March 21 is World Down Syndrome Day.
Temple Grandin wrote:
It is likely that genius is an abnormality. If the genes that cause autism and other disorders such as manic-depression were eliminated, the world might be left to boring conformists with few creative ideas.
Down Syndrome is not genius, at least not in the intellectual sense. If I could wave my hand and eliminate that third copy of the 21st chromosome, I imagine I would do so. But would that be a good thing? The more I hear from families of children with Down Syndrome, the more I wonder if these people have something important to offer the world that shouldn't be thrown away.
Even if eliminating the genetic defect that results in Down Syndrome would be best for all concerned, I know for a fact that eugenics is not the right way to effect a cure.
The population of people with Down Syndrome is diminishing rapidly, not because someone has cured the condition, nor found a way to prevent its occurrence, but simply because more and more babies with Down Syndrome are killed before they have a chance to be born. Prenatal testing to determine the presence of that extra chromosome is widespread, and more and more parents are opting for abortion rather than meet this challenge.
It's not my place, here, to judge another person's response to a difficulty I have never faced. But as a society we need to be aware of exactly what we are doing. There have been other times in our history when we have made deliberate efforts to eradicate the "unfit," and those actions have been rightly condemned by subsequent generations.
I respect doctors, and am grateful for their skills, knowledge, and compassion. But that respect and gratitude are much the same as my feelings about teachers: individually and personally they can be fantastic, but as a bureaucracy (the medical/educational "establishment") I have serious doubts.
In my own life, the medical establishment's attack on my health began at birth. I don't know the details of my hospital birth, but I know the official policies were long on interference and very disrespectful of the natural birth process. What I know for certain was that my mother was discouraged from breastfeeding and told to feed me "formula," which in those days was a mixture of water, evaporated milk, and Karo corn syrup. (You read that right.)
Somehow i survived that abomination of an infant diet, which also included introducing solid foods at a few weeks of age. But it didn't stop there: I grew up right in the middle of the big push to get people to eat margarine instead of butter. My parents followed that recommendation, too—probably quite willingly, because margarine was so much cheaper than butter. I don't blame them for that, but I do blame the medical establishment for pushing margarine as far healthier than butter. Of course they now tell us just the opposite. Several years ago I made the switch back to butter, but not before exposing our own children to far too much margarine in their diets.
When I was young, my family also switched from drinking whole milk (delivered in glass bottles, with the cream risen to the top) to the skimmed variety, again at the recommendation of the doctors. That one stuck with me—to this day I prefer skim milk, and with skim milk we fed our children. But it would probably have been better if I had never lost my taste for milk with its full complement of fat and natural vitamins. Even the doctors no longer recommend skim milk, though they're still pushing less than the full 4% butterfat version.
I've lived long enough to see doctors insist that all babies must sleep on their backs, then that all babies must sleep on their stomachs, then back to their backs, then their sides...with never an apology for giving the "wrong" advice for so many years. I'm glad that my knowledge of official fickleness enabled me to stand firm in my own decision not to let flip-flopping doctors determine how our babies would sleep. At least we got that one right.
Now there are indications that the intense campaign to come between American skin and the light of the sun is causing problems much more severe and widespread than the skin cancer it's supposedly preventing. The push to slather sunscreen on every time we leave the house has resulted in widespread vitamin D deficiency, and a re-emergence of the bone disorder, rickets. Moreover, the article, Is Sunscreen the New Margarine?, makes the case that sun exposure is necessary for our cardiovascular health, especially for healthy blood pressure levels. Many doctors are now saying that we need to ease up on the sun-phobia, though it's still controversial.
One of the leaders of this rebellion is a mild-mannered dermatologist at the University of Edinburgh named Richard Weller. For years, Weller swallowed the party line about the destructive nature of the sun’s rays. “I’m not by nature a rebel,” he insisted when I called him up this fall. “I was always the good boy that toed the line at school. This pathway is one which came from following the data rather than a desire to overturn apple carts.”
Weller’s doubts began around 2010, when he was researching nitric oxide, a molecule produced in the body that dilates blood vessels and lowers blood pressure. He discovered a previously unknown biological pathway by which the skin uses sunlight to make nitric oxide.
It was already well established that rates of high blood pressure, heart disease, stroke, and overall mortality all rise the farther you get from the sunny equator, and they all rise in the darker months. Weller put two and two together and had what he calls his “eureka moment”: Could exposing skin to sunlight lower blood pressure?
Sure enough, when he exposed volunteers to the equivalent of 30 minutes of summer sunlight without sunscreen, their nitric oxide levels went up and their blood pressure went down. Because of its connection to heart disease and strokes, blood pressure is the leading cause of premature death and disease in the world, and the reduction was of a magnitude large enough to prevent millions of deaths on a global level.
Other studies have found more benefits of sun exposure.
Pelle Lindqvist, a senior research fellow in obstetrics and gynecology at Sweden’s Karolinska Institute... tracked the sunbathing habits of nearly 30,000 women in Sweden over 20 years. Originally, he was studying blood clots, which he found occurred less frequently in women who spent more time in the sun—and less frequently during the summer. Lindqvist looked at diabetes next. Sure enough, the sun worshippers had much lower rates. Melanoma? True, the sun worshippers had a higher incidence of it—but they were eight times less likely to die from it.
So Lindqvist decided to look at overall mortality rates, and the results were shocking. Over the 20 years of the study, sun avoiders were twice as likely to die as sun worshippers.
On the other hand,
“I don’t argue with their data,” says David Fisher, chair of the dermatology department at Massachusetts General Hospital. “But I do disagree with the implications.” The risks of skin cancer, he believes, far outweigh the benefits of sun exposure. “Somebody might take these conclusions to mean that the skin-cancer risk is worth it to lower all-cause mortality or to get a benefit in blood pressure,” he says. “I strongly disagree with that." It is not worth it, he says, unless all other options for lowering blood pressure are exhausted. Instead he recommends vitamin D pills and hypertension drugs as safer approaches.
Seriously? Vitamin D supplements have been shown to be ineffective, probably because there's more to the benefits of sun exposure than the vitamin. And can he honestly believe that exposure to the risks of hypertension drugs is better than a little sunshine? I generally take with a grain of salt the blanket pronouncements of some of my more radical friends that the medical industry has no interest in anything they can't make money from. In most of life I'm inclined to attribute bad effects more to ignorance than to evil intent. However, sometimes that optimism is shaken.
Me? I live in Florida. I know the power of the sun, and am grateful for sunscreen when I deem it necessary. All the doctors agree that sunburn is bad. But even in Florida I've always known that some sun exposure is important—another thing I think we got right with our kids.
I still feel guilty about the margarine, though.
Go Wild: Free Your Body and Mind from the Afflictions of Civilization by John J. Ratey and Richard manning (Little, Brown and Company, 2014)
I've neither the time nor the inclination for a full review of Go Wild, which I borrowed from the library while waiting for them to acquire Spark, another book by John Ratey, which was highly recommended by a friend. Fortunately, the friend said about Go Wild that she found it good but not worth paying for, so I'm still looking forward to Spark. I found Go Wild too annoying to call "good," but I am glad I read it, as there's a reasonable amount of inspiring information in it.
To begin with, the author pushes several wrong buttons for me, from the trivial to the overwhelming. As an example of the former, there's this (emphasis mine):
Even the child's song knows that the leg bone is connected to the thigh bone; we mean to press this idea a lot further to provide some appreciation of the enormous complexity and interconnectedness of the various elements of human life.
I'm sure he's referring to the spiritual, Dem Bones, which is not a child's song, even if it might end up in a collection of songs intended for children. And I know there are different versions, as there always are with songs of the people, but all the versions I've found acknowledge that the thigh bone is connected to the knee and the hip, not the "leg bone" (or "shin bone" as I know it). Yes, it's trivial—but to me it points to carelessness on the part of the author, which doesn't increase my confidence in what he says. (Or maybe I should blame his proofreaders.) There are other occasions where I get the same feeling.
Then there's this, which to me undercuts all his arguments: I'm fine with evolution as a scientific theory of origins and change. I'd go so far as to say it does an excellent job of explaining much of the available data. But I am not okay with evolution personified and deified, which is what happens in this book. All over, everywhere: "Evolution endowed," "evolution created," "evolution designed." Not only is evolution the basis for all the book's arguments, but the language makes evolution seem like a living, sentient, personal entity—though not, the authors are careful to point out, a loving one.
I was late in coming to the appreciation of religion, but I've always loved science. The religion of science horrifies me, however, and with that this book abounds. Add to that a significant dose of Eastern spirituality, and the feeling that the authors have been, perhaps, a little too selective in the studies they choose to believe—well, I wasn't too happy with the book.
It's also hard to take too seriously someone who—although he loves the outdoors and runs ultramarathons, will also drive 45 minutes to find a gym in the middle of nowhere.
That said, it's almost amazing that I found much of value here, but I did.
The authors cover a lot of ground. Here's a brief summary, although it doesn't come close to doing the ideas justice.
- Do what works for you. There is no one-size-fits-all. Take the first step in any of the areas they recommend changing, and you will find yourself gradually taking on more and more.
- Don't eat sugar in any form.
- Eat no wheat, rice, oats, or any other grain, not even in whole-grain form. No high-carb vegetables like sweet potatoes. No manufactured fats, no processed food, no fast food.
- Eat eggs, grass-finished beef, cold-water fish, nuts, simple fresh fruits and vegetables—but no fruit juices.
- Variety is important—as long as you avoid the long list of don'ts.
- Find a form of exercise you like, and do it.
- Exercise that invovles a variety of movements, the whole body, and lots of variation is best.
- Exercise is better out in nature.
- Exercise is better with other people.
- Get more sleep. If you live in 21st century America, it's guaranteed you're not getting enough sleep.
- Sleeping in the same room with the rest of your family is more healthful. (And we thought better sleep at the Maggie P. was due to the salt air.)
- Don't make your babies sleep alone.
- Soothing sounds, such as a crackling fire, or trusted adults moving around and talking quietly, lead to more satisfying sleep.
- Sleep doesn't have to happen all at once. Naps are fine. If you find yourself lying awake in the middle of the night, don't fight it, but get up and do something. Go back to bed later.
- The authors clearly admire Eastern spirituality, and thus promote the practice of meditation. But what they are trying to replicate is the relaxed hyper-awareness common among hunter-gatherer peoples, an ability to calm the brain of distractions while being alert—even more alert than otherwise. This turns out to be good for both brain and body health.
- Being out in nature is enormously healthful. Even an indoor potted plant helps.
- We need other people. We need our own "tribe."
- I wish he had dealt with the differences between introverts and extroverts in this section. We all need people, but they way we need each other is very different for the different personality types, and the authors appear to consider only the extrovert point of view.
As usual, this started out as the place to record a few interesting quotations, and ended up being a long review after all, though my summary did peter out at the end. There's a lot to think about here. I steadfastly reject the authors' extremes: for example, when it comes to food I am an omnivore by inclination but even more by principle, and I would no more adopt this no-carb regimen than I would go vegetarian. At the same time, it's good to eat a lot of vegetables, and it's also good to reduce our intake of carbohydrates, at least of the empty variety. I won't become a marathon runner, much less tackle an ultramarathon—but the book's thesis on the importance of movement is not only convincing, but provides inspiration to do things I've known for a long time that I should be doing.
Here are the random quotes:
Cows evolved to eat grass, but mostly we no longer feed them grass; we feed them the corn and soybeans that are the prime products of our industrial agriculture system. The practice of fattening beef in feedlots and the preponderance of factory beef in the fast-food system passes this omega-3 shortage into our bodies. ... [T]his is also why eating red meat itself has gotten a bad rap, with endless strings of studies linking it to heart disease and a variety of other issues. The beef that is the basis of these conclusions is factory beef, and no wonder.
Although I agree with the authors' complaint that the studies were made with the wrong kind of beef, they provide no evidence that beef from grass-fed cows does not have the same bad effects. I suspect that to be the case, but a citation of some evidence would have been nice.
[W]e begin to understand why social sleeping seems to be a nearly universal characteristic of cultures.... While we are sleeping, we continue to monitor our surroundings for cues of safety: relaxed conversation, relaxed movement of others, popping fire. Those cues, subtle sounds signaling safely, tell us we can retreat to our deepest sleep.
Many cultures are, in fact, conscious of all of this and the importance of these arrangements, and no place is the importance more pronounced than in the case of infants. ... All of this helps explain ... an almost universal perplexed response among most other cultures upon hearing of the Western practice of making babies sleep alone. "They think of this as child abuse. They literally do."
A very recent paper correlates an increase in the incidence of autism with receiving Pitocin during delivery. [Neurobiologist Sue Carter] says that Pitocin is routinely administered to delivering mothers in, she estimates, 90 percent of cases, although there are some signs that this practice is waning.
Why does aggression persist beyond reasons for it? Why are we so riven with senseless killing and warfare?
I picked up on that last one just because it highlights the central problem for people who have no sense of the reality of sin, only of its consequences.
The vagus nerve links up all the tools we need to respond to an existential threat, and so the vagal brake is a signal sent through the system for everything to stand down and engage—at ease. ... There is a simple measure of this. It can be read in the tension or lack of tension in facial muscles, heard in voice timbre and edge, and counted in rate of respiration. ... There is such a thing as vagal tone, completely analogous to muscle tone—and the tone shows how clear and distinct a given individual's ability to apply the brake is.
The vagal brake can be driven by breath, a clear connection readable as blips on a chart. You are in control of your breath, to some degree. Thus, this is not simply a point for measuring or sensing arousal; it is a point for controlling arousal and, downstream, the health problems that stem from lack of control.
If you force yourself to smile, the specific spots in the brain that register depression suddenly say your depression is better. ... It turns out that a halfway, forced smile won't do the trick, because it won't light up the neurons of increased happiness in your brain. But if that forced smile goes so far as to engage the little muscles in the corners of your eyes—that is, if you do what socially adept people understand instinctively—these neurons do indeed light up. And the muscles at the corners of your eyes are within the reach of the vagus nerve.
[The breath] exerts control through the alarm system that is the autonomic nervous system. [Researcher Stephen Porges] says he realized a long time ago—because he is a musician, specifically a horn player—that the act of controlling the breath to control the rhythm of music and at the same time engaging the brain to execute the mechanics of music works like a mental therapy. To his mind, it has all the elements of pranayama yoga, a form of yoga that stresses breath control.
The act of controlling the breath has a parallel brain response of calming our instincts for fear and danger. It's easy enough to see this in deliberate practices like yoga, but the same idea applies in many more time-honored practices: choral singing, Gregorian chants, even social music like bluegrass or blues derived from the chants and work songs that African slaves developed to help them tolerate oppression.
Music or evidence of music appeared fifty thousand years ago in that sudden flourish of evidence of cultural evolution that defined humans as humans—and ever since, music has loomed as a cultural universal. All known cultures and people make music. Yet all of this also suggests that we lose something when the crane's leg bone gets replaced by an iPod. We lose the benefits of sitting in a circle of fellow humans and driving the breath and beat that drives the music. [Emphasis mine]
As my friend said, Go Wild is worth reading—but not worth buying. If what I can only describe as bizarre spirituality—bizarre for a book that claims to be scientific—doesn't bother you, and if you can overlook the extremities, which are at their worst in the section on food, there are a number of interesting and worthwhile points.
My brother used to tell me that drinking orange juice was no better than drinking Coke, as it was no better than sweetened water.
Being a Floridian, that has rankled ever since.
It was brought to mind recently in a discussion with my nephew, the medical student, in which I heard him say that the recommendation for drinking juice was no more than two or three times a week. I may have heard the details wrong, because I don't see that when I look online for official recommendations, which are a bit more generous. Or it may be the newest medical-school thinking that hasn't yet been set in stone. But the upshot of the discussion was that whole fruits are good for you and should be encouraged, while fruit juice is bad for you, with no real benefits, and should be severely restricted. This opinion piece in the New York Times is an example of the bad rap juice is getting.
The doctors have good intentions, but I wouldn't be surprised if the real impetus behind this negative attitude towards juice comes from those who want to push soda consumption. After all, if orange juice isn't any better than Coke, why not drink Coke for breakfast, as the granddaughter of an acquaintance used to do?
The real question is: Why is juice so radically different from the whole fruit from which it is (supposedly) made, that the recommendations for consumption are polar opposites?
My answer is that what is called juice these days may have started as fruit, but has been so processed—strained, filtered, heated, added to and subtracted from, torn apart and put (somewhat) back together—that its source is no longer recognizable. Consider the following products:
- Oranges, freshly-picked from the tree, and reamed to extract the juice and much of the flesh
- Fresh orange juice that has not been pasteurized (I can buy this at local specialty stores, and also at Costco!)
- "Not from Concentrate" orange juice from the grocery store, which has been processed and pasteurized but at least looks like orange juice because it includes pulp
- #3 but without any pulp
- #3 or #4 with calcium added
- Orange juice from concentrate (John McPhee's book, Oranges, has a graphic description of what happens in that process)
- Orange juice drink, orange drink, orange-flavored drink, and other designations of something that may or may not have some real orange juice in it
- Tang and other pseudo-orange beverage mixes
The legal definitions are fuzzy—it's amazing what you can do to a product and still call it "orange juice"—and doctors rightly draw a line between #6 and #7, but say "orange juice" to the general public, and you could evoke thoughts of any of the above.
As far as I'm concerned, the list is in decreasing order of flavor. I suspect it is also in decreasing order of nutrition. But this definition of "juice" is so broad, even if you exclude #7 and #8, that it's useless. What do the doctors mean when they say "fruit is good, juice is bad"? Are they even considering how slippery the definition is?
This is orange juice.
It is juice I squeezed from oranges Porter picked from our own Page orange tree. Technically, the above statement is incorrect, because the Page orange is not a true orange, but a hybrid developed in Orlando in the 1940's that is 3/4 tangerine and 1/4 grapefruit. I should have said, This is citrus juice. I have no idea what the Food and Drug Administration would call it. I call it delicious.
Drinking this juice is not the same thing as eating the fruit, I'll grant. Some of the membranes are left behind in the juicing process. But a lot gets through, as you can see in this picture of the juice before I shook the bottle.
I'd say the experience is pretty close to eating the fruit. I acknowledge that the experience of drinking processed, grocery-store juice is radically different from that of eating fruit. However, the problem is not in the juice. The problem is in the processing, and the labelling.
Don't fight to eliminate juice. Fight to bring back real food!
The infamous Blue Screen of Death is all too familiar to my generation of Windows users. It may be that blue screens are now causing death in a different way.
This Popular Science article reports that prolonged exposure to blue light can cause irreversible damage to the cells that allow us to see. (And truly, I thought of the Blue Screen of Death analogy before I noticed that the article's author did, too.) That would be light from our televisions, computers, phones, e-readers, and even increasingly popular LED illumination.
Catastrophic damage to your vision is hardly guaranteed. But the experiment shows that blue light can kill photoreceptor cells. Murdering enough of them can lead to macular degeneration, an incurable disease that blurs or even eliminates vision.
Blue light occurs naturally in sunlight, which also contains other forms of visible light and ultraviolet and infrared rays. But ... we don’t spend that much time staring at the sun. As kids, most of us were taught it would fry our eyes. Digital devices, however, pose a bigger threat. The average American spends almost 11 hours a day in front of some type of screen, according to a 2016 Nielsen poll. Right now, reading this, you’re probably mainlining blue light.
Obviously, more research is needed before we panic about this. But maybe it's time I stopped putting myself to sleep by reading on my Kindle, or playing a move or two in Word Chums, or praying through our church's Prayer Chain list. They say you should turn off "devices" an hour before bedtime, because the blue light can keep you from falling asleep. That's never been an issue for me. But damaging my eyes? That's a much bigger issue.
So, a handful of people have gotten sick recently from eating salmonella-contaminated eggs from a farm in North Carolina. Salmonella, of course, can be a serious infection and is certainly not one even a healthy person wants to encounter. But who is writing the advice we are being given on how to handle these eggs should we be unfortunate enough to find them in our refrigerator?
Do not eat, serve, or sell these eggs; throw them away or return them for a refund, and be sure to disinfect the shelf on which they were stored.
Really? That kind of overreaction can only have been designed by hyper-sensitive doctors under the advice of their lawyers and malpractice-insurance companies. Why not just hard-boil the eggs? If you cook them until the white and yolk are both hard, you've killed the salmonella bacteria. Maybe I'd give them a couple of extra minutes, just because I can be a little paranoid that way.
And unless you're crazy enough to take your eggs out of the handy carton they come in and store them directly on your refrigerator shelf, I can't imagine why a shelf would need to be especially sanitized.
But hey, what do I know? I'm not a doctor, a biologist, a lawyer, an insurance company executive, or even a helicopter grandparent, so don't take this as advice.
Take it as yet another sign that common sense has been thrown out the window, and scare tactics rule the day—making us more and more inclined to miss the signal of an important warning amidst the noise of constant overreaction. Aesop warned over 2500 years ago of the dangers of crying "wolf."
Warning: sex stereotyping ahead. It's supposed to be funny, folks; don't take it too seriously.
How can you tell that men, not women, designed the birth control pill? Simple. I figured it out after reading Malcolm Gladwell's What the Dog Saw, in which he comments that it is not biologically necessary that birth control pills have an "off" week to induce menstruation; it was part of the design so that the woman's cycle would be more normal. But what is "normal" about menstruating every month? Young girls don't, older women don't, some top athletes don't, and more importantly, women who are pregnant or intensely breastfeeding usually don't, either. Here's the scenario as I see it:
Male researchers Let's see. Women who are pregnant don't ovulate, so if we manipulate a woman's hormones so that we mimic pregnancy, she won't ovulate, and can't get pregnant. This means we could have sex whenever we feel like it, without any sacrifice on our part, leaving the entire responsibility on women for whether or not they get pregnant. Yee-haw! But we won't really mimic pregnancy, in which a woman doesn't menstruate for at least nine months and sometimes two years or more, because, well, because it's natural for a woman to menstruate every 28 days.
Female researchers Let's see. Women don't menstruate while pregnant, and often don't while lactating, so if we manipulate a woman's hormones so that we mimic pregnancy, she need only menstruate once every year or two. Yee-haw! This means could go two years without experiencing the mood swings, intense pain, and mess? Bring it on! Wait, you say we ought to design this pill so that the fake pregnancy miscarries every 28 days? You must be C-R-A-Z-Y!
It was an irresistable headline: Nutritionist claims pizza can be a healthier breakfast than cereal.
I love breakfast. I could eat it for breakfast, lunch, and dinner. My current favorite morning meal is a large bowl of steaming oatmeal with dried fruit, though that may change with the weather.
Make that second-favorite. Pizza is always at the top of the list.
Blogger and dietitian Chelsey Amer caused a stir when [she announced] that a greasy slice of pizza is healthier than a bowl of cereal with milk. "You may be surprised to find out that an average slice of pizza and a bowl of cereal with whole milk contain nearly the same amount of calories,” Amer said. “However, pizza packs a much larger protein punch, which will keep you full and boost satiety throughout the morning."
Not that this is news to me, though it's nice to hear a nutritionist say it. The writer of the article, however, is less than enthusiastic, and spends most of his effort convincing us of ways to make cereal healthier.
New York-based dietitian Keri Gans says that cereal can be a perfectly healthy breakfast option — yes, healthier than pizza — as long as you’re smart about it. ... "If you choose the right cereal that’s packed with fiber, it may help lower cholesterol and control blood sugar. ... You could top your cereal with berries, which are rich in vitamins. ... you [can] work plenty of nutrition into your bowl — far more than you’d find on a dollar slice."
Well, sure, if you want to load the equation in favor of cereal. But you can do the same thing for the pizza. Skip the fast food version. Homemade pizza, whole-grain crust, good tomato sauce and cheese, lots of veggies.... But don't forget the pepperoni, if—like me—you consider it nearly essential to good pizza. Don't skimp on flavor, or it won't be satisfying and you'll eat more.
People tell me they couldn't move to Florida because they can't stand our bugs. Me, I'll take our giant cockroaches any day over ticks.
I grew up in Upstate New York. I spent much of my free time in the woods near our house, and hiked with my father all over the Adirondack Mountains. Never in my life did I see a tick of any sort until a visit to Connecticut after I graduated from college. Now, apparently, ticks are everywhere in the Northeast (and more). The worst a roach ever did to me was to scuttle into my bra when I was prone on the floor searching under the kitchen cupboards. The worst a tick has done to me was to give my little grandson Lyme disease, a far more serious, and much less amusing, situation.
Ticks freak me out. I don't know where this infestation came from, and I'm not happy about it.
But just when I started thinking that "extinction is forever" would be a great idea for all tick species, I read this: Oxford University researchers say ticks are a "gold mine" for new drugs.
It's possible that the extinction of any species, even the most apparently useless, annoying, or even dangerous, deprives us of some great, as yet undiscovered, benefit.
Brain on Fire: My Month of Madness by Susannah Cahalan (Simon & Schuster, 2012)
I enjoy reading medical stories, but they carry a risk: it's all too easy for me to look over my shoulder and imagine the patient's symptoms creeping up on me. It's a good thing that anti-NMDA-receptor autoimmune encephalitis is primarily a young person's disease.
This rare and bizarre condition looks for all the world like a severe psychiatric disorder, but occurs when something provokes a person's immune system to attack his brain. What, why, and how are still unknown, but it's usually curable, if caught and treated—a very expensive process—in time. Susannah Cahalan was the 217th person to be diagnosed with this disease, and if she had not been in the right place at the right time, would probably have been committed to a mental hospital for the rest of her shortened life. If she had had his strength, she could easily have played the part of the Gadareme demoniac.
Thanks mostly to being at a great hospital (NYU), and ending up (after several false starts) with just the right doctors, Cahalan made a full recovery. But while anti-NMDA-receptor autoimmune encephalitis and similar brain disorders are now much more likely to be caught than they were in 2009 when Cahalan fell ill, this is still a cautionary tale of the importance of second (or third or fourth) opinions, and of searching for physical causes for abnormal mental conditions. Autism and schizophrenia are just two of the diagnoses that are sometimes erroneously given to patients with these autoimmune disorders. Unfortunately, the specialized tests needed for proper diagnosis are currently too invasive and too expensive to be used routinely.
Brain on Fire is a gripping, well-written, and important book—even if, once again, I found myself regretting the demise of the censor's blue pencil.
I went to the doctor for a physical the other day. To be clear, I like my doctor and think that we finally understand each other reasonably well. But as part of the preliminaries, a nurse came into the room and started asking questions.
Nurse: Are you feeling depressed?
Me: No, but if I were, I wouldn't tell YOU.
Nurse: Have you lost anything important to you in the past year?
Me: Well, I mislaid my cell phone for a few minutes, but I found it again.
Nurse: Have you....
Me (interrupting): Look, just take my vitals and let me see the doctor. I came here for a physical, not a mental.
No, that's not what I said. I was meek and compliant, if somewhat confused by her sudden concern for my mental health. I make a point of not antagonizing someone who will later be jabbing a needle into my arm. But it's what I wish I could have said.
I like to think of the doctor-patient relationship as one in which I pay the doctor—with or without an insurance company proxy—to do for me what I cannot do for myself, because of his knowledge (medical school and experience), and his ability to access certain services which I cannot (medical tests, prescription drugs). More and more, however, I find the medical establishment taking on a paternal, authoritarian role, as well as poking and prodding into areas not part of the unspoken contract. For example:
- Psychological questions such as the above. A simple, "Do you have any other concerns?" should cover anything he thinks a physical exam might miss.
- Insisting that adolescent children be examined without a parent present. The only reason they want to do that is to ask the children questions they may not feel comfortable answering, and given the doctor's position of authority and respect, to my mind this borders on abuse. Schools do the same; I'll get to that later.
- Asking a young child if anyone smokes in his house, as happened to my nephew. If the child has any breathing issues, this is a right and proper question to ask, but of the parent. Not of the child.
Doctors, nurses, and other medical personnel: I appreciate your knowledge, your experience, your respectful and friendly manner, and your willingness to work with me for the improvement of my family's health. I hope you appreciate my cooperation, respect, and knowledgeable concern about health matters. But I need a partner in health, not a nosy nanny.
That incident with the medical profession reminded me of my greater concern: education. I won't go into all my experiences with the educational system—as student, parent, aunt, friend, and volunteer—but I long ago came to the conclusion that the school system, especially but not exclusively the public schools, is an even greater nosy nanny than the medical establishment.
Teachers, principals, school psychologists, and others from the educational system: I appreciate your skills, your experience, and your often genuine concern for my children. I hope you appreciate my respect, volunteerism, and knowledgeable concern for my children's education. But my family needs a partner in education, not a nanny.
- Teach my child important academic subjects. (This includes the arts, in case you think I mean only the 3R's.)
- Do not ask about his private life or the lives of his family members.
- Do not give him psychological or medical exams.
- Do not try to teach him ethics or moral behavior. Teach the rules of proper classroom behavior, by all means, but leave questions like, "When do you think it's okay to lie?" to the family—and to philosophy classes. Demonstrate ethical behavior by your own example, please—but not as part of the curriculum.
- Leave my child's feelings, emotions, and beliefs alone. They are his, and pressure on the part of an authority figure to reveal them is abusive.
- Don't feed my child. I will feed him breakfast and dinner, and send a bag lunch to school with him. It's none of your business whether the bag contains sprouted wheat bread with organic carrots and hummus, or McDonald's drive-thru fare, or a fluffernutter sandwich and Doritos.
- Don't be a babysitter. If my child is not actively learning, send him home. Contrary to what you apparently expect, I do not rejoice when the big yellow bus swallows him up in the morning, nor is my first thought when school vacation approaches, "What am I going to do with him under foot all day?"
If you've made it this far without giving up on me as hopelessly out of sync with modern society, let me assure you that I realize there are many families who welcome the school services I despise, and I can see why the public schools are considered a reasonable venue for providing them. But if we're going to do that, they really need to be provided on an opt-in, not an opt-out basis, just as you should be able to choose to receive special offers (known to many of us as junk mail) when you sign up for something, but the default situation avoids them.
By all means, offer before-school breakfast to students who need it, but don't make my child sit on the bus while waiting for the classroom doors to open. Stop using incentives and pressure to try to attain 100% participation in your school lunch program. Let an optometrist come in to the school and offer free eye exams, but get parental permission first. (I mean real, specific, informed permission, not a general release signed at the beginning of the year and without which the child can't attend school!) Make it very clear to the children that they do not have to answer questions that make them feel uncomfortable (math problems excepted); better yet, don't ask such questions in the first place. Provide counselling for individuals or groups if the parents assent, but stop the practice of sending whole classrooms to such sessions, especially without parental knowledge and informed consent.
I make it sound as if we had a terrible school experience, and that was not the case. Most teachers and administrators were helpful and respectful, even if they did consider us weird. But it took much more knowledge, time, and attention than most parents are able to give, to craft a school experience remotely serving our family's needs. Even so, a lot slipped through our hands, either because we didn't know what was going on, or because we had to choose our battles.
All too often, "partnership in education/medicine" means that we are supposed to endorse and enforce whatever the teachers/doctors decree. That is no partnership, and it is unacceptable. As long as the medical and educational establishments expect such to be the case, they should not be surprised to find people—and mostly bright, thoughtful folks they should want to be part of the mainstream—turning more and more to alternatives.
Since money changes hands in the transaction, it's tempting to consider doctors and teachers as our servants, and I'm sure their specialized training tempts them to view themselves as our masters. In the long run, however, a good, working partnership can achieve much more.
Goal #12 of my 95 by 65 project was to design five Life Playground Stations, inspired by Stephen Jepson and his Never Leave the Playground program. Five easily-accessible places and/or pieces of equipment that would combine exercise and fun. Others may prefer sports for that purpose—but this is my playground. It has to work for me. It has to be something I want to do.
The Pool Track This is by far the most used of all my Stations, and I'm surprised it took me this long to discover it. I've been walking for exercise for a long time—walking, and sometimes running. Occasionally I would walk in our neighborhood, but mostly my habit had been to join Porter and his running buddy at a nearby park. The park is pleasant enough, but the whole process was enough of an effort, and took so much time, that I only went three times a week.
Enter the Pool Track. I had started walking around the edge of our pool as a break for body and mind after a long session at the computer, and it grew from there. It really took off during a Personal Retreat when Porter was out of town, when I had determined to isolate myself at home for better focus.
Walking around and around the pool may sound boring, but it's not at all. I'm never just exercising. I've always been able to think, write (mentally), pray, or listen to lectures/audio books while walking (though not while running), but with the Pool Track I can do so much more. I can read books, I can do DuoLingo lessons, I can watch videos, I can talk on the phone. I can even play Word Chums games, though most Peak exercises require too much coordination. In short, I can do much of the work that I would otherwise be doing sitting down, but I'm not sitting, I'm walking. And most of the activities I do while walking can be done day or night.
Suddenly I found myself eager to take breaks from the computer. Because the Pool Track is right there, just a step out of my back door, there's no travel time, and best of all no prep time or recovery time. Even on the hottest Florida days, because I can exercise in short bursts, and go from air conditioning to air conditioning, I don't need to get miserably hot. And because I don't get miserable, and don't feel I'm wasting time, and find it easy to start and stop, I do it. A lot. Several times a day, every day. If it's not an especially busy day, my usual total is at least five miles, every day of the week. That's far, far more weekly exercise, and with more consistency, than I've done in years. For next year, Porter's going to make me a ramp/step combination for part of the track.
There's just one aspect of the pool track that makes me nervous: there's always the risk of a misstep plunging me into the water. I don't mind for myself, but I'd hate to test out my phone's water resistance. Perhaps the tiny thrill of risk adds to the fun, however.
The Pool/Brachiation Ladder This is a seasonal station, but a longish workout around the pool on hot days (half the year or more) makes it easy to jump in and do a few laps. At the end of our pool a horizontal ladder set up on cinder blocks serves as a brachiation ladder (monkey bars to the uninitiated), and between the two I manage to get in some regular upper body work.
The Balance Board This was a gift from Swiss friends, and I love it. It not only improves my balance, but gives my legs and core a workout, and it's easy to do while conversing or watching television. Whenever the challenge becomes too easy, I simply close my eyes for a whole new level of workout. I also view as an extension of this station my habit of balancing on one foot at random times, particularly if I'm waiting somewhere or standing around in conversation. This, too, becomes much more of a challenge with my eyes closed, though that exercise won't do in conversation—people think they're boring you.
The Juggling Balls I'm a bit reluctant to mention this because even though I purchased juggling balls two years ago, I still can't juggle. Acquiring skills requires practice, and even though I enjoy playing with the balls, it's been too easy to get out of the habit. But when I do remember, it's great fun. I still don't work much on the actual skills of juggling, but just tossing and catching them gives an all-round body workout, especially since I stoop and pick up much more than I catch.
The Mini Trampoline This is another station I don't make as much use of as I wish, but I have good hopes for it. We picked up the trampoline at a garage sale, and it's big enough for good exercise yet portable enough to fit in my office (barely) if I want to bring it in to the air conditioning.
The Fitness Ball Janet had a version of this ball, which she used as a desk chair. It is the latest addition to my Life Playground, and even though the instructions specifically insist it's NOT a chair, that's what I use it for. Not all the time; often I just want to relax in my comfortable swivel chair. But when I do use the ball, I keep moving, even while sitting, which exercise my core and keeps me from being so stiff when I get up again. They say that sitting for long periods of time is very bad for your health ("sitting is the new smoking") but let me tell you, an ageing body makes that point abundantly clear.
Am I completely satisfied with my Life Playground progress? No. It's far, far from what Stephan Jepson does. And as with most forms of exercise, I need to use them more frequently. But the setup is there, I enjoy them, and some have made a significant difference in my life. That's a very good start.
What's the worst part of prepping for a colonoscopy?
Wait. I thought I got over the stomach flu four days ago.
What's the best part?
Two days before Prep Day the diet restrictions are turned on their heads. All those things doctors are always telling us to eat or not eat? Forget about it.
Vegetables, fruits, and whole-grain anything are OUT. Steak, dairy, eggs, ice cream, chocolate, and white bread are IN. Who said gastroenterology was dismal?
Of course, the best part of the whole procedure is that I don't have to think about it again for several more years.
What's the coolest part?
You can stop reading now if this is TMI, but the coolest part was definitely that for the first time I had the procedure done without any anesthesia. I wish I had known of the option earlier, because it. is. so. cool.
A little background.
I don't like anesthesia. By that I don't mean I'm not grateful for its discovery, and its use when necessary. I just think it's overused. In normal childbirth, for example. And during dental work. I especially don't like general anesthesia, which is riskier when you get to my age. I need all the brain cells I can keep. But this is the first time I questioned its use for a colonoscopy procedure.
Before scheduling the appointment, I asked the doctor, more than half expecting him to say no. But he was fine with the idea.
On the day of the procedure, he still was fine with it, though the others in the office gave me every opportunity and encouragement to change my mind. That was a little nerve-wracking, since I'd never done it that way nor had I spoken about it with anyone who had. When the anesthesiologist asked if I wanted him to be there in case I changed mhy mind, I finally said I'd leave it up to the doctor: if he was afraid something might go wrong and wanted anesthesia available, I would agree, but otherwise I was sure of what I wanted. When a nurse asked what I was going to do if it hurt, I replied, "get through it."
The doctor must have trusted me, because I never saw the anesthesiologist again. Apparently I'm not the only one who forgoes anesthesia; it's just rare. And I warn you, it does hurt. But not nearly as much as childbirth, and it's much shorter. You don't get to move, though, and screaming is discouraged. But those breathing techniques never leave you, and the nurse was a great "childbirth" coach.
It's hard to say what I like most about not having slept through the process. Definitely high on the list was what I think it did for the doctor/patient relationship. (And by "doctor" I include all the other medical personnel, too.) I felt part of a team, working together to get the job done. I felt respected as a person and not viewed as an unconscious patient. We interacted throughout the procedure; the doctor explained what he was doing and I was able to ask questions.
The monitor was the absolutely coolest part. They let me keep my glasses on, and I watched from beginning to end (literally). I don't care how many crude comments some people make about where so-and-so's head might be positioned, there aren't many people who have actually seen the inside of their own colons. I have. It's awesome.
Watching was the most fun, but recovery was the most liberating. I wasn't fuzzy-brained. I was in control of my mind and body. Instead of the usual list of all the things I couldn't do for the next day or so (drive, sign legal documents, make important decisions, drink alcohol, eat certain foods), I left with no restrictions at all. I walked to the car instead of being wheeled out in a chair.
(Porter still drove home, and I'm taking the day off. No point in wasting someone's willingness to pamper you.)
Like natural childbirth and forgoing Novocaine at the dentist, skipping anesthesia in cases like this isn't for everyone. But if you're at all intrigued, I encourage you, whenever you're faced with a procedure involving anesthesia, to ask if it can be avoided. Likely the doctor won't suggest it himself—they are so concerned about keeping patients comfortable. But he may be fine with it. It's good to have options.
P.S. Happy Pi Day, everyone!
When it comes to paying out money, I know who "The Government" is. That's you, me, and all other taxpayers out there. Including those overseas who bear the burden of paying taxes to the Federal Government even if their money was earned totally outside of the United States. But that's another issue.
Even as our family watches carefully how our personal money is spent, so we try to be careful that the government's money is spent wisely.
Thus we were concerned when we received a bill from an insurance company we'd never heard of, for a health insurance plan we had not signed up for, assuring us that we owed $0.00 and the government had already paid the full premium of $1375.36 for the first month. I will spare you the details of all the hours Porter has spent on the phone trying to get this cleared up. How do you cancel a policy that can't be found in the system, but for which the government is paying out at the rate of over $16,500 per year? Finally, he wrote an e-mail to the Inspector General.
Mr. Inspector General Levinson,
I am not sure you are the correct person to send my issues to - but hope your office can point me in the right direction if you are not the appropriate channel.
I have two issues, one involving money paid out by the government incorrectly and one involving the difficulty in pursuing such questions via the healthcare.gov team and system.
First, I received a bill from "Florida Health Care Plans" for an ACA plan that I never signed up for, but rather was assigned to automatically by the ACA computers. No one at "Florida Health Care Plans" can tell me how this came to be. Further they say they cannot cancel the policy under the law as they can only do that if healthcare.gov sends them a notice to do so. Further they have no connecting key that can be used by the healthcare.gov team to show how this policy came into existence. When I called the ACA they could not find any trace of this policy with "Florida Health Care Plans." The only policy they show for me is the CORRECT policy I signed up for myself with "Florida Blue," an entirely different company despite the similarity of their names.
The bogus bill shows that the government will pay "Florida Health Care Plans" $1375.36 per month for each month in 2017. I will owe nothing. In other words my payments are to be zero each month. This is the rub. If a "policyholder" does not pay his premium his insurance is cancelled - and the payments from the government to the insurance company would at least stop. However, since I owe nothing each month on this policy there is no trigger to automatically stop payments! The government will be out over $16,000 by the end of the year paying on this bogus, useless policy.
Second issue. Healthcare.gov is not following the ITIL (IT Infrastructure Library) standards. I understand that all federal computing systems are supposed to follow ITIL. When I was a consultant for IBM on the Fannie Mae account this was certainly the case. ITIL provides that all issues should be recorded and a ticket or issue number assigned to them. Further, this ticket number should be given to the person who reported the issue. In my case I should have been given a ticket number so I could reference it in future calls. I was told by the supervisor of supervisors (which was as high as I was permitted to go in my telephone inquiry with healthcare.gov) that no ticket numbers are ever generated, but rather I should wait for a call back from the "Advanced Resolution Center" in 5 to 7 days. I am very doubtful this will happen as in 2016 I got an incorrect "Corrected" 1095a and went through the same process without ever getting the issue resolved.
Please advise how to proceed with these two issues.
Or, I should say, he tried to write the Inspector General. But having sent this to their published e-mail address, he received it back with the following explanation:
Delivery has failed to these recipients or groups:
Your message couldn't be delivered to the recipient because you don't have permission to send to it.
Ask the recipient's email admin to add you to the accept list for the recipient.
For more information, see DSN 5.7.129 Errors in Exchange Online and Office 365.
So he respectfully requested to be added, using the e-mail address email@example.com—the sending address for the above rejection. The reply?
How much time would you spend trying to save the United States $16,500? How many bogus charges like this do you think are being made? How many of the people in whose name the government is being billed will put any effort into trying to correct a bill on which they owe nothing?
My 95 by 65 swimming goal was very modest: Swim five miles, and brachiate one mile. The reason brachiation was part of the swimming goal will be more obvious when you see the ladder configuration, here demonstrated by some neophytes who are much more fun to watch than I am.
I didn't officially start till July of this year, when I realized that both travel and winter weather would take away a large chunk of the months remaining till my 65th birthday and I'd better pay attention to this goal. But as of yesterday, I'm up to 5.4 swimming miles and 1.3 brachiating. More important, I've established a daily habit: eleven laps (0.1 miles) of the pool, and six of the ladder (0.025 miles). Little steps add up over time!
Now we'll see how long the habit lasts, as the water temperature drops. Thanks to my encouraging daughters, who gave me the new perspective, when I do stop for the winter I will not think of the habit as broken, but rather seasonal, ready to begin again in warmer weather. After all, one does not consider the "skiing habit" broken just because the skis are put away at the end of winter!