Two stories

[DanaC]

I just read two stories in the Guardian, which exist at such polar extremes from each other, that it really caught my attention.


First story was about the ongoing attempts by activists, many of whom are survivors of this particular kind of abuse, to remove the faith 'shield' from prosecution for refusing medical treatment for children on the grounds of sincerely held belief.

Mariah Walton’s voice is quiet – her lungs have been wrecked by her illness, and her respirator doesn’t help. But her tone is resolute.

“Yes, I would like to see my parents prosecuted.”

Why?

“They deserve it.” She pauses. “And it might stop others.”

Mariah is 20 but she’s frail and permanently disabled. She has pulmonary hypertension and when she’s not bedridden, she has to carry an oxygen tank that allows her to breathe. At times, she has had screws in her bones to anchor her breathing device. She may soon have no option for a cure except a heart and lung transplant – an extremely risky procedure.

All this could have been prevented in her infancy by closing a small congenital hole in her heart. It could even have been successfully treated in later years, before irreversible damage was done. But Mariah’s parents were fundamentalist Mormons who went off the grid in northern Idaho in the 1990s and refused to take their children to doctors, believing that illnesses could be healed through faith and the power of prayer.

As she grew sicker and sicker, Mariah’s parents would pray over her and use alternative medicine

(The article makes clear, btw, that this is not a mainstream Mormon stance)

Meanwhile:

In Canyon County, just west of the capital, the [Followers of Christ]Peaceful Valley cemetery is full of graves marking the deaths of children who lived a day, a week, a month. Last year, a taskforce set up by Idaho governor Butch Otter estimated that the child mortality rate for the Followers of Christ between 2002 and 2011 was 10 times that of Idaho as a whole.

One man's story of surviving FoC:

Slowly, Hoyt has developed the capacity for family life, after a life in the sect left him “unable to relate to families” for a long time. “I didn’t understand the concept,” he said.

He lost his faith around the age of five, when a baby died in his arms in the course of a failed healing. While elders prayed, Hoyt was in charge of removing its mucus with a suction device. He was told that the child died because of his own lack of faith. Something snapped, and he remembers thinking: “How can this possibly be God’s work?” His apostasy set up lifelong conflicts with his parents and church elders.

In just one incident, when he was 12, Hoyt broke his ankle during a wrestling tryout. “I ended up shattering two bones in my foot,” he said. His parents approached the situation with the usual Followers remedies – rubbing the injury with “rancid olive oil” and having him swig on Kosher wine.

Intermittently, they would have him attempt to walk. Each time, “my body would just go into shock and I would pass out”.

“I would wake up to my step-dad, my uncles and the other elders of the church kicking me and beating me, calling me a fag, because I didn’t have enough faith to let God come in and heal me, while my mom and my aunts were sitting there watching. And that’s called faith healing.”

He had so much time off with the untreated fracture that his school demanded a medical certificate to cover the absence. Forced to take him to a doctor, his mother spent most of the consultation accusing the doctor of being a pedophile.

He was given a cast and medication but immediately upon returning home, the medication was flushed down the toilet, leaving him with no pain relief. His second walking cast was cut off by male relatives at home with a circular saw.

Some states have removed the faith-nased protection from prosecution, but some have yet to doso. And,apparently the only reason it exists in the first place, is because in the '60s, when the federal legislation was being drafted it was heavily influenced by two of Nixon's advisors (later jailed over watergate) who were both members of a faith-healing sect.

“Because Erlichman and Haldeman were Christian Scientists, they had inserted into the law a provision that said those who believe that prayer is the only way to cure illness are exempted from this law,” he said.

They also ensure that states had to pass similar exemptions in order to access Capta funds. The federal requirement was later relaxed, but the resultant state laws have had to be painstakingly repealed one by one.

Read about the attempts to get this law repealed in some of the hold-out states here: http://www.theguardian.com/us-news/2...g-medical-help

So, I had just gotten through reading all that (and there's a lot more to that article than what I posted) I return to the homepage and see this headline:

Brain implant helps paralysed man regain partial control of his hand

A 24-year-old man who was paralysed in an accident six years ago has regained some control of his hand using an implant that sends signals from his brain directly to the muscles that move his wrist and fingers.

Known as a neural bypass, the implant allows Ian Burkhart to swipe a credit card, play the video game, Guitar Hero, and perform actions such as picking up a bottle and pouring the contents, holding a phone to his ear, and stirring a cup. He is the first person to benefit from the technology.

Also a fascinating story.

https://www.theguardian.com/science/...-neural-bypass

[xoxoxoBruce]

You'll get an argument from not only fringe faith groups, but staunch libertarians and far right conservatives, against the state interfering with child rearing family values. The latter two would do what's best for their kids but don't want the government telling them. The coalition presents a political force large enough to rally for this kind of legislation.

[Pamela]

God helps those who help themselves. If you fail to do your part, why should He do his?

[footfootfoot]

A *friend of a friend of a person I know* (in other words, being intentionally vague)
was in the alternative medicine field and not only dispensed the kool-aid, but also dipped deeply into their stash, decided they were going to go all alternative medicine when their one or two year old child had some minor childhood illness that is routinely treated with antibiotics.

The illness progressed unchecked despite repeated kool-aid treatments until it became meningitis and now they have a 20 something year old kid who is severely brain damaged.

And they still think they made the right decision and are still strong advocates of the kool-aid cure.

[tw]

New York state proved that most alternative medicines (ie health food stores) do not even contain ingredients claimed on the label.

One of Steve Job's greatest regrets was using alternative medications. He blames that for contributing to his death.

Anyone who imposes religious beliefs on another is Satanic. As Pennsylvania's scumbag Senator Santorum tried to do to Terry Schiavo. He tried to impose his Catholic beliefs on his victim.

You can choose your medications for yourself based upon your religion. But evil is to use that same strategy on anyone else. Good people never impose their religious beliefs on anyone - ever. Even Puritans had to flee England (to America) to get away from religious wackos who imposed religion on others.

Religion is only between one man and his god. Religion must never impose restrictions on anyone else - ever. Alternative medicines are mostly destructive scams that feed on adults who act emotional like children.

[DanaC]

I had my own experience of the koolaid brigade when I was a kid, and it took quite a long time for me to stop feeling angry about it. Our lovely, caring, dedicated and understanding family doctor, in desperation at what to do with a 12 year old whose scalp-to-toe severe eczema was not responding to any treatment, and was in fact becoming dangerously bad, who was also unable to keep food or water down without vomiting, and who was losing weight at a dramatic rate, clearly didn't trust hospitals because he advised us instead to go see a friend of his who was pioneering a new treatment.

It cost my parents thousands of pounds, traumatised me (and them) beyond belief, and I am convinced to this day would have eventually killed me had we not decided to jump off the merry-go-round when we did.

What should have happened, looking back, was an extended course of strong antibiotics. My skin was coming off in sheets, because of infection, not because I needed innoculating against household dust and apple pectin and thousands of other common substances.

The testing process alone took four weeks, and had them sticking needles in me every 10-20 minutes, all day five days a week, relying on my descriptions of how ill, or itchy I felt to come to whatever concentration of substance they figured would 'switch off' the allergic response. Try this: sit in a chair, after someone has given you an injection which might cause you to feel a physiological response, such as itchiness, headache, nausea, irritability etc, for 20 minutes, without reading, talking, or watching television. Just sit there and focus on how your body feels. Then keep doing that over and over, having injections and tracking improvements to the symptoms you've detected, or worsenings of the symptoms you've detected. Do that all day. How accurate are those descriptions going to be?

Now do that, sitting in a room with 7 other people, who are all also silently monitoring their symptoms, whilst being given injections every 20 minutes.

But - before you do that, you should listen to a lecture by an expert about how allergies can prompt the body to experience symptoms of almost any illness or disease. And how this process will allow you to take control of your own body. That the success of the cure depends on your committment to it.

Oh, and you should also, to get the full feel of the experience, be told in no uncertain terms that it is a very good thing you came to them when you did, because your body is breaking down under the onslaught of toxins it cannot cope with and that had you left it any longer you may well have died.

Now recall that in this story you are 12 years old. And now add in the eminent doctor's partner - a brusque, no nonsense woman in very expensive, tailored suits who cajoles and at times outright bullies you into compliance and considers any failure of the medicine to be a failure of the patient to properly commit. She's wholly evangelical about the treatment, and is quite intimidating.

Now do that five days a week, for four weeks. And follow it up with daily injections, a strictly comtrolled diet, food diaries and symptom diaries, and first weekly, then monthly consultation visits for about the next 7 months, all the while with no improvement in the illness that took you there.

If anything, surprise surprise, I was getting worse. Doctor F -- and his partner lost patience with me when it became clear there would be no follow-up photograph to go with the 'before' photo he'd taken of me for his book.



It was all cloaked in the most respectable looking science and medicine. His surgery, when we first went, was on the street in Manchester where all the really high up consultants are. And we were referred to him by a doctor we trusted.


I still think sometimes about some of the other patients in that room. One of them was a woman, not sure her age, who was crippled by multiple sclerosis, and whose husband had to carry her up and down the stairs to the treatment room. I wonder how many thousands of pounds they took from her.
Oh .... sorry, turns out I am still quite angry :P

[footfootfoot]

We all are.

[Clodfobble]

Holy shit, Dana. You'd hinted before at some of the things your parents tried when you were a child, but that sounds really horrifying. I'm so sorry you had to go through that.

[DanaC]

Thanks hon. I suspect though, as is often the case with this sort of thing, that it was more traumatic for mum and dad. Must have been hard for my big brother too, I think. So much of his childhood and early adulthood was dominated by my health crises.

We all learned some lessons thought those experiences. It's one of the reasons I am so skeptical about 'alternative medicine' and faith healing (yep, tried that too :p).

When I see the recipes you come up with to allow your kids to experience similar food types to other kids - the realistic looking hotdog buns spring to mind :P - it always reminds me of Mum and the lengths she'd go to, the sheer inventiveness involved, along with the expense of buying hard to find non-standard ingredients and replacement foods, to try and inject a degree of normalcy into the various weird and wonderful diets that we tried.

We had some wonderful successes, some heroic failures and some truly hysterical mishaps along the way. we still reminisce about the green jelly (jello) she made for my birthday party one year. It was truly awful, but bless them my brother and my older cousins all made happy eating noises whilst they choked it down.

On the success side, I still sometimes make the pasta-less lasagna she used to make for me, using thin cabbage leaves instead of pasta. I have replaced the goats cheese with ordinary cheese though. funnily enough I saw something called courgette pasta the other day in the supermarket. I think it was courgette, anyway, some green veg. Strips of it, curled like tagliatelle for use in place of pasta. I had to smile: Mum was ahead of the curve on that one by decades ;p

[monster]

Oh my word. I went through a bunch of allergy test injections too, in a grid pattern across each upper arm, for hours and days on end, but it was relatively untraumatic and got me time off school, which I hated. it never occurred to me it was costing anything, but I guess it must have been. I ended up being "allergic to everything" and having drops to put under my tongue three times a day to help my body learn to deal with stuff. but as I was also allergic to something in the drops, there was a second set I had to take before the first set. My most enduring memory of that, though, was worrying the hell out of everyone there when a large red patch appeared just above my knee on one leg. They were all kind of panicky and suspended injections and watched me closely. We had to stay there even longer. I finished yet another book and when I went to get another from my bag, a woman noticed that the patch was exactly where I rested my other leg while I was reading.....

[DanaC]

They decided I was 'allergic to everything' too lol. 'Total Allergy Syndrome' they called it. After the testing phase one of the four little bottles of stuff i had to take daily was administered as drops under the tongue, the other three had to be injected, twice a day. I got pretty good at giving myself those injections every day. Except this one time, I don't know what I'd done, but my whole upper arm went dark and hurt like hell. I ended up having to have antibiotics for that.

I think what made the whole thing so streesful for me, was that I was so very ill when it all started. They scared us with horror stories of what might happen if I were to give up on the treatment. That and the way the bitch partner of his bullied me.

I recall one time, they gave me anm injection of a solution containing a small amount of apple pectin and it sent me into such a state. The worst headache I have every had in my whole life. It was like my whole head was exploding. I had to keep my eyes tightly shut. I vomited everywhere, and was crying.

Bitch was angry I'd thrown up on her carpet and told me off for being dramatic. They got me downstairs to the waiting room and left me there, lay across the chairs, waiting for my Dad to drive over from Bolton to come get me. They left me there for an hour, and not once came and checked me. I couldn't stop shaking. My whole body was shuddering. Dad took me home, put me in bed and I was stlll shuddering. They'd basically sent me into shock.

Those dickheads had no equipment to deal with any kind of emergency. They didn't even have equipment to deal with an asthma attack, let alone a major allergic reaction. They reliedwholly on their own as yet unproven serums to reverse allergic response. How amazingly dangerous when you consider what they were doing.

I finished yet another book

I wasn't allowed to read during testing. The only thing we were allowed to do was write numbers across pieces of paper, to see if our handwriting changed, because that could be a sign of allergic reaction. They were working in three hour stints with an hour break for lunch. And during those three hours, there was no talking, no reading, no nothing. Total concentration on your body's responses.


The diet they had me on for about the first 5 months was: cabbage, cauliflower, broccoli, carrots, beef, lamb, two types of herbal tea. That was it - if it wasn't on that list no go. No pepper, tea, coffee, milk, sugar, cheese, potato, rice, tomato, peas, herbs, bread, pasta --- just that list above. I could eat as much of it as I wanted - and it took a lot of food from that limited list to actually feel full - I was eating whole casserole dishes full of food and still losing weight. Then they introduced small amounts (like a tiny bit once or twice a week) of potato and tomato. Then a tiny bit of cheese and wheat and very occasional bits of sugar.

never occurred to me it was costing anything, but I guess it must have been

if it was the same place, then it was costing a lot ;p If i recall correctly, I think during testing, it was something like £90 per day.

Several months into the follow-up stages, when we had to keep driving over and buying new phials of serum every four weeks, they moved from the place in Manchester to ..... a mansion on the outskirts of Bolton. The first time mum went over to their new place to pick up the serums and hand over yet another £40 per bottle ( I think it was per bottle anyway - there were four each time I think, and remember we're talkin the mid-80s here, so £160 every four weeks was a fuckton of money) she drove up this long, long, driveway to get to it, and then the door was answered by their daughter, in her bathrobe, with a towel wrapped round her hair, and behind her was a large hall and giant sweeping staircase. There was even a chandelier.


I remember the day we decided to throw in the towel. My mum and I sat at the kitchen table and discussed it. I was the one who made the decision. It all boiled down, really, to whether or not we believed their claims that if we were to stop I might die. At this point I was now 13 years old. And bear in mind, when I first went to them, I was so ill, that my doctors had tested me for a number of serious conditions, including porphyria.

They scared the shit out me and my parents, bled the family dry of money, made me even sicker and then used that fact to scare us into staying on the treatment and were more bothered about what was going in Dr F ---'s book than anything else.


I now know, that my main trigger for eczema is stress and having infection present on my skin. There are some foods that I am sensitive to which can make it worse, and likewise some environmental triggers, like pollen and dust mites, but the biggest triggers are stress and infection. What the medical profession now understands much better is the role of infection in eczema and how to deal with it. It requires an extended course of antibiotics - 10 days minimum, possibly up to 28 days if it isn't responding.


Funny story: by the end of that horrible year of illness, I was about 3 stone lighter than I should have been. When we ditched the treatment and I just ate whatever I wanted - I got better, but also ballooned in weight ;p I went up five clothes sizes in about a year.

[DanaC]

Sorry - this has turned into a horrible set of remininscences of childhood illness ;p

But just one more: at my worst, I was bedridden by this thing. I couldn't move without the skin on my joints splitting. I cuoldn't bear the feel of air on my skin, because it was just raw, seeping with fluid. Strips of skin several centimetres in length and width were sloughing off, leaving it raw and wet underneath. I looked like a burns victim. My eyes would glue shut, it was into my ears, the sides of my mouth. I had to wrap my hands so that the fingers didn't touch each other, I couldn't wear shoes at all. I spent days at a time, in bed, wearing an old shirt of my dad's because it was cotton. When I fell asleep, my face would stick to the pillow, and then when I woke up I'd have to gradually unstick myself.

it was a horrible time. Seemed to go on forever, though all in all it was probably only a year and a bit. With my condition bouncing about between well enough to be up and about and dressed, to in bed in loose cottons or bandages.

How besides themselves with worry my family must have been, watching their 12 year old disappearing like that. And that is what makes me so angry. They were so vulnerable to those charlatans.

It's funny - I can go months or years at a time without thinking about those days, and mostly I don't feel like I harbour much anger about it - and then I'll read something, or hear something, and I am right back there.

[DanaC]

here's a slightly less depressing reminiscence of the koolaid world.

Mum described my first experience of faith healing like this:

She and my aunt took me to a faith healers which was about an hour and a half drive from our home. I was about 3 years old at the time. There were quite a few people there. All the people wanting tobe healed sat or lay on the floor of this big hall, and the healer moved between them, stopping at each one to say a few words and lay his hand on their head, before moving onto the next. He got to me - I'm pretty much in constant motion - I'm scratching, craning my headn to look about the place, generally fidgeting about - he kneels down and places his hand on my head, whispers something to me and moves on - and I stop scratching and fidgeting.

Mum and Stella were speechless seeing it - I just stopped scratching completely, just relaxed and sat there looking chilled.

They got me into the car and we drove home - they asked me what it was the man had said to me, but I didn't seem to know or recall. For like half the journey home I wasn't scratching - and then it started again a little, and then it grew and by the time we got home I was my usual scritchety self.

She never did find out what he said to me. I have no recollection of the event.

[DanaC]

And that is quite enough of that. If anybody needs me, I'll be in my happy place :p


Back to the original articles:

What do we all think of the guy with the electronic implant thingies? How frikkin awesome is that?

[xoxoxoBruce]

1- You can never say your parents didn't love you.
2- It was a hell of a torturous path to the sexy beast you are today.
3- Your father must had had a very good job.
4- You must possess the words most expensive PhD.
5- I love you too.