Because everybody wants to rule everybody

[brightrosefox]

You know... between strangers still insisting that they know better than me and my doctors about my medications and disorders and this new bizarre, creepy, fucked up conspiracy theory about actress Angelina Jolie, I think I need to put up all my psychic shields whenever I am on Facebook.

(Quick note: I once met Ms. Jolie with Mr. Pitt, very very briefly, in Washington DC, last year. I never told anyone, because who cares? She's just a person. Angelina was very beautiful, very sweet, very kind. Brad was compassionate and funny. And now, I am reading about conspiracy theories regarding her "glorifying expensive self-mutilation through the guise of pretending she wants to avoid getting cancer" and because her doctors scammed her with the "lie" that she was at high risk. And because she has the money to afford a double mastectomy and ovary removal, and because she has gone public after the first surgery, she obviously wants to spread her horrible ideas to poor mortal women who have those genes that might cause cancer in their futures, because she was lied to by this pharmaceutical company and thinks it will help women.
This conspiracy theory is so sickening that I cannot even talk to the friends who believe it. They believe it so deeply that nothing will change their minds, the same way they believe that all vaccines cause diseases and autism. I love these friends. I can still be friends with them. But I cannot speak to them about any of this. They make me want to cry and retch.)

In the meantime, the carisoprodol (Soma) and acetaminophen-codeine #3 have been working very, very well, making me highly relieved. Of course, since pharmaceuticals are poison according to some people, I am obviously destroying myself from the inside. But at least I feel better.
And then there are the supplements that are supposed to be quackery, false, hocus pocus. MSM, Hyaluronic Acid, Biotin, Devil's Claw, Alpha Lipoic Acid, Pau D'Arco, Chlorella, Shilajit, AShwagandha, Goji Berry. They are also making me feel better.

I'm so sorry to harp on all this again. But I cannot walk away from these verbal assaults. I keep trying. I just want people to leave me to my own health knowledge. I am leaving them to theirs.

Comments

[amigone.livejournal.com]

I hear ya. What happened to live and let live?

The ones that bother me the most are these prescriptive feminists who are saying that a real woman would have done x, y or z, but certainly not what Angelina did.

Angelina's article in the Times left a lot to be discussed - how can lower income families afford genetic testing if that's what they want to do, and surgery if necessary? What are the ethical considerations involved in not providing the option to all women? How can we support women who make the choice of prophylactic surgery? How can we support women who choose to not have surgery and wait and see what happens?

[oneonthefence.livejournal.com]

Angelina's article in the Times left a lot to be discussed - how can lower income families afford genetic testing if that's what they want to do, and surgery if necessary? What are the ethical considerations involved in not providing the option to all women? How can we support women who make the choice of prophylactic surgery? How can we support women who choose to not have surgery and wait and see what happens?

Those are my exact issues with Angelina's choice. Do I think that what she did was wrong? No. But not everyone has that luxury, and that needs to be addressed. If I had had the luxury to afford genetic testing, I wouldn't be this ill. I wouldn't have been on chemo. I wouldn't be having a total hysterectomy at 31. I'm a middle-class white woman who is very lucky, but very unlucky when it comes to health and healthcare. I cannot afford what Angelina can in any sense - most women cannot - and I think that that is an issue that should be discussed. And Angelina, who DOES do a lot of work for women and children, should absolutely know that we all don't have her advantages.

And I tend not to talk about my health on FB - and rarely so on LJ - because I don't want to hear what other people have to say. If the issue is major, sure. If it comes down to a new med or new treatment, nope. I'm going to do what I need to do, and I don't need other people to know what my "need to do" is. So I simply don't bother. I don't care what people think. And if there are people who are obnoxious, I use the convenient feature of "hide" or "block" on FB to stop the madness.

[brightlotusmoon.livejournal.com]

Precisely. She has a LOT of money and opportunity on her side. I don't want people scorning her for making her choice, but I want her to be clear that she was ABLE to AFFORD that genetic testing, the surgeries - she literally had all the ability to do whatever she wanted and needed. And many others just... don't. Can't. Not possible.

I would LOVE to see Angelina address the issue of her luxury versus other people's poverty in these cases. She seems to love being charitable and generous. Maybe she should sent up some kind of charity work to actually help lower income women get the kind of testing she got. She keeps saying that she "makes a stupid amount of money" and I know she gives a lot to charity. But she still has a LOT of money.
And if she really does make a "stupid amount of money" and she has now made it public and clear that she got these expensive genetic testings and elective prophylactic surgeries, then can she actually DO anything with it?
See, she and Brad like to travel all over the world with their family on high class luxury aircrafts, buy the kids extremely expensive clothing that they just keep growing out of. That's something that bothers me about her. The fact that she is so charitable, but she deliberately spends so, so, so much money on personal things for her children that don't need to cost so much, you know? She is still one of my favorite celebrities. But because she was born into wealth and is one of the wealthiest people in the country and happily tosses all that wealth at things that are not truly needed... I feel a little uncomfortable.
Does that make sense?

[oneonthefence.livejournal.com]

That does make sense. She shouldn't be scorned for making the choice that was right for HER, and a choice she could afford to make, but there is a responsibility that comes with that choice. She's a public figure, and a popular public figure, and she knows that news like this will create a stir. If so, then the issue of other women obtaining this kind of care, treatment, or surgery should be on her agenda. And maybe it is - I really don't know. But I'd like to, because she has used her wealth to help others, and I applaud that.

She does have a stupid amount of money - so I agree. What will she DO with it? She earned some of it, and she has the right to spend it as she sees fit, but her children don't need $2,000 outfits every single day, especially when, a month later, you see her in Africa spending time helping children who wear nothing because they HAVE nothing. So with wealth - and this is kind of an odd discussion, since we were talking about it on my Gatsby post - comes extreme responsibility, especially when you are a public figure. If I had her money but was an unknown individual, I couldn't imagine NOT using a lot of it to help others. That just seems like the "right" thing to do.

It's an odd mixture when it comes to her - she tosses money carelessly and also uses it wisely. And I think that's why this whole issue becomes awkward. She did it for her health, sure, I believe that. I don't doubt it. No conspiracies here. But if she DID do it for her health, and is so open about it, then she should consider others who aren't as lucky or as open, and should use that stupid wealth to at least guide them down a path that could save a lot of lives.

[karalianne.livejournal.com]

She did talk about how the testing is really expensive and made it clear (I thought, anyway) that she thought it was stupid that it wasn't cheaper.

Maybe she'll start some kind of a non-profit to fund the testing for people who can't otherwise afford it. I wonder if anyone has even suggested that to her in a forum where she's likely to actually see it herself? (Because goodness knows she probably won't see or try to sift through the billions of comments all over the internet right now.)

[amigone.livejournal.com]

I would like to see that happen. Even more, I'd like policy changes in the American health-care system that enable everyone who is at risk to be tested if they would like to be.

[ashbet]

Oh, damn -- the person who I'd been having a conversation about this with deleted the post on G+, taking my words with her. I should have copied them over into my e-mail, but I generally don't expect people to do that :/

Basically, I noted that Angelina did, at the end of the article, talk about the need for greater access and affordability of both testing and surgery, and that since she was telling her own personal story throughout most of it, I appreciated that she had taken the time to talk about the fact that her access was a luxury, and an unattainable one for many people. She also quoted some death statistics of women who die from breast cancer, many without treatment.

I appreciated that she DID take the time to do it in an article that was mostly a personal testimonial, and while I hope that she does use this as a springboard to fund medical scholarships for at-risk women (or something along those lines, perhaps regarding general women's preventative healthcare), I don't want to criticize her too harshly for not having done *more* in this one forum, in a piece that was primarily about her own decision to step forward and say, in the spotlight, that she had done this, and why.

I would love to see this become a cause that she supports financially, and I am glad that she is raising awareness among the general public (not just "breast cancer awareness," which most of us are "aware" of by now, but the BRCA1 and BRCA2 mutations, which many people who are not engaged with the medical community in some way are unaware of.)

One complicating factor is that currently, a single company owns the *patent* on those genes (you heard me right), and therefore has the sole monopoly on testing -- this is why the test is so expensive. It has a captive audience.

http://www.aclu.org/free-speech-technology-and-liberty-womens-rights/association-molecular-pathology-v-myriad-genetics

I am hoping that the Supreme Court rules in favor of the fairly common-sense idea that *natural human genes themselves* cannot be *patented*, and therefore the monopoly will be broken and more-affordable access to testing will become available. There are certainly institutions and companies who would like to be doing this research and testing right now, but they're being shut down by the patent.

(I am more ambiguous over whether created genes can be patented -- morally and ethically, I'd like to say 'no', but practically I do understand that they are the work product of researchers . . . but given the brutal iron fist of Monsanto, I don't think that it is in the common interest to allow patenting of ANY end-product genes, no matter the source.)

I hope that this is not a stressful or confrontational engagement, I'm just trying to share this info to point out that it's a more-complex issue than many people know, and the outcome of the Supreme Court case is crucial toward the future of women's health in general, and human health in particular.

-- A <3

[brightlotusmoon.livejournal.com]

Oh! That's right! Her essay DID mention how she had luxury and privilege and that the nation needed better greater access. Right!

You know, the conspiracy theorists mentioned that single company that owns the patent; they claimed that Jolie and the company were both in on it to try and make them more money. Sigh.

[ashbet]

. . . and now I see why they were making you want to vomit, because I *haven't* been reading Facebook, so I hadn't turned up that particular little gem.

Now I'm sick to my stomach, too. What kind of minds think UP stuff like that about someone who has just frankly told them about a difficult decision they had to make and a series of medical procedures they went through? Obviously, they're in it for the dollars? WHY??!?

Oh, that just makes me sick at heart. I suppose it's too much to hope for that she never has to hear about it :/

-- A <3

[brightlotusmoon.livejournal.com]

What really sickened me was that they had taken a picture of the People magazine cover about her story and changed all the text to how she was fooling the American public along with that company. And someone commented and said that Jolie's "deception" made THEM want to vomit.

And I just though, holy shit, they're really falling for this. They really believe this. I had commented on the post defending the actual truth, and nobody else who commented agreed with me. One even tried to convince me "Look up Unnecessary Hysterectomies and then tell me again why someone would do that to themselves for their health."
UGH.

[ashbet]

I'd really love to get my hands on the people who altered that image and give them an idea of what unnecessary surgery feels like. . . *snarls*

(Sorry. Wow. This is pushing my buttons HARDCORE -- I just can't picture myself behind the eyes of someone who would think that doing that is OKAY.)

And as the veteran of a Necessary Hysterectomy, I'll happily volunteer to give them an education in exactly what a woman has to go through to get one, even if she's done having kids by more than a decade and a half, even though she has an incurable genetic disorder that she (unknowingly) passed on to her child, even though they said "Don't get pregnant again, it might ACTUALLY kill you this time," but still wouldn't do the surgery, forcing me to go through years of unnecessary *hormones* and bleeding and pain (and doing a lot more damage to my body in the process than a timely surgery would have done) . . .

They have no idea, do they? And they seem to think that being a celebrity means that they don't have to treat Angelina like a Real Person, she's just a conveniently-shaped hook for them to hang their pet theories on.

I just -- I can't imagine being her, having made this really personal confession in an effort to help people and take some of the shame and silence away from this procedure, and to find out that people had warped it into *this* . . . it breaks my heart.

-- A :/

[brightlotusmoon.livejournal.com]

Not to sicken you more, but this website is like their bible in a way. It feels like a holistic tabloid to me.

http://www.naturalnews.com/040365_Angelina_Jolie_gene_patents_Supreme_Court_decision.html

[brightlotusmoon.livejournal.com]

Agreed. She is very wealthy. Most women are not. I'd love to see Angelina Jolie, a very charitable celebrity, at least make some effort to help figure out how to make the costs easier for people with lower income.