorize it.
It my favorite format. I get excited when I see a new one.
John’s deep pondering in the style of The Format is quickly becoming my absolute favourite thing like, ever.
"Illness is not some moral narrative..." so true. And neither is poverty.
Thank you for this wonderful video. It is... here because it is here.
Neither is poverty ... ***MARXISTS INTENSIFY***
"Illness is not a moral narrative"
It really helps to be reminded of that, as a disabled person. Thanks john
This!!!! John’s take on this in TFIOS and in vlogbrothers videos has been hugely important to my fight with my own internalized ableism
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And yet I'm sure you don't need to be reminded; if you're like me, anyway, you kind of absorb what the surrounding culture's saying about you, and believe it a little on some level, and deep down don't believe it at all. Sadly, it takes work to reach that deep down inside even your (well, my) own self. I don't know you, of course, but I suspect you totally rock.
I really needed to hear this today.
Now, say it louder for the people in the back and front of the line, please.
"There's nothing invalid about living with illness except that our social order makes it so" - John once again dropping truths about the disabled/chronically ill experience! ✨
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I'm truly not convinced a full NHS would ever be sellable to the USA, never mind practical. Alternatives for the Yanks to consider from my amateur snoop into it all, is either the strangely mixed Singapore model, which is admittedly fuelled by astronomical pay and living costs in Singapore. Another is the Japanese Universal Health Insurance where people only pay for 1/3rd of their healthcare costs. When it comes to speaking to your opposition, it very often helps if you can try speak it in their language. So instead of saying "healthcare is a human right" which they see as tantrums by people attempting manipulation;
You make *economic* arguments and debate in ways which leave them pincered between conceding the point or looking like the illogical ones. Eg:
More nationalised healthcare even if not fully, is not a punitive tax on the rich. It's an adjustment of the economy which frees up consumer liquidity and increases meritocracy by making it much easier to escape Poverty Traps, and whilst for a brief time the wealthiest would notice a small dip in their porfolios;
long term there'd be no meaningful change, as increased spending by the massive working class demographic will only result in most of them getting equivalent profits back whilst increasing free market competition nationwide and increasing chances of currency staying in local economies.
Don't you like competition, GOP? 😛
@@TheHorseshoePartyUK Maybe the comment you're responding to was taken down - I don't see it. But the reason a NHS not working in the U.S. is entrenched and extremely profitable health industries that are deeply committed to preventing it - medical insurance, medical device, pharmaceutical, and healthcare administration. They've found the golden cow - a dependent, captive and increasingly sick body of vulnerable consumers. This is morally bankrupt, of course, but they have an advantage they don't want to risk parting with. At the very least, switching to a less profitable (read, less predatory) model would be expensive in itself.
So what's needed is tapping into a more influential body - voters. That's where arguments for it might find purchase.
The social model, that it's not individual flaws that make someone disabled, but society not being willing to accommodate them. I found great help in getting accommodations in university, but I had to pay to get them because the free diagnosis program had a 4 year wait list. I'm on the wait list for another chronic condition to get tested (likely genetic, but not sure), and there is no private version of this one. It's been hard to exist in this middle ground where I have things I need to do, physio, special foods, etc to meet my needs, and society says that's too far. Thankfully things have improved a bit here in Canada in terms of getting in more options for medications and supplements that help, but it's encouraging to hear messages like that while I'm waiting to find out what I have, and if it qualifies me for disability or not.
I was reflecting on how much I am grateful for the words of John Green when it occurred to me that John is no longer a Chaplain at a hospital, but it's kind of like he expanded from a hospital to the world and he's still standing there helping us all through it. Thank you John.
That’s so true.
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My mom, after I told her about my most recent issues with insomnia: "Have you tried just going to bed anyway?" I wish so badly that more people would just listen and believe. Thanks John.
I’m sorry you’re having problems sleeping.
This really hits home! I’ve been having a time with my ADHD lately, and my mother responded: “sometimes we just have to get things done, even if we don’t want to.” That is neither the issue nor the solution.
"No, I haven't tried just visualizing this unending stone wall in front of me out of existence." Sleep trouble is extra fraught because of how modern Anglo-Western society moralizing about keeping the same hours as everyone else. I'm convinced that arises from High Society wanting to be Seen and working society being judged lazy if not seen working despite literally physically falling apart. (Based on personal experience in pet sure farmers are innocent in originating much Time Moralism.)
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@@MissPokey411 THIS. “just try harder! just get it done! you’ll feel better after you finish it!” those have plagued me and it’s so frustrating when they just don’t understand that executive dysfunction is not a choice. i logically KNOW that it'll be a relief after i finish it, but the problem is that i simply _can't._
I love this format. I also forgot there was a whole house that John occupies and not just that little space in front of the bookshelf. He and Sarah have such good taste.
Mostly Sarah. :) -John
Oh don't they just!! A beautiful home in what looks to be a beautiful bit of the world. But then they are beautiful people, so it's well deserved!
I mean, Sarah is an artist, or whatever lol. She ought to have a good sense for decor.
I am really envious of their house. It just looks so nice.
It's somehow not at all what I imagined their house would look like and simultaneously exactly how their house should look lol
I don't know how you can claim to have insufficient empathy when you knew at 02:31 exactly how long it would take for me to give up and assume you just weren't in that shot at all.
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“I was very rarely alone, except in my fear and pain where I was always alone”… this. this is what I’ve been trying to explain to people about mental illness, but have never found the words. this whole video hit hard. but that one sentence describes my experiences in psychiatric hospitals all too well.
and I very much agree that listening is one of the most important things we can do for each other. I think society would be a whole lot better if we just did a bit more listening.
thank you john :)
I'm disabled and was recently kicked out of a home owned by people who promised they were my friends and would keep a place for me, and it made me realize that empathy is often limited by time. Like, having to deal with me could be exhausting at times and as such I isolated myself in the hopes of avoiding the erosion of their empathy, that process where over time you fixate on all the little annoyances and problems with a person until that is what they are, a burden, an annoyance. It can happen in any relationship of any kind, not just one between the disabled and abled. Empathy is work, and for a lot of people so worn down by the work already demanded of them by a callous society, it is too much work.
You sure have empathy!😉🌹
Sorry
beautifully written. i hope that you find shelter and stability in your life.
As a professor of disability history thank you for the conversation about disability and illness. We will all become disabled if we live long enough. The best case senario is that you love your disabled life as I do mine.
Wait, that 's a thing? Professor of disability history? I want to know more!
"We will all become disabled if we live long enough" is equal parts terrifying and enlightening.
Also, I am also fascinated by the idea of a professor of disability and would love to learn more about that.
@@grantbaugh2773 as someone who has lived long enough to be disabled for most of my life: there is life after disability. It's not the best, but it doesn't have to be the end of everything
Absolutely! We should strive to allow everyone to have quality of life, no matter any physical impediments they may have.
After all, there's only one other option to disabilities in senior age: dying young.
@@christafranken9170 that makes sense, and from an intelligent standpoint I wholeheartedly agree. But there's a sort of primal fear I feel when I think about becoming disabled. And, of course, that's really just more of an argument for removing the stigmatization surrounding disability. How much of our fear of becoming disabled stems from how society views disabilities versus the actual impact of said disabilities?
john so clearly lives in a house with an art curator and is yet so frumpled in his dress and i love that leaving the visual contrast be is a key schtick of The Format (at least in my viewing experience of the format, like it speaks a lot to human frailty and my own disatisfaction with how i complete my own ambitions)
This is so true!
Art on walls: Amazing
Aesthetic: Very
Style of human being walking around the house: Frumpled.
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Frumpled is such a great word
I've been focusing on the chairs...
Especially the eames chair.
That's what makes it such a perfect aesthetic. The best thing about the house is that it's somewhere where someone just lives.
"I was very rarely alone, except in my fear and my pain, where i was always alone"- this applies to grief as well. There can be so much grief in disability where I have slowly lost friendships, jobs, opportunities, because I could not function as " i was supposed to" or "normal". Facing other's pain and fear can remind us of our own and I've come to accept that not everyone had the bandwidth to see my disability and see past it to my humanity.
Being very high risk and trying to still avoid our current plague, this really resonated with how it feels in 2023. While the world moves on, people like me are ignored and also invalidated constantly. That we're insane and overly anxious, that we want attention, that we're virtue signaling. I just want to be as healthy as I possibly can and no one is listening.
I have to, because we're in the same boat! 🌹
YES. I can't even add to your comment other than you're not alone.
That last sentence made me tear up a little. My girlfriend has severe chronic pain and a lot of health conditions, and it's always a fight for her just to get prescribed the medication she needs. She gets ignored and denied and gaslighted by the people who are supposed to be there for her. It's heartbreaking and infuriating. I'm so sorry you have to go through something similar. You are completely valid in your feelings. I wish you the best.
@@somepunkinthecomments471 Well the best to both of you. Just remember you're legit and deserve the best, always. 💐
John and the format get along so well
Hank too!
The Format
Came here to say this
I’ve had a hard time accepting that I am disabled, and now I have a hard time getting other people to accept it. This video hit particularly close to home today.
I am a pediatrician. So often when parents bring their sick kids to me at my office, I am not able to cure or effectively treat them--there are few options for treatment for most viral illnesses, for example. Often I can only offer supportive care and validation for the suffering they are going through. Thanks for this video as a reminder of how important it is for me to offer my limited understand when Im caring for patients
Thanks for this. So often, doctors are thought of as gods and, as someone else in this thread who is sick and hasn't found help or even answers, it's nice to hear it spoken that the medical profession doen't know how to solve everything. Healthy people often treat unhealthy people as though they just haven't had the sense to listen to a doctor because, if they had, they'd be fine
As a chronically ill disabled person, thank you for this. Being disabled and therefore low income isn’t a moral failure, but I’m damn sure treated as such.
I hear you! I'm finally emerging from feeling a need to apologize for "not being up to it. " Prize the insight you gain and apologize to no one. 🌹
Yep. It is so hard to reckon worth when you treated like your income and ability defines you
I hate that it's always the first question to establish someone's worth and identity "what do you do for a living".
I hope you feel validated and supported. I wish I could help you feel that more, best of luck
The Format is such a refreshing thing to watch. It's genuine artistry
Right it's the best thing about "taking it down a notch" it's sublime in it's artistry the perfection in it's execution, and he makes look all so effortless.
As someone with a chronic illness who was abandoned by everyone, thank you for making me feel seen and valid. It's absolutely true that it feels like you've been left behind by... the world. It's very isolating and dehumanizing. Empathy towards people like me is exceedingly rare, and I can't even begin to express how much it's appreciated.
I'm pretty much at the point where I've completely given up and have just totally withdrawn from society. I'm not sure I'll ever be able to trust anyone again, especially after how my ex-best friend treated me before ditching me (things he said and did will probably haunt me for the rest of my life). It is nice to be reminded that there are rare people out there who get it, and I've saved this video to rewatch occasionally as a reminder that empathy is still a thing and that it's not my fault I'm sick and that I don't deserve to be treated like I have no value and nothing to offer.
that sounds horrible, i'm very sorry! i hope that there will eventually come people in your life again, who will see your worth and who you will be able to trust... but until then i hope you find a way of appreciating life despite the feeling if isolation
"In short, we validate each other." Pure and to the point. We can listen, we can imagine, we can bear witness, and we can sit together. Thank you John.
This makes me think that from our vantage point, birds are always in The Format. They never stay put.
"Do humans get frustrated being stuck to the ground all the time? I don't know what it's like to be a human. I only know what it is to be a bird."
The bird version of John Green is trying out a new format where he's just in one tree for four minutes.
Good work everyone
John! What an apt video for Rare Disease Day! We need to listen to chronically ill and disabled people more!
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as a teenager who often is bedbound and is almost completely housebound due to chronic illness, there is certainly still a level of invisibility that i live with, but i am so grateful to be able to connect with others through the internet, especially through nerdfighteria!
Hey, it's been 3 months, I hope you're doing okay or at least holding on. I have a chronic illness that, granted, isn't as bad, but I know the struggle of feeling unseen. I'm here if you want to talk
@@yourfriendlyneighborhoodne6554 oh my gosh thank you so much for your kind reply! i'm doing pretty well emotionally right now since the stresses of school aren't impacting me but i really appreciate you reaching out
@@doc8186 Of course! I hope you continue to do well in the future :)
It's always been hard living with depression and ADHD and other such mental illnesses and disorders because society is very much built around competition. But competition is one of those things that, while useful on some level, inherently leaves people out, or causes excessive stress in others. It's like having to sprint constantly just to keep up. After awhile you just can't anymore.
That is a great description!!
@@piotrwaniek it's a fucking terrible system
This is so weird. I just got back from a healthcare appointment where my doc and i are making a good faith attempt at exploring my ongoing health issues and disability. Where as before I recienved no validation or indication that my struggles were seen as believed or importent.
It's a ling story, but I found the video topical and I'm having a hopeful day. Thanks for making it more hopeful John! Yay for empathy.
I'm really glad you feel like you're finally being heard and getting some validation. -John
Bless your heart! I am so glad you are finally getting the care you deserve, thank you for sharing your hopeful day with us, I fervently hope that you will see positive change in your healthcare journey
I'm disabled, including with chronic autoimmune illness and have also been finding that my healthcare providers are only recently now taking me seriously and compassionately. Wonder if something's going on. Happy to hear things seem to be improving for you on that end, too. :)
The doctors who take the time to empathize with people's issues, those are some of the most important people.
Me too! Finally have some clarity on my asthma after so long. Specialists are much more helpful than general care
I enjoy the metaphorical resonance of the camera being blurry at 3:16 when John talks about the fear and pain of illness being inherently isolating, then coming into focus when he says there is something he can do: listen and believe.
As somebody who lives with multiple disabilities and a chronic illness that almost killed me five years ago, I found this very… healing. Thank you.
Well, this just gave me the courage to make a doctor’s appointment for a pain that keeps getting worse. Thank you.
Best wishes to you - if they don’t listen, keep looking for someone who will
Goddamn I love The Format. XD It just seems to fit the vlogbrothers/Nerdfighteria mood so well, like, here, let us present to you this earnest/thoughtful/thought-provoking content in a super silly/dorky/tongue-in-cheek way... that is somehow also meditative and soothing??
I love how we're getting TB worked into every video, it's practically a squarespace segue at this point, John - you really need to write the follow-up novel, "The fault in our lungs"
Birds as well as mammals and even many lizards all have a hypothalamus, and among other things it is responsible for basic "in the moment" desires and emotions and needs, so: hunger, hot, cold, tired, sex, as well as the need for PLAY and CARE/KINSHIP. So, that means that most animals are actually a lot more like us "in the present". Our big brains are necessary for evaluating the past and the making goals for the future, so animals aren't that great at past and future, but "the present"? We're all mostly the same that way - we like to play, we like our family, we like to be cozy, we like a good meal, we like to feel safe.
The crushing weight of trying to hold space for empathy for every single living creature is actually a theme in a matter of sorts of figures like Christ. The notion of "taking on the sins of the world" has many meanings, but one of them is, "allowing all of that pain for all of the suffering past, present, and future in and sitting with it for a while". Unlimited empathy and compassion is exhausting, and is part of why in The Green Mile John Coffey (who's initials are JC on purpose) says how he's tired of feeling all the pain and suffering.
We'll never have the mental RAM available to hold universal empathy like that, but it's the attempt, the journey, that is important to at least try.
Cheers
oh my word the Fault in our Lungs!! yes!!
Rule of thumb: if John Green is keeps going back to a particular subject, he's probably writing about it. I don't know if tuberculosis will be central to the story (like cancer in TFiOS) or if it will be tangential (like last words in Looking for Alaska or tuataras and spirals in TATWD), but I strongly suspect it will feature in some way or other.
This is one of the most beautiful thoughts I've ever heard. Thank you for sharing that.❤️
2023 is the year where John is taking it down a notch, except for his tuberculosis fixation, which he is taking up 100 notches.
The fault in our lungs really made me laugh so hard. Especially because it would apply to the characters in the novel also but in a different way 😂
Thank you for making this video, for anyone who is unsure, here are some examples of how a moral narrative is applied to disability: mentioning how successful someone was because becoming disabled so that we accept they didn't deserve to become so; 'have you tried xyz?' implies we are choosing to be ill, and not trying hard enough to get better; saying someone 'overcame' their disability when they achieved something as this makes those of us who can't achieve the same thing seem as though, again, we aren't trying hard enough to do these things; and in film/literature the trope of the disabled villain or saint which shows disabled people (usually played by abled people in visual mediums) not as real people but extremes of existence. In reality we are not villains or saints, but people who live and love and hate just like every other person on the planet, we are individuals just like you.
The pathos. The poetry. The calm baritonic subtlety.
But above all of it?
The commitment to the bit.
I was taught in one of my nonfiction writing classes in college that we often categorize illness, especially chronic or terminal illness, as a "fight" because of our limited capacity for empathy and understanding of illness. If we put the ability to overcome an illness into the hands of the person "battling," it removes our need to understand that the ill don't always feel like "fighters." It places the will to survive and sometimes even the blame for being sick onto the person experiencing the illness. We throw this narrative at them that, when you look at it closely, puts illness in a category that people can "win" or "lose." I really try to avoid this kind of language around illness.
Hank said this a few years ago that sums this up more concisely: "A person's ability to survive a disease does not come down to how hard they fight. Dying is not a failure of will."
Thanks for the thoughtful video, John. Long live The Format!!
Not a one of them sees the value in endurance, and the strength and courage it takes to endure daily. Phooey on that! You got this. 🌹
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I do really love this perspective, but to add a slanted counterpoint: as someone with a chronic illness, I do feel like I'm fighting, but it's not a single fight. It's a series of never ending battles, to do one thing after another. And sometimes I lose. I think the key to the fighting analogy is to understand that some fights are unwinnable. And the lesson to be learned is that chronically ill people shouldn't be left to fight to live on our own. There are so many fights that could be completely eliminated by a simple act of kindness by someone else. And there are some, like not dying, that can never be won at all.
This isnt where i thought this was going... but I have a debilitating chronic illness and I appreciate these words of empathy
I’m disabled and mostly bed-bound, always housebound, and I totally relate to those prior “invalids”. The world does ignore us and carry on as if it could never happen them. Happened to me at 25 - young and healthy with no prior health issues. Mild strep throat that was promptly and quickly treated. The sore throat cleared up quickly, but the the full-body-exhaustion, lightheadedness, and brain fog never left. 14 years now, no end in sight. To everyone like me, of which there are 100s of thounds in the US alone, “long covid” was not surprising. In fact a ton of us were saying “watch, now that a novel virus is going to run through the population like wildfire there are going to be so many more people like us that they will finally HAVE to notice and put money into treatments and not just blame us, call us lazy, depressed, etc. because they don’t have any answers”. Sadly, but predictably, sure enough… because it can happen with ANY infection- bacterial or viral. The fact is, what doesn’t kill you rarely makes you stronger, often makes you weaker.
The UA-camr "Physics Girl" has a bad case of long COVID and a lot of her followership hadn't heard of that (somehow??), so there might be awareness stemming from that a bit.
@@RedHair651 it is utterly beyond me that three years and Covid there are people who have no clue what long Cove it is. Even more disturbing is that doctors didn’t see this coming. I SW THIS COMING. The vast majority of the POTS and chronic illnesses Community saw this coming because long Covid is “Long Covid”. It’s just the convenient name that’s been given because COVID-19 was an entirely new in humans infection which went through the human population like a wildfire all at once instead of like a seasonal flu or cold resulting in nonstop infection and therefore nonstop long-term disabling illness even after the infection had technically cleared.
What Long Covid actually is is a long-term, *Post Infection Chronic Illness* that is poorly understood as must sufferers test negative for any infection yet suffer symptoms very similar to the original infection plus several new ones such as crippling fatigue, brain fog that makes the most simple daily tasks almost impossible having to completely relearn your limits which is beyond devastating because those limits, if you’re lucky, all strong together manage to give you maybe two hours a day of partially functioning life. Postural orthostatic tachycardia syndrome, otherwise known as POTS, is another very common side effect of post infection illness. According to one of the lead researchers at Johns Hopkins POTS, just like post infection illness, exist on the spectrum from mildly debilitating to incredibly disabling in which he compares it to the quality of life of a patient in chronic heart failure. And I can attest to that, I have almost no quality of life. My hope is that with so many new cases there will be a lot more research and hope for the future and that those who acquired this year Covid won’t have to spend the next 14 years in the way I have. I couldn’t of made it this far without my husband and that is without a doubt. And while being sick and not really understanding why am never knowing if I’m doing the right thing or doing enough is its own kind of torture please don’t forget the caregivers in these situations. The only thing that has kept me from taking my own life all the shares is the times where I’ve got to see my husband thrive and do things that matter to him and bring him joy because otherwise I would just feel like I am ruining his life, that my bad luck is taking the man I love more than anything in this world down with me and wasting his life to be my caregiver before we ever even had a chance to just be a married couple. Caregiver burnout is so real and be there for your friends who are sick but also be there even more for your friends Who overnight have had to become caregivers and advocates and insurance agents and researchers and secretaries and nurses and all the things that come with taking care of someone who is chronically and endlessly ill. Because as far as I can tell we can live like this for decades it’s not a life, it’s barely living, but it’s what we have and it’s only sad when we lose everyone because they move on because they feel like they can’t talk to us about anything happy because it will make us sad. It doesn’t make us sad, it makes us happy for you just like we would be if we were healthy. The only thing that makes us sad is you treating us differently. Maybe hanging out will it differently, maybe it’ll look more like hanging out at our house instead of out to lunch or dinner but by the same people we were and we appreciate your friendship more than ever so please don’t abandon your sick friends and especially not the people who are taking care of them Because if they wouldn’t need you more people having to live through the pain and the illness it’s the people having to watch the person I love living through the pain and the illness. I promise we are not just walking talking misery we still have interest and one of those interest is you and your life and Cary is not a finite resource, we care about you and we just want you to keep caring about us and being your friends just like you were before.
And that while we understand very little about This illness,we do know what happens if it happens and it can happen from literally any interaction where you can catch from a common cold to strep throat to Covid to the flu etc. which means it can happen to anyone, including you, tomorrow. And some people to recover, though they seem to be the ones with milder cases and and still others after several years will go into remission for sometime, even fooling us into thinking we are healthy, only for that remission to end. It’s a terrible disease because it takes so much from you while leaving you looking perfectly young and healthy and normal on the outside and so many people believe you and they will call you lazy and tell you it’s in your head and tell you it’s all anxiety but we know what anxiety feels like in don’t let these people second-guess you because they just make an already painfully impossible situation even harder and they do so I will fear for themselves and out of a desire to believe that it can’t happen to them, it’s their coping mechanism and there’s no talking them out of it so don’t even waste your time bringing you down is what helps them differentiate themselves from you and convince them selves that “it could never happen to them“. It’s just simply not true but there’s no point in arguing the leaves or get it or they won’t. no, if they choose to be rude to you I personally attacked you over it for things such as using a wheelchair to gain some mobility and independence back into her life then, well, I consider that open season. Wife don’t even have a lousy cads that you don’t have to put up with the cards that perfect strangers feel entitled to hand you as well. And if they just insist that you’re faking and it’s all a big help whatever other conspiracy nonsense they choose to believe that it’s pretty simple just cough in their direction and their true colors or shown at instant. They may want to say it’s a hoax but a little cough shows that they don’t really believe that.
Disability is full of loneliness. There is nothing more lonely than being well and having friends you love, and then becoming too sick for them. And watching them move on without you. As if you’re gone. When you’re not gone, you just can’t be upright for very long, and you can’t do steps, and you sometimes need a wheelchair- and it will be this way forever, there is no cure. And that doesn’t sound very fun to them.
So in a time of upheaval and change in your life when you really just need a friend to hug you and tell you it’s going to be ok, you lose them. Because they don’t know how to interact with disabled people. And now you are one.
I love The Format, and I love the conversation about empathy, illness, and disability. It feels especially poignant as today is rare disease day. We may feel alone in our pain and suffering, but knowing there is a community of us out there and that while we feel alone, we don't have to /be/ alone, be it through videos, books, music, etc... that's magical. Thanks for this video, John.
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I cannot tell you how much joy The Format brings me. The 2:27 game of where's John was peak.
I've seen many people comment that the distance between camera with the consistent volume is really striking or jarring for them in The Format. That had not been my experience until this moment. This moment, I was physically startled by the dissonance between distance and volume. I think because of the trees in between? It was weird and cool
This format is almost like a postmodern version of a sermon. I like it.
I think of it as a sibling of "Thoughts From PLaces" --
but more fun than monologue. (Also, much more like early Vlogbrothers videos.♪)
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Since John went to divinity school, that’s quite apt.
thanks had a bunch of things today bringing up how horrible i feel being chronically ill and how useless i feel and i was so proud of getting out of the house and facing the real world and felt like it was rewarded w nothing but backlash and feeling like it wasnt enough and main point i just really needed to hear that im okay how i am and remember im trying so so hard i love your existence so much thanks
You are incredibly empathetic on the global scale. You and your brother created a method to decrease world suffering with Nerdfighteria and by making those of us that watch you aware of the issues facing others like your on-going support of the maternal hospital and everywhere else you reach during the P4A. Your empathy is big picture, and that's amazing.
Low level background anxiety is exactly the term I needed to describe my every waking minute. Thanks John
As someone who was bed/housebound for several years, this hits hard. I felt incredibly forgotten. Friends I'd known for years just stopped contacting me because I couldn't go do things with them. Events were completely inaccessible to me. The pandemic actually made more of the world accessible to me to the point where it actually helped improve my recovery. But I'm seeing a lot of that going away now. I continue to try to create places where people can connect digitally at the very least but it's hard to see that the only people who seem to care about housebound folks are other housebound folks. Personally, I think moralizing illness is what people do to mentally escape the fact that we are all of the nature to get ill. If everyone viscerally understood they too will belong to us someday, it'd be much harder to ignore us.
It seems to be in step with our kind of bizarre denial of death. The old, "if I don't think about it, it won't get me". And it is a very old injunction not to say that word, its "scariness" will come get you if you do.
The simplest way for most well people to deal with death is to sort of just ignore it. It doesn’t make the way the housebound are treated right.
I 100% could have written this. I actually pointed out to my very energetic former roommate that the depression she fell under from being isolated is what I'd felt for years. She responded to this by asking me to move out a month later. 😑
Yes, yes, yes. I'm speaking from a lot of personal experience. My first husband was very ill and eventually he died from complications of an autoimmune disease (part of the complications were from the pharmaceuticals). I went from well spouse, to young widow and now years later I have been diagnosed with Multiple Sclerosis. I've lost the use of my dominant hand. People act like it's catching ("it's" being chronic illness or death), but the reality is that they do not want to be reminded that they are one car accident, doctor's appointment or phone call away from illness and/or death for themselves or a loved one. We do not raise people in our society to deal with either in a healthy or respectful manner.
Just like people want the details of every grizzly murder, so they can judge how they are different from the victim(s) and sooth themselves into believing it could never happen to them.
You, John Green, saying you feel like YOUR empathy is too limited, made me smile.
This is beautiful and much needed perspective.
Was just finally listened to and diagnosed with some chronic illnesses this week. Thank you for the validation, it’s much needed.
*looks at John in a ravine*
Sir that is far longer than 30 feet away.
I used ... MOVIE MAGIC. :) -John
@@vlogbrothers +++
I like that the format gives you the creative freedom to do things like the weather postcast and to talk about the significance of filming an old sycamore tree. It gives me a lot to think about.
I, like so many others in the comments, am sick/disabled/chronically ill/invalided by COVID and by other things before it. I feel forgotten in a "post COVID world" where the cases are spiking and I, am so many others, are still sick.
This video made me feel less alone.
The Format ™️ and the extremely long mic cable are great additions to the vlogbrothers' tonal repertoire
++
"Illness is not some moral narrative." This line stood out to me a lot and is definitely one I need to do some processing with.
Health as an indicator of morals is deeply ingrained in our society and it's dangerous. It causes people to hide pain and avoid seeking help.
"Am I in frame? Oh that's me!" *immediately cuts to a new camera angle*
I resonated with a lot of this video, but I also resonated with that jump cut an awful lot.
“is it me or a tree” thats empathy right there
I have a disability and strangely, this video makes me feel listened to-despite the distance me and you, and how throughout the duration of this video, you were technically the one talking and I was the one listening. It is easy for me to feel alone, but there is a togetherness you've helped me feel here that I'm struggling to define. Perhaps part of it is the shared experience of wishing you could better understand others. Just because I have a disability that others can't easily understand doesn't magically solve my ability to understand others, even others with similar challenges.
We all have our own challenges, but maybe the knowledge that there are still people who would listen, and wish to understand the best they can-Somehow I feel that can be enough for now.
What a strange way to find comfort, in our common weakness. Is that empathy? One we can all share?
Thanks John. This kind of thought, it leaves an impact. Through all the work that you do, you're still inspiring people to change the world in the ways they can. Thanks for making the world a little bit better for all of us.
Yesterday I had a conversation with a good friend and was able to see her, be with her and validate her experience with chronic illness. I guess that's why we have been friends for 13 years now.
As a person with an invisible disability, thank you. Not much has changed. Especially in our highly capitalistic society, a person who cannot contribute in the expected financial way, is treated as they have no value. We still contribute to society, just in different ways.
"It's raining. Which may or may not be pleasant for birds. I-I don't know..." is my favorite weather report ever.
Hi John it’s Tuesday, not sure if you’ll ever see this comment, but perhaps it will reach someone that needs it. I’m a high school teacher in a district in Florida that is currently trying to ban over 150 titles from our shelves. I happened to be tasked with appearing on a committee that was reviewing your first book, Looking for Alaska.
In our discussions, the members of the committee talked about the great messages about hope and dealing with suffering in life that are present in your book. We all voted unanimously to keep in our libraries.
Just wanted to let you know that your work is so important to our youth and that there are still many out there that are fighting to keep valuable books like yours in the hands of young readers that need, as you once called them, “candles in the way-down darkness.”
Thanks for what you guys do!
This focus on people who are marginalized because of an illness they have reminds me of the fact that I just learned today that 134 countries still criminalise and/or prosecute exposure to HIV and/or infection with it. I think it's so sad that we still refuse to see ill people as fully human (as they are)
The more times you use The Format, the more I enjoy it.
THE FORMAT, my beloved
"I feel like my empathy is too limited," -Man known for his empathy
I loved Being Mortal by Atul Gawande for this reason. He talks about how if we're lucky to live long enough, we all become disabled eventually, but when you're able-bodied it's so easy to dehumanize the experiences of people whose bodies are fighting a different fight than ours might be. When I was 24 I hit my head on concrete and went from totally healthy w to being unable to read or write at all, for months, and it was a very odd wake up call about how so often, sickness or disability is not a choice we make or an event we get to prepare for; it's just something that happens to us, some sooner than others.
That 30 foot cable was a fantastic purchase!
Loving the commitment to The Format. Very Anthropocene reviewed meets thoughts from places meets classic vlogbrothers parts video.
Look at John, being the extraordinary empath he always is and sharing this important lesson about valid lives of chronically ill people on rare disease day in such a beautiful way! I can’t tell you how much I appreciate you!
I have a long list of rare illnesses, genetic, autoimmune, spontaneously developed and even my cause of becoming a paraplegic is rare. It sometimes feels like being a penguin in Madagascar. But you know what? While there are horrible situations, constant pain and fighting, it’s awesome and you learn so much about yourself. I love life every day despite all the struggles and know how resilient I am. My family is my safe haven and my kids learn a lot by having a penguin as a mom, being empathetic for example. Much love to every penguin, zebra and raven!
Whenever John says "I've been thinking recently".. I know Im in for a good time
"I can listen to other people when they tell me of their pain, and I can believe them" I've had CFS/ME for over 20 years now, when I first took ill there was a lot of doubt that the condition was "real", not just amongst the general populous, but also within the medical community. It was a challenge to find a GP that would actually listen to you, and believe you. Whilst a lot of things have moved forward over the intervening decades, I still hear from people who are not being believed by medical practitioners, by their families, and with the huge numbers of people now facing a life with long Covid, this problems seems set to get worse. Chronic illness is horribly isolating, even for people who are not physically bed bound, if you know someone with any kind of chronic condition, please listen, please believe them, when they tell you of their pain, they are only telling you a tiny portion of their reality, your empathy is so powerful, please share it as widely as you can. And if anyone with chronic illness is reading, I see you, I believe you, I love you, we will endure together.
This resonates with my experiences so deeply that it has moved me to tears. I am so happy to see so many vocal, disabled nerd fighters in these comments. ❤ we are not alone, we are telling the truth, and we deserve better.
@@armerls Sending you so much love
Thank you🌹 I also have " nonexistent" fibromyalgia and narcolepsy. I at least have started to claim the chaotic enjoyment of being weird. 😸🐒💕
@@morebirdsandroses Oh poor love, I know how cruel fibro is, I cannot imagine trying to deal with narcolepsy too! With love from your sister in weirdness!!
@@katbairwell Thank you you lovely weirdo you. 🙃💐
John using The Format laying on T.B. Rax talking about birds is a whole mood for me today
+++ It's a good mood.
@@untappedinkwell 💖💖💖
Hey John, I’m a wildlife biologist who spends a good chunk of my time wondering what it’s like to be a caribou. It’s a fascinating question, and the way you phrased it struck a chord so deeply within because it’s what I’ve been thinking about lately. We’re all animals, we all want to be heard, comforted, loved. Why do they go there, what do they think as they’re going, do they have friends, all questions that pull on the desire to get up every morning. I’m more like a caribou than I am like anything else.
As someone who has lived with chronic illness her whole life, and became unable to work at 44, I have faced people and institutions that made me feel invalid. I have also been the recipient of so much love and caring that I believe empathy is still an important part of my community. I am grateful I live now instead of 100 years ago.
John is getting really good at The Format and I fully appreciate it
Validate each other. So simple a concept that could, perhaps, change our entire approach to caring for others - in sickness and in health.
And my several chronic health conditions do not sum me up. Nor you either, if you hear me. Nor if you don't.
As someone who lives with multiple chronic illnesses, this video was really comforting. If even one person starts to listen to us more, it's a start, it helps. I needed this today.
As someone with a chronic illness . . . . just silently teary
I’m chronically ill with a disabled 4 y/o. Out current world w/ Covid being “over” has sent us disabled people back to our homes, afraid of getting sick & dying. I feel like the invalids of old: forgotten & left behind.
That camera shot of you sprawled out against the wall, with your half-inflated P4A helium balloons surrounding you in disarray, is such a mood. It is exactly how it feels to me to be two weeks out from the excitement and comradery of the P4A. I have reawoken fully to my Canadian IRL reality, where it is still very much the middle of the bleak midwinter. The party is over, and the memories are fading, but I do have next year's P4A to look forward to, so that's something. Thanks for acknowledging how endings feel, and thanks also for being a light for so many of us, John. You are doing better at this empathy thing than you think.
Had a friend who was a bit too empathetic and I almost felt bad for her. She would get depressed and cry just thinking about homeless people. Interesting topic.
It's crazy how alienating pain and illness can be when it is something so universal. It's so difficult to have others understand chronic illness and pain when it is as simple as remembering an experience they have had with illness and pain and just imagine it as constant or reoccurring. When you aren't sick it quickly becomes difficult to remember what it felt like to be sick. The thought of constant pain or illness is difficult to imagine because you don't want to imagine it, especially as something that could happen to you. We want to moralize illness because that means if you are good you can be safe from bad things, but in order to build that sense of security, you have to also think of illness a moral failing. But the fact is that it doesn't matter how fit you are, how many hours you exercise, how healthy a diet you eat, how often you meditate, or how many million cups of lemon water you drink, you will still get sick and you will still die. The sick are not stupid or lazy. Being healthy doesn't make you smarter or more dedicated. It just makes you lucky. Be grateful, be generous, and please, don't tell me to take up yoga.
The Format feels less like a low budget Bo Burnham and more like a High Quality Art Assignment Response TO Bo Burnham
i cannot express how nice it is to see videos like this on the channel as a disabled person. it's pretty rare for me to find spaces that feel safe for me this way, so thank you
I find it fascinating how a discussion about the lack of empathy towards people is constantly interjected with snippets of things that in contrast do not really matter, like a mic cord length or wearing old clothes. So much thought put into even a casual video.
So I went out into the snow and scattered food for the birds. I will assume this made at least a few of them happier. It did make me happier. Thank you.
"Illness is not some moral narrative." As a chronically ill person in a Puritan-inspired society, this phrase hits so close to home for me. It felt freeing to hear from someone that I respect. Thank you, John.
Your thought process feels so radically different from mine and I’m often pleasantly jarred from my own thoughts hearing it. Thank you for pushing the boundaries of my own empathy, John.
It's REALLY important to be reminded this as someone who is currently able bodied. Because even if someone has "done things to themselves" that have resulted or contributed to their disability or illness (Smoked, jumped from a great height into too shallow water, left another illness unmanaged so long drastic measures were taken, whatever.), the fact that they're disabled isn't a moral judgement on them, and it isn't a 'just punishment' for some imagined failing. Disease and disability cannot care for the moral or ethical character of the afflicted. But humans CAN care about people, and we can decide that society is built for all the people within it, not just those who 'contribute' to some imaginary metric we've decided is the pillar we'll build society around.
And of course, if I'm very lucky I too will live long enough to be disabled one day, probably because of things I've done to myself. And that will not be a moral failing on my part either, even if it sucks.
The juxtaposition in this video between 'invalid' and 'validating' someones feelings was particularly poignant and eye opening to me today. Thanks, John
As you were talking about your back yard tree, I was thinking of mine. It is a very large Douglass Fir and I believe it was likely born before Christopher Columbus was. That breaks my mind - though our lives seem long, they are really short - except our empathy which can be passed from generation to generation and live even longer than our trees. Thanks for making me think.
I finally decided to acknowledge that my foot’s been hurting for a while and made an appointment to get it looked at later today. I’ve been doubting that choice all day but this helped remind me that I can empathize with myself too. Thank you!
I hope that you're able to find some relief! Good luck today.
@@untappedinkwell thank you so much!! Good news I have some answers and a path to fixing the problem🎉
@@lauradftba4653 Yay!!!!!! Awww, thank you for sharing your good news! I hope your path goes smoothly!
@@untappedinkwell thank you
"I was very rarely alone, except in my fear and pain, where I was always alone."
Beautiful
realizing that invalid means in-valid kinda blew mw away. I had jaw surgery in my early 20s. My jaw was wired shut. People couldn't understand me when I tried to speak. it was muffled. Because I was involuntarilary non-verbal, I noticed people started to treat me like an infant. I was babied in ways that I didn't need to be. I was talked to like an infant. When my grandmother developed brain cancer near her speech center and it affected her ability to call up the correct word, I noticed people treating her the same way. I find it interesting that when we are unable to connect in the usual way with the rest of humanity, we default to treating those people like infants, or in-valids
TB🤝John🤝The Format - The perfect trio. I also have the background anxiety, it’s been quite a few years now but I still feel like I’m learning how to live with it, it is both consistent and ever changing.
CBR- Cosmic Background Ruminations
I'm also prone to suffer from background anxiety. Although mindfullness/acceptance based therapy has improved this a bunch - In combination with "taking it down a notch". I do really have to limit day to day stressors or it will rear it's head again. It is a bit waxing and waning. But it's definitely better - A very significant proof in point; I do not feel anxious at this moment. As someone who's been there and is often still there - I wish you a bit of calm
@@Annemoontje I’m currently waiting to be allocated another psych and begin another round of therapy, so I’m hoping for some more calm too, thanks for your reassuring and kind words!
@@bookworm272 I like it…
“Illness is not some moral narrative, and conceiving of it that way is yet another barrier to empathy” as someone with type 2 diabetes, I want to print cards with this on it to hand out to people. (And also post in my cork board to remind me when my brain is being unkind to myself)
I'm writing it on a sticky note right now!
Yes, listening and believing people in their pain, that's the key.
My boyfriend (someday husband) has chronic pain and illness, his condition is complexe and he will not get better. There's this part of me that wishes my empathy could magically make me feel half of his pain so he doesn't have to carry it all, but it doesn't work that way.
Accually, he wouldn't want me to carry anything. And when you think about it, it makes sense for the situation that I don't breakdown and cry everytime he tells me how bad he feels and in pain he is. It's not that I'm not sad, we share intense moments about the reality of him dying way sooner then me (probably) and other hard things that happen everyday. The best thing I can do is listen, give my emotional support and do my best. And I can see how my happiness, nice things I share, the jokes I make and other bubbly things of my (functioning) personality brings him great joy.
I could talk about this for hours but let's just say my empathy takes the shape of actions, listening and functioning and that's the best way to help. Breaking down (even if it happens, it's fine) and "feeling" his pain is not the sustainable (and this pain is not about me).
The Format is quite literally my favorite thing to happen in recent months. And the fact that John does it SO well (sorry Hank! You do great, too!) was for some reason unexpected for me. It might be why I enjoy it that much more. There's just something that is so, so deeply *chef's kiss about these videos from John. Soothing, poignant, funny, touching, humbling, thoughtful. Just, A++ all around
So true. Illness can be so isolating. On the other had I can't tell you how much I admire the hard work of caregivers. Family, friends and professionals do so much for others
Ngl, you had me in the first half. You still managed to bring it back to tuberculosis
It's always there! -John
I appreciate The Format almost as much as Thoughts from Places. The Format is like Thoughts from just your own place.
I'm barely an adult, but over the past couple of years I've had to learn to listen to and to believe people's experiences. It is surprisingly hard. Even for things as common as ADHD, you hear so many stories about people being told they're dumb or lazy as children because they don't function like everyone else. People are so quick to dismiss the suffering of others as a personal failing, and it's awful. You don't tell someone missing a limb to grow it bsck.
We just had a snowstorm last night after an incredibly, worryingly warm winter. I get nervous about how our local wildlife handle these sudden, unprecedented shifts. I just heard my favorite female belted kingfisher fly by my office and got irrationally excited that she had made it through the storm just fine. So I guess what I'm saying is, you can listen to birds in a very limited capacity.
Genuine question, do you recognize her by her voice specifically?
@@IrisGlowingBlue More by location than anything, some belted kingfishers are migratory but some stay in location year round even as far north as Massachusetts where I live. I see this one year round. I'm not an expert on them, but I've heard they're territorial and fight each other. They actually live in mud burrows too, and my office (which is on an estuary) has a large hill next to it that I suspect is where hers is. There's a power line that runs across the river right upstream of me, and that + my dock are her favorite hunting spots. In good weather I'll see her there daily. I keep saying 'her' because only female belted kingfishers have a brown belt marking.