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Hunting Down My Son's Killer

matt.might.net

101–110 of 339 posts

Re: Hunting Down My Son's Killer

#101
post #75
post #49

Earlier quoted context omitted.

Agreed. Saying children are not worth it is an extreme position, but saying that life is pointless without children is perhaps even more extreme. It's like saying life is pointless without a wife, or without God.

The point of all life is to reproduce. It's one of the qualifications to be considered alive. So yeah, without children, life literally loses its meaning =)

The point of life is not to reproduce. Life simply is, it has no point. What exactly constitutes life is a vague human concept to begin with. You can choose to make your point in life to reproduce, but that does not make other choices of point in life any less valid or real.

BTW, that's a quite smug attitude, no doubt shared by many people, but I personally do not consider reproduction a worthy goal in life or indeed an accomplishment at all. Raising a child well, yes. Getting your sperm in an egg or getting sperm in your eggs, no. To further elevate the life goal of reproduction to the only worthy life goal for humankind to the point of considering people who do not reproduce to be lifeless borders on the ridiculous (not to mention disrespectful to people who can't have children, or for whom its hard (gay people, for example), or people who simply choose not to have children).

Re: Hunting Down My Son's Killer

#102

Colloidal silver will probably help as well.

Yes, if you want irreversible metal poisoning. If you want to try poisoning yourself with an old fashioned treatment, then mercury -- at one time a treatment for syphillis -- is probably a better bet if only because there are well established chelation protocols for getting it out of your system. In contrast, I can find no well established, proven means to remove silver. And I have tried, repeatedly, since colloidal silver is a popular alternative treatment in the CF community and I wish I had something better to offer them than the bad news they are likely making their situation worse in the long run.

Re: Hunting Down My Son's Killer

#103
post #19

First thoughts reading up on this pretty cool bit of detective work: Since this is a deficiency in production of Pngase F, I'm not sure a simple injection of Pngase F is going to work. I'd guess you'd need to target Pngase F into the ER to kick start the proper clean-up process, and the human form ( http://www.uniprot.org/uniprot/Q96IV0 ) is different to the recombinant form that you can get synthesised ( http://www.…

Wow! This is fascinating. Thank you so much for the pointers! Are you a grad student/postdoc/faculty?

[deleted]

Re: Hunting Down My Son's Killer

#105
post #31

Earlier quoted context omitted.

Sorry, not worth it at all. Years 1-10 - you will loose all your time - cleaning diapers, making the child eat, making it study, teaching it values - waking up at night - and doing a lot of things for it. Yes you'll see it learn, smile, grow up and you're genetically conditioned to like it. But you will not be able to play your games, go to your parties - read book or contemplate on life, or code without expecting in…

You either don't have kids or you're a psychopath. I'm leaning toward the former. Don't presume in your arrogance that you know quite a bit about something you have zero experience with. All your accomplishments are pointless without your child next to you. > Yes you'll see it learn, smile, grow up It? Nice. > But you will not be able to play your games, go to your parties - read book or contemplate on life, or code…

You're falling for the same fallacy that altrego99 is: your opinions and experiences are not the same as others.

For some people, having children is not worth it. For others, having children is.

Re: Hunting Down My Son's Killer

#106
post #75
post #49

Earlier quoted context omitted.

Agreed. Saying children are not worth it is an extreme position, but saying that life is pointless without children is perhaps even more extreme. It's like saying life is pointless without a wife, or without God.

The point of all life is to reproduce. It's one of the qualifications to be considered alive. So yeah, without children, life literally loses its meaning =)

1. The definition of life is fuzzy at best. Most of these definitions operate on populations, not individuals.

2. Population fitness can be optimized by many activities: food gathering, art, research, supporting peers, etc.

3. Meaning is a mental construct. Arguing over the absolute "point" of life is pointless, because the epiphenomena of "value" is a chemical cascade in our brains and can be coupled to almost anything. At best we deal in probabilistic generalizations, like "most people find having children rewarding". It's equally valid for someone to find deeply rewarding value in rebuilding engines, and many do.

More directly: I'm gay. I can't reproduce naturally. If you think that makes me less human, let alone less alive, kindly go fuck yourself.

Re: Hunting Down My Son's Killer

#107
post #63

As a father with a son with severe autism (not to suggest it's equivalent to Bertrand's condition), there is an important lesson here that might not be apparent at first read. Before you have children, understand that it's for the rest of your life. Really understand the impact. Your concerns are second, beyond anything you've ever understood. Marriage is about compromise. Children, however, afford no such privilege.…

Marriage is about compromise. Children, however, afford no such privilege. No, marriage is having one heck of a good time living your life with your spouse. Being a single parent is better than a bad marriage. And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period. Your spouse is the person you spend rest of your life (or at least decades, if you're luc…

> And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period.

Eye-opener for me. This is very true, and a harsh truth at that.

You made me finally understand what broke my parents' relationship. One of them focused on children, with "at all costs" mindset. And the cost was great indeed.

> and you won't even have much control over theirs for more than the 10-15 early years.

That much just as well.

Re: Hunting Down My Son's Killer

#108

It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet…

This comment rings too true. Most doctors quickly realize that they're outgunned when my wife and I start talking about our son. We have a lot more luck with PhDs than MDs.

Part of the problem is that diagnoses and treatments are expanding faster than the ability of humans to memorize and learn about all of them. IIRC there are close to 14,000 diagnoses—just diagnoses!—that we know about. Combine that with the numerous drugs, treatments, and other changes, and it quickly becomes apparent why people with unusual conditions are better off making themselves experts than in relying solely on the expertise of doctors who aren't specialists in whatever they have.

EDIT: Here's the article I was referencing: http://www.newyorker.com/online/blogs/newsdesk/2010/06/gawan... :

Half a century ago, medicine was neither costly nor effective. Since then, however, science has combatted our ignorance. It has enumerated and identified, according to the international disease-classification system, more than 13,600 diagnoses—13,600 different ways our bodies can fail. And for each one we’ve discovered beneficial remedies—remedies that can reduce suffering, extend lives, and sometimes stop a disease altogether. But those remedies now include more than six thousand drugs and four thousand medical and surgical procedures. Our job in medicine is to make sure that all of this capability is deployed, town by town, in the right way at the right time, without harm or waste of resources, for every person alive. And we’re struggling. There is no industry in the world with 13,600 different service lines to deliver.

Note that this was published in 2010. By now those numbers have probably grown.

I've also had personal experience with the doctor-doesn't-know problem: I had an unusual disease seven years ago, and the first specialist I saw said that she Googled it a few hours prior. Her partner gave me completely wrong information; he didn't even know how to treat what I had. Fortunately my family found a research center where some of the major researchers in the field worked, and the treatment I ultimately got had been published a few months before I started (it had become standard two or so years prior). If you're curious about specifics, send me an e-mail—it's in my profile.

Re: Hunting Down My Son's Killer

#109
post #63

As a father with a son with severe autism (not to suggest it's equivalent to Bertrand's condition), there is an important lesson here that might not be apparent at first read. Before you have children, understand that it's for the rest of your life. Really understand the impact. Your concerns are second, beyond anything you've ever understood. Marriage is about compromise. Children, however, afford no such privilege.…

Marriage is about compromise. Children, however, afford no such privilege. No, marriage is having one heck of a good time living your life with your spouse. Being a single parent is better than a bad marriage. And marriage can only be good if the parents know and acknowledge that they together go first, kids come second. Period. Your spouse is the person you spend rest of your life (or at least decades, if you're luc…

I don't mean to be rude, but I think your comment illustrates the attitude prevalent in countries with 50% marriage failure rates. Your ideal is simply unsustainable and impossible.

First: Are you married now (or have you been) and do you have kids? I'll assume you are married/committed but I'm not sure you are a parent, given your views. This is a tremendously important point to help frame this discussion. I fear you probably won't understand my points at all with out first hand experience.

What you are saying isn't technically wrong, but it requires precise compromise in order to be successful. That's exactly what jasonlotito is saying: You can't get what you want all the time, especially with your partner, most certainly with your children.

You and your partner need to understand, respect, and tolerate each other, first and foremost. Some people are simply incapable of doing this, period. Some people conflate this with making their life completely about the other person. Both of these people will be miserable regardless. For the rest of us though, simply understanding that statement means the marriage is a compromise - sometimes you get your way and your partner tolerates, sometimes you tolerate and your partner gets to do their thing, most often you are both getting your ways, as they are the same, but sometimes both of you are tolerating, for the good of the family/marriage.

Of course, with children, that last point becomes a vast majority of your life. Kids are the centre of their worlds and don't really understand how to be anything else. It takes literally years to impact the knowledge that life is better when they look outwards towards others into their little heads. Until then, you and your partner will do a lot of tolerating in your lives. How well you can do this (and when not to) will pretty much define how successful a parent you will be. It's an approach governed by the exact opposite thoughts that you are presenting however: Child first, couple second, self last.

Be clear than I'm not suggesting your entire life should be one of self-sacrifice, That doesn't work either. But it must be the last of your concerns 90% of the time if you are to make raising kids and marriage - especially marriage - work. Ensure the kids are alright (not necessarily that they get their way all the time), ensure your spouse is alright (happy wife, happy life after all) and ensure you are alright in that order, and you have a winning formula.

Looking out for yourself first is a guaranteed path to conflict. It's very rare that you can do this and remain in sync with other people, even best friends and spouses aren't going to want to do the same things all the time. Your children will never want to do the same things as you in any consistent fashion, which is way most happy family spend time in parks during the day as opposed to bars late at night.

Re: Hunting Down My Son's Killer

#110

Thanks so much for the fascinating and emotionally stirring article. I will definitely be passing this on to others I know. The thing I kept thinking during the article is, "Is there something that I, as a programmer, can do to help people like Bertrand?" Is there some way that we programmers could use our talent to augment or advance existing technology in this area? I realize that the science involved here is non-t…

Computational biology is a field with much room to grow. Finding a mutation is just the start of the journey for someone like Bertrand. Once you find the mutation, you have to figure out what the mutant gene does versus the normal gene. Duke had to work with a lab, culturing cells from my son and poking at them to figure this part out. If we were better at predicting the structure of proteins from the DNA that encode…

Interesting, now that you've mentioned protein folding, even though I've very vague understanding of it, I instantly recalled donating some cycles to http://folding.stanford.edu

Hope that helped a little.

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