One Sick Mother

A Question for the NRA Supporters.

As everyone knows, there was another school shooting here in the States last week. This one was particularly bad, as 20 first-graders were killed.

I don't know if it is due to this fact, or the rise in social media; -or maybe a bit of both, but the gun control argument has really gotten intense this time. 

And the NRA has shut down it's facebook page and kept completely schtum. Apparently, this is in keeping with their policy.  

But I have things I want to say to the leadership and members of the NRA. I have questions I want to ask. I'm not the only one, I know.  And as I can't ask them on their turf, I will ask on mine. This isn't restricted to NRA members, of course. Any pro-gunner can feel free to jump in with answers.

I want to say first,  that I do respect your second amendment right to be available as an armed militia. 

(or maybe this image was more what you had in mind?)

So you can use your weapons to rise up against an unjust Government.

(Yep. I can totally see how a handgun, rifle and especially a semi-automatic would have helped out here. Um-hmm.)

Or maybe you just want to protect your home and property, as a Facebook friend of mine posted (direct cut & paste here -no changes from me):

"Oh dear! Defending myself or my family from intruders is not a DEADLY ACT! What is wrong with some of you people that are against guns? They can PROTECT ALSO!!!

Anybody else I guess that does not RESPECT my right to defend myself or my family with a use of A gun for protection and wants to DELETE me because of that ....Feel free to do so...It will not hurt my feelings... Because someone DELETED ME because of my right to PROTECT MY FAMILY.... I thought in debates LOL there was suppose to be a RESPECT ISSUE...Guess not!"

(So it's a matter of respect, apparently. OK.)

 

But I have a serious question for the "pro-gunners" out there: If I told you that in order to save the life of a child, six years old; you needed to make some concessions. Go think of a six-year old you know or knew. Think of his or her friends.  Now to save that child, would you be willing to:

• Place trigger locks on your guns?
• Use a gun safe in your home?
• Give up access to semi-automatic weapons?
• ...or high-capacity ammo cartdriges?
• Take a gun safety test?
• Carry a permit?
• Get re-certified every few years? Would you do that?
• Submit every adult in the household to a full background check?
• What about a mental health screening for you and every adult living in your house (repeated every few years)?
• How's about a 6-month wait period?  Would you be up for that? (No? how about 3 months?)

If you answered "no" to any of those questions, think back on that six year old and ask yourself what is so important about that point you are unwilling to concede, that it is worth their life?

And now put yourself in Nancy Lanza's shoes and know that the six-year-old in her case was NOT imaginary. Several six year olds died on Friday, as did several others, including Nancy herself and her beloved son. 

Nancy was a pro-gunner, I am sure. However if she were around to express an opinion today, I wonder what she would recommend? And please don't say that it will never happen to you; you're trained and take all precautions. I'm sure that's what Nancy would have said.

But the unthinkable happened to her.

And the problem with the unthinkable: you can't expect it, can't plan for it, you can't think it! So you have to take precautions against it.  Just in case.

Because it may be your right to own a gun, but it is also everyone else's right to not get shot, unless they happen to be invading your home at the time, of course.

We need to pass a test, carry a license and insurance in order to drive a car, because cars can cause damage and take lives if used improperly. Why don't we have the same basic precautions on guns, which are much more dangerous in the wrong hands?

And on the "We need more guns to protect outselves against guns" argument, I will say this. If I have a gun and I attack you, and you have your gun to defend yourself, what are the chances that at least one of us is getting shot? Pretty darn high.

However, if I don't have a gun and I attack you, and you don't have a gun to defend yourself, what are the chances of us getting shot then?

ZERO.

There might be angry words and a blow or two. We may hate each other forever and curse when we see each other. But we will both still be alive to do it.  

 And despite the fight we just had, I'd rather see you alive.

I Don't Get The Threat?

A dear friend I have known for years realized -relatively late in her life- that she had been going about some things wrong. For most of her adult life, she had been playing for the wrong team. 

My friend finally came to terms with the fact that she is gay.

I was privileged to have been included in the conversation she had about this with a few close friends. I saw her conflict and wonder. I  was around while she embarked on her first relationship with another woman. I heard about the trip to NYC when she went to gay clubs, where she was celebrated and wooed. I also heard the fears: How to tell friends, parents, family? How would they react? What about my church (friend is deeply religious)? ...school, work, kids' friends, other parents...?

Embracing your difference is hard.

I saw how several of her friends just melted away. Or called her names and stormed away. Or berated her, but stayed (why?); their friendship permanently altered.

And my heart broke for her. My friend -Let's call her LeAnn, is still the same person. Exactly the same. She is just more LeAnn now. Freer. More relaxed. More herself. Happier than I have ever seen her. I am so amazed and glad to see this change in her. 

...but some of the people in her life, including some of her family and former "friends", can't be happy for her. They can't seem to accept LeAnn for who she is (and always was). They want her to go back to being the self-deluded and unhappy individual she had been for years. 

But you can't un-ring that particular bell. It's just not this easy -->

I can't quite figure out if these people don't like change, don't like happy, or don't like gay?

I can certainly understand that some people -especially older family members- will fear for LeAnn and not want to see her subjected to bigotry and hate. As a parent of special-needs children, I understand that fear only too well. But I honestly don't get the rest.

To an extent, I can understand not liking change, but I totally DON'T get not liking "happy" or gay (Ohai Irony! I see you sneaking in there). Why should straight people care?

I mean really. What's it to us?

Watching LeAnn's experience as it unfolded, got me thinking a lot about friends and friendships. I wondered how many of my friends would stick around if I suddenly "switched teams"? So I posted this on my Facebook page:

OneSIckMother idly wonders how many of you guys would unfriend me if I suddenly announced that I'm a lesbian?

I got 70 comments, some questioning if I was serious? (Still a straight woman TYVM, but it's a serious question), most very positive along the lines of "you're stuck with me. Sorry". It was nice to receive all that support and positive reinforcement, and it opened some interesting dialog. But of course, the ones who would probably actually disown me, wouldn't come out publicly and say it. They would quietly slip away  (fun fact: Since I posted that last week, two friends have quietly slipped away. Yes. I was counting!).  Who wants to publicly admit to being a gay-hater? It's not politically correct. Not hip or cool. And yet many people are secret gay-haters.

Maybe "gay-hater" is too strong a term? Maybe "gay-fearer" or "homophobe" is more correct? The end result is much the same, though. Therefore, I don't really distinguish. "Gay-hater" is my preferred term in keeping with my grandfather's tradition of calling a spade a "fuckin shovel". And it has a certain ring to it.

I would really love to have an intelligent (<-note keyword) conversation with one or a group of these anti-gay people. I really want to know what their problem is? I understand that some (few) people may have been assaulted when young -and I kind-of get that. Except there are other people who were assaulted by members of the opposite sex, who don't grow to hate all members of that gender. And I don't think the vast majority of gay-haters can claim their bigotry is based on an experience of that kind. They seem to have more of an inexplicable ...thing, which can't be understood by those of us outsiders (or maybe even themselves). Like arachnaphobia, I guess.   If gay hating is based on a clinical fear, I could probably understand and comiserate a little more, I guess.

However, I checked to see if "Homophobia" is, or ever was a clinical term or indeed a valid diagnosis?

Nope.

It's not a clinically recognised "thing" and never was. 

However "Homosexuality" was listed as a mental disorder as recently as the 1960s.

Backwards, much?

So the haters don't get to hide behind a diagnosis. 

If gay hating isn't a diagnosis, what is the specific problem some people seem to hold so deeply? I have heard some of the arguments

"What they DO... together. That is so disgusting"

To which I say: It's also none of your fucking business what consenting adults do in private. And it might very much surprise you to learn what some very middle-class and upstanding straight citizens do in the privacy of their own bedrooms (or brothels).

"I'm just afraid they'll be interested in ME" 

To which I say: "Get over yourself. You're not that fuckin special."

...Or my personal favorite: 

The religion card in its various forms. Especially the "Christian" card and the "It says in the BIBLE..." argument.

No. No. NO!

That's a red herring and I'm not buying it. Do you hear me? NOT BUYING IT!

You don't get to hide your hatred behind a religious excuse. Let's stop that shit right now. I know there is Leviticus 20:13, but it concludes that gays should be put to death. You don't get to pick and choose. If you don't hold with the whole thing, you can't hold with any of it. And if you DO hold with that entire verse of Leviticus, you have to hold with the entire chapter. Like 20:9 "Any person who curseth his mother or father, must be killed."  Well that's most of us wiped out before we even finish adolescence!

And Don't EVEN get me started on chapter 19! Don't wear clothing made of mixed fabric? Don't shave or cut your hair (then why are so many of the men who quote 20:13 clean shaven)? Picking and choosing one's beliefs through that one book is inconsistent at best, hippocritical at worst. 

 

 

...and FYI: the term "homosexual" was never originally in the Bible. It was added in the 1800s. 

So I am not buying the 'religion' card. I honestly see it as a convenient excuse for hatred. Put it aside and have the gumption to stand on your own true convictions.

 

So if gay hating is not a diagnosis, it's none of your business what adults do together in private, and we remove the "religion" series of excuses, what's left? Why do gay-haters feel so threatened by gay people? I really want to know, and LeAnn does too. The haters owe me nothing, but I think LeAnn deserves an explanation for the hate.

At least give her that much.

10 Myths Regarding Autistic Spectrum Kids

 Recently. I was clearing out my inbox, which has stuff in there going back to 2002 (if I haven't responded by now, well, I guess I am never going to!) and I found some hilarious e-mails and exchanges I had in relation to a little fun exercise I ran years ago across some special needs message boards, which were entitled "The Golden Crock Awards" . We accepted nominations from parents of the biggest "crock" they were handed by a professional regarding the evaluation or diagnosis of their special needs child. There were a few doozies in there. Some I found/remembered:

• "He can't have Sensory Integration Dysfunction because he eats potato chips"
   
• "He can't have Autism because he makes eye contact"
   
  
• "She can't be autistic because she smiled at me"
    
• "He can't be autistic because he is affectionate towards you"

Now, all of these comments were made by professionals: psychologists, teachers, therapists and the like. I got to thinking if the professionals are still saying (untrue) stuff like that, there still must be a lot of myths floating out in the general population. So this is my little attempt to bust a few of them. There are a few  "submyths" in there that I thought merited special mention, too.

I know there are a lot of blogs and articles out there about the "myths of Autism" and I read a few of them. I don't want to duplicate anyone's work. The problem I have with most of these other articles is that they talk about this entity "Autism" almost as if it were some kind of entity in its own right.

It isn't. 

When I use the term "ASD Kid" herein, I am referring to children with an Autistic Spectrum Disorder. This could include kids with the diagnosis of Autism, Autistic Spectrum Disorder, Autistic Disorder,  PDD-NOS (AKA Atypical Autism), Asperger's Syndrome and High-functioning Autism. I am not sure if this list also applies to Rhetts Syndrome or CDD because I don't have enough direct experience of those disorders, even though they are also Autistic Spectrum Disorders.

Myth 1: ASD kids are Loners

Submyths:

ASD Kids Don't Make Friends

ASD Kids Can't Make Friends

ASD Kids Don't WANT Friends

These myths seem all to be predicated on a single incorrect assumption: That an Autistic spectrum disorder only impacts introverts (and is then compounded by another assumption that introverts don't want or need friends). Extroverts seemingly get off scot free in this myth. You know, if that were true, we could shortcut a lot of the research and just concentrate on the differences between the introvert and extrovert personality. That way, we would probably have Autism solved in about three years.

But Autism does not discriminate based on personality. Extroverts are just as likely to be impacted. The difference between introverted and extroverted ASD kids is that the extroverted kids will attempt way more social interaction. They just usually go about it all wrong!  Joe's preferred method of initiating play when he was a non-verbal little tyke was to charge up to an unsuspecting kid and bodyslam him/her.  Needless to say, this method -while an excellent way of gaining someone's attention (and their Moms!),  was a poor way to initiate positive interaction. Joe needed to be taught how to approach kids and talk to them. It was not something he inherently understood, as most regular kids do.

The very sad thing about this series of myths is that they can become self-fulfilling. ASD kids can become frustrated after repeatedly failing to connect or bond with other kids. Or they can become sensitive to other kids' remarks about them being "weird" (etc. etc. ad nauseum). Because let's face it: All kids can say mean things, whether intended or inadvertent, and eventually the ASD kid just won't be able to take the rejection and pain, and will opt to stay indoors and play videogames.

Another thing that can happen -especially to the introverted ASD kids, is that they realize a little later in their childhood that they actually DO want friends, but starting late, they have difficulty breaking into the interactions, social circles and cliques that have developed amongst their peers while they were off in AutismLand.

Despite all this, many kids with an ASD can and do make friends.  They often tend to have one or two close friends rather than a large circle of friends, and they generally tend to prefer one-on-one or small group activities as opposed to large group activities.  I am generalizing here (which I hate); there may well be the social butterfly Autie out there who has lots of friends and thrives in large groups!

 

Myth 2. ASD kids have no sense of humor

Submyth: ASD Kids Don't Smile or Don't Really Laugh.

Yeah, right! The kid on the right,who is trying to "sneakily" smoosh the icecream into his sister's face, is autistic.

Many ASDs kid do have a good sense of humor and often respond very well to humor from others. Many of these kids will have quite a dry sense of humor, and while they may not get certain jokes, they can floor you with some other forms of wit: including sarcasm! (I know! Free mythbuster! Some ASD kids understand and use sarcasm!)

ASD kids do laugh and smile. They just may not laugh or smile at you.

Get over it.

Myth 3. ASD Kids Can't/Don't do Sports

While many kids with ASD can have problem with muscle tone and hand/eye coordination, some can be quite sporty and coordinated. Remember Jason McElwain, that kid who scored all those points in basketball?

Of course, a lot depends on the sport and the support of the team and coaches, but having Autism does not mean one is automatically excluded from all sports, ever.

 

Myth 4. All ASD kids Have Special or Amazing Talents (like Rainman)

Submyth: Aspie Kids are "Little Professors"

Wrong on both counts. It is perfectly normal and acceptable to have Autism and NOT have any super savant skills. Yes, some ASD kids have great memories and splinter skills at directions or math. However the estimated number of true Autistic Savants is very small indeed. it is thought that there are approximately TEN (10) individuals in the entire world who are are true savants.

Some ASD kids are very smart, and some will appear very smart when talking about their special interest, but in truth, many ASD kids simply have a regular IQ with a hearty side of Autism.

And some are mentally retarded.

And while many Aspies do use language a little differently than the general population and many will talk your ear off about all sorts of things from lightbulbs to the Milky Way, Aspie kids are kids first and Aspies second. It is a mistake to forget this.

Myth 5. ASD kids Have No Empathy

This myth is bullshit, pure and simple. ASD kids can and do have empathy. A lot of the time their problem lies in determining when empathy is appropriate, because they have such a hard time reading facial expressions and body language. So while an Autie may understand a very clear signal, like crying, he may misunderstand a more subtle (to him) signal, such as a grimace of pain. Once they gain some skills with regard to reading people (or have a situation explained to them), some ASD kids can become remarkably empathetic. I talk a little bit more about this here.

Myth 6. ASD Kids are a Result of Bad Parenting

More bullshit. Many parents of ASD kids also have neurotypical children. So how can that be explained?  Both parents just spontanously decided to use a completely different parenting style on the other kid(s) Think about it. That theory just makes no sense.

Myth 7. ASD kids are Not Affectionate.

Not true, although how they show affection can vary hugely:  Contrary to the sterotypes, some ASD kids can be huggy and kissy.

 

However, most will relate to people differently and will show their affection in ways that are not easily understandable to a neurotypical... anyone.

For example, many ASD kids may relate to people through objects. An ASD child may show you huge favor or affection by giving you something special (to him) or by allowing you to hold or stroke their favorite thing. You just may not appreciate the gesture (which in turn might insult the child, and we are back to the self-fulfilling thing again).

Myth 8. All ASD Kids are Touch Adverse

It is true that some (many) Auties are touch adverse, because of tactile defensiveness.

Yet even the touch adverse kids may like certain kinds of touch. Grace used to jump out of her skin if you gently touched her or even if you brushed against her, but she loved to be held tightly or massaged. As Temple Grandin said "light touch is alerting, deep touch is soothing".

 

Myth 9. ASD kids Don't (Can't) Tell Lies

Most can and will. However, they usually stink at it.

 

Myth 10: ASD Kids Don't (Can't) Make Eye Contact

That whole "no eye contact=autism" equation is a TOTAL myth. For starters, bad eye contact is not exclusive to Autism and is not a hallmark of the condition. I don't have Autism and I had a problem with eye contact as a kid. Heck, I didn't learn eye contact until a Dublin street musician taught me the value of it one summer afternoon when I was 19 (...and yes (Rob) That was all he taught me). I never saw him again. I don't even know his name -but I am forever grateful to him.

And while it is true that many ASD kids can have problems with eye contact, many can develop the skill (or learn to fake it) with training or with people they trust.

And there are some ASD kids who can and do make great eye contact with almost anyone. So don't let me hear anyone say "He can't be autistic because he makes eye contact". It is not a hard and fast rule.

oh and ...Hello?

 

I remind you again: If you've met one kid with Autism, you've met one kid with Autism.

 

Bonus myth: You Can Tell if a Kid Has Autism (or Not) Just by Looking

If you go back at the photographs in this post, -just the pictures, not the text (because the text will tell you). Can you tell just by looking, which kid or kids have Autism and which don't?

Be honest: You can't.That's why it is called a hidden disability.

So the next time you see a "spoiled" and screaming child while out-and-about, please remember -before you judge- that the child could have a hidden disability such as Autism.

Please Note: All text and images in this post are copyright (c) One Sick Mother, 2001-2010 and may not be distributed or re-used without express written permission from the author.

Scamming in The Name Of Religion

UPDATE:  The church did apparently return (some of?) the funds after the story broke (and started to go viral). It goes to show what can be accomplished through advocacy and word of ...computer.

But I'm not changing a word of my original piece, which follows (we may choose to forgive, but never forget):

 

Most of the scam artists I write about are selling "medical" products and they profit off peoples' pain and desperation.  The worst of these -by far, is Gordon's Herbal Research Center, which is supposedly based in New Zealand, but is actually based in Pakistan. 

Today I heard about a new scammer, who is really  
based in New Zealand this time (Napier). This guy is every bit as despicable as the snake oil vendors. His name is Bruce Collingwood. Bruce purports to be a pastor, and is based at this ...  um "church".  Here is Brucey with his wife, looking buff, wearing what looks like a sparkly-accented shirt and a fetching medallion.

You can find the "church's"  website here.  Note how they mention their new building, right on the home page.

So somewhere along the line Brucey came in contact with a gentleman by the name of Whetu Abraham, a man who suffered a serious accident several years ago, leaving him with brain damage and in a wheelchair. Brucey Baby and/or some of his congregation used to visit Mr Abraham in the nursing home where he lives, soliciting donations, leading Mr Abraham to believe that if he didn't give generously, he wouldn't go to Heaven.  It so happened that Mr. Abraham had a nest egg of about $20,000 dollars.

He doesn't have it any more.

Yes, Mr Arbaham's money somehow all made it to the "church" of Bruce Collingwood, "freely" given by the poor man under threat of Hell.

Now he can't even afford to have his teeth fixed, while the "church" got itself a new building.

 

...and -funnily enough- they don't come to  visit him anymore.

Except once this story broke, Brucey suddenly stopped by with a disclaimer for Mr Abraham to sign, and loomed angrily over the poor man's wheelchair until he had to be removed from the premises by staff (I can't make this shit up).

Brucey is a nice guy, huh?      

Here he is, sitting in what looks like a new leather comfy chair, wearing what looks like a silk shirt, while the man who probably helped PAY for those things can't even afford dental care.

...all in the name of "God". 

Really?  Is that how Jesus would behave?

Please let Brucey Baby know what you think of him. His contact details are below.

"The Oasis" 15 Owen Street

Napier 4110
New Zealand

Pastor: Bruce Collingwood
Phone: (06) 835 6480
Fax: (06) 835 6485
Mobile: 027 630 7738
Email: [email protected]

I was going to contact the head of the Elim Movement, to which this "church" belongs, and ask if Brucey's behaviour is in keeping with their philosophies.  And then I saw a picture of their brand new headquarters, opened in 2009.

 

...nevermind.  I think I probably know the answer.

I should give a shoutout to the nursing home staff, who seem to have really tried to look out for Mr Abraham's interests. Too often we hear bad things about nursing homes, but there are many good facilities out there and a very great many caring and dedicated staff.

They are much needed.

My Blog, My Rules

I leave the comments open on this blog; no moderation prior to posting and I do encourage people to comment honestly.  I often get comments that are blatant advertising (one good thing about Typepad: there is EXCELLENT spam filtering) or that are not blatant, but contain links back to sales sites. I delete these as soon as I find them. OSM has a very strict policy against advertising and endorsements (OK. I just endorsed TypePad, but it is not claiming to cure your Granuloma Annulaire). This policy has lost me some income opportunities, but I would rather maintain the integrity of the work and research than gain an extra few bucks per month. 

And I really can't endorse stuff I don't use anyway

In the past two months or so, I have noticed two interesting trends:

1. I started getting comments that reflected positively on the scammers. One or two people on a post might claim that a scam product had worked and their illness was cured.
2. Several of the scammers have disappeared from Google; -both from the advertising stream and the search engine (Let this be a lesson to scammers that they should pay their bills)

The "positive feedback" received has all been for those disappeared scammers!  Co-incidence?  I suspect not. Some of my posts have been up for almost a year; -not a single positive comment. And then all of a sudden, I start getting "well it worked for me/my aunt/my boyfriend/my cat" comments on the scam posts.  I am good at spotting patterns and this looks like a pattern -not a random happening- to me.

I am pretty sure these events ARE connected. I am not sure if the scammers are posing as legitimate people to post endorsements on this site, or if they were asking legitimate people to do so.  My radar was triggered and my guard went up. However, on the basis of fairness, I decided to give these comments the benefit of the doubt and to keep the conversation two-sided. But I also decided to keep an eye on the situation.

Then last Thursday, I received the first of 10 ranty and barely coherent (comments from a person who claimed that one of the products was a miracle cure and I was somehow (singlehandedly):

• Condemning this person to a life of pain (like I had somehow given them the disease)
• Policing the Internet (Superhuman powers: I has them, apparently)
• Influencing people to steal the product from their mail; that misguided individuals -presumably in the Postal Service thought they could "protect" the Angry Commenter by taking their Scamaton before it ever reached the house. (Ha! I would LOVE to believe my charisma is so strong that I can make people I have never even met commit a federal crime!)

The commenter also made several arguments that had NOT been raised in that post (and I saw no evidence that the person had viewed any of the OTHER posts on scams), which raised a big red flag with me, and then they degenerated into abuse towards me; threatening to slap me, and wishing a chronic illness on me so "I would know how it feels" (Too late! Times three!). Clearly they have never actually read this blog.

I initially left some of their initial posts up, thinking it was maybe OK to air the other side of the argument.  I do like to be fair and keep an open mind, and I have on occasion (OK once) gone after an organization, intending to flay them alive (figuratively, of course) and have discovered in my research that the are not half bad.

So I slept on it.

And slept on it some more.

And then today, when I was thinking about it. I realized that these comments are fucking endorsements! If I impose an anti-endorsement policy on myself, why should I break it for random commenters, who are probably in cahoots with the scammers?

So I went through and deleted all the positive comments about the scam products received in the past two months. Which was all of them. The scammers clearly didn't care about what was on here until they were in some kind of trouble with Google (I have been watching the search engine trends).

Now some people may say this is unfair of me, and I am not presenting a balanced viewpoint. If someone was helped by one of the products, why NOT let them post here? I have to say I agreed with that until today, but when Abusive McRantyPants started in on me. I thought fuckit.  This is MY site. I make the rules. And if someone wants to (respectfully) contradict me,they can do it here. If someone wants to lavish praise on a scam company or scam product, they can.

But not here.

Find somewhere else to do it, because this site does not support endorsements.

Or abuse.

If you don't like that, you can leave.

Why, Indeed?

Recently, I was talking to someone who has read a lot of this blog, particularly  the pieces I wrote on herbal remedy scams. This person knew that these pieces (most of which are listed in the top left column of this blog, if you are curious) involved hundreds of hours of research and documentation and they asked me the simple question:

Why?

Why put so much effort into this?  It wasn't my job, I didn't get paid and -apart from the people who commented or e-mailed to thank me (and some to challenge me)- I got no real recognition for this effort.

Funny, but "why" It isn't an easy question to answer.  I could list plenty of things I didn't want out of this work: I didn't want payment. I didn't want thanks (although it is nice to receive), I didn't want recognition. I guess I wanted...

...Justice. 

That's probably the best single word for it, but it still doesn't really explain it all, because justice for whom? And how does putting this stuff on the Internet achieve that aim?

Hmmm.  I was at a rare loss for words.

I have been pondering these meaty issues a lot; -questioning my own motivations and the workings of my own mind, which are not always very obvious to me (and I pity my friends). After a day or two,  this poem I learned in high school came meandering into my head. The first line did, anyway:

"Since the wise men have not spoken, I speak that am only a fool"

That's sort of it. I had to speak because nobody else could or would.  I dug up the rest of the poem, to see if it fit, too. it is below. I think it is kinda-sorta-not-really suitable to my situation. At the time of writing, Pearse was in prison facing execution for his role as a leader of the 1916 Easter Rising in Ireland, when the Irish equivalent of the Declaration of Independence was um... declared. Actually It was proclaimed.  By Pádraig Pearse himself, if you don't mind. Not sure the difference, exactly but there you go. If he was still around, he could probably tell me. And correct my punctuation.

In this poem, Pearse is defending a lifetime spent as a campaigner and a rebel and his decision to lead a rising against the British. And here I am trying to justify a bit of research. Our situations aren't very comparable, really. Yet I can definitely identify with Pearse's idealism and willingness to speak out against perceived wrong.

The Fool

By Pádraig Pearse

Since the wise men have not spoken, I speak that am only a fool;
A fool that hath loved his folly,
Yea, more than the wise men their books or their counting houses or their quiet homes,
Or their fame in men's mouths;
A fool that in all his days hath done never a prudent thing,
Never hath counted the cost, nor recked if another reaped
The fruit of his mighty sowing, content to scatter the seed;
A fool that is unrepentant, and that soon at the end of all
Shall laugh in his lonely heart as the ripe ears fall to the reaping-hooks
And the poor are filled that were empty,
Tho' he go hungry.
I have squandered the splendid years that the Lord God gave to my youth
In attempting impossible things, deeming them alone worth the toil.

Was it folly or grace? Not men shall judge me, but God.
I have squandered the splendid years:
Lord, if I had the years I would squander them over again,
Aye, fling them from me !
For this I have heard in my heart, that a man shall scatter, not hoard,
Shall do the deed of to-day, nor take thought of to-morrow's teen,
Shall not bargain or huxter with God ; or was it a jest of Christ's
And is this my sin before men, to have taken Him at His word?
The lawyers have sat in council, the men with the keen, long faces,
And said, `This man is a fool,' and others have said, `He blasphemeth;'
And the wise have pitied the fool that hath striven to give a life
In the world of time and space among the bulks of actual things,
To a dream that was dreamed in the heart, and that only the heart could hold.

O wise men, riddle me this: what if the dream come true?
What if the dream come true? and if millions unborn shall dwell
In the house that I shaped in my heart, the noble house of my thought?
Lord, I have staked my soul, I have staked the lives of my kin
On the truth of Thy dreadful word. Do not remember my failures,
But remember this my faith
And so I speak.
Yea, ere my hot youth pass, I speak to my people and say:
Ye shall be foolish as I; ye shall scatter, not save;
Ye shall venture your all, lest ye lose what is more than all;
Ye shall call for a miracle, taking Christ at His word.
And for this I will answer, O people, answer here and hereafter,
O people that I have loved, shall we not answer together?

What Is a "Cure", Anyway?

People e-mail me through this blog all the time -for many reasons- and I am very glad that they take the trouble.  I try to reply to everyone who e-mails, even moreso than those who comment. Every now and again, I'll get into an e-mail conversation with someone about scams or healthcare or something, and they will make me think.  Yesterday it was a comment from somebody who was pro natural remedies and anti- Big Pharma (and pissed with me for exposing so many 'natural remedies" as scams), who made a comment along the lines of  (paraphrasing) "the medical world wants to keep us sick (so they can make money). No disease has been cured since polio".

And this latter comment got me thinking: Polio?  Really?  I didn't even think that was cured.

And I started to wonder seriously:  Which diseases have been cured?  Actually CURED?  The answer was quick and surprising:

None.

Not one single disease on the planet is listed as cured. Those fucking doctors and researchers, epidemiologists and scientists have clearly been sitting on their arses, twiddling their thumbs for centuries.

So old diseases, the ones we don't hear much about anymore. What are they if not cured? Let's have a look at them: Scurvy, Pellagra, Beriberi, Rickets and Pernicious Anemia are virtually unknown in the developed world these days. But they haven't been cured. They have been prevented by a knowledge of nutrients and balanced diet (and maybe fortified cereals).  

Diphtheria,  Measles, Mumps, Tetanus, Whooping cough, TB and even Polio are all under control in most of the developed world, too. Again, None of these diseases have been cured (no, dear e-mailer, Polio is not cured), but they have been  prevented through widespread vaccinations and inocculations.  And in some cases, helped by proper knowledge of hygiene. (handwashing is probably the #1 preventative in the developed world; even more than vaccines).

Cholera is much diminished as a cause of death, too, thanks to modern water treatment methods. And it is treatable now that rehydration techniques are understood and have been taught to many at risk. But it is not cured. 

Bubonic plague; the Black death, was a huge global problem for centuries and is now mostly gone, thanks to pesticides and antibiotics.  But only mostly. There was a famous case of a couple with Bubonic plague in New York City in 2002, although they contracted it in (I believe) Arizona, where infected fleas apparently still abound. After hearing that story, I made a mental note not to go hiking in Arizona. Ever. (There is no vaccine for the plague, although it is a bacterial infection and treatable if caught early.)

Fewer people die of snake and spider bites these days, thanks to anti-venom.  But is that a cure? Snakes are not considered a disease.  Hmmmm.

Far fewer people die of things like appendicitis and abcessed teeth these days, thanks to modern surgical techniques. But neither are these considered a cure. 

ADHD and several mental illnesses can be helped by drug therapy. But if you stop the drugs, the symptoms come back. Therefore: treatment. not cure.

Only one disease is said to be eradicated (is "eradicated" the same as "cured"?  Nope.): 

Smallpox. 

That was the first disease for which a proper vaccine was developed using a relatively harmless pathogen (methods involving the actual smallpox virus itself go more than a thousand of years); invented in 1796, and gaining recognition in the 1800s, when they started vaccinating people on a wider scale. Even then, it wasn't until 1980 that Smallpox was declared eradicated.  Almost 200 years later!  I guess it takes a long time to eradicate a global disease. Mind you, the whole process of safe vaccine development and the idea of widespread preventative healthcare had to be invented too (and not without a lot of mistakes and setbacks), so it's understandable that the first takes the longest. But it is also kind of cool that it worked so well. 

One area in which many strides have been made is in cancer treatment: Cancers can be shrunk, removed and beaten into remission by several different powerful drugs and treatments. Many forms of leukemia and lymphoma are 100% treatable. Inatinib was thought to 'cure" Chronic Myeloid Leukemia, until people realized that if they stopped taking it, the cancer returned. Not a cure then; a treatment. Many cancer patients go into full remission and are declared well or "cancer-free".   But not "cured".

Why is that, I wonder?  what does "cure" actually mean?  I decided to look at this as pertains to me. I have had numerous colds. I don't have them now.  Were they cured?  No.  They just ran their course, treated with tissues and Theraflu. And antibodies.  Because our own bodies recognize viruses as intruders and build antibodies to attack them. Those same antibodies stop me from getting that same cold virus ever again. Unfortunately, unlike the smallpox virus, which has only a few variations, there are about seventy gajillion different cold virus variations.  So immunity does me only little good.  And is not a cure.

If I seriously look at what "cure" means, -At least to me, "cure" If means that someone who was sick would get better and be back to the 100% health, with no fear of the illness ever coming back. Preferably with no side-effects, either; which rules out most drug therapies as cures.

"Cure" doesn't mean prevention though. So if I was to offer a cure for cancer or the common cold, it would mean that people would need to have Cancer or the common cold first, and then I would cure it. And to me, that's not the ideal scenario.  I'd much rather they never get it in the first place. You know, like we have been doing with Smallpox and the like?  Ask anyone who has suddenly been saddled with Tetanus or an unlooked-for pregnancy and they will tell you that prevention is far better than cure.

Therefore, As far as I know the only real cures I have heard about are in the New Testament.  And I'm pretty sure none of those were followed up scientifically.

But here come the naysayers, bitching and moaning that nothing has been "cured" yet and therefore Big Pharma and the medical community are all out to get us.

Pul-eese!  I ask anyone making such claims to me, to please do your research first. And to remember the the expression "an ounce of prevention beats a pound of cure". So  yeah, The medical community hasn't been curing Polio. It has been focusing on what's important: Prevention.

...Not that the medical community is perfect, mind. There are still many diseases out there that don't have adequate prevention or treatments. Muscular Dystrophy is one that comes to mind. Research is very well funded, thanks to Jerry Lewis and his dodgy-but-effective technique, but there are still no big breakthroughs in treating or preventing the disease. They can help some symptoms; they help people get wheelchairs and needed equipment. They do fund a lot of research, but it has borne little if any fruit. There is no way to halt or reverse the progression of the disease itself.  And no way to prevent it. It can be argued that these things take time, and they do, but still, one can't help but wonder...

...about a lot of things, really.  But not about a cure for Polio.

De-Cluttering by Numbers

You know how sometimes, I think to add two elements of my life together in an unexpected way and I realize that maybe that was a good idea (and why didn't I do it years ago?) Well, recently I added my accountant and the show Hoarders together in my head, and it returned a result which pleased me.

Not that my accountant is a hoarder, you understand. He is a very nice man.

I'm not sure why I like "Hoarders" so much. Maybe it is because I am a terrible housekeeper and I feel better looking at the state of the hoarder's houses. (I can tell myself "at least I'm not that bad!"). Or maybe I view the show as a kind of warning to myself (and Himself) that there are definitely hoardy tendencies at work in this household, and if it isn't nipped in the bud, we may end up on that show ourselves in 20 years' time.

Or maybe I'm a sucker for a good makeover.

The other part of the equation came from the accountant. Himself often works from home, so the accountant was calculating what percentage of our house was taken up by this and what value that percentage has.

...and that got me thinking a rather obvious thought.

How much does it cost me to keep all the junk I keep?

Of course it's not all junk, but having been raised by parents who were born during the Depression and grew up in Europe during wartime rationing, I do have a tendency to hang on to more Stuff  than I should for three primary reasons 

1. In case I might need it someday. How may times have I gotten rid of something, only to find myself needing it three days later?
2. It's too good to just throw out/ It might be worth something.
3. It has sentimental value.

...which may be all well and good, but the accountant planted the seed that I am paying ...something for every square inch of my house. I wondered if I calculated the actual value of that space against some of the objects that occupy it, would this inspire me to throw more stuff out?

So I set me up a wee spreadsheet with some rough-but well-in-the-ballpark figures.  I factored mortgage, property taxes, utilities (except phone cable and Internet, because the Stuff doesn't use it, but it goes get heated, cooled and maybe watered) and maintenance. I calculated the square footage of the house.  Then I tweaked the square footage a bit.  I decided closets, dressers and other such areas were to be reckoned at half value, because they are there expressly for storage and we don't live in them.  I had originally decided they were free, but they are not. Junk kept in a closet will prevent non-junk from being stored there and tops of dressers are major clutter magnets for me. So half-price seemed a fair compromise.

When I had tweaked and jiggled, I came up with a number: $1.12 per square foot, $0.09 per square inch. Per month. So that bottle of expired eyedrops in the medicine cabinet is costing me roughly 4.5¢ per month to house, heat and cool; with absolutely no return value. Because it is EXPIRED.  And my taxes pay for some big burly men to come and haul shit away a few times per week. I really ought to be using that service more and I might have more house to actually live in.

Those eye drops opened my eyes in a way the manufacturer never anticipated.

Unfortunately, this revelation coincided with a bit of a symptom escalation, so I haven't been able to do much about it. Yet. I have set a bunch of books and videos aside for donation. however, I have been looking at objects in the house in a whole new light; eyeing them more suspiciously, wondering if they are worth the cost of their keep and the tiny percentage of my living space they occupy?

I figured the Elmo videos have definitely outlasted their value.  But my yarn: well, that's going nowhere.

Doctortutes Part II

I got a lot of feedback on the last piece I wrote on this subject  before; -not here on the blog, but through Facebook and e-mail. A lot of my sick friends were intrigued and thinking about giving it a try.

That had not been my intention.

I had planned to slam the whole practice. However, as my one experience with it had been mostly positive, I couldn't.  I can't report dishonestly and slam something that kind-of worked for me.

But this is the conversation I have been having with my friends:  Say you do ask a question of a doctortute over the internet and you get some suggestions/ ideas:  What are the next steps?  I remember after #29 contacted me through this blog with a suggestion that I be tested for dysautonomia, #25 was VERY suspicious when I  told the story to him and raised (again) the dysautonomia question. "Where did this come from" he asked.

"From you. Remember very first time you saw a (small) seizure, you said that looks like some kind of autonomic dysfunction. Don't you remember?" (and it was exactly what he said).  Isn't dysautonomia the same thing?  He reluctantly  agreed.

And said he would write the referral to the dysautonmia research lab here in town.

And didn't

So although 29 was not a doctortute, the end result would probably be much the same if she had been: 

Nothing happened.

You see, most doctors have largish egos. And if you go to your doctor and say "this random MD on the Internet who didn't examine me suggested I might have X " (which you didn't think of), most doctors will be (in turn):

a. Insulted

b. Skeptical

c. Defensive

d. Stubborn

 

...and will probably refuse to follow the doctortute's advice -no matter how sound-  for one or more of the above reasons.

So really, doctortutes may ultimately add to the confusion and frustration many of us experience in trying to find a correct diagnosis, instead of helping it.

 

Something I forgot to mention in my initial post on doctortutes is the high-class version of the profession. Now obviously, these aren't known as "doctortutes" either (although maybe they should be). They prefer to call themselves "concierge doctors" or  "boutique doctors". They charge an annual retainer plus their time  and deliver sterling and individualized service for those who can afford the thousands of dollars a year they cost.  Reading the articles on these types of practices, see a NYTimes piece here  and another interesting article here, the winning formula seems to be a direct money connection between  the doctor and patient (client?  ...john?).  No insurance. No Medicaid. No medicare. This had many advantages for the doctor:  They can cut down on administration staff for starters.  Also, because they are getting a much higher return per patient, they need much fewer patients to break even. This in turn means even less overhead costs: fewer nursing staff and smaller office space.

Win for the doctor.

 

The patients seem to get what they pay for: No waiting! Fast, individualized service, doctor management of outside players, such as test facilities, specialists and  hospitals. And house calls!

I also suspect if a paying-through-the-nose patient presents with an unusual or difficult to diagnose condition, the doctortute won't say "I can't help" or "see a shrink".  Presumably the doctortute, aware of how his bread is buttered, will actually advocate for the patient with specialists and dig until he gets to the bottom of the problem. This may cost the client big bucks, but I'm guessing most have it to spend.

Win for the patient.

(and so further increases the divide between the "Haves" and the "Haves-nots")

 

Of course one cannot write an article on doctortutes without mentioning the ultimate doctortute of our time: Dr. Conrad Murray.  As everyone in the universe, and probably a few without knows:  Dr Murray was Michael Jackson's personal physician and was being paid 1.8 million per year by the entertainment company AEG Live to take care of their investment: i.e. Michael Jackson.

I was thinking about this today in the shower (I get all my best thinking done in there) and it struck me that the pressure on Dr Murray must have been staggering;  -although it was considerably less than the pressure on Mr. Jackson.  Let's think about the some of the numbers:  50 concerts, 750,000 tickets sold for a (guesstimated) £56 billion, and then all the sales from the inevitable post-concert CDs and DVDs. Huge amounts of money  and livelihoods centered around the ability of a single person to get up there and perform his heart out again and again and again. For fifty concerts. Not to mention the planning, rehearsals,  travel and promotion time.

And it was Dr Murray's job to ensure MJ could do it.  AEG Live, the doctor's employer, paid him well: 150,000 per month plus expenses to keep MJ performing.  I can only imagine they had  him under a fair amount of pressure to perform this mission to their standards.  And they aren't medically trained.

Then, as we all know,  Michael Jackson died. Suddenly a lot of people were out of work or were out huge sums of money. Dr Conrad, for his part,  was immediately under a ginormous cloud of suspicion, which has never lifted and has had his name dragged through the mud in the media.

Over the next few months, AEG Live went into overdrive: They produced the memorial service. They announced the rehearsal concert footage and sold the movie rights for a large sum. They announced refunds for the tickets sold, but also said that fans could choose NOT to request a refund, but instead to request the original ticket sent to them. For the full price.

Genius.  Sell the tickets for full price without putting on a show.  Cash in on fan zeal and grief for the price of a piece of paper (plus P&P).  And NOBODY seems to have questioned or criticized this. There is no released data that I could find on how many fans took the refund and how many chose the world's most overpriced memento.  I would really love to know. Mind you, if only 10% of them chose to receive the tickets, that would have put AEG Live well into the black for their initial investment in MJ (estimated to be about $25 million US dollars -note most  other figures are in Sterling). Add in the insurance (£17 million), the  movie deal (£35 million) and the MJ exhibit at the O2 Area in London (£17.50 sterling for a standard adult ticket, £56.50 for the "VIP package"), and  they are turning quite a nice profit on the whole sorry business, with very little further outlay.

While in the meantime,  Dr Murray has lost his shirt, is unemployable, universally hated and facing criminal charges.  Hmmm.  In retrospect, maybe Dr Murray should have charged more for his services.  Because although he clearly wasn't calling the shots, he was the one left holding the (doctor's) bag.

Let his story serve as a warning to all budding doctortutes out there.

The FTC Has Changed The Rules For Bloggers

We all thought bloggers aren't regulated, right?  That we cold say what we want on-line and -provided we didn't directly slander (or is it libel? I am never sure) someone who gave a shit, we were exempt from liability for speaking our minds about all sorts of stuff. The First Amendment and all that.  Yes there are copyright agreements and all that good stuff, but bloggers were never required to back up any statement they claimed as fact. I could say I ran into Elvis in the Public Library last month and no-one would bat an eye.

Well, as of December 1st, 2009 that has changed. The Federal Trade Commission (FTC) has introduced new rules surrounding endorsements and testimonials; and it includes bloggers and message boards as well as print, radio and the telly.  There are clauses that cover celebrity and expert endorsements, too. So now Valerie Bertinelli will have to tell you she was paid by Jenny Craig to lose that weight and keep it off. (What?  you didn't know?). Links to more information from the FTC is here; full Federal Register text here, and the FTC-produced videos explaining the new regulations are here.

So I'll have to watch me P's and Qs from now on.  Just kidding! Thankfully, the FTC doesn't care about foul or salty language, or OSM would be fucked entirely.  Not that I will be impacted much by the new regulations, anyway. I very rarely endorse anything. I once wrote favorably about a book, and I do carry links to books I recommend on this site (and there is no direct language that I could see in the FTC guidelines about hosting links -which I will get to later, because I found this point very interesting indeed). Other than books, most of my mission in life seems to be to find the flaws in things and highlight them in bitchy detail. And I am good at it!  So I can never claim to be an endorser of very much at all...

I find it interesting that I found out about this through Wellsphere, where I am a featured blogger -not that you would ever know that, because I never bothered to put the little picture thingy up here on OSM. Am I now in violation of some regulation?  Eek!  Is the FTC going to come and make an example of little old me?... (I digress).  Yeah, Wellsphere e-mailed me about these new rules. (I knew they would come in useful someday). I did search subsequently and the New York Times did have an article about it a few years ago, and there was some discussion about it mostly on marketing  and reviewers blogs and message boards. I think common-or-garden bloggers such as myself didn't have a clue about it. 

And I wonder how many consumers know?

I am going to jump on a lot of points in this post -and I apologize in advance if this piece seems a bit disjointed, but I am trying to cover as much as I can here, and there is a lot to cover.

This particular set of regulations was last revised in 1980; long before Cher was flogging shampoo, Chuck Norris was pushing excercise equipment, and Billy Mays became famous just for selling anything that wasn't nailed down. It was also long before the Internet took off commercially in the 1990s. The FTC had no real regulations for the WWW and it showed and was exploited for most of the past two decades. So the new rules are long overdue and very much welcome -by me, anyway and I think by anyone who strives towards honesty in their transactions with others.  This change will level the advertising and endorsement playing field.  Now, having said that, Please don't expect everything on the Internet to be true from hereon in. Because I think most scammers will just completely ignore these guidelines, like they ignore the FDA, morals and ethics; maybe thinking that their position overseas or hidden behind a series of front companies/sites will protect them. But at least now you know that you can more freely question 'truths' you find on the internet and report questionable practices to our Uncle Sam. 

Hurray!

But how does it all work?

One point I found mentioned  ...somewhere, is that internet reviewers will now be held to a stricter standard than print reviewers. For example The New York Times (let's say)  book, food or movie critics are not required to disclose in writing if they received the book, meal or movie ticket  they are reviewing for free. A blogger, on the other hand, would have to disclose if the book or product was provided for free and if there were any conditions attached to that gift (i.e. it is only free if you say nice things about it. Or you don't get more free stuff from us UNLESS you say nice stuff about this one (although the latter condition is usually implied rather than spoken, so how do you disclose that?)).   And then I wonder about the NYT critics and other gifts: If our print movie critic gets free popcorn to go with his free movie ticket, does he have to disclose the popcorn, even if the ticket is exempt?  And are there ever any conditions;  written, spoken or nudge-nudge-wink-winked between print reviewers and the people behind the products they review?  It all gets very interesting when you start to dissect this stuff.

And Of COURSE there is my particular bugbear: The whole question of scammers and scam advertising on legitimate sites. I have made my thoughts and feelings on this issue very clear in my open letter to the head of WebMD recently. For a laugh, I wandered around some sites today that I KNOW advertise scammers and did a quick search.  Yes, it is after December 1st, 2009, but most of them are still carrying adverts for both direct and indirect scams.  Nice.  But are they breaking the law?

Sites That Carry Scam Advertising

WebMD.com

About.com

Wrongdiagnosis.com

Amazon.com

Google.com

Yahoo.com

People.com

CNN.com (in fairness, I only found direct scammers here, in my very quick search. Is that better?)

ABC.com

CNBC.com (interesting! see below)

Time.com

Newsweek.com

NYtimes.com (almost all of the scams are there!)

Washingtonpost.com

huffingtonpost.com

Timesonline.com

Irishtimes.com

Foxnews.com

I should have just listed the sites that don't advertise scammers (that I recognized as such, anyway). It is much shorter:

Sites that DON'T Carry Scam Advertisements*

NBC.com

MSNBC.com

BBC.com

Fox.com (no public search available)

CBS.com 

WSJ.com

TheCW.com (no public search available)

I could probably go on and on, but I think I have made my point. Lots and lots of legitimate internet names carry links to scams on their sites. They are paid to do this.

Now I wonder if and how these sites are liable under the new FTC regulations?

The FTC guidelines didn't specifically state that carrying product links or advertisements on a website or blog constitutes endorsement of those products. However, that is the public perception.  Read the comments on my Gordon's piece. Many of the people who bought into those products did so because a search on a legitimate site took them to Gordon's Habitual Scamming Center (through that notorious loophole: "sponsored links"). In my opinion, the legitimate sites who carry these advertisements do and should bear some of the liability burden here.  However the regulations seem to skirt around this issue.  (and I wonder how much lobbying went into the wording thereof? Hmmm)

Another thing I wonder about, in light of the the fact that different rules apply to blogs and print media: The Huffington Post (HP) is technically a blog, whereas I figure NYTimes.com is technically part of the newspaper. Does this mean the NYT carries more exemptions, as mentioned above?  Will the HP bear more liability than NYTimes.com, say if both carried the exact same review worded the exact same way?  What about if both carry exactly the same links or endorsements? 

...And what about broadcast media such as CNN and ABC? Will their site content be regulated differently than their broadcast content? 

And do responsible advertisers such as NBC and MSNBC (but not CNBC.  ...why NBC, why???) get any kind fo kudos for acting properly without a government stick as inspiration?

It's all interesting stuff, right?

Another thought that occurred to me is this one: How the fuck do the FTC plan to enforce these new regulations?  Do they have scores of staff reviewing review sites, or are they relying on consumers to report dodgy reviews? (and if so, how will consumers know what is dodgy and who to tell?) You know, although I really really welcome these new regulations and think they are a very good thing: It all seems rather poorly thought out.

However, it's a lot better than nothing, which is what we had before.

*i.e. advertisements that were immediately recognized by me as scams. However, I don't claim to be the all-encompassing authority on this subject...