This site is officially retired.

This site has been on hiatus for nearly two years. I began updating some technical bits today but I don't really expect to resume posting new content.

She briefly was enthused that I was doing so well, said she would do "another paper" about CF and list me as the co-author and then abruptly changed her mind and began dragging me publicly on list. I left the list after that.

That's from a post called If you are part of the CF community which is a fairly polite piece about how unwelcome I was on CF lists. The woman in question had money and offered to let me get off the street by moving into a trailer or something she owned, then without any explanation or any apparent point of friction between us, she did a one-eighty and began dragging me on list.

She was a smoker whose son died at age seventeen from a deadly respiratory condition and she's heavily involved in the CF community and I don't believe she has any real interest in trying to find better answers for people alive today with CF. I believe her entire agenda is to play the grieving mom to the hilt to deny that her behavior in any way hastened his death.

And this defacto means her presence and ongoing active participation in the CF community is practically guaranteed to be actively harmful to people with CF. 

I would also bet money Celine Dion has heard of me and doesn't want to check me out and try to verify whether or not my ideas have any value.

I'm an extremely cynical person about some things.

My understanding is Celine Dion was part of a large probably Catholic family that was likely not especially educated or sophisticated and not financially well off and one of her sisters had Cystic Fibrosis which is insanely expensive if managed with conventional medical care. And when Celine Dion was twelve, they got her an agent and launched her singing career for the express purpose of paying for CF care for her sister.

At a minimum, Celine Dion was metaphorically whored out as a child to pay her sister's medical bills. And has become in the eyes of the public some kind of CF advocate or something.

She later married her agent who was much older than her and I have not ever seen any serious criticism of that. They made polite PR noises to address that fact.

I can easily imagine that he began forcing himself upon her when she was twelve, her Catholic family desperately needed money and didn't want to risk having doors closed on her in the music industry and also feared that other agents would be the same and decided marrying her off to her rapist somehow made that okay because it meant she didn't sleep around and only one man had her.

If anything remotely close to that scenario is accurate, then she was not only metaphorically whored out as a child, she may have been literally whored out as a child to pay for her sister's medical bills. 

Regardless of exactly how ugly it may have gotten, a twelve year old doesn't have legal right nor mental capacity to make adult decisions like "I shall launch a music career to pay her medical bills!" And really shouldn't have something like that put on their shoulders, no matter how talented they are.

So the way to bet is she probably secretly resents what was done to her while having all kinds of baggage and mixed feelings about her fame, wealth and career success. I am skeptical in the extreme that she is in any way an asset to the CF community.

Stephen Hawking lived a shockingly long time for his condition and no one ever suggested he must know something medically useful. It was treated like "luck" or random chance that a scientific genius happened to live an incredibly long time.

I wish I had taken a similar path in life. I have gotten nothing but hatred from people for trying to figure out how to cope more effectively with my condition and I regret writing about it. 

If you have CF or any serious medical condition, ask yourself Who do you trust? when looking at what the big name influencers and medical establishment are up to.

And be aware that those people are defacto gatekeepers and they can and do actively exclude people like ME and that destroys the credibility of small fries like me and shrinks the talent pool and body of knowledge and numbers of people working on the problem in question.

And you are likely complicit in that process when you decide a famous singer has authority to do that because her sister died of your condition or some PERFORMATIVELY eternally grieving mother who failed to keep her son alive has the right to do that rather than putting your brain in gear and thinking for yourself.

This site is officially retired. Me deciding to fix a few technical bits doesn't change that fact.