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What My Son's Disabilities Taught Me About 'Having It All'
- wmboy 14y agoQuite off topic, but well worth reading nonetheless. So often we live out lives with the subconscious belief that we'll be happy when ...[insert big goal]. The reality is though, if we can't learn to be happy with our imperfect lives as they are today, we'll never be happy.
- CodeMage 14y ago"Happy" is such an ambiguous word and happiness such an elusive concept. While I truly sympathize with the author, this article, like many others in similar vein, seems to offer the same kind of message as that stereotypical mom-to-spoiled-kid admonition: "Eat your food, don't you know how lucky you are? There are children starving in Africa!" I agree that the media are trying to sell us the idea that happiness is a state to be obtained by achieving whatever is the latest definition of "success" and I agree that this is bad. But if we're trying to avoid that, let's be careful not to run into the other extreme: confusing happiness with contentment. It is normal and natural for human beings to want more and strive for it. I think that the idea of "having enough" goes against our nature. Sure, I probably have more than I absolutely need for survival. Sure, I guess I "have enough" according to some arbitrary definition of "having enough". I most definitely "have enough" when you look at it from the point of view of someone who has less. The point I took away from the article is that we should enjoy what good we have. That's a message I can agree with: even if you want more, don't forget to enjoy what you have now. But I can't take that one more step and settle down and say "That's enough." I still don't see why I should do that. Perhaps it'll come to me some day, but for now, all I can think of when people offer me that idea is this passage from Frank Herbert's "Children of Dune": "[...] Tell me, Namri, are you content?" "No." The words came out flat, spontaneous rejection. "Then do you blaspheme?" "Of course not!" "But you aren't contented. You see, Gourney? Namri proves it to us. Every question, every problem doesn't have a single correct answer. [...]"
- vacri 14y agoI think that the idea of "having enough" goes against our nature. Our nature as humans or our nature as European-derived societies? Plenty of indigenous peoples around the world are/were quite happy with "having enough". Striving for more is a cultural thing, not 'human nature'.
- daeken 14y agoOur purpose in life is to spread our genes as far and wide as possible. As such, it's not far off to say that "striving for more" is a facet of human nature; having more money, a fancier car, more goats, bigger muscles, etc is a great way to get more mates, and fulfill your evolutionary goals to a larger extent.
- colmvp 14y ago"...having more money, a fancier car, more goats, bigger muscles, etc is a great way to get more mates, and fulfill your evolutionary goals to a larger extent." Indeed. Being rich and famous is a way to compensate for the lack of genetic traits that are typically attractive to the opposite sex (be it height, facial looks, or even race). Salman Rushdie, Jay-Z, Tiger Woods...
- mattgreenrocks 14y agoFuck success, and all the glorification of it. I've been a slave to it (and ambition, which is just success in another guise) for way too long. Why do I say this? Because I'm not fully convinced it was always me choosing success. I was choosing success out of my own broken desire to be accepted socially, as if I had to redeem myself in people's eyes. This was a false reality I'd constructed based upon negative experiences in the past. The winning move was not to become the Ideal Male Seen On Magazines, but instead to grow into my identity. I have nothing to prove, and no one to impress, ideally. I'm not saying success is bad. I just wonder sometimes if someone benefits from all the neurosis and anxiety that the trappings of success lays for people. Capitalism? VCs? Because it seems that many elements of culture are not created with our best interests in mind. Think about it.
- ibejoeb 14y agoAre you referring to the article? It's not off-topic if it's worth reading. I'm sure many here are rather well-off but still struggle with happiness.
- wmboy 14y agoWell, I'd already read (and enjoyed) this article outside of Hacker News, so when I saw it on the home page I was quite surprised as the article has no reference to technology, start ups or business in general. With that said (& in case I was misunderstood) I have no issue with it being posted!
- scottilee 14y agoJack Dorsey tweeted this a couple days ago and I thought it was pertinent: "Be happy, but never satisfied." -- Bruce Lee http://twitter.com/jack/status/233963752347795456 http://twitter.com/jack/status/233963752347795456
- FaceKicker 14y ago> "You know cognitively, he's functioning at the bottom 1 percent of children his age," [our neuropsychologist] said. [...] "That means 99 percent of children are doing better than he is." [...] He waited, seemingly perplexed. "Having seen what I saw, and of course you have to be with your son all the time -- I have to ask you, how do you have the patience?" I'm confused, can anyone offer any insight as to how a neuropsychologist would be genuinely surprised by this case? I would have expected that a rather large percentage of a general neuropsychologist's (or at least one that specializes in children) patients would be people who "function at the bottom 1 percent".
- pyoung 14y agoThat line also struck me as odd. My immediate hunch is that she took some liberties with the quote, as I doubt a medical professional would ask a question like that.
- vacri 14y agoI had major problems with that story as well - I used to work as a medical tech in neurology, and half our patient load were kids. Either the story is made up, she's misreading sympathetic commiseration for astonishment, or the neuropsych is massively inexperienced. Although the bulk of kids I saw were not like that, cases like the one in the article are not rare. One kid I saw had a left hand that was like leather because biting it calmed him down. Academically interesting, but not astonishing, and certainly not something you should be eroding the parents' confidence about. The only kid I saw that was truly unsettling was one whose throat didn't work properly and constantly sounded like he was drowning in saliva. He literally could die at any time, and his mother said that you just have to get used to the sound. The thing is, most parents with severely mentally impaired children deal with it. They kind of have to, because the choices are largely limited to "deal with it" or "let your life fall apart". Occasionally we'd get parents who would morosely define their lives around their child's problems (or even worse, munchausen-by-proxy, but that was really rare for us to see), but for the most parents it was a sense of 'life marches on'. I think the article gives a great sense of that, but the reactions of the neuropsych really disturbed me.
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- losethos 14y agoRocket scientists are way smarter than brain surgeons. 400 MHz clock here: of the sea a way for the ransomed to pass over? 51:11 Therefore the redeemed of the LORD shall return, and come with singing unto Zion; and everlasting joy shall be upon their head: they shall obtain gladness and joy; and sorrow and mourning shall flee away. 51:12 I, even I, am he that comforteth you: who art thou, that thou shouldest be afraid of a man that shall die, and of the son of man which shall be made as grass; 51:13 And forgettest the LORD thy maker, that hath stretched forth the heavens, and laid the foundations of the earth; and hast feared continually every day because of the fury of the oppressor, as if he were ready to destroy? and where is the fury of the oppressor? 51:14 The captive exile hasteneth that he may be loosed, and that he should not die in the pit, nor that his bread should fail. 51:15 But I am the LORD thy God, that divided the sea, whose waves roared: The LORD of hosts is his name.
- chris_mahan 14y agoI told a lady at my son's school, after I dropped him off one morning: "There's at least a billion people who would love to be wearing my shoes right now."
- zmitri 14y agoIf anyone is interested in this topic, you should check out Louis Theroux's Extreme Love series http://www.bbc.co.uk/programmes/b01gvt26 http://www.bbc.co.uk/programmes/b01gvt26. Some parents seem to echo the same sentiment, but many of them don't. While larger families seem to be able to cope, and actual appreciate having someone slightly different, many single mothers are forced into having their children taken in by the state.
- pwny 14y agoLouis Theroux is an excellent reporter. He really has the gift of getting in touch with the people and stories he covers. I mean, the guy spent a lot of time with the WBC and still tried to understand them instead of going crazy like a lot of people would have.
- newobj 14y agoEvery time I read a story about a kid with developmental disabilities and gut/gluten issues, I'm dying to know if they've ever tried MB12 and L5MTHF injections. God knows it changed my kid's (and my) life.
- ghurlman 14y agoWhy? [citation needed]
- newobj 14y agoSon was diagnosed as autistic at age 2.5. Many developmental delays including speech, inconsolable screaming, waking up 8+ times a night, and on and on. Literally a day after receiving his first MB12/L5MTHF injection he started talking. In the year and a half since, along with other supplements (fish oils, B6, probiotics, TMG, Zinc, etc -- all over the counter), and cutting out soy/gluten/dairy/eggs etc he's basically a totally typical kid now - he has no therapies, goes to a normal school, is advanced in some areas. For myself, I lived a long time with low-grade but chronic anxiety and depression and after all this went down finally had some testing done on myself and found out I am homozygous for the C677T mutation, which means my body can't make methyl-B12 or methyl-folate. (Homozygous is 60-70% reduced efficiency in the reaction). I started supplementing with the same (though I get my MB12/L5MTHF orally, not injected), and for the first time feel like a cloud has been lifted. It's been amazing. Turns out my mom, her dad, and so on and so forth were all B-12 anemic. It took my son being severely impacted for ME to finally get tested to finally figure out for the whole family what the problem is. The interesting part is when the methylation process is disrupted by this mutation one of things whose production suffers is glutathione. It's a very important antioxidant (http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-...). Thinking about one of the major detoxifiers of the body being broken is interesting in light of the seemingly tenuous links between "autism" and vaccines etc. In short my armchair speculation is that there's likely a large overlap between undiagnosed 677T/1298C mutation sufferers and "autism" and when you think about injecting those kids with things that contain known irritants causing even more inflammation that the body can't clean out, it's not hard to imagine why it seems like they "cause" autism. To me it's simply more like pulling the trigger on a gun that's already been loaded and pointed to your head. Homozygous 677T mutation rate is somewhere between 1-15% in the US.
- arrel 14y agoI usually have a hard time ignoring the Joneses and feeling content with what I have, and I don't think that's a necessarily bad thing. Those who accomplish the most, from Thomas Edison to Bill Clinton, often do so because of this drive to be better than the rest of us and have it all. Progress depends on discontent, and it's easy to read feel good articles and exchange "happiness" with "laziness".
- kalid 14y agoI think it depends on the field and the person: in politics and business, probably. Do you think Einstein or Gauss were driven by a desire to have it all? I suspect they'd still do what they did even if they'd "made it" and were the richest men on earth.
- michaelochurch 14y agoThis aside has nothing to do with autism or the writer of the article. I just want to tackle the "having it all" discussion. When people say they want to "have it all", they're not actually saying they won't be happy until they have everything. A life without tradeoffs is literally impossible. You can't, for example, become an expert on every subject or visit every location in the world or learn how to play every musical instrument ever made. It's impossible. Rather, they want a life full of the stupid bullshit tradeoffs that you have to deal with if they don't have resources, like having to decide between a 90-minute commute vs. living in a cramped space without a dishwasher. Those horrid tradeoffs make it impossible for most people to achieve anything great. It becomes a self-perpetuating cycle. If you're losing 20 hours per week to housework, you won't have a good career. If you don't have a good career, you won't be able to afford help. You have to bust your ass during your 20s and 30s (and preferably not have any health problems or setbacks) while you can to establish momentum, and just hope that your reproductive potential hasn't declined too much by the time you're career's in order and society has thereby given you permission to have kids properly. Tradeoffs always exist, but there are people who are richer and more established and have a higher quality of tradeoff to face. If you're debating whether to leave a high-level position for a "risky" CEO spot at a funded startup, this is a high-quality tradeoff. If "downshifting" your career means you buy a place with a view of Prospect Park instead of Central, that's a high-quality tradeoff. If having another kid means that one spouse is going to have to give up a career, that's a low-quality tradeoff. People with enough resources (not just income, but also connections; well-connected people don't fret about getting fired and don't have to work 60+ hours per week) can have two successful careers and well-adjusted children. The "have it all" rhetoric is an attempt people make to universalize the problem, because no one can actually have everything, and divert attention away from the more specific/parochial fact that they're miserable because they don't have enough resources (since no one likes a person who whines about not being rich). And if you want to actually achieve something in this world, most people don't have enough. Most people spend their lives bogged down in shitty details implementing the crappy ideas of the people in power.
- giulianob 14y agoPretty accurate for my case. I have a nice new home, a good family, a good job, etc... but I spend a decent amount of my spare time working on a game as a side project because it's really my passion. I try not to complain about it though because I do realize I am very fortunate. However, I do definitely feel that catch-22 where if I didn't have a full time job I'd be able to dedicate more time for my game but without my job I'd be kind of screwed. At the end of the day though, I'm happy just to try and make my game work but I can't really complain about much even if it doesn't. I won't blame anyone else or even myself really, I do try hard. I'll just keep implementing the crappy ideas of the people in power instead.
- edw519 14y agoI love posts like this on Hacker News! They remind us all that what is in our heads and our hearts trumps everything else: money, stuff, conditions, and the opinions and actions (or inactions) of others who really don't matter. Like just about everyone else here, I can add my own experiences. I'll just say that I have more of some things than I ever thought I would, but the things that I've lost remind me what's really important. Sometimes I wish I had learned this much earlier, but it's never too late... Let's all make the most of the cards we've been dealt - one day at a time. Thanks, OP, for the yank back to reality. Now back to work (with a smile).
- Jun8 14y agoThis is a fantastic heartwarming story that I think most of us will have something learn from. For me, the takeaway was, as Tolstoy said: "When is a man free? When he recognizes his burden", i.e. a graceful acceptance of circumstances that one cannot change. I have long proposed to have a course "Life Engineering" in schools teaching people metaprinciples of planning and enjoying life, this should definitely be one of the reading assignments (along with DFW's commencement speech, and many others). Yet ... yet ... while I truly believe that the thoughts expressed here are a major part of individual happiness, if a significant portion of the society behaves/acts according to these principles, I may not want to live in such a society. Unending hunger for new things, although it generally brings about personal unhappiness, takes society forward faster; there are many examples of such personal sacrifices in science, literature, music, e.g. how many great poets/writers do you know who have a happy family life (came to mind, since I recently read an essay by Alexandra Styron). On a different thread, (overgeneralizing, but only a bit) being content and acceptance is very common in "the East" and not just Buddhism's influence either, it is a common theme in many streams of Islamic thought. Something can be said about the effect of this in why these countries couldn't catch up with the pace of the "materialistic West" (yes, yes, there were a ton of other factors, but I think this may have been one of the major influences).
- einhverfr 14y agoThe Stoics were fond of saying "The inner part cannot be delivered into bondage." In other words, we are free when we decide to be. Nelson Mandela or Martin Luther King may have been more free while in jail than most people are on the outside as they go about their daily lives. The upshot is that society doesn't owe me (the inner part) freedom. Society can't give that to me. It can't take that away from me. Only I can do that.
- holri 14y agoNice read. Nothing new, just read the old Greek philosopher Epictetus. https://en.wikipedia.org/wiki/Epictetus https://en.wikipedia.org/wiki/Epictetus.