A bit over a year ago I lost a dear friend, while his girlfriend was pregnant.
The feeling of seeing something the person will never use again is soul wrenching. I wept when I read the line "No salt. No salt means that he’s not cooking. He’ll never cook again."
The child is a ray of light for me whenever I see it, I hope the family can find a little comfort in this piece of him that will be brought into the world.
I have followed this story for a while now and wish the family a brighter path in the future. Thank you for focussing my thoughts on what is important, instead of the daily tech grind.
My dad is rapidly loosing his battle with ALS. He has always loved to cut grass. He has very limited mobility (in some ways he is lucky, most people with late stage ALS are basically paralyzed. His progression is respiratory focuses so he is loosing the ability to breath faster than the ability to walk) but with some assistance has still been able to use my zero turn mower and get a little joy out of cutting my grass.
Just this Sunday he reached the point where he can't cut anymore...I guess he is out of salt :'(
Ouch, this one hurts. I lost my Dad to pancreatic cancer last year and had a very similar experience - he loved jumping on the tractor and cutting the grass on his little farm, but we went so quickly from him asking me do it temporarily while he recovered from surgery to him never getting on the tractor again.
So sorry for what you're going through, and wishing you some peace wherever you can find it. My email is in my bio, please reach out if you need someone to talk to (I have no useful expertise or advice of any kind here, but will gladly lend a listening ear).
I lost my mom to ALS six years ago, and those final months still haunt me.
When the time comes, make sure your remembrance service has pictures of when he was all of himself, the way you want to remember him. One of the worst things these illnesses do is leave you with final memories of a pale shadow of the person you loved, instead of the fantastically colorful person they should be remembered as.
One internet stranger to another, I hope things go as well as they may.
The progression is different for everyone so it's hard to give universal advice but I'll try. My dad is progressing quick, it took almost 2 years to get diagnosed. He was diagnosed in May and I'll be lucky if he is still around for Christmas. It's not that fast for many people (lots of examples of people having it for 10+ years) so that certainly impacts my experience.
Make every day count - you don't how how many are left.
If he isn't going to a multidisciplinary ALS clinic I would look into it. Instead of having to go to 5+ individual Dr. appts my dad goes to one big one and sees the neurologist, occupational therapy, physical therapy, respiratory therapist, nutritionist, etc. all in one appointment and they all calibrate together on treatment. It's a long day but far better than managing individual appointments.
It's ok and often better to start a treatment sooner than you might think is necessary. My dad is on an iVAPS (a non-invasive ventilator) to help him breath and that has greatly increased his quality of life and I wish he could have started it sooner. Some PALs (People with ALS) avoid stuff like that because they are embarrassed, see it as a weakness, etc. but then realize how helpful it can be. The biggest example of that is probably a feeding tube. Most PALs at some point have to decide if they want to have a feeding tube placed. The tricky part is that often times by the time they actually need the tube their respiratory function is too low to actually undergo the procedure. The tube can be placed and not used for years, but often time people wait at the time they are able to eat without issue. Unfortunately my dad was unable to get the tube (due to late diagnosis and fast progression ) and eating is one of his biggest struggles (they want him to have 2500-3000 calories a day but he has virtually zero appetite so a meal for him is like half a sandwich). This applies for almost every step of the journey - voice banking, mobility assistance/wheelchair, and even hospice. Most people think of hospice as being for someone who only has a few days left but it is available to anyone with a 6-month or less prognosis and they provide a large amount of support, this is a decision we will likely be making soon.
There are way more support groups/organizations than I would have ever guessed. I'm generally not one to ask for help but these organizations have helped us quite a bit. Team Gleason provided a my dad a portable electric wheelchair basically no questions asked and it was only about a week from applying and having it sitting on his door step. There are local charities near me that help provide everything from adaptive eating utensils all the way up to giving families wheelchair vans. There is also a lot of useful online content - podcast, content creators (@limpbroozkit on IG for example), etc. that can be very helpful.
I'm happy to answer any other questions, publicly on here or email in my profile.
Sure, I don't love cleaning kitty litter, but if I lost the ability to clean it, and I didn't have the ability to have someone else live-in and clean it for me, I wouldn't be able to have a cat, and that would be _immensely_ saddening to me. The same goes for a cutting a lawn; not being able to cut your own lawn means potentially not getting to enjoy _having_ a lawn, given that part of the enjoyment is presumably in actually getting to spend time in it, take care of it, etc.
This isn't even mentioning the fact that the loss of routine can itself be jarring, and of course all of the sibling comments explaining that the real loss is agency. That said, I think it's worth realizing that even though you and I aren't in the group of people who particularly enjoy chores (and those people do exist!), the reason they exist at all is because they do actually accomplish something useful, and not being able to perform them means either losing those benefits or having to rely on the goodwill of others to take care of them for you. Given that the "others" tend to be those closest to you that you care most about, is it really that hard to imagine that someone might feel like they're burdening their loved ones rather than reveling in the "freedom" that comes from not being physically capable of mowing their own lawn?
I am looking at you like that, because you're speaking without first having thought at all.
Imagine the thing you love most in all the world to do. Imagine losing that - as, some day, you certainly will. Then, if you still feel like it, try again.
I don't think the user you replied to didn't think about it at all. They thought about, and found strange, the fact that cutting grass was the thing someone loved _the most_.
It's sad to see the user be downvoted to oblivion and dismissed completely, especially if the guidelines forbid this. No arguments, just "you're wrong".
It is unsurprising. Seliger was a fairly close presence on HN during the end of his life, and not everyone here is well equipped to understand and account for the effect on themselves of sharing such pathos. It isn't something Californian or American culture handles well in general, and even then HN participants constitute an unusual cohort selected partially (if not intentionally) for a habit of privileging rationality over emotion - which isn't at all the same thing as skill in managing one's emotions, especially at their heights. When someone speaks intemperately in such a moment, as here, in that light it reads easily as if selfish and contemptuous of the entire circumstance, and receives a response in accord with that reading.
I don't think that's unjustified, even if I did take the time to unpack it a bit for our mutual interlocutor here. It was not my first instinct to do so. Someone whom a lot of people here care about was within days, possibly hours, of dying. At a time like that, someone who speaks out of turn may very confidently expect to be slapped down for it. It's worth explaining why that's the case, because all else equal a better understood error is less likely to be repeated. But it was an unmitigated error, and the response it received is the one it deserved.
Arguably, the absolute most human, personal thing we can ever do is choose which things do and do not provide meaning to us. There is no deeper, more inalienable agency than that.
Suggesting that a $700 online course about paleo diet is going to save him is disgusting. The Wahls protocol is generally recognized as a scam with no scientific backing.
This is written in focus mode. Once you're out of that, remember to grieve. So, so important. I can't imagine my brother dying, love and prayers to you and his family.
I don’t think there are any modern startup “inventions” which bother me more than meal replacements like Soylent. It’s not that there’s something wrong with having a nutrition shake to replace a meal if you’re in a rush.
It’s more that food, cooking, and eating (alone and with other people) seem like some of the most human things you can do. And so trying to optimize them out of existence feels wrong, a crime against culture. Long after the AIs have replaced entire classes of jobs and hobbies, cooking will still be around.
As someone who hates cooking, I don't understand the argument. Why would I care about whether something is a "human thing" or not? "Crime against culture" means nothing and could be said about anything.
The argument is: cooking and eating has been a fundamental human activity for millennia, one that brings people together, transmits culture, language, etc. - and to optimize it away as a problem is to disregard something very important about being a human being.
I understand the importance historically but I don't agree that it's something very important about being a human being. Someone trying to impose that on me is as unconvincing as a religious person trying to convert me. Give me practical arguments.
When I eat I want to do it alone, which is something you highlighted in your original comment, but hearing you now it's all about to the social aspects. I'm not interested in that. If I want to socialize there are far better venues for me personally. I find eating out with other people a lose-lose. The food distracts me from the conversation but the conversation distracts me from the food, and all of a sudden it's gone before I even had the chance to reflect on the taste.
It should be remembered that most aspects of culture developed because they have a purpose. In the case of cooking and eating good food, there are definitely practical benefits, largely psychological.
One part of it is about directing attention. If you cook for yourself, you pay more attention to what you're putting into your body, and in learning how different flavors come together you learn intuitions about taste and aesthetics. In directing your attention like this, cooking can also serve as a kind of meditation / mindfulness practice.
In knowing how to cook, you become able to cook for others, which is a very common way for people to connect. If a loved one is sick, making soup for them can make them feel loved and cared for, just as it can make you feel good about putting in effort to help them feel better; especially when it comes to things that you just have to wait out, like flu, something like this is an excellent way of maintaining a connection. Conversely, in knowing how much effort it takes to make a good meal you become more appreciative of meals others make for you.
And finally, in cooking with someone else you learn about them and about yourself, about subtle differences that you might not have encountered otherwise. In solving a relatively easy, low-stakes problem together, you gain a sense of closeness without much risk or cost.
Overall, cooking is a practice centered on ideas that are underappreciated by people too engrossed in "hustle culture" etc, so it's important to have it as a tool in today's world. Of course, everything that it provides can be found elsewhere, but these are the reasons it's so deeply ingrained in human culture. I think you would also struggle to find other things that give you all of the above, and more that I didn't go into, for so little investment. It's not that cooking makes you human or something, but cooking does help you to connect with a lot of the deeper parts of yourself that do.
> I understand the importance historically but I don't agree that it's something very important about being a human being. Someone trying to impose that on me is as unconvincing as a religious person trying to convert me. Give me practical arguments.
What one values, or does not value, in life is a fundamentally impractical subject. IMO you're asking for the impossible.
> The food distracts me from the conversation but the conversation distracts me from the food, and all of a sudden it's gone before I even had the chance to reflect on the taste.
Chew carefully. Eat slowly. Sip water. Your digestive system will thank you for it.
>but I don't agree that it's something very important about being a human being
You don't understand that the preparation of food is important to being a human being? Both physiologically and socially? Across every culture on the planet?
>Someone trying to impose that on me is as unconvincing as a religious person trying to convert me. Give me practical arguments.
Nobody is imposing anything on you. Nobody cares to convince you. Go ahead and eat your meals alone.
1. History and evolution are ongoing things. They aren’t “done” and in the past. Today, right now, people use food as an important part of their culture, whether that be immigrant parents teaching their kids recipes from their home culture, a brother making food for his dying sibling (as in the link), or two friends having dinner.
And that’s only on the consumption side - not to mention the entire production industrial complex that employs millions of people globally to make and prepare food - and has done so for thousands of years. “Food gatherer and preparer" probably has a claim to being the oldest profession. Food is so ingrained in human history and culture it’s basically impossible to imagine civilization without it. Which was my point about it being a human thing.
2. Your mention of religion is actually helpful too, because I think a similar attitude is prevalent when discussing religious beliefs: “That was a historical thing and it doesn’t have much effect on anything today.”
Which is very much not the case; everything in the contemporary world has been shaped by religious beliefs, from the concept of the Self, individualism, the structure of political systems, democracy, universalism, on and on. Modernity is in no way a fresh beginning or clean slate in which the past doesn’t apply. That doesn’t mean you need to believe in XYZ religion today, but to deny that it has any contemporary relevance is just incorrect.
3. On the evolutionary front, the fact is that you evolved to eat in a group - the possibility of someone sitting alone eating a meal made by others basically didn’t exist until a century ago. So it formed who you are today, whether you like it or not.
4. Personally, I like to cook alone. It requires a focused approach that prevents you from scrolling TikTok or being distracted by innumerable other things. I also like to cook foods that remind me of my origins – for example, I like making pierogi, as I'm Polish and from the region where a certain type of pierogi are from. I make them using the rolling pin that was my late Polish grandma's, which also makes it a special experience. Food culture doesn't need to a social thing at all.
I don’t want to assume what your opinion is but it seems to be something like, "None of that matters, all that matters is that it tastes good, comes in ready-to-eat packaging, and can be eaten alone."
Which seems to me like the most depressing, reductive approach possible to something with so much cultural significance and history. Do you think the same thing about art or architecture? Literature? Films?
This being HN; I’m gonna guess you’re a technical person, and so you might gain more of an appreciation for food by watching some YouTube videos on chefs working. The skill and craftsmanship can be truly impressive.
3. On the evolutionary front, the fact is that you evolved to eat in a group - the possibility of someone sitting alone eating a meal made by others basically >didn’t exist until a century ago. So it formed who you are today, whether you like it or not.
> Do you think the same thing about art or architecture? Literature? Films?
I don't watch movies and only occasionally read books. Nothing depressing about it whatsoever. In fact, I find your reasoning much more reductive. Imagine reducing life to such mundane things when it has so much more to offer.
You don't have to enjoy cooking to enjoy a well-made meal. That's why restaurants exist, after all. Lots of people are perfectly happy to let someone else do the hard work in the kitchen.
If you actually don't enjoy good food, then considering how important culinary arts have been to humans for all of recorded history, I'd say there's something wrong with you.
If you enjoy eating "good food" (whatever you define that as, since it depends on your taste), that's normal for a human. You don't have to attach a "higher purpose" to it, but it's something that's been important to humans since forever. We have taste buds for a reason, and eating tasty food isn't going to fall out of favor ever, unless humans somehow change into something non-human.
That last sentence feels like a personal attack. I'm not sure why this is so important to you. You write about recorded history, but there is a vast majority of humans who has never written or at least not about food, so I don't know, maybe food hasn't always been important for everyone, we don't really know.
Nowadays, we also have the stress of a capitalist system to deal with, plus processed food we eat since our childhood, which for a lot of people "break" food for them, since they get used to the sugar rush, and normal food tasted "boring" or "bland".
What I mean is, I know plenty of well adjusted people who don't enjoy "good food", and that's OK.
I probably didn't word it that well; I meant that if you don't enjoy eating food that you like the taste of, there's something wrong with you. It's a normal human thing to like to eat, and to eat things you think are tasty. Unfortunately, modern low-quality unhealthy foods are engineered to be tasty, but this doesn't mean there's something seriously wrong with people who like them. I didn't mean "good food" as only high-quality, nutritious food, just something you like to eat and enjoy eating, even if it isn't that healthy.
The people who really have something wrong with them here are those who actually don't enjoy eating any food, and see it strictly as a biologically-necessary chore. Those are the people who seem to be attracted to Soylent. Yes, I really do think there's something wrong with these people.
> Those are the people who seem to be attracted to Soylent.
Maybe if you're only eating Soylent but the vast majority are simply people who don't want to cook for one reason or another. I eat Huel a few times a week and I really like it. I also think it's pretty tasty but most of all it's convenient.
It’s died down a bit now, but 5-10 years ago there was a very vocal group of people that insisted on only having shakes and that food/cooking was outdated.
Yeah, I'm not talking about people who just want something convenient and nutritious when they're in a hurry, I'm talking about extremists who genuinely don't like eating anything ever and treat it like needing to use a toilet.
> Why would I care about whether something is a "human thing" or not?
I can't say why "you" care. That's part of the human element itself, the awareness and ability to reject what may have been thousands of years of evolution. e.g. that cooked meat tastes better to suggest that it's better to cook meat than eat it raw. That salting meat acts a preservative that happens to taste good, while rotting meat smells putrid.
Now as for why "I" care: Culture is identity, and identity is one of the key factors of sentience. Otherwise what makes us different from a beast or a robot?
Food is one of the oldest cultural values and can say a lot about personal, familial, and societal values at that place and time. It gives legacy and a sense of identity. An identity of optimized bland food with all nutrional substenance speaks to a world in ruin, a world with so little leisure that cooking is an extreme luxury, if not a thing of the past for that society.
Unless we're exploring the cosmos, that's not really a message I'd want to send of my time.
You are also a "human thing." As such, it is wise to attend what is of importance to other such, whether or not you would natively concern yourself with those aspects of life, at least if you care to have your life involve other humans in a significant and enduring way.
This is a silly take IMO. I love eating and cooking good food. I also sometimes need something healthy on the road or in between classes etc. Vanishingly few people replace all food with Soylent. It’s fine as a fill-in between meals.
As I wrote, it’s not that having a fill-in meal is an issue. It’s the attitude that food and cooking are some kind of unfortunate requirement that should be optimized out of existence - which is the mentality that companies like Soylent put out there, and what their fans want.
I think it’s largely a consequence of not having a respect for food, and that mentality is not welcome in places like Japan, France, Italy, etc. where there is a deep cultural respect for food.
Fortunately this mindset is limited to a vanishingly small number of rootless young men who are lost in the scam of "hustle culture" - they are overrepresented on HN, but they are also mostly alone and childless, so unlikely to pass the mindset to the next generation
What a weird thing to say. It sounds so passive, like you don't want to have a conversation at all and only make a meta-level comment about other people. And the comment you're making is pretty mean, let's be honest.
Do you think you could in theory have a discussion around this subject in a more mentally healthy way?
I mean, no, probably not. Because the person I replied to was pointing out that there are people who want to completely abandon the ritual of eating meals, which happens to be one of the primary ways the human race has socialized for thousands of years.
So if any of those weirdos want to, you know, eat a meal, then sure we could have that discussion over one, but this brings us to the second part of my comment, which is that the number of people who are lunatic enough to think that abandoning the eating of meals is a good idea, is vanishingly small. I've never met one in person.
The human race eats meals. The idea that you would optimize meals out of your life is more or less the province of like five antisocial, terminally online dudes. If these five guys decide to withdraw from society, be pariahs and wear hair shirts and all that well it's a free country but don't count me in
but really? I was living in SF and drinking soylent in grad school then, and aside from a few maximalists online, nobody I knew ever really thought or wanted that. To me it seemed like dopamine fasting or other silly trends that news outlets will breathlessly write about but everyone else takes in stride as a kinda minor thing they might do occasionally.
If you read any shaving related Reddit forum you'll end up thinking that cartridge razors are marketing scams that dupe the uninformed and most people are actually just shaving with double-edge razors. In reality millions of people who don't actually care much for the act of grooming other than to hit aesthetic goals will use a cartridge razor because it does a good enough job. You'll find many, many more enthusiastic posts from the former double-edged shaving enthusiasts than the latter cartridge-using realists.
You're seeing the same thing with Soylent. My friends who didn't enjoy cooking much before Soylent just had lots of protein bars, TV dinners, and takeout. Now they do the same thing but also drink lots of Soylent. The meal replacement maximalists are loud online because that's the only space they can create consensus in. It's the same reason most loud, minority opinions are overrepresented online.
Cooking is a huge waste of time. Think about the hours wasted toiling in a kitchen, doing dishes, moving little items up and down and setting them here, now there, now wipe up the mess. All for what, so I can sit still for 10 minutes and taste a good thing, then get up and clean up that mess? If I could swap out my stomach for a Lithium Ion battery I would.
I enjoy cooking for a few reasons. I tell people it's because it's so different from what I do at work. There's some truth to that. The main reason is because I like doing things that make people happy. There's something very satisfying about cooking a good meal and enjoying it with others.
I think people would have a better connection to nature if they did these things more often.
But cooking and eating is sort of an umbrella activity for all of those - everyone in the village/tribe/etc. has to eat, and usually they’d come together in one place to do so. Farming or searching for water don’t have the same centralizing social effect.
I think that everyone should do most, if not all, of those things at some point in their lives. It doesn't have to be an everyday thing. But I think that a lot of people in modern societies are completely unaware of how lucky they are to not have to do those things any more, and would greatly benefit from the perspective.
I lived on a DIY total meal replacement shake for about a year:
Pros:
- Feel fucking amazing. Not just digestive, but mind, energy, mood, all over feel great.
- Perfect poops. I'd poop the same ideal poop everyday at the same time. Two wipes and done.
- Cheap-ish. DIY made it much cheaper than commercial products. Allowed fine tuning too. Was something like $7/day.
- Never hungry. I had three shakes a day and was very satiating. I would go months without experiencing the feeling of hunger.
- Lots of water. Each shake had ~500ml of water in it, which made it much easier to stay hydrated.
- Maximized exercise gains. Was tailored for working out, so I didn't leave anything on the table due to nutritional deficits.
Cons:
- The taste and texture. Bad and worse. Wasn't excruciating to get down, but fell into the "It's not good but I'll still have it" camp.
- No variety. Basically the same thing all the time.
- Weak jaw. Your jaw muscles weaken quickly when not being used all the time. It's surprising to eat regular food and find your jaw aching and tired after half a sandwich.
- Planning. Kind of minor but I would need to plan a bit more to make sure I had shakes ready to go. They tasted best if they could sit for an hour or so after mixing, and where chilled.
I gave in eventually because regular food is just so enjoyable and because GNC stopped making the micro nutrient powder that was essential too it.
I don't understand why the folk of HN have felt your post needed downvoting. Thank you for your anecdote.
For several years I made a daily "meal replacement" smoothie. It was all whole foods, except for whey protein powder, including various greens, spices, nuts, seeds, etc. I varied it a little, including or excluding certain ingredients over the week. It covered my breakfast and lunch every week day. It was simple to make in the morning before work, because it became a habit. I knew that every day I was getting a huge range of healthy, whole food ingredients (albeit pre-chewed). I would additionally have a snack or two at work, and in the evening I'd cook something, but I felt no pressure to ensure that meal was nutritious. I could have pasta, with a bit of garlic and butter for example - which I love, but isn't very nutritionally dense.
I was super, super healthy during this time. In very good shape.
I eventually stopped when we had our first child and I couldn't always use the blender at the appropriate time (sleeping child), and I since just got out of the habit.
>because GNC stopped making the micro nutrient powder that was essential too it.
Your anecdote is interesting, but it seems biased towards, "everything was better and healthier, but I didn't get the joy of food".
I'm skeptical that you were getting optimal nutrition from some powder produced in a factory in Mexico. If everything about this was "better", I assume your original diet was terrible.
It's more likely that my body is just overly sensitive to foods (which is very common). I eat clean now but still not feeling like I did back then. Maybe 80%.
Diet and how you feel is highly variable and highly individual dependent. So the shake is excellent for creating a baseline since it is about as plain as you can get food to be.
Having done the Huel thing, it's incredibly low-effort. If you don't value the time spent converting ingredients into a meal, or in expending decision energy either on what to buy or what to prepare, it's a pretty big win.
It was a popular recipe from a forum about a decade ago. I don't remember the name and I maybe can recall the list of ingredients sort of the amounts.
But generally it was carbs (corn flour), protein (whey isolate), fats (oil blend), micronutrient powder, calcium, magnesium, potassium, sodium. No sugar, gluten, dairy or soy.
I understand your point but I believe McDonalds and the likes are worse. Sure some people hang out there together, in fact I even have fond memories of getting a Happy Meal with a shitty toys with my little sister but the food has little nutritional value, there is no "love" and the whole "feel good" situation was planned by some corporate guys in an office...
Similar but different issue. McDonald’s is fake industrialized non-nutritional food wearing the mask of classic Americana burger culture. Soylent is saying that culture doesn’t matter, only nutrients do. A bit like Brave New World vs. the goop in The Matrix.
I, like many others here on HN, have been following Jake Seliger’s difficult road for the past few years. Thankfully from afar, as I can't imagine what he (or his family) must be going through. But getting email updates, seeing his blog pop up on here every now and then, it's become comforting and familiar, and a symbol of hope: that he's still kicking.
I really hope his wife (or brother, or both) will continue writing after he moves on.
I have a little brother. And while I would say we are close, I always wonder how he feels about me. I was not nice to him growing up, and it created a lot of resentment. One day I apologized to him about it, and I remember him seeing tear up out of the corner of my eye.
The day that I think changed our relationship we went on a hike together. While we were driving there he had a bunch of anxiety about it, and wanted to back out. I managed to convince him to come with me and just let all his feelings out; he just yelled at me the entire drive there about a lot of different things. Including my treatment of him.
That hike to this day was the best I've ever been on. Everybody has a different relationship with their brother, but I genuinely do not and cannot imagine this existence without mine. He understands me in ways that nobody else does. He gets my jokes that nobody else does. Having a brother you are close with just _almost_ proves you don't die alone.
I've got a younger sister with whom I've had a great relationship for most of my life with. She gets my jokes like nobody else just as your brother gets yours. She's been the first person I've tried to make laugh. Even now when we hang out, she's my favorite "audience" member to be silly around. Luckily, we live right across the street from eachother and see eachother multiple times a week.
I hope your last sentence resonates with her as it does with us!
My wife and I bought a house across the street from my sister in 2016. I was really reluctant to do it, to be honest; I thought I was getting myself into an Everybody Loves Raymond situation where she'd be popping into our home uninvited all the time. But she moved away a few years ago, and we miss seeing her every day. We miss my little niece and nephew running around outside screaming, or running across the street to tell us about a toad they found or something their dad is doing. We even miss her annoying little dogs constantly getting off their chains so they could run across the street and into our backyard where our dogs would go ballistic.
Luckily I'm in the same situation with my younger sister. Unfortunately she lives several hundred kilometers from me but we are in contact regularly and sometimes we even go on vacation together.
Last week we lost our Boston terrier. A chronic illness turned acute. What I thought was a routine trip to the vet turned into The Talk.
I held our little girl as the vet helped her go to sleep and told her: “It’s ok. You can rest now. We love you so much, but you don’t have to fight for us anymore. Lay down and sleep. It won’t hurt anymore.”
I’m glad Jake is surrounded by people who love him. I’m sure they’re telling him the same things. And I’m also sure it’s harder for them to let go of their beloved husband and brother than it will be for him to close his eyes and finally rest.
Man, the part about the credit card at the funeral home hit me really hard.
When I was 20, I witnessed my dad collapse in front of me as the result of years-long battle with heart disease, failed to help him with CPR, and saw him "officially" die in front of my eyes at a hospital 30 minutes later.
Barely hours later I am in a funeral home trying to make arrangements for a cremation because he had no will, assets, or last wishes, and yea, that transactional vibe hit really hard - they were feigning empathy, but I was 20, broke, just suffered a pretty traumatic event and was in quite a vulnerable state. It felt disgusting that they were trying to "upsell" me on services and every step of the process felt designed to wring every single dime that I had out of me. Luckily I didn't have much to give at that time or I probably would have.
> Both of us lacked the emotional maturity to form deep, meaningful relationships with other people.
> Jake loves his plug-in induction stovetop, and thinks it worthwhile despite its cost.
These are Amazon affiliate links to random crap in the middle of a blog about a brother dying to cancer about to leave a pregnant wife. What is happening here.
"Bizarrely, it’s apparently now required by the FTC for me to write, somewhere “As an Amazon Associate I earn from qualifying purchases.” So those links to books include Amazon referral tags, which you probably already know if you care about that sort of thing."
Doubt that’s it, they would make more disclosing the affiliate links as a way to donate or requesting donations directly. I’d guess it’s just normal for them, or maybe inserted automatically, or maybe somebody was amused by it.
There was no malicious intent - this is Sam. Jake simply likes that cooking device, so he put a link to it when he edited my essay. He makes almost no money from his website.
> Several funeral homes that had good reviews online. The folks on the other end of the line seemed nice. They said the right things, which makes sense because they’ve got a sales funnel. And then they asked for a credit card. I get that funeral homes are businesses that need to make money, just as most of us do. It still feels callous and transactional. Send me an agreement, or something. I’ll DocuSign it. You’ll get your money.
Like he writes, that's just the world we live in. I always wonder at why certain realities under capitalism trigger our innate disgust and not others - is it just overton window? I agree that it's gross to have affiliate links on a blog about a dying brother, just like I think it's gross that funerals can cost damn near as much as weddings, and he's right, at every step of the way people are asking you for money at really shitty times, because you're one of 20 funerals the given vendor is dealing with and they're running a business.
I also think it's really gross that the majority of people money to a stranger every month for the right to live in their home, for years, decades even, but most people don't find that gross in the same way. Most people also don't find it gross that you have to pay to have children, pay a fee to activate the coax into your house to make it actually be able to connect to the internet, pay to be able to receive data on a very busy electromagnetic spectrum all around us, pay to have your kids eat at school, pay to get onto a train full of a thousand other people, etc. Why are some things gross and not others? Was there friction as certain things started costing cash that didn't before?
Under communism you let the government take care of things, but still in the end, it's the people you have to deal with. So even for a funeral, you will have to talk your way in, use your connections or bribe for better something... It is still transactional, just a different type of transaction.
I always felt that life in Israeli Kibutz(https://en.wikipedia.org/wiki/Kibbutz) is how I wanted the society to work, but it just doesn't scale and even that way of life is going away under the pressure of the society from outside.
I'm a little confused by your comment, because I also admire the Kibutz method, however it's widely regarded as communistic (some interchangeably call it "socialist") so I'm not clear at the implied contrast to the other communism system where you need to bribe officials for a good funeral. Can you help me understand better what you mean?
I don't see Kibutz as socialist or communist even if some ideas are similar. As I wrote the scale is very different. Kibutz is communal, like a large family. You can't have transactional relationships with family members. Also, you are not forced to be a part of it, you can leave any time. So if I compare it to a communist farm like Kolhoz where the former serfs still were enslaved by the government. So there is a certain difference in the personality of someone who lived and worked in Kolhoz (alienation) and Kibutz (open and not competitive/selfish). I'm saying this as someone who had family members in Kolhoz and knew a lot of Kibutz-born people and also worked in Kibutz(which was privatized).
Thank you, Jake! ---and your family--- for your links and work that highlight the importance of clinical trials for mRNA tumor vaccines! Will keep posting to HN her articles when they come out.
2) donate to (or even joining!) HN-adjacent Arc Institute (mRNA translational research)
3) sue the FDA for clinical trials, in general. This is not a call to attack on the FDA, but perhaps the best way, to improve processes, that is available to citizens.
At this point, I honestly think that we'd be much better off without an FDA at all.
It costs >$2B to develop a drug. Most of this is on account of efficacy testing -- phases 2 and 3 of the drug development process -- which are nearly impossible to run. And when drugs exhibit poor or nil efficacy, the FDA sometimes approves them anyway, making the entire process unprincipled. See, e.g., flibanserin, aduhelm, and others.
The result is total regulatory capture. If you're a small firm -- a biotech startup -- you quite literally can't introduce a new drug to the market. Your only hope is to push it through preclinical trials and then partner with -- or get bought out by -- a large "prime" like Pfizer which specializes in regulatory compliance and has the deep pockets required.
Back in the 1940s and 1950s, there were lots of small firms that competed in drug development. Syntex, for instance. That was a period the industry still calls "The Golden Age of Drug Development," and it would be utterly impossible to recreate today.
All of this is without even going into the bureaucratic hurdles which delay new treatments from reaching patients, the chilling effect that the red tape has on pharmaceutical R&D, the way they gatekeep generics, and I could go on all day. It's not just a bad system, it might be among the worst systems possible, as it concentrates all power and all wealth in the hands of a few -- and the patients are the ones who suffer for it.
it's very bureaucratic, but I'm curious what phases of the process you think we can skip? was the golden age entirely due to lack of procedural burden, or just low hanging fruit?
I agree that it's all a miserable mess, for sure, the solutions are just unclear to me; the relationship between the public and those developing drugs is increasingly hostile due to the need for blockbuster hits and really questionable effect sizes that get pushed due to sunk costs
Efficacy testing -- those phases 2 and 3 -- are entirely unnecessary. They didn't exist prior to 1962's Thalidomide backlash, ironically despite the fact that Thalidomide failed safety testing in the US and was not approved for use.
So it's simple: After phase 1 safety testing, allow drugs to be marketed, but mandate postmarketing surveillance for a period of 5 years to try and tease out real-world safety, efficacy, and drug interactions. This would ultimately result in a better and safer system, as quite a lot of drugs have problems that aren't revealed in phases 2/3 anyway. (e.g. rosiglitazone.)
This simple fix would not only speed up drug development, it would also make drug development a lot cheaper. Compared to the current paradigm, it would heavily incentivize R&D, and bright young minds might see the development of therapeutics as something potentially rewarding. Whereas, today, nobody in their right mind wants to get into pharmaceutical development when they could be making much more money, with much less red tape, in tech.
Physicians' associations, such as the American Heart Association, can issue treatment guidelines based on available clinical evidence, real-world data, and expert consensus. They already do this anyway, and in most cases their guidelines are the default prescription.
Also: Postmarketing surveillance data, peer-reviewed journals, mechanistic analysis, etc. There are lots of ways to decide which drugs might be of benefit. Leaving the decision to the FDA has, to this point, done far more harm than good.
The largest single payer in the US is the Federal government. Medicare, Medicaid, Tricare, the VA... The problem won't be fixed for the vast majority of expenditures because the government will need to perform the same function the FDA is now for it's drug costs.
Maybe. But cheaper drug development should also make for cheaper drugs, which will weaken the stranglehold the insurance companies have on drug supply and distribution.
I'm drug discovery and the FDA absolutely _does_ keep all the crazies in check.
Many people died during that golden age, and don't forget that the same golden age produced many of the problems we're drowning in / trying to fix today (PFAS, etc.)
I've written about this before. Basically, the FDA's position is that it's better for 10,000 patients to die of neglect than have 1 patient die of quackery.
Drug development is in shambles because the FDA requires >99.99% confidence that pharmaceutical companies are not selling quack cures. Do we need that level of confidence? Especially for cancer, is that degree of confidence warranted? Is the process efficient?
There's legitimate fear of quack medicine -- and then there's whatever the FDA is gripped by, which seems to me a lot like insanity.
> PFAS
Not exactly something that goes through the usual drug approval process. What other problems come to mind?
There's a lot of quackery around these days, especially with regard to tech and finance.
There's quite of bit of quackery just with nutritional supplements, too. And people and companies try to bypass the FDA all the time with fake cures, the COVID-19 epidemic was just the latest version of that.
The FDA is over-zealous with their testing requirements. However, without them we will see an explosion of fake cures for everything. The legitimate pharma companies will lose money, or otherwise start cutting a lot of corners in the pursuit of profit.
We need something like the FDA to keep things in check.
I don’t think they’ve kept all the crazies in check. Most pain and anxiety “medicines” are harmful. People are dying today due to drugs the FDA has deemed safe.
It's not just about the nutjobs in the past. There are plenty of modern nutjobs, and one of the shit-on-shit sandwiches that is fuck cancer is getting (at best) the clueless to (at worst) psychopathic opportunists peddling quack cures, all this at a time when the patient and/or caregivers may be willing to grasp at any straw, no matter how slender, offering hope of a cure, or even a few more good days.
I'd run interference on this some years ago, before the emergence of the public Internet / WWW, and ... it was already bad enough. Whilst online fora are often praised as being of tremendous benefit to patients and caregivers of chronic or terminal conditions, increasingly they're overrun by that same set of dramatis personae, and it absolutely, absolutely boils my blood.
There are criticisms to be made of the FDA and Pharma, but for the most part those engaged are largely subject to poor incentives rather than outright fraud and opportunism.
One of the tremendous values of jseliger's account is his exploration of alternatives, and candid commentary (especially recently) of how even what does work for a while can stop working.
Cancer is a complex set of phenomena which share a common symptom: unconstrained "crab" growth (the tendrils which spread outward from tumors). In German, "cancer" is literally "krebs", that is "crabs" (which of course has its own confusing connotations in direct translation to English). What's coming to be appreciated is that each individual cancer case is ultimately its own evolving community which adapts to, and often overwhelms, the treatments and countermeasures deployed against it. That said, there are cancers which are remarkably amenable to treatment, and are wholly curable. Others not so much. Details in this case matter immensely.
I tried to upvote both of you to keep this civil.. I think there are important points to consider on both sides -- and I find this repartee between you and A_D_E_P_T most informed!
it might take some time to reconcile your points though, some moderate data might help, what do I know, being peripheral to drug-development..
If you've already decided on cremation, look for a local Cremation Society. The term you're looking for is "simple cremation" where the deceased is cremated and the ashes returned to you. No ceremonies, no viewing, minimal decisions, minimal expense. Some funeral homes offer this also, they aren't the only option.
The celebration of life at a later date can then be organized when all involved are feeling up to it.
At my little country parish, we do burials in-house, including preparing the body. The friends of the deceased get to grieve by washing them, building their coffin, digging the grave, singing the funeral, lowering them by hand, and burying them.
After doing this, I can't imagine giving the body of a loved one to a funeral director to be burned.
From what you're saying I suspect that what actually makes you sad is the hands-off approach we take to funerals in general, regardless of the approach to the remains. Would you feel differently if cremation were done in the traditional way—on a funeral pyre lit by the grieving loved ones who watch as the body is consumed? And do you feel less sad about people handing off the body to a mortician to be prepared and buried through the more normal processes we use today?
For myself, I'm all for cremation, and I say that as a devout Christian. When I'm dead I don't want my family to make a big deal out of my mortal remains. That's not me, it's a shell that I left behind on my way home. Cremation emphasizes that I've moved on in a way that for me burial just doesn't.
> what actually makes you sad is the hands-off approach we take to funerals in general
That is a component, not the root.
> done in the traditional way—on a funeral pyre lit by the grieving loved ones who watch as the body is consumed?
Yes, that would be better. I still don't like cremation, but that is also a true sense of finality and closure. Would stink to high heaven, though.
> For myself, I'm all for cremation, and I say that as a devout Christian. When I'm dead I don't want my family to make a big deal out of my mortal remains. That's not me, it's a shell that I left behind on my way home. Cremation emphasizes that I've moved on in a way that for me burial just doesn't.
I am as well, but most traditional Christians do not believe in Ghost in the Shell. The body is an essential part of our being, and does not lose that aspect of our being after death. Cremation was previously only practiced by cultures that believed in a split reality—for example, the Norse pagans and Valhalla.
As Christians, we all believe in the bodily general resurrection and heaven being in "the same place" as we are now (assuming all Christians believe in one of the two forms of the Nicene creed).
Working from there, burial seems more appropriate.
Another believer with an alternate take on cremation that doesn't require body/spirit duality: God made man from dust, and even without cremation, to dust we shall return. It is really no trouble or extra work for God to raise the dead from scattered dust than it is for a relatively intact body, since that's what most resurrections would require anyway. Besides, when the resurrection occurs, we're getting better bodies anyway, so why worry about what happens to the old one? Intact burials are a tradition (which is totally fine), but not a commandment.
I did say "Working from there, burial seems more appropriate."
It's not about what God can or cannot do, it's about treating the body with the honor due as a member of the Body of Christ. Someone who is burned to death does not die at a disadvantage at the last judgement.
> Intact burials are a tradition (which is totally fine), but not a commandment.
Correct. I see your point, but lean towards tradition in cases of questions.
> assuming all Christians believe in one of the two forms of the Nicene creed
I guess this is where we part ways somewhat—I'm a devout Christian who does not accept the output of the First Council of Nicea as authoritative. I understand it to be a good faith effort to standardize what had already become a very diverse religion, but I don't hold it in higher regard than any other post-apostolic interpretation of divinity.
That said, I'm not sure that Nicea is relevant when it comes to cremation—the Creed itself doesn't have much to say about death and resurrection except that there will be one, which I accept wholeheartedly, but which at the same time doesn't persuade me that the mortal body sown in corruption is something God expects us to feel attached to or to attempt to keep intact after death.
> I look forward to the resurrection of the dead and the life of the world to come.
I don't see how this implies heaven being in "the same place" as we are now.
I also don't see how our bodies can be made perfect but only if we don't burn them up first. Seems like a major limitation of God's infinite power if he can take someone that's nothing but bones and make them perfect but someone who is a pile of ash is just too difficult.
> It's not about what God can or cannot do, it's about treating the body with the honor due as a member of the Body of Christ. Someone who is burned to death does not die at a disadvantage at the last judgement.
So having care in the process of burning the body and honoring the cremains isn't treating the body with the honor due but putting someone in a pine box and burying them in the dirt to be eaten by worms and "leach corpse juice into a water table" is treating the body with the honor due?
Because burning a body is inherently disgusting. Try it with a small animal, see how it is. Commiting someone to the earth is far less awful, far more natural, and just generally better.
In concept, cremation is lovely. In practice, you need a bone grinder, a cremation chamber that requires you to break the femurs of the dearly departed to fit them inside, and massive filtration to prevent the entire area from smelling of burnt corpse. Burial requires a box.
And rotting in a box "leaking corpse juice" isn't disgusting. Try it with a small animal, see how it is.
Honestly though, I can't really try it with a small animal as I don't have a cremation retort capable of reaching the ~1,500-2,000F that are common on actual cremation retorts. I don't know what kind of oven you rock in your kitchen but mine tops out ~500F.
I don't find it sad but your tradition sounds nice too. In the US, like most everything else, there are way too many rules and regulations and official processes around the simple, human experience of death.
I'm in the US—Tennessee, specifically. There are far fewer rules than you might think. Most of the rules that do exist apply only to funeral homes.
If you want to be buried on your land, for example, you have to check with the county office to make sure you're not going to leach corpse juice into a water table, and so that future people know not to build on your grave. That's it.
I think it all depends. My family is very dispersed. Many would need to get visas just to attend my funeral if I die here, and spend thousands on airplane fees on short notice. I would love to be burned and my ashes distributed among my family instead. Give each one a little necklace or ring or something with a piece of me, and give me adventure after my spirit has passed.
Different strokes, as they say, and the immense variety of funerary traditions, modern and traditional, strongly argues against attempting to paint ones own personal or community tradition against others. Amongst other concerns, this seems to increase the friction and pain of what's already an especially difficult experience for many.
I guess that is yet another thing people can have very different opinions on.
Everything you just mentioned sounds absolutely horrific to me. I would never want my family and friends to do any of that to me, nor would I do it for them.
Many of us are farmers. We see death plenty. Ignoring it or outsourcing it doesn't make it go away, and I don't believe it's healthy.
Burying my friend was hard. It was sad. I had a constant reminder of my own fate in front of my eyes. It's a deeply human experience, and I think that everyone should go through it.
The death I see in my normal life is much worse. I recently had to put a baby goat down. Can you imagine looking a baby goat who adores you in the eyes, then shooting it between those eyes? That shit hurts deep.
No one is running away from it. Please don't assume your experiences are wildly different from others without any basis for it.
No one is ignoring, outsourcing, or running away from it — the end result is the same, a person has died and people are grieving.
People grieve in different ways, how it's done is often tied to their communities and past practices. I would spend time with the deceased friends and family sharing our memories about them, often over multiple days together.
To me, fiddling around with the body and concerning others about how it's going to be put into the ground seems disrespectful to me — but I understand that's what some people do and that's fine.
P.S. you should put down goats by shooting slightly above the eyes, or to the poll.
Please don't take what I'm saying as an indictment of anyone. As a human race, we have outsourced death to those who are willing to deal with it, instead of being forced to come to terms with it. I'm saying that's bad.
Of course people grieve in different ways, but closure helps massively with the process.
> To me, fiddling around with the body...
You would not like what they do in funeral homes, much less crematoriums. It's more body horror than peaceful laying to rest.
> P.S. you should put down goats by shooting slightly above the eyes, or to the poll.
I use 10mm (placement matters less, cavitation causes instant brain-pudding), and was also using a colloquialism.
Respect, also other preparation at the same time. People begin to leak after being dead for a few hours, have to plug up and close some orifices, make sure the eyes stay closed. Also, hospitals don't do anything after death, and many people defecate upon passing.
While I understand your general point, this right here is one of the reasons why I'd strongly prefer cremation for myself. Knowingly subjecting friends and family to this feels... selfish, and probably traumatic for them to boot.
Thank you, Jake! ---and your family--- for your links and work that highlight the importance of clinical trials for mRNA tumor vaccines! I will post your wife's work to HN when it comes out.
https://archive.ph/bessstillman.substack.com
(Archive listing jseliger's wife Bess Stillman on clinical trials (including how to navigate them as patients) as well as comments)
Suggestions for concrete directions that have been mentioned, that are worth highlighting, in order of importance:
2) donate to (or even joining!) HN-adjacent Arc Institute (for mRNA translational research)
3) sue the FDA for clinical trials, in general. This is NOT a call to attack the FDA, but perhaps the best way, to improve processes, that is available to citizens.
From the article: "This is not meant to disparage therapists, advocates, or grief counselors. Each person must find their own way to deal with the reality that we perceive: what works for one may not work for others."
I think I know why you’re downvoted but I agree. Not to take anything away from this beautiful and sad article but it’s easy for people dealing with mental illness to be dissuaded from getting professional help, which on average is very likely a very bad idea.
You posted this at least 3 times. That's not ok, and it's also not ok to post a comment as a reply to a high-ranking comment when it isn't actually a response to that comment.
Starting Hospice - https://news.ycombinator.com/item?id=41157974 - Aug 2024 (116 comments)