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.
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.
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.
> 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.
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.
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.
Readit News
Starting Hospice - https://news.ycombinator.com/item?id=41157974 - Aug 2024 (116 comments)
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).
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.
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.
Dead Comment
Dead Comment
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.
https://jakeseliger.com/2024/02/26/food-and-friends-part-i-f...
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.
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.
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.
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.
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.
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.
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.
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.
I’m not sure which is worse…
I really hope his wife (or brother, or both) will continue writing after he moves on.
RIP Jake. May heaven have the most extravagant spice cabinet waiting for you.
I don't believe from reading the article, this is correct at this point in time.
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 hope your last sentence resonates with her as it does with us!
Thanks, I needed to read something positive after that blog post.