Burdens and Blessings

I have held off blogging about The Enigma in the hopes that she would blog for herself; such a thing would be extremely challenging, and I’ve seen some kids do it who are then attacked by their commenters as being fakes.

There is a process called “facilitated communication” by which one person holds the brain-injured person’s hand at the wrist and this helps the brain-injured person “type out” a message on a board. The reaction from the casual bystander is to think the facilitator is doing it, not the brain-injured person. (Of course, anyone who tried to force The Enigma to do anything would realize how silly an idea that was.)
You can read about one aspect of the controversy here. The Enigma is one of those kids who has gradually gained independence in facilitation. For some things, she doesn’ t need any help at all any more.
In the previous post, Troop mentioned something about having crosses to bear, and it reminded me of a discussion I’d had with a friend when The Enigma was around ten. He was talking about a basketball player or movie star who had a handicapped kid (maybe adopted one, even).
“They say it’s a blessing? Is it?”
“What?”
“Having a special needs child. Celebrities are always talking about what a blessing it is.”
“Are you nuts?”
I thought—and I still think—this is just a stupid celebrity thing. I mean, what are they going to say: “Every day is a soul-crushing burden”? (Not that I have felt that way, but I’ve certainly seen parents who did.)
It’s hard to enumerate the costs. Financially ruinous, of course, several times. (Most recently, shortly after being reduced to a part-time employee, The Enigma incurred a $12,000 dental bill.) My own health shot (or at least diminished), as I’ve spent 15 years tending her at nights because she doesn’t sleep well. (Health experts disagree on a lot of things, like nutrition and exercise, but they all seem to agree that not getting enough sleep will kill you.)
To say nothing having missed many of the joys of a normal life with her, and feeling that loss acutely as each of her siblings grow up.
A blessing?
But then, it has to be said that if the condition is horrible, some of the fallout has been decidedly positive. The Enigma attended a special school where they said their ABCs and motored her through doing cut-outs; at twelve, with the help of the Institutes, we put her on a home program, where she ultimately developed the ability to comprehend over 20 different languages.
So, her siblings also have been homeschooled. The Boy was a particular beneficiary as he could’ve skated through school on charm.
Also, looking into alternative approaches to handling The Enigma’s condition led to the elimination of my allergies, and seems to have The Boy on the road to recovery for his diabetes.
Now, I’ve come to understand The Enigma somewhat better over the years. We don’t really understand these kids—I’ll get into why in a later post, but curiously tantalizing fact is that blood tests on them have revealed compounds similar to hallucinogens—and it’s true that they are alien to us, in the sense of their experience and intelligence. (Homo sapiens bases its idea of intelligence on the ability to speak.)
But even respecting that difference, let’s not pretend that brain injury is not a deficiency. Even if it results in hyper-intelligence in certain areas (as I believe it does, which is something else I’ll get into later), let’s not go down the deaf route of declaring some kind of legitimate lifestyle choice.
It’s a challenge. And a struggle. But as Troop points out, there are many crosses to bear. If there’s a sin, it’s allowing yourself being defined by the burdens rather than the blessings.

Introducing The Enigma

Although I haven’t blogged about her explicitly, The Boy, The Flower and The Barbarienne have an older sister, who for blogging purposes, I’ll refer to as “The Enigma”. The Enigma is the oldest, and as all first children, she was life-changing.

The Enigma was especially life-changing, as she is severely brain-injured.
A botched surgery at four days left her with a host of developmental problems. A lot of the references I make to things like the ketogenic diet, the IAHP, or “snake oil” in general come from the experiences I’ve had trying to help her. (“Standard” treatment for brain-injured kids these days is to load ‘em up with drugs for depression and hyperactivity, give them a lot of useless therapy, warehouse them in special—er, wait, now we pack ’em in with the rest of the kids, no matter how inappropriate—and load up the parents with antidepressants, while we’re at it.)
One thing parents of brain-injured children tend to do is to look at other brain-injured children and thing “If only…”. It can be hard to comprehend for someone with “normal” children, but I can look at Down’s Syndrome kids and think, “They’ve got it easy.”
I’m not going to be coy: I’m blogging now because of Simon’s tweets about his son, who reminds me strongly of some of the kids the IAHP has treated over the years.
One of the eye-opening things they do at the IAHP is that they point out that kids like The Enigma, because they’re obviously brain-injured, are given certain leeway. Society dismisses them, sure, but because of that, when they do something socially incorrect, the thought process is “Well, they’re retarded.” Or whatever the word du jour is.
But massive numbers of children are brain-injured in ways that have no visible trace. The various syndromes referred to as ADHD or dyslexia or things that don’t even have names yet leave a child who looks perfectly normal, yet who is unable to function in some critical way.
These kids are “stupid”, “lazy” or just plain “bad”. I was in a room full of parents of severely brain-injured kids, and not one of us didn’t tear up hearing about kids who were so high functioning, that they were actually treated worse than our own kids.
When I hear about Simon’s kid, I think of a story they told at the Institutes of a teen who had been brought in because he always made the wrong choice. Well, that’s weird, isn’t it? It doesn’t sound like a brain problem.
Now, anyone who reads this blog knows I’m big on looking at spiritual causes, responsibility, discipline. But, to draw an analogy, if the body is a computer and the brain is the CPU, then if the CPU is screwed up, it doesn’t really matter what the computer user’s intentions are. The results will be screwed up.
This kid who always made the wrong choice was brought in for an interview. And after exchanging some light interview questions, the interviewer adjourned with the kid to show him around the campus.
On the way out, he asked him to turn off the light—a little desk lamp.
And the kid reached for it with one hand. Then he stopped. Then he reached for it with the other hand. Then there was this little struggle. This kid couldn’t turn off a light! Instead, after agonizing for several seconds, he grabbed it and tried to smash it on the floor. (I don’t recall if he succeeded.)
It’s sort of astounding. I might even be disinclined to believe it, but I see similar behaviors from The Enigma on a daily basis. I see “normal” kids all the time and can spot the brain injuries that will go unnoticed for all their lives. You can imagine the reaction of a parent to the notion that their beautiful, perfect child is “brain-injured”. It’s better, in most cases, not to bring it up.
(This, in my opinion, is due to the complete failure of “standard” treatments to do anything at all about brain injuries, so a brain injury is considered a sort of life sentence.)
An average kid who functions normally in most instances is almost never going to be correctly identified as far as brain injuries go. In most cases, that just means they’ll go through life thinking they’re clumsy, or unable to do certain things. In other cases, the results are more dire.
Now, where I get jealous of kids like this is that the fix is ridiculously easy, at least compared to the more severe injuries, many of which are not totally fixable (at least not by the IAHP’s methods).
Anyway, my heart goes out to Simon and his family. I hope they find an answer.

So Many Chemicals, So Little Time

One of my favorite quacks—and I use that term affectionately is a lady named Hulda Clark. She has a theory that all diseases are the result of chemicals and parasites (using the term “parasites” to mean any bacteria, virus, fungus or actual worm). More specifically, that what goes wrong is that modern chemicals interact with parasites and cause them to go through their life cycles in “the wrong place”.

So, while your body may be able to handle Ascaris going through your intestines, if it gets into your liver and interacts with propyl alcohol, bang, you get cancer. I may have that muddled. But the basic idea is there: wrong organism, wrong place, wrong chemical — disease.

Of course, the only thing more common than propyl alcohol is Ascaris, so it’s hard to get clean. However, I met many people whom she had cured of “terminal” cancer when I went to her clinic. (Not just cancer, either. And whatever her motivations are, greed does not seem to be among them.)

I thought of her fondly while reading this Pop Sci article on chemicals. We carry around, literally, thousands of different chemicals, largely unknown both in terms of how they affect us singly and how they interact with each other. That’s before we get around to medicating ourselves.

There are a few mentalities that I find interesting, which that tiny webspace illustrates. First, there’s the idea that “this it the new normal”, according to a scientist in D.C. Keep that in mind: It doesn’t really matter if these chemicals are going to kill you, don’t expect anyone to acknowledge anything too challenging. (And getting rid of these chemicals would be very challenging indeed.)

Second, there’s the idea that “we’re living longer so we must be doing something right”. Well, not really: What if shortened life spans in previous centuries had to do with cosmic rays? I’m just pulling that out of thin air, but it shared thin-airspace with “we must be doing something right”.

Third, there’s the comment that, well, whatever the issue is, it’s too trivial to waste time on. It’s only a few extra sick kids after all—this idea is based on the example of leukemia used by the article’s author—and we’d do better to use that money for helping kids presumably not killed by exposure to chemicals. (Interestingly, the name on the comment is “Shannon Love”. ChicagoBoyz’ Shannon Love spurred a very early post. Dunno if it’s the same one.)

There’s a certain class of people who absolutely hate “quacks”, where “quack” is defined as anyone who doesn’t conform to the current conventional medical wisdom. On the other hand, I consider Ignaz Semmelweiss sort of the patron saint of this blog.

Clark is an interesting person. Very nerdy. Into research. I would have liked to question her on certain things about her philosophy (in which I see certain apparent contradictions). But to me the question of “does it work” is junior to the question “why does it work?”

And since I used her “zapper"—a device that cycles a low level current at various frequencies through your body to kill these parasites—to quickly knock out some debilitating allergies that had been plaguing me for years, I’m less inclined to worry about those contradictions. She could be completely wrong, but I still can breathe.

The Race Against Time

As the struggle to increase state control over health care continues, it occurs to me that this is a race against time.

Sure, this is often been framed as a race against time, in the sense that Obama needs to spend his political capital as fast as he can before the impact of his actual actions (or inaction) start to deplete it.

But there’s another race against time: The more time passes, the harder and harder it gets to pretend that “Well, Europe does this, and they’re all just swell as can be!”

‘cause, of course, they’re not. Right now, Americans (on the whole) would not tolerate the sort of care that Canadians and British receive. The French system is supposedly top notch, but of course it’s in the red to the tune about 10% of its total budget, can’t be decreased, and so of course will only increase.

On top of that, you have the constant double-digit unemployment and the sometimes staggering poverty levels of western Europe.

Even the middle-class in, say, Scandinavian countries, which are often heralded as blissful blonde paradises, can’t (for example) go to lunch routinely. It’s a significant expense. Not surprising, when you consider how much a Big Mac costs. Not surprisingly, Sweden, Norway and Denmark are in the top 5 of the Big Mac Index.

I haven’t been able to validate the $8.99 footlong sub at Subway, talked about in that PJTV video, but most things are taxed to death. I once sent a Dutch pal a $20 computer game because it was $70 in his country.

Last time we voted down government medicine was 15 years ago. And it was tabled for all that time, and all that time the countries that had government medicine have only gotten more in debt. 15 from now, some of them (at least) will be bankrupt, and that will be the least of their problems, one suspects.

So, if we can win this battle, that might end the argument for the century.

It’ll come back, of course. Tyranny always comes back in one form or another. All we can do is fight it off every single time.

Eternal vigilance.

Wherein I Throw Down With XWL

XWL over at Immodest Proposals commits the ultimate crime here.

That’s right, folks, he disses the placebo. Here at the ‘strom, it’s a toss up as to whether we prefer placebos or snake oil, but both have an exalted position in our world.

I’ll concede his basic point that vague diseases lend themselves to vague cures. But it’s a mistake to regard placebos as meaning that the patient was never sick to begin with. A lot of people tend to think that psychosomatic illnesses aren’t real, that they’re “all in your head”.

But of course, they are real. The symptoms match those of “real” diseases. It seems to me that a psychosomatic condition could have a perfectly ordinary biological origin, but be held in place by a state of mind. The placebo gives the mind an excuse to let go of the symptoms, basically.

There’s a congruence of mind and body not to be overlooked. If you injured your leg and tended to favor it, it would get stiff. And you might, noticing that it was stiff, tend to keep favoring it, actually making it stiffer. If you were convinced, on the other hand, that it was all right and just needed a little exercise, not only would you tend not to favor it, your body would probably create conditions more inclined to relax it.

The real question is how many diseases could be positively influenced by a placebo. Sometimes, I suspect, all of them. A midwife I knew said that while labor hurt, a lot of that hurt was a combination of past pain and future pain. In other words, remembering the previous contraction and fearing the next one made the present contraction three-times as bad as it really was.

I often wonder how much we could do with a really good placebo. I’ve mentioned my friend who died of cancer (three years ago now) and as I sat with her as she lay dying, I contemplated a chicken sacrifice. Rattle shaking. Dancing in a mask. I would’ve done it if I thought I could’ve convincingly sold it. Or if I could’ve hooked up a couple of Tesla coils and Jacob’s ladders, and pulled a mad scientist.

There are examples of just about every disease getting spontaneously better. Maybe that’s what we should be looking at rather than running placebos down.

Separation of Medicine and State

The latest encroachment of state upon medicine is, I think most of us realize, nothing novel. We have socialized medicine elsewhere in the world, and no matter how badly it fails and how reductive of liberty it is, the drumbeat to implement it here has been constant throughout my lifetime. But the slope didn’t start slipping with Medicare or any of the other government programs; in my opinion, the journey predates modern collectivism by centuries.

I’ve written before about how my great-grandmother was threatened with arrest for curing TB patients. This would’ve been in the early decades of the 20th century. But she was hardly alone: Medical guilds have been attacking outsiders since the days they were respectable barbers with a shady side-business.

Basically, when the various medical associations managed to get a monopoly on treating the sick, and got the force of the state on their side, they not only diminished prospects for health (in the name of protecting people, of course, it’s always in the name of protecting people), they signed their own death warrant.

Someone else at Ace’s or Althouse mentioned Microsoft, which is a propos because one of Microsoft’s tactics for conquering a niche has always been to “partner” with their future competitors, usually offering some tempting deal. At that point they’d steal code (for example), and integrate it into the OS. Cut off their oxygen, as I think MS CEO Steve Ballmer put it. At that point, you can either outlawyer them, buy them off cheap (if you need to buy them off at all), and voila, you own the market.

I actually consulted for a company that partnered with MS. I was astonished that they partnered with them, seemed to be proud of that fact, and watched as MS created a competitor that is now included with every version of Windows. But at least they’re still in business.

That’s, of course, similar to how the government works, as well. The government “partners” with doctors–and look how tight the AMA and government are–offering them the sweet deal of a monopoly, and wiping out their competition. (Remember, the government just spent $2.5 billion to prove that none of these other things work. Meanwhile tens of billions go into curing cancer with no appreciable progress made.)

And while the government forbade compensation increases during WWII (to stem inflation), they exempted medical insurance, thus leading to the current weird situation where one is beholding to an employer for tax-deductable coverage or else stuck buying their own, giving us the current market distortions in the insurance market. (Well, that and all the other “help” the government gives.)

And now it’s time to pay the piper: The price for the monopoly–for convincing the country that there is only way to treat medical problems, and that there is only one source for that treatment–is to become public servants, under the thumb of the government. In the words of Darth Vader, “I have altered the deal. Pray that I don’t alter it again.”

The thing that got me thinking about this was stumbling across this somewhat overblown video on poor Willhelm Reich. I referred to him as a “probable quack” in my previous post, which was just a flip statement (plus, like “snake oil”, I use “quack” affectionately).

I don’t know if Reich was really a quack or not. I do know that he was destroyed, just like my old pal Ignaz Semmelweis, and his writings actually banned by the government! (Or so they say; I haven’t seen the order.) I’m not sure how the First Amendment allows celebrities to be attacked with known lies, but also allows controversial philosophical and medical ideas to be banned.

But I do think it’s kind of interesting that I keep seeing “the ether” pop up in scientific articles. And I’m pretty sure that it’s within my rights as an American–or it was supposed to be–to explore such ideas, however wacky, stupid or even personally harmful, they might be. I think the Founding Fathers would have wanted me to be able to buy an orgone box if I felt like.

Hell, Franklin would’ve gone halfsies with me.

Weird Science

We were back at the dietitian’s last Friday after a couple of weeks away, and both I and The Boy were dehydrated. Not a huge surprise, really: We’d been walking around the college, in the heat, I’d been working out a bit more, etc.

As a coda to this post about my weird dream, the dietitian was giving us signs of dehydration to watch for, so that we would know when to drink extra water. First one she mentions? Weird dreams. General sleep disturbances (I hadn’t been sleeping well, or at least not long enough.)

So far, though, everything that she said would happen has happened. We had some blood sugar crashes early on (as The Boy’s body released the artificial insulin it stored up) and then, in line with his graph being in the right place, he’s started to have sugar in his urine.

Generally, you don’t want sugar in your urine, but in this case it’s supposed to be indicative of the healing process. Intriguingly, The Boy’s sugars are very well in control, if a little wild. (They’ll get suddenly high, then drop down just as suddenly, though never into a dangerous zone.) He’s also on half the per-meal insulin he was a few months ago.

The theory is that artificial insulin is like a cast for the pancreas, so once the body starts healing, you need to take the cast off, letting your sugars get a bit high so that the pancreas will be stimulated to start producing.

I’m sure this could cause a panic attack in a lot of medical professionals. I’m sure it’s dangerous. But you know what? So is diabetes-for-the-rest-of-your-life. They kind of feed you a cock-and-bull story about how you can be in the NBA and live a normal life, but the long term consequences for a diabetic, even one with well-controlled blood sugar, are really pretty horrible.

I love mainstream medicine, don’t get me wrong, but really only for emergencies. Bad infections, broken bones, heart attacks, and so on. But if I have high blood pressure, I don’t want to take a pill forever. I want my blood pressure back to normal. Same with high cholesterol.

But even if you’re an all-mainstream-medicine-all-the-time-guy, the FDA sits on drugs that might help people in the name of protecting them, essentially protecting them to death. “Excuse me, Mr. Government, sir, but I’d like to try that cancer medicine, even if it might kill me. Because I’m going to die anyway.”

I think Man has an inalienable right to his snake oil, as I’ve said here many times. I’m sure, in my case, that it’s part of the pursuit of happiness. And in everyone’s case, it’s a matter of sovereignty over his body.

If the government would leave my body and my property alone, I’d be happy to have the social liberals and conservative battle out whatever they wanted.

All Clear

OK, so tests came back and everything’s fine.

Phew.

Everyone’s happy with the results. No need for further tests. And my dietary numbers look good, too. Well, not good, but better.

I’m still not allowed to exercise. Exercise may have contributed to the situation, actually. (Though my money’s still on the antibiotics.)

In any event, I’m good to go. I live…again.

UPDATE: And pardon my manners. Thank you all for being so supportive here. Means a lot, even though I wasn’t all that communicative about it.

Medicine and Technology

The Boy and I watched an interesting demo today on a device that monitors blood sugar continuously for 72 hours. I was a little disappointed by it, because I thought it was going to be something like a watch you could look at to see your blood sugar at any time. Instead, it doesn’t transmit the information at all. After the 72 hours you remove it and a computer reads the data.

How positively medieval.

This is all a come-on for an insulin pump. If I had known that, I probably wouldn’t have bothered. Two extra trips downtown (one for the demo and sensor insertion, one to drop off the sensor later) for something I don’t think we’ll be using, but it was kind of interesting. The basic premise is simple enough: You wear an external device that acts sort of as a pancreas.

The pancreas does more than produce insulin but, hey, it’s a start.

Anyway, the boy raked the rep–who was, of course, cute and hot, as all such reps seem to be–and the doctors over the coals: What were the bugs? What could go wrong with the system? His syringes sometimes leak, what if that happened? What if his blood sugar dropped too low at night? How would he know what his blood sugar was at any given moment?

The technology is pretty good, though, and delivers small amounts of insulin over time rather than big loads, and apparently can actually do so based on blood sugar readings from the sensor. (Via wireless bluetooth! Now we’re talking! The rep said one guy had the readings hooked to his car GPS.)

Part of the appeal of this is that you can eat whatever you want, whenever you want.

But, you know, what if that’s how you got into the mess you’re in in the first place?

The Boy’s numbers are looking good anyway. In the two months since we started the diet his scores have dropped 20% (lower is better), and he’s started lowering his insulin again. (This time, theoretically, he should be able to keep the insulin lowered.)

The outlook for me is not so rosy, unfortunately. My numbers are rather dire and getting worse, and despite a checkout from a doctor, I’ll be having X-rays and bloodwork done tomorrow. So wish me luck. (Again.)

Correction

I mentioned over at Althouse that my stay in the hospital (I was seven or eight weeks premature) cost $25/day versus the $2,500/day last time I checked. That’s the baseline. It doesn’t cover any extras, just a warm crib in a room full of other cribs and nurse/nuns. (Now ) And a doctor checking in once or twice a day.

I mis-spoke. The cost of NICU back in my infancy was ONE dollar/day. My entire stay cost, adjusting for inflation, about $160.

My poor parents (with no insurance, or at least none that covered this) had to pay that out of pocket.

I wonder if they wrote a check.