Comment by Mz | Hacker News Reader

Comment by Mz | Hacker News Reader

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If you read his comments, he has been battling cancer for 6 years. He has apparently had multiple surgeries. He is stopping the medication so he can have a "lucid ending" and spend some quality time with family and friends. He has been tortured by chemo. He plans on having jello as his last meal so he doesn't "mess" himself again.

I have cystic fibrosis. I've gotten off of 8 or so prescription drugs. The drug side effects were crippling. I was miserable and unemployable. My sister has been battling cancer for 11 years or more. I belong to email lists for people with CF. I've heard lots of stories like this. What conventional medicine does is pretty gruesome. I am getting well. I only wish I could more effectively share that information. BTDT, got the t-shirt and it saddens me that so many people are doomed to the same fate as Lucidending.

Edit: I would be seriously interested in knowing why this is being downvoted. There is something wrong with finding a better way and wishing to share it and thinking it sucks that other people are suffering so horribly?

I'm assuming you were downvoted for the vague swipe at "traditional medicine". It can be a touchy subject, because of the large number of crackpots, "vaccines cause autism", etc.

To be clear, I suspect no HN readers will claim medicine has all the answers - far from it. I suspect the reaction is more to the false dichotomy between "traditional medicine" and "some other kind of medicine" (with the implied hints of conspiracy or willful incompetence), rather than "current medical knowledge" and "future medical knowledge".

I took a look at your site, and it's obvious you've been through a lot, and thought about it more than most people - so please take my comment only in the context it's meant: as an attempt at an explanation why your one specific post was downvoted (and not an endorsement of the downvote).

Thank you for the feedback. I routinely struggle with how to talk about offering a better solution. Most folks get all up in arms, like it is an attack, and then just do not listen to what I am really trying to say. Sigh.

Have an upvote.

Very understandable - the problem is that it's tough, based on a brief post, to judge whether someone is an "alternative medicine" nut, with all the negative baggage that can imply, or someone with genuinely unique insights and experiences (hell, it's tough to judge in general, when dealing with things that are both emotional and not well understood).

It doesn't help that I frequently sound like Elle Woods (a la the scene in Legally Blonde that goes something like this: "He's gay. -- what kind of shoes do I have on?" ..."Uh, black?"..."See, he's gay.") But I don't have a good solution for that because I find that if I try to preemptively explain at length, that gets even worse reactions. :-/

"What conventional medicine does is pretty gruesome."

What are you talking about? Chances are you would've died a century ago because of the lack of effective treatments for CF. There are people who have dedicated their entire lives to researching the genetic mechanisms that lead to CF, not to mention the efforts being led to better understand those behind cancer.

I think you need to give conventional medicine some credit.

I do give conventional medicine some credit for keeping me alive. But if I continued pursuing conventional treatments, I would be a life-long legal drug addict and too ill to work. My life would suck in quite a lot of ways. Conventional medicine keeps people alive. But at quite a high cost, a cost that makes many people -- like Lucidending and, at one time, me -- feel that death would be preferable.

Anyway, probably not a good idea to do an AMAA if this is the reception my comments get here, where I am already a member and speak pretty openly about having gotten myself well.

Peace.

Sooo... you think Lucidending is sick from side effects, and thoughts of suicide will leave him once he stops taking these awful drugs?

Perhaps his or her situation is not as parallel to yours as you think. It's hard to say based on the little data there is, but perhaps all that is left for him or her is palliative care.

I said no such thing and I have no idea where you are getting that idea. Given that cancer has spread to his brain and the hell he has clearly been through, I understand his choice. I've been in a similar situation. However, it just so happens that my efforts to stop the pain -- which conventional drugs were not effectively treating -- began killing the underlying infection. I was really quite annoyed when I realized that because it meant I would live and the recovery would be both long and hard. That was about 10 years ago. The recovery has, in fact, been long and hard -- 10 years and counting and in recent months it has been common for me to throw up all day one day a week, so "hard" is an understatement. But unlike with conventional treatments -- where my doctor literally told me "People like you don't get well. Symptom management is the name of the game." -- what I am going through now actually is getting me well.

I wouldn't wish what I am going through on my worst enemy. But it beats the hell out of conventional treatments for my condition. It both involves less suffering and actually is getting me well. It is hands down a better experience and a better outcome.

Why doesn't conventional medicine recognize your form of treatment?

What exactly is your form of treatment anyway? Just letting the body do its thing?

Why doesn't conventional medicine recognize your form of treatment?

Because it was invented by some former homemaker with credentials like "I gave up my national merit scholarship and dropped out of college to go do the wife and mom thing for two decades. Now I'm a poverty stricken divorcee who has no clue how I am going to pay my electric bill this month before they cut my power off." Not exactly the kind of credentials that get you written up in JAMA.

What exactly is your form of treatment anyway?

There is a little info here about what I've done (though please note the site is woefully out of date as the last 10 months have been extremely intense):

http://healthgazelle.com/

Just letting the body do its thing?

Are you kidding? That leads to a gruesome death of the sort that motivates people to put up with the horrors of conventional medicine. Getting well has involved a great deal of research and work and other resources, mostly to redress 36 years of not getting appropriate treatment because I was diagnosed late in life.

The most succinct explanation I have come up with is on this page:

http://healthgazelle.com/rootsoftheproblem.shtml

Oh and have an upvote for asking good questions.

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