Wednesday, August 07, 2019

Adventures in cerebrospinal fluid leakage: part 2

Image result for csf leak

In an April post I discussed my wife's rare (or at least rarely diagnosed) spinal condition known as spontaneous cerebrospinal fluid (CSF) leak. The resulting intracranial hypotension led to severe headaches, tinnitus, hearing disparity, and mental fog.

My post described more than half a year of treatments that required many MRIs of various types, a month of bed rest, and two epidural blood patch procedures. Today I am reporting that all of these efforts and the expenses incurred relative to those approaches haven't helped much.

Curious about what kind of beneficial treatment might be available, my wife undertook some serious research. Eventually she discovered that there are three clinics in the US that specialize in treating CSF leaks: Duke University Hospital in North Carolina, Cedars-Sinai Medical Center in Los Angeles, and Stanford University Medical Center in Stanford, CA.

Doctors from each of these clinics participate in the nonprofit Spinal CSF Leak Foundation. As luck would have it, the foundation was holding its annual LeakWeek conference in early June. My wife took the opportunity to watch many of the online sessions of the conference. She saw a glimmer of hope that there was somebody out there that might be able to help her.

After research and consideration of various factors (including which clinics and doctors are covered by our insurance), my wife decided to reach out to the clinic at Cedars-Sinai. They requested that we provide every scrap of medical record (including images) of any kind for the past 10 years. It took awhile to pull all of those records together and get them shipped to the clinic. Following extensive reviews of my wife's medical records, the clinic agreed to take my wife's case.

This led to numerous phone calls and emails. One day my wife answered a call from the clinic, expecting to speak with a member of the clerical staff. She was surprised to find herself speaking with the lead doctor at the clinic, who is perhaps the world's leading expert in spontaneous CSF leaks. They spoke for more than 15 minutes about the details of her case.

Initially we were told that we could expect to be scheduled for sometime in August for a three-day series of appointments that would include additional imaging, consultation with doctors, and likely surgical treatment. But later the clinic called saying that they had a cancellation in July and asked if my wife wanted to take that spot.

Image result for cedars-sinai medical centerBefore long we found ourselves winging our way to LA. Can you say, "traffic nightmare"? Why in the world does anyone want to live there? (Apparently, more than 10 million people do want to live there.) Our hotel in West Hollywood was, um, better than a Super 8, I guess, although; it appeared to have been built in the 1930s and probably spent many years as a wino flophouse before being renovated. For the rate we paid you could get very fine lodging where we live.

The same day we traveled to LA, we spent many hours at the imaging center at Cedar-Sinai for multiple extensive MRIs. I don't know how late that place is open. Patients were still arriving at the imaging center when we left around 9:30 pm. The neighborhood in which our hotel was located, which was only a mile or so from the medical center, felt uninviting at that time of night.

On our second day in LA we had some time to kill before meeting with the doctor, so we visited the La Brea Tar Pits, which was both fascinating and smelly. (The tar pits are still actively bubbling up to the surface.) We also had some time after the doctor appointment, so we visited the Los Angeles Temple, which was closed for its semi-annual maintenance. But the visitor center was open. Despite these diversions, we weren't in LA for any kind of sightseeing. We only went there for medical treatment.

When we met with the doctor he explained that doing two blood patches at different locations in the spine was likely to permanently resolve my wife's CSF leak issues. At least, he suggested that it was successful for 90% of patients with similar scan results. If it ended up not working well, she would be among the 10% of patients that would require more invasive imaging and probably more invasive surgical approaches. The doctor was confident that if these initial procedures didn't solve the problem, a second round would do the trick.

Image result for bored guyWe returned to the medical center on our third day in LA and spent roughly 11 hours there. I was allowed into the operating room until they were ready to begin sedating my wife. This blood patch procedure was much more intensive than my wife's previous blood patches. Following the procedure my wife spent some six hours lying in various positions that were designed to enhance the healing process. My wife was instructed to go directly to bed at the hotel, only getting up to use the restroom for 60 hours.

That was pretty boring for me. While my main job was to see to my wife's needs, I kept having to escape the room. I walked around the busy neighborhood during daylight hours. Despite the number of homeless guys sleeping against buildings at the edge of the sidewalk as countless people walked and drove by the noisy zone, I was only panhandled twice.

The next day brought a lot of nausea from the general anesthesia and a nasty headache, which we deduced was now due to high intracranial pressure. They said that the procedure could cause high pressure for a day or so. We called the on-call doctor and received instructions for my wife to drink dandelion tea. Fortunately, there was a swanky organic grocery store just up the block, so the tea was easy to obtain. My wife's condition improved the day after that.

Image result for delta boeing 737When my wife got up to get ready to travel back home on our last day in LA, she was doing better. Her hearing disparity was gone. But she wasn't anywhere near 100%. The trip to LAX, the hours in the busy airport, the noisy flight back to SLC (we were seated near the engines), and the drive home in rush hour traffic didn't help her condition. But she was undeniably better than she had been before we undertook the trip.

Unfortunately, within a week, my wife's condition had pretty much relapsed to where it was before we undertook the trip. My wife is apparently among the 10% for whom the procedures didn't work well. To top it off, the bills for the treatment amount to around $100K. The rate allowed by the insurance is closer to 40% of that. Nobody really pays the exorbitant list price. It's just part of the dumb pricing game played by the medical industry. Our portion of the "allowed amount" is plenty, but I'm glad we have insurance, even if they do play pricing games.

The clinic has called and spoken with my wife. They want to let things settle for another couple of weeks before checking on progress again. My wife is under orders to take it very easy. No lifting of anything more than 10 lbs. No twisting of the spine. Lots of reclining. Then the clinic will assess next steps. But we have already been told that the recommendation will likely involve another three-day round that will include more invasive imaging and more invasive surgical procedures.

Image result for crossed fingersWe have learned a few things from this experience. One is that decent lodging in LA can be expensive. But we have heard that there are some decent AirBNB places that are reasonably priced. We will consider other options and pay closer attention to the neighborhood next time around. As to whether another round of treatment will be successful or not, we will just have to keep our fingers crossed.

Thursday, May 02, 2019

What is awesome?

Is anything really awesome anymore? If so, what and why? defines awe as "an overwhelming feeling of reverence, admiration, fear, etc., produced by that which is grand, sublime, extremely powerful." Awesome is defined as "causing or inducing awe; inspiring an overwhelming feeling of reverence, admiration, or fear."

Ammon Shea, author of  Bad English: A History of Linguistic Aggravation, notes in this post that awesome originally "referred to feelings of severe fear or dread." It pretty much paralleled the word awful. Both words come from the root awe.

Although the word awesome has evolved to a generally positive connotation, most official definitions still suggest that awe is an overwhelming emotion. But Shea notes that today awesome is often "used as a general purpose exclamation of approval."

When we try to bolster someone's confidence by telling them that they are awesome, we don't usually mean that they are literally astounding or breathtaking. We mean that they're OK. When we use awesome to express mild approval of anything, we leave ourselves with little terminology to apply to true awe.

That doesn't mean that awe does not actually exist. Pretty much everyone has at some point experienced overwhelming feelings of reverential wonder due to an encounter with something truly "grand, sublime, [and/or] extremely powerful." It may have been a natural wonder such as a spectacular waterfall, an eagle snatching its prey, or even a small complex insect. Maybe you listened to a grand musical concert, were present for the launch of a space rocket, or watched a truly astounding athletic performance.

Weber State University professors Luke Fernandez and Susan Matt write in this Standard Examiner op-ed on the topic of the human emotion of awe. After a decade of research, they "find it difficult to say categorically that awe is rising or declining." But they "can say it’s changing shape."

The professors note that while past generations often found awe in connection with nature and Deity, our modern culture is more often awed by its own inventions and technologies. Comedian (and sexual predator) Bill Cosby used to quip that when God created a world and all things on it, he called it "good" (see Genesis 1). But humans create a skyscraper and say, "It's AWESOME!!!!" The extension of this is, "We're AWESOME!!!! I'm AWESOME!!!!"

In "the raw, surging power and ambition of humanity" where we look mostly within our own human constructs and technologies for inspiration, access to the divine characteristic of humility seems to diminish. We become like the brawny bodybuilder admiring his physique in the mirror at the gym, heedless of his own arrogance and limitations.

Fernandez and Matt call for us to look to nature, the god of the modern hippie secularist religion, for inspiration. Most who worship God see nature as God's creation rather than as divinity itself. Indeed, all realms of God's creation, whether they be as large as a universe or microscopic "are kingdoms, and any man who hath seen any or the least of these hath seen God moving in his majesty and power" (see D&C 88:41-48). Nevertheless, nature can inspire awe and wonder. Those who worship God ought to recognize a fiduciary responsibility to care for God's magnificent work.

But a humble disciple should also be able to see evidence of the divine in the works wrought by humans who they believe are created in God's image, including the technologies, aircraft, buildings, and roadways denigrated by the good professors. I doubt the professors have much real desire for a world that lacks these amenities. Like most who believe in actual Deity, they are likely looking for some kind of balance; although, the definition of balance may differ greatly between viewpoints.

So, what about awe? Fernandez and Matt suggest that "we are suffering from what one clever psychologist dubbed A.D.D. — Awe Deficit Disorder." Maybe. But it seems to me that humans are designed to seek out the awe inspiring. Why is Yellowstone National Park crammed with visitors from around the globe each summer? Why do people tune into the Olympics or attend grand concerts? Why do tourists go to the top of the highest buildings in the world? Why was the world saddened by the fire at Notre Dame Cathedral? Why do people pray or attend church? Why do we marvel at the tiny fingers and toes of a newborn?

Perhaps humans seek out these kinds of experiences because their daily lives are so lacking in awe, unlike the earlier generations favorably painted by the professors as living in simpler times and experiencing wonder more often due to their close contact with nature. Or maybe the awe moderns experience isn't as minimal or as awful as the good professors would have us believe. Maybe the book they are touting amounts to little more than virtue signalling to the like minded.

Then again, perhaps we are so surrounded by factors our predecessors would have considered truly awesome that it becomes too mundane for us to experience its wonder.
We cannot dictate to others how they ought to experience awe. What inspires me may not inspire you and vice versa. A hike along the Teton Crest may bring rapture to one and simply rocks and blisters to another. An interpretive dance may inspire awe in one and revulsion in another. Time kneeling at an altar may seem sacred to one but simply boring to another.

While I am in favor of returning the word awesome to its meaning of inspiring overwhelming awe, I suppose that it will continue to be watered down to mean anything mediocre or better. I am also in favor of individuals regularly experiencing true awe in ways that are meaningful to them. I suppose that some of what people find inspiring will mystify me. But that's their business, not mine.

Tuesday, April 02, 2019

Brain drain for real: Adventures in cerebrospinal fluid leakage

A few months ago my wife began experiencing a nonstop headache that became increasingly severe over the space of a week and a half. Having experienced tension, sinus, and migraine headaches with some regularity throughout life, my wife is very familiar with headache treatments and their relative effectiveness. But nothing she tried eased the pain at all.

Eventually my wife began experiencing tinnitus and an odd hearing disparity, along with cognitive fog. My wife visited the local instacare one day when she was at her wits' end. The doctors there said that an MRI was needed but that "they" (whoever that is) don't like it when instacare doctors order MRIs.

Due to my wife's persistence, an MRI of the brain was ordered anyway. Then she called the imaging center and pestered them. Conveniently, the imaging center had a cancellation so that my wife was able to get her MRI done later that evening. We perused the results as soon as we knew they were available and discovered that the observations were consistent with intracranial hypotension.

The information we read online about this condition seemed rather alarming. At this point the instacare folks said that this was outside of their area of treatment and that my wife needed to see a neurologist. But due to the way things work in our heavily regulated, insurance focused healthcare industry, my wife would need a referral from her primary care physician.

The whole reason my wife had gone to instacare was because her primary care doctor was out of town for a couple of weeks. She ended up working with the office staff of one of the doctors who was covering for her doctor. It's a good thing that doctor was not physically within reach when a staffer told my wife that the doctor didn't think the finding was significant. She would have reached through the phone line and throttled the guy.

In reality this doctor isn't a bad guy. Let's just say that he comes across as more detail oriented than patient oriented. And let's just say that my wife was persistent enough to get that doctor to refer her to a neurologist. It still took several days to see the neurologist after taking the first available cancellation spot.

During the visit we were pleased that the neurologist had gone to the trouble to personally analyze my wife's MRI. Since intracranial hypotension is generally caused by a cerebrospinal fluid (CSF) leak, the neurologist carefully questioned my wife to try to determine the cause of the leak. Spontaneous CSF leaks are considered very rare (see National Organization for Rare Disorders discussion). But all indications were that this is exactly what my wife was experiencing.

The neurologist explained that he understood that most spontaneous CSF leaks can heal up on their own. He ordered four weeks of strict bed rest accompanied by relatively high doses of caffeine. It turns out that caffeine's vasoconstriction properties can help alleviate some CSF leak symptoms, as can lying down. Painkillers are completely ineffective for this condition.

My wife felt somewhat OK while lying down and taking caffeine. She could get up to take care of necessities, but she couldn't stay up for long before the nasty headache returned. That was a terribly boring month for my wife. She isn't much into watching TV. She loves to read but the cognitive fog she was experiencing made that difficult.

When a month of bed rest yielded no positive results, the neurologist ordered an extensive MRI of the spine. Upon reviewing the results he ordered an epidural blood patch procedure. In essence, they suck some blood from your arm and inject it into the epidural space of the spine. It is supposed to work like slime in a bicycle tube to form a clot to patch the leak. But it costs $6,000 more than a bike tube repair.

The blood patch was helpful. My wife was soon functional, but far from 100%. In follow up appointments with the neurologist it seemed clear to us that his expertise in my wife's precise condition was quite limited. Our research suggests that this is common. Very few neurologists have knowingly interacted with anyone experiencing a spontaneous CSF leak.

The UK-based CSF Leak Association explains that spontaneous CSF leaks "are not rare, yet are generally under-diagnosed; misdiagnosis of migraine, sinusitis and other headache disorders is common place...." Specialists in the condition believe that it is far more widespread than understood by the medical community and that ignorance of the condition and its treatments is rampant among healthcare professionals.

A couple of months after the blood patch it became clear that my wife was experiencing more CSF leaking. It seemed obvious that another blood patch was needed but the neurologist wanted more MRIs to get a better idea of what was going on. This chagrined my wife. Even with decent insurance, MRIs are not cheap and she couldn't imagine what benefit additional imaging would provide.

Hospitals use MRI machines like cash printing presses. Last year Forbes reported that "the national median network rate for a scan at a freestanding center is $504—a third of the $1,567 rate in a hospital." Which is why hospitals and their industry compatriots work to squeeze out private imaging centers. Moreover, a full set of MRIs covering the brain and the spine amounts to four images. So multiply that $1,567 by four every time my wife makes a trip to the imaging center. Ouch.

Thanks in part to the MRIs and the blood patch, for the first time in our lives we were able to take advantage of the medical expense tax deduction for last year and we're shaping up to repeat that performance this year. That's small consolation. Since you can only deduct the amount of qualified medical expenses that exceed 7.5% of your adjusted gross income, any tax benefit covers a tiny pittance of actual out of pocket medical expenses.

We didn't want to pay for more MRIs but the neurologist would not budge on the requirement for a third round of MRIs. The thinking was that locating the leak source would make the second blood patch procedure more successful; although, the doctor had told us that even with the best imaging they can't find the actual leak location in 80% of cases.

The third round of MRIs revealed nothing new, which made my wife even less happy about incurring the related expense. Still, the neurologist ordered a second blood patch. But when we went for the procedure a physician's assistant explained that the neuroradiologist who was to perform the procedure wouldn't do it until my wife had yet another set of MRIs that were tuned to look at fluids. I didn't even know there was such a thing as a neuroradiologist until that moment.

This fourth round of MRIs revealed a number of perineural cysts (aka Tarlov cysts) on the spine but there was no clear indication of where the current leaks were. The doctor was especially suspicious of a very large cyst near the base of the spine. When we took my wife in for the rescheduled second blood patch, the doctor took us into an alcove that had three large computer screens. He rotated the images around to show different angles and slices so that we could see what he was seeing. He called my wife's case very unusual.

The second blood patch temporarily caused intracranial hypertension. But after a few days my wife was doing much better and was much more functional. In a follow up appointment the neuroradiologist suggested that no further treatments would be helpful unless significant leakage is once again detected.

The doctor explained that my wife must appreciably alter her lifestyle so as to prevent rupture of any of the multiple cysts on her spine. She must avoid anything strenuous and any kind of motion that might cause problems. No riding on bumpy roads. No picking up anything heavy, including small children. Only very light yard work or housework. All bending must be undertaken with great care. Etc.

Even extreme care will not guarantee freedom from problems. It is believed that the large cyst near the base of my wife's spine acts as a CSF reservoir. The longer my wife is upright the more CSF drains into the reservoir, causing brain sagging which results in nasty headache, hearing problems, and cognitive issues. Caffeine can help. But the real thing is a significantly different lifestyle than she has been used to.

We aren't complaining. Many people deal with far worse conditions. This isn't fatal; just unpleasant. We are learning more about spontaneous CSF leaks, perineural cysts, and other factors surrounding my wife's condition. We will see where this adventure takes us.

Tuesday, March 19, 2019

Affirming your way to your own goals, not mine

In my last post I wrote about how I dropped 70 lbs. to achieve a long-term healthy lifestyle. Last month I wrote about—and defended—those who choose to follow less healthy lifestyles. On the surface these two posts may seem at odds with each other. Let's see if I can square that circle.

Let's start by looking past the surface of my last post. A quick read might make that article look like a vain self congratulatory promo for health consciousness. In reality, I was writing about ways to achieve goals that are important to you by highlighting my successes in accomplishing objectives that have been important to me.

The principles I outlined can be applied to your own ambitions, whatever they may be. The beautiful thing is that your aspirations don't have to look anything like mine.

I know and love a couple of people who like to show their care for others by introducing them to things that they like themselves. The underlying belief is that if they like something, everyone else must like it too. It seems to blow their minds when someone is less enthusiastic about something than they are.

Like Dr. Seuss's Sam-I-Am from Green Eggs and Ham, when these folks encounter someone who doesn't care for something they savor, they are certain that dogged (often annoying) persistence is the appropriate response. Those with authoritarian leanings have no problem also considering coercive measures.

But unlike Seuss's Joey who ultimately discovers his enjoyment of green eggs and ham, people in real life often do not come to love things that they are pestered about trying. People have diverse preferences, and with the exception of the political realm and sports fandom, that's usually just fine.

So it is in this case. You do not have to be fanatically invested in the worship of carnal fitness to find some benefit in positively changing something about yourself by positively changing your internal picture of yourself. I fully agree that physical fitness isn't the be all and end all of human happiness. Nor is longevity, as I reminded each time I visit my mom's elder care facility.

What is something you want to change about yourself? Go back and read my March 14 post to see if there are any principles there that might be beneficial to you.

Now, it's entirely possible that the affirmation approach I mentioned in that blog post is nothing more than self delusion. It might include confirmation bias that gets adherents to ignore system failures while paying outsize attention to coincidental successes, much as gambling works for habitual gamblers. Naysayers note that there are no studies that back up the claims of affirmationists; just testimonials, as is often the case with herbal supplements.

Dilbert creator Scott Adams once agreed that his brand of affirmation is probably just a form of self hypnosis. But he then noted that the happiness and satisfaction his affirmations have brought him are real enough to keep him doing it. Why should he care if the results might not be scientifically validated when his life is happier?

#1 New York Times best-selling author Pam Grout has also successfully employed affirmations. In this July 2016 blog post she writes about Adams' approach to affirmations. She notes that Adams started out being skeptical about affirmations but figured the cost was low enough that he would try it out, only to encounter success after success. A date with a dream girl, investment success with no experience, scoring exceptionally high on the GMAT with no preparation, etc.

In his book How to Fail at Almost Everything and Still Win Big, Adams explains how he recovered from the rare (and thought to be incurable) disease of spasmodic dysphonia by using an affirmation. It's worth reading the book to get this story. In fact, Adams cleverly scatters the story throughout the book, leaving a tantalizing trail that requires you to read the whole book to get the full tale.

In the end, Adams confesses that a dispassionate observer might conclude that his affirmation played little discernible role in discovering the expensive and unusual treatment that led to his recovery. But in Adams' mind the series of events that led to this result would not have happened without his affirmation.

I have likewise used affirmations to good effect and I'm far from the only one. This cold thinking atheist says that affirmations helped him triple his income over a four-month period. Writing about the "astonishing" coincidences, he says, "I think that when you write a goal every day 15 times, your brain starts paying attention to the opportunities around you."

Can affirmations work to help you achieve your goals? There's only one way to find out. Give it a shot. The cost of doing affirmations is pretty meager. You have very little to lose and much to gain. Try it out. Post your results.

Thursday, March 14, 2019

As a man thinketh in his heart...

As I type this I am wearing jeans with a 31-inch waist. They fit comfortably and feel good. Why is this significant? Because when I was 27 years old I was wearing jeans with a 43-inch waist. And they were way too tight. That's right, the pants I wear today are a full foot smaller around the waist than the pants I wore back then.

Growing up chunky
I grew up somewhat chubby. I was never much interested in athletics or fitness. As a result I was relentlessly teased by peers and loved ones. Mind you, I wasn't obese, just a bit overweight and not very confident. Every day my family members and friends sent me countless overt and subvert messages impugning my corpulence. Even attempts to be nice about the matter often came across as back-handed compliments.

Incessant messages implying my inferiority due to being somewhat overweight deeply impacted my psyche. I subconsciously assumed that others would like me better, and that I would like myself better, if only I were skinnier. This is a faulty basis for self esteem. Those who love you love you. If they would love a trimmer you better, maybe their brand of love is just a shallow imitation of the real thing.

Fat shaming kids
Besides, studies show that fat shaming succeeds in making people feel bad but fails at improving their physical health. In fact, it reinforces the self image of being overweight which results in increased obesity. So fat shaming literally works to harm both the mental and physical health of the victim. What really works is addressing each individual's psychological needs.

My first serious weight loss regimen occurred when I was 16 years old, the summer I spent planting pineapples in Hawaii. Thanks to the careful coaching of my crew supervisor, Trace Sweeten, and day after day of hard manual labor, I slimmed down five inches around the waist that summer. I came home tan and trim with a mop of sun-bleached hair.

It didn't last. My next weight loss effort came during my mission to Norway. This was successful thanks to regular encouragement from Elder Jerry Humphreys and Elder Todd Hatch. My next weight loss program began about three years after I returned from my mission when some ladies in my local congregation started an aerobics class. This worked to maintain fitness but it didn't cut much fat.

Well shy of my largest
Getting heavy
After getting married my weight grew steadily along with my waistline. One Christmas my parents took me to a men's clothing store to buy me a new suit coat, given that none of my suits fit any longer. When the clothier measured me he said that I would need a size 51 jacket. The jackets hanging in my closet back home were size 41.

I stood in the clothing store thinking about my expanding corpus. The problem was that my girth gain trajectory wasn't slowing down. If I got a size 51 jacket, how long would it be before that coat no longer fit? Something had to change to improve the situation. I worried that if this continued I'd ruin my health and be dead by age 35.

Not long after that I was watching an infomercial on TV late on a Saturday morning. (Yeah, that's pathetic.) They were hawking a weight loss program billed as The Neuropsychology of Weight Control. It had a 60-day money back guarantee. So for the first — and last — time in my life I bought something from an infomercial.

Changing my mind → changing my body
I dove into the program full bore. Within 60 days I had lost more than 20 lbs., so I wasn't going to send it back. Within a year I had lost a total of about 60 lbs. One of the features of this program was self imaging to change one's self perception. It taught that becoming permanently trim in body required that you first had to trim that body in your mind.

This worked for me. It required fanatical devotion to the program, but it worked. Eventually I was able to fit into my old suits and the same clothing I had worn at age 21. With a lot of effort over the years, I dropped another 10 lbs. Then my clothes were too large. But I didn't get new trim fitting clothes because I guess I still envisioned myself just a bit overweight, as I had been through most of my formative years.

One day last year, my wife and I were wandering around downtown Salt Lake City with my brother and sister-in-law looking for something to do between my nephew's wedding and the wedding luncheon. My brother suggested that we drop into a clothing shop that had a track record of selling nice stuff that was likely out of my price range.

We were just looking for a diversion. But soon one of the salesmen had me trying on the nicest fitting, best feeling dress shirt I have ever encountered. It was $260—for one shirt! He had me trying on a suit jacket that fit and felt amazing, promising that he could get me into a suit for "just $1,200." He noted that everything I was trying on was "slim fit," made for trim guys. Noting my physique, the man asked, "Why are you wearing full cut clothing?"

Although we left the shop without buying anything, the experience left me with a new perception of my body shape. I had been a slim fit guy for years; I just hadn't known it in my head. My wife and I have been retooling my wardrobe since then. It turns out that decent slim fit clothing can be had at frugal prices. Maybe these duds aren't as nice as the $260 dress shirt I tried on, but they're good enough at a fraction of the price.

To be honest, I'm still fighting the battle against fat gain after all of these years. It requires continuous effort. I frequently deny myself fare that tempts me and I work out daily, even when I don't feel like it. But that effort has become part of who I am. It's what I do because that's how I see myself in my mind.

Affirming mind change
Dilbert creator Scott Adams has written about affirmations in several of his books and in blog posts like this one. Although he doesn't believe in magic, Adams writes, "The idea behind affirmations is that you simply write down your goals 15 times a day and somehow, as if by magic, coincidences start to build until you achieve your objective against all odds." He offers several rational potential explanations for how affirmations might work.

In other places Adams has said that writing the affirmation isn't completely necessary. It can be verbal or even nonverbal. I have tried written, verbal, and nonverbal affirmations. Like Adams, I have for the most part realized the goals I have repeatedly affirmed to myself. This approach has failed when I have not been fully committed to the goal for one reason or another. One of my affirmations has been, "I will be vibrant, trim, and athletic." And now I am.

Adams seems to be more a fan of goal oriented affirmations than of simple positive affirmations, such as, "I am amazing!" I too have found that affirmations that are specific and measurable work better for me than ethereal concepts. How do you know when you have achieved amazing? Here is an example how affirmations have worked for me.

Healing my elbow
Several years ago I injured my right elbow. I never knew how it happened; it just started hurting one day. Nothing I did seemed to help. I even went to a sports medicine doctor without getting much help. After more than a year of pain I started repeating to myself multiple times daily, "My elbow will be healthy, strong, and pain free." I scoured the internet for help and found lots of conflicting advice, even among professionals.

A few weeks into my elbow affirmation, my wife briefly described my symptoms to a physical therapist while visiting him for a different issue. He sent home a sheet with simple instructions for a couple of exercises I could do. The therapist also told my wife that I needed to avoid picking up anything with my palm facing down until the symptoms cleared up. This included doing anything that mimicked lifting palm down, including cycling. This turned out to be a critical factor for me.

After implementing the physical therapist's counsel, it still took months for the elbow to heal well, and even longer for it to reach 100%. But after just a couple of weeks I started to see real improvement in my elbow for the first time in more than a year.

How closely was this related to my affirmation? No clue. But I choose to believe that it played an important role. Perhaps my repeated affirmation caused my brain to notice things, accept information, or create conditions in ways that otherwise would not have occurred.

Change yourself by changing your mind
What am I trying to say here?
  • The human mind is very powerful, sometimes more powerful than we imagine, sometimes less.
    • No, you can't really do anything you decide to do. Some things are outside the realm of possibilities. In one VeggieTales episode, Larry the Cucumber is told that he can't actually become a chicken, no matter how much he desires it. And no matter how much you might want it, your chances of becoming president of the US are pretty low. (Of course, I used to say the same thing about the current occupant of the White House.)
  • Each of us has a picture in our head of who we are, what we look like, how we behave, etc.
  • That picture is influenced by both nature and nurture.
  • The messages we unthinkingly pass to those closest to us (including ourselves) can have far reaching impact on self image, both positive and negative.
  • Thus, we need to take care about the messages we send to ourselves and to others.
  • Sometimes the picture in your head can be inaccurate.
  • Outside influence can improve this picture when the message seems close enough.
  • The opposite is also true. Simple messages can damage your self image when the message resonates enough.
  • You can deliberately send yourself messages to change the picture of you in your mind in positive and healthy ways.
  • Our mind causes us to work to become the picture of us it believes.
As mentioned earlier, I feel pretty good about my current physique. It is actually quite difficult to even picture myself as the heavy guy I once was. That person is just too far away from the me I see in my head. But it took years of real effort to adjust that picture. As mentioned above, some of that picture wasn't adjusted until after my body had already changed.

Today I am enjoying slim fit clothes that fit me better than the clothes I was wearing just a few months ago. This is possible because I have finally adjusted the picture in my head accordingly. I feel pretty great for an old guy with Multiple Sclerosis who used to be quite overweight. And it all started with changing my mind.

To me this is all a great miracle in which I see the hand of God. I feel immensely blessed, even while grappling with a variety of challenges that I am sure will ultimately be for the best.

Want to change something about yourself? Change the picture of yourself in your head. There are ways to do that. The rest will follow. Give it a shot. What have you got to lose?

Tuesday, March 05, 2019

Four lost words from my patriarchal blessing

Ever since receiving my patriarchal blessing as a teenager, I have felt that the blessing was a gift to me from God. For the first few years after receiving my blessing I would occasionally get out a printed copy and study it, so I always had an idea of what the blessing contained, even if months went by without me reading it.

At one point I determined that I needed to take my patriarchal blessing more seriously. Since it was personal scripture, I typed it up in the same format as my scriptures, divided columns and all. Each paragraph became a verse. I wrote a header that looked very much like section headers from the Doctrine and Covenants. I put this page in my scriptures where I could easily refer to it. This helped me study my patriarchal blessing more often.

I have been granted a gift for memorization. I don't have perfect memory; I have to work at it. And if I go too long without reviewing something I have memorized I tend to lose some or all of it. But one day I realized that I likely had the ability to memorize my patriarchal blessing. Since making that initial effort years ago I have tried to review my blessing about once each week. This usually occurs during showering, since that's a routine task that requires little active thought.

It should be noted here that the Church of Jesus Christ of Latter-day Saints topics website says, "Patriarchal blessings are sacred and personal. They may be shared with immediate family members, but should not be read aloud in public or read or interpreted by others." It is personal scripture that should be kept sacred and shared only under appropriate circumstances. So I'm not going to give many details of mine here.

Recently I felt prompted to review a printed copy of my patriarchal blessing. The wording includes a brief reference to our premortal life. As I read these familiar words I was stunned to see four words that had somehow over time dropped out of my weekly recitation of the blessing.

Those four words that I had been missing were, "The Lord loved you." As I pondered this I thought to myself, "The Lord loved everyone in the premortal world, even Lucifer and his followers." So maybe I had allowed this phrase to lapse because it is true for everyone. It goes without saying.

Deeper pondering helped me understand that the Lord wanted me to know that he loved me individually in the premortal life. Then I realized that the prompting to go look at my blessing so that I could refamiliarize myself with these four words was the Lord's personal message telling me, "I still love you." He knows me personally and his love for me is intensely personal.

The same is true for you. The Lord knows you individually on a deeply personal level. He knows you much better than you know yourself. And he loves you intensely. He likely sends love messages customized specifically for you. But they are subtle enough that they might easily be missed without close attention. That kind of subtlety is another marker of his love. He wouldn't want to infringe on your ability to freely choose.

So look around. Maybe you will notice a divine love message just for you.

Tuesday, February 19, 2019

Why the typical person doesn't live a healthy lifestyle

I recently taught the cooking merit badge to a group of young Scouts. Today's requirements are far more health conscious than they were when I earned that badge decades ago. When I showed the Scouts that one 20 oz. bottle of Mountain Dew contains as much sugar as seven large bags of romaine lettuce, most of the boys bragged about how quickly they could gulp down that bottle of Dew.

Our culture idolizes health and fitness. We admire famous and beautiful people (mostly in the entertainment industry) who appear fit and healthy. We pay money and spend time to watch movies that are filled with amazingly fit actors who benefit from professional trainers and chefs, and maybe from a little CG enhancement on screen.

Fit Marvel actors
Typical Americans
But as a society we don't typically DO health and fitness. The typical American doesn't look, eat, or exercise like their movie idols.

Why not? Well, judging by the content of a wide variety of broadcasts and publications, that's something that seems to regularly baffle health and fitness gurus. (Or maybe they're just using this as a foil to demonstrate their superiority to their average counterparts.) A couple of days ago I saw one healthy diet maven whine that while Americans have more healthy eating options than ever before, they seem to increasingly opt for unhealthy dietary choices.

There is really little mystery to this conundrum. Let's see if I can clarify matters for the clueless health and fitness scolds. Here is a quick list of reasons the typical American doesn't follow the experts' health guidelines.
  • Lack of real role models.
  • Social pressure to be more typical.
  • Changeover costs.
  • Sustaining costs.
I'm sure the list could be laid out differently, but this suffices for my purposes. Let's take a quick look at each of these factors, which are all interrelated.

Real life role models
Most Americans don't have many role models of healthy living in their own lives among their own peers and family members. The occasional nutritious eater and/or gym rat they encounter is an outlier. They seem to suffer from an odd fetish. Who has time to prepare gourmet health food or to spend hours at the gym anyway? Most Americans would rather spend their time doing something else, as evidenced by the fact that they actually do spend their time doing something else. They don't see themselves as health geeks.

Social pressure
This means that most of us are surrounded by people who eat the typical American diet and live the typical sedentary American lifestyle. We are inundated with incentives for us to be like those around us. Peer pressure is often mentioned negatively, but it is commonly applied to good, bad, and benign ends. It just is. Would we have to divorce our friends and find a new group of friends to look fit?

The price of change
Which brings us to changeover costs. Any kind of change imposes costs on us. Sometimes those costs are financial, such as the higher price of healthy food or a gym membership bill. The costs that present the greatest challenge, however, involve time and effort, as well as emotional, psychological, and social factors.

I can tell you from personal experience that undertaking a major dietary change is horrendously challenging. It takes a lot of time and effort to learn to plan for, buy, and prepare food for an entirely different eating pattern. Changing your eating regimen changes the way you socialize and interact with people, so it changes your relationships, sometimes in challenging ways.

Although healthy food choices have become much more available during the decades I have pursued nutritious eating, they still generally cost more, are less convenient, and taste ... well, you know. One factor that makes changeover challenging is the astronomical amount of conflicting information constantly hurled at us regarding nutrition. Sorting through all of that stuff is no mean feat. The tangible and intangible costs of changing your lifestyle are enormous.

Curiously, these higher costs seem favorable to those who seek to boost their self esteem by developing a sense of superiority to others. "Sure this lifestyle is expensive," they reason, "but, after all, I am worth it! By the way, do you want to see my new Apple Watch?" That's not to say that all who seek a healthy lifestyle think this way. But more than a few do.

The cost keeps going
Most Americans who attempt to switch to a healthier lifestyle end up reverting to their old patterns before long. It's one thing to get a little fitter and to drop five or ten pounds, if you even get that far. Most who try fail. It's quite another matter to make a permanent lifestyle change. Many of the same factors that affect changeover costs persist long after the change has been made, even when decent results are achieved.

Benefits of better health
The health conscious part of our culture does a great job of touting the benefits of a healthy lifestyle, including feeling better, being more energetic, thinking better, sleeping better, better sex, better mobility, needing less medical care and having less disease, and of course, progress along the endless pursuit of the great idol of greater longevity. And they've got valid scientific evidence to back up these claims.

The costs of (the attempt to achieve) better health
But these folks constantly undersell the costs involved in achieving these worthy goals. These costs, however, are not lost on the typical American who can't envision becoming a healthy iron chef or a gym rat. They have lives to live and they want to be happy. It's a simple application of cost-benefit ratio.

Cost-benefit analysis: It's personal
So maybe they won't live as long as the health nut down the street. So what? We all have to die sometime. And most would rather live shorter but happier lives eating pizza and a few cookies now and then over living long while eating roasted Brussels sprouts over warm Bulgar or a cold lentil salad.

And maybe the typical American will end up with a variety of obesity related health conditions. But so will all their friends and family. And then they will have something in common to commiserate about in their later years.

Don't get me wrong. I wouldn't give up on healthy living. After more than three decades it has become part of who I am. And I certainly wouldn't want to dissuade anyone from pursuing a healthier lifestyle. I'm just saying that there are costs to such a lifestyle and that each individual has to weigh whether those costs are worth the potential benefits that may or may not actually be achieved.

While each will ultimately reap the consequences of the health choices they make throughout their lives, the whole point of the human exercise to to pursue happiness. And it would seem, much to the chagrin of health obsessionists, that for many people this goal can be achieved outside of the parameters they prescribe.

The choice to pursue healthy living is not simply a choice between being healthy or not being healthy. It represents a trade off between expending one's limited resources in the (often elusive) quest for better health or using those same resources to seek after other goals. Economists call this opportunity cost. This life is a continual series of trade offs. Each of us makes countless such choices daily (under the specter of necessarily imperfect information) with the goal of maximizing our happiness.

I have often chosen the health fetish path in the belief that this improves my life overall. I have sacrificed other choices I could have made, assuming that these would have proven inferior to me. My choices have made me a different person than I would otherwise have been. And I'm OK with that. But many who have eschewed a fixation on health could likely say the same thing: that they are happy overall with the results of their choices, regardless of what health elitists think is best for them.

Wednesday, January 09, 2019

Why are Americans more lonely than ever?

Is our current divisive political climate really just a symptom of widespread loneliness? (My son says that whenever an author poses a question like this the answer is always yes.) Jonah Goldberg thinks so.

Years ago I used to read Goldberg's musings with some regularity. But that stopped when I broke up with my former political self. The nation's political climate has become increasingly noxious since that time. Myself? I've never been happier.

In a recent National Review article Goldberg essentially classes himself and people like him as part of the problem. He says that "it is an occupational hazard in [his] line of work to be constantly drenched in the muck of politics." But that's not what I'm talking about. Political commentators have been around since the dawn of humans.

I'm talking about Goldberg's acknowledgement that he and his wife are among the increasing number of Americans who opt for dogs over children. He calls dogs a political safe harbor. "They don’t care about political correctness. They don’t want to Make America Great Again or join the “Resistance.” They just want to pursue doggie goodness as they see it."

Now don't get me wrong. I too love dogs and I am in favor of people having the right to keep and bear dogs—as long as they are responsible pet owners. But Goldberg cites psychologist Clay Routledge as describing increasing dog ownership as "a symptom of America’s very real loneliness crisis." Routledge says that "pets may be appealing to some because they lack the agency of humans and thus require less compromise and sacrifice." It has long been known that it's easier to raise a dog than a human, but increasing numbers of humans are forgoing the latter in favor of the former.

Goldberg goes on to cite Senator Ben Sasse's contention in his book Them that "America’s loneliness crisis" is evident in the dramatic decline in Americans' real life social contacts over the past generation. This crisis is only made worse "in the era of the smartphone," where "young people report much more anxiety and isolation."

Putting the dots together, Goldberg opines, "The increasing nastiness of our politics is a byproduct of our social isolation. We look to politics to provide the sense of meaning and belonging once found in community and religion, which is why everything is becoming politicized. The problem is that politics, particularly at the national level, is necessarily about disagreement, which is why it cannot provide the sense of unity people crave from it."

This also helps explain the politics of constant outrage. Americans who are disconnected from God and from each other try to fill the void where transcendence once resided with passion for causes. In their quest for purpose and meaning they burn with rage over mountains and molehills alike, while still finding emptiness within when the furor subsides.

It's no secret that some of the loneliest people on earth have the largest list of social media contacts. But people can even be lonely and feel isolated in crowds and at gatherings with friends. I believe that this is often due to the lack of a working relationship with Deity which is fostered by the seeming increasing irrelevance of religion to many moderns.

The Apostle John taught in 1 John 4:20-21 that love of God requires love of our fellow beings. He asserts that those who profess a love of God while failing to love their neighbors are fooling themselves. Those who delude themselves into thinking that government and/or business can satisfactorily take the place of religion ought to consider the problems the decline in religious observance is causing for disaster recovery efforts (see 1/4/19 DNews article).

It seems that love of God and love of neighbor are intertwined. Selflessness is best fostered in an environment that imbues daily living with eternally ennobling purpose. It's easier to raise a dog than to raise a child. But raising a dog is all about the owner, while raising a child involves heavy focus on the needs of another person over whom the parent has steadily decreasing control.

Interestingly, control was the main issue behind the premortal war in heaven. Lucifer wanted to force people to be 'good.' Of course, the elimination of agency would thwart the ability of God's children to progress and develop divine attributes that can only be fostered through free choice.

Some choose pet ownership over child rearing because it's easier to force their will on a pet than it would be to force their will on a child. In a recent meeting I attended, a church leader quipped that as his children get older and make choices with which he disagrees, he sometimes thinks Lucifer's plan would be a great idea.

In a similar vein, a great deal of politics is about control and coercion; forcing people to do what various political actors think is right. Each political faction is certain that it knows how best to manage the lives of others. As Goldberg notes, this is hardly a recipe for unity.

We know that humans tend to exercise unrighteous dominion (D&C 121:39). But it seems that loneliness and isolation increase the tendency to seek to control others and force them to 'be good.' The less we personally interact with others, the more 'other' they seem and the more we want to force them into a mold that looks strikingly similar to ourselves.

We can expect increasing alienation and contention among Americans as we substitute politics for divine worship. Swapping this counterfeit for the real thing seems like a surefire way to decrease unity, happiness, and peace.

Friday, December 21, 2018

Hot Scones for Christmas

Note: In Utah scones are deep fried bread. Other regions might refer to this dish as fry bread, elephant ears, sopapillas, etc. This isn't health food, but it is certainly delicious.

My siblings and I bounded out of bed at exactly 6 am, the earliest my parents would allow us to arise on Christmas morning. It took interminably long, maybe even 90 seconds, for the whole family to gather.

Our semi-chaotic tradition of opening the beautifully wrapped gifts that had appeared under the Christmas tree overnight began as soon as my parents gave the official nod. We were all spooked just a few minutes later when the front doorbell rang in the midst of our revelry. Who could be at the door at that time on Christmas morning?

It must have been quite a sight for our visitors to see my normally refined mom standing bleary-eyed at the door in her robe with several sparkly-eyed pajama-clad youngsters peering from behind.

There stood Clark and Peg Rasmussen, a retired couple who lived around the corner. They presented a plate of hot scones with honey butter, bid us a merry Christmas, and quickly disappeared into the darkness. We couldn’t help taking a brief break from ripping wrapping paper to enjoy freshly fried bread slathered in deliciously sweet gooeyness.

When Mom asked us the next year what we wanted for breakfast on Christmas morning, several of us chimed “Hot scones!” in unison. We tried deep frying scones on Christmas morning for several years, but somehow our concoctions never approached the yumminess of the Rasmussens’ scones that one Christmas. We seemed to be missing some secret ingredient.

Years later I found out from another neighbor that the Rasmussens had no family nearby that Christmas. When they realized that all of their close family members would be out of town visiting other relatives, they decided that they needed to do more than just sit around alone on Christmas.

So that Christmas morning the Rasmussens arose at 2 am to make a large batch of dough and form it into bite sized balls. Then they kept watch on the neighborhood. As soon as they saw lights turn on at a house, they would fry enough scones for that family and deliver the piping hot treats to their surprised neighbors.

Each time I think about the Rasmussens I remember that plate of hot scones that they delivered to us that Christmas morning and I get a little better understanding of their special ingredient: the true spirit of Christmas. Generosity, selflessness, and love don’t appear on a recipe card, but I swear you can taste them.

Friday, December 14, 2018

Forcing everyone to attend teacher school

As the mixed group of high school educators and parents of students seated themselves around the large table, a parent leaned toward one of the teachers and said, "My daughter loves you as an English teacher." "I'm flattered," the teacher responded. "Your daughter is a diligent student. She's a joy to teach."

I was stunned a few minutes later when the school's principal announced that 14 percent of the grades given during the first quarter of the year were F grades. Maybe I shouldn't have been surprised. A population of more than 2,000 students might be expected to approach a somewhat normal distribution of grades, so that we could expect about as many A grades as F grades, with the remaining grades clustering closer to average.

But that's not how high school grades work nowadays. Most parents and educators consider a C grade to be pretty awful. A study released in 2017 found that due to grade inflation 47 percent of high school students graduate "with A averages (including A-minus and A-plus)" (see 7/17/2017 Inside Higher Ed article), although SAT scores have declined. One critic quipped that A now stands for 'average.'

A recent PrepScholar blog post treats the issue of grade inflation quite thoroughly, even noting that there are both pros and cons to the issue. But grade inflation is not the focus of this post. The reality is that most of today's C– grades would have been F grades in the 1970s. So a C grade today is pretty awful. Thus, it's all the more shocking to hear that 14 percent of the grades given at this high school last quarter were F grades.

The principal and the teachers at the conference discussed the approaches they have been taking to try to remedy the problem. At least some of these efforts have been heroic. Part of the issue can be chalked up to attendance. Administration members try to visit with persistently truant students and their parents in their homes to structure some kind of program that might work for them.

I say that they try to visit because they are sometimes turned away, by the parents, no less. Some of these youth come from families with serious problems. Educators can't do much about that. Other students struggle with mental health issues that make school attendance impossible or nearly so.

Other efforts include opportunities during each week for students to visit with teachers in their classrooms for help. As we discussed the number and nature of students who are actually using these opportunities effectively, the aforementioned English teacher lamented, "I get many more of my A– students coming in than I do my D– students."

In a moment of sudden clarity I understood some of those D– and F students. For many of these youth, high school is too late to help them. Since their earliest days they have been classed as problematic and unworthy by a system in which they ill fit.

The entire system has communicated to these children in countless overt and subvert ways that they are bad. It's not that the system poorly fits their individual needs; it's that they are defective and bad for failing to fit well into a system that focuses heavily on a narrow band of factors that are easily measured.

By the time these youth arrive in high school they have already given up. Why bother to go talk to the teacher? I know this because I have have a son who gave up along in about fifth grade when his needs ill matched what the school was offering. He discovered that when he really tried to do the work, he simply failed with a higher score. So why put in any effort at all?

The A– students coming to the English teacher for help fit reasonably well in the academic system. High grades are their lingua franca. They have hope that by working with the teacher they can raise their grade from an A– to an A. The D– students have no such hope, nor do they value grades because they feel rejected by a system which seems to esteem grades above everything else (with the possible exception of competitive sports programs that draw crowds).

If you step back and look at our public education system, it is part child care and part teacher school. Isaac Morehouse writes, "The entire system, top to bottom, is designed by and for teachers. All the things learned and methods of learning are valuable nowhere in any part of the real world except in the academic professions." Some of Morehouse's wording seems hyperbolic here, but his main point is valid.

Morehouse goes on to explain, "The most effective learning happens just from being around things and being in an incentive structure that rewards certain behaviors. School means you spend all your time around educators (and none of it around any other real-world professions) and in an incentive system that rewards things they like. So that’s exactly what you learn; how to live like an academic."

To demonstrate the absurdity of our current academic-centric public school system, Morehouse likens it to "a world in which all kids were sent to auto mechanic school for the first few decades of life," despite the fact that the approaches used for most students would "bear no resemblance to what they’ll do for a career."

During the aforementioned meeting, I noticed that most educators and some parents present simply could not fathom why students would let academic opportunities slip by. Morehouse explained this phenomenon thus:
"It’s no surprise then that teachers and professors are baffled by people who complain about the fluorescently-lit hell of classroom-cramming and credential-chasing. They loved the whole experience, and it taught them all the stuff they needed to succeed in their careers as academics and educators. It’s also no surprise that it’s such an epic, colossal waste for most people who want to enter other parts of the vast job market."
Morehouse's criticisms of our public education system dovetail nicely with the work of Sir Ken Robinson. You might have seen Robinson's presentation in the most watched TED talk of all time or in his later TED talk about changing education paradigms.

As I looked around the table at the conference, I realized that everyone involved was stuck in a system that each of them is—and even all of them together are—pretty much powerless to change. The educators, while perhaps not blind to some deficiencies in the system, maintain their careers by wearing blinders that prevent them from seriously engaging Morehouse's criticisms. They must think inside of a box that protects the integrity of the system.

And while the number of students' parents dramatically dwarfs the number of workers in the system, their power against an institution that has successfully ingrained itself into the culture as a moral authority and a necessary part of life is so diffuse as to render them impotent to effect any real change.

It was frankly quite depressing. The educators are doing their best to respond to pressures from the vast education bureaucracy, politicians, and parents to produce superior outcomes, while oblivious to the fact that the product they offer is largely irrelevant to many students. The parents are augmenting the system, convinced that if their children don't excel in the system, they—both the students and the parents—will fail socially.

Not all teachers are oblivious. A friend who teaches early childhood grades recently fumed to me that the system focuses heavily on the limited developmental factors that can easily be measured, while increasingly ignoring difficult to measure characteristics that are equally or more important to balanced and happy living. She remains in her profession because she feels like it's her calling in life and she knows from experience that she can make a positive difference in many lives.

I'm not trying to bash educators. They have a tough job. But our public education system is dysfunctional. It ill fits the needs of students, except for those going into academic fields. Yet it's such a monstrously expansive and formidable entity that it withstands serious reform efforts and successfully thwarts potential alternatives.

I believe that meaningful change in the system can only really come about when enough parents realize that their children are in the academic equivalent of two decades of auto mechanic training, that they vote with their feet, withstand the social backlash, and find worthwhile ways for their children to learn skills pertinent to their individual needs. Only when enough people opt out will the system be forced to change.

Monday, October 22, 2018

Lessons from my 10-day social media fast

A few weeks ago I sat on a pew at our local stake center watching the general women's session of the general conference of The Church of Jesus Christ of Latter-day Saints with about 150 women and a handful of men. Being the stake technology specialist, I get to attend every meeting that involves broadcasts at any of our stake's church buildings.

In years past our stake's women's organizations would host a meal prior to the general women's session, but the decision was made to forego this social aspect this time around. Attendance at the meeting when dinner was served tended to run about triple the attendance at this recent meeting. Many, including my own wife and daughter, chose to watch the meeting at home. I don't really have a problem with that.

Although Elder David A. Bednar spoke earlier in the day against turning the gospel into "checklists of individual topics to study and tasks to accomplish," I couldn't avoid noticing that Church President Russell M. Nelson extended "four invitations" to the sisters that look a lot like a checklist:
  1. "Participate in a 10-day fast from social media and from any other media that bring negative and impure thoughts to your mind."
  2. "Read the Book of Mormon between now and the end of the year. ...mark each verse that speaks of or refers to the Savior."
  3. "Establish a pattern of regular temple attendance."
  4. "Participate fully in Relief Society."
I figured that what's good for the goose is good for the gander. What better way to support my wife and daughter in these invitations than to join them? Even if I couldn't do #4, I could readily do the other three. And I could sort of do #4 by supporting my female family members in their Relief Society participation.

The first and simplest thing to do was to participate in a 10-day fast from social media and negative media. I started the next day. This adjustment wasn't nearly as difficult as I anticipated it might be. This is likely because I made the shift away from negative media and social media years ago when I found myself not liking how I felt about myself when I was more involved in media content.

At the conclusion of my 10-day fast I wanted to document my observations, as recommended by President Nelson, when he said, "What do you notice after taking a break from perspectives of the world that have been wounding your spirit? Is there a change in where you now want to spend your time and energy? Have any of your priorities shifted—even just a little? I urge you to record and follow through with each impression."

What do I notice or did I notice during my 10-day fast. First off, it wasn't incredibly different than normal. As noted, I had already changed my media habits years earlier. As far as social media goes, I rarely post and I find most posts on my feed fairly inane. I also find occasional useful and uplifting posts. But I will note three factors:
  • Instead of going to media sources for a break from the daily grind, I found myself going to family history apps. Some of this was due to timing, given that I was notified of several DNA matches and new links to several ancestor records during this time frame.
  • I was mildly annoyed at the inability to get updates about events and family matters through the normal means.
  • Highly partisan posts and food porn posts were not missed.
Really, I am tired of food videos that amount to fantasies of how recipes work in real life. They follow the same patterns as sex porn and hit similar pleasure centers in the brain, so I call them food porn. I block those sites whenever possible and I have unfollowed some connections due to their penchant for such posts. These posts still pop up with annoying frequency.

I have a variety of social media connections who put out highly partisan or deeply slanted ideological posts. I long ago tired of people painting complex issues in simplistic monochrome ways and freaking out about tactics by ideological opponents while excusing the same tactics by ideological allies. Many of these people seem to have a stunning lack of self awareness.

Why don't I just unfollow them? Sometimes I do. But I actually care about many of these people, although, I may think them to be somewhat misguided. I'm also not so secure in my own political ideology as to think that I have nothing to learn from others who think differently. If we screen out all thought differences we end up in an echo chamber where we think we have all the answers. Too many of us do this already. Besides, these folks occasionally post about things I actually do care about. I guess I am willing to wade through some of their garbage to pick up the occasional gem.

Occasionally I have unfollowed someone for posting raunchy material. I find no redeeming value in exposing myself to that stuff. But the main reason I have unfollowed people has been overload on the volume of posts. Where in the world do people find the time to share 30 posts on a given day? Too many posts in one day violates the basic tenets of social media etiquette.

Is there a change in where I now want to spend my time and energy? Have any of my priorities shifted—even just a little? Yes. I want to spend more time doing family history work. I have gone through many waxing and waning family history periods during my lifetime. I found that I had waned on that front more than I really wanted to. So I want to do more of that.

And I may actually unfollow some people whose posts, on balance, tend to bring more negative thoughts than introspective or uplifting thoughts.

Thursday, August 30, 2018

Our autistic son graduates high school

The school system was awful for our autistic son. Some of the people in the system were fantastic. Some were extremely caring. But the system itself poorly matched our son's needs and was terrible at providing workable adaptations.

We were very happy to welcome son #4 to our family. His blond hair, blue eyes, cherubic face, and gravely voice were part of his endearing package. Other than the fact that he was louder than all of his brothers, he seemed pretty typical. He had a bit of a rhotacism, for which he received speech therapy at ages three and four. But otherwise he was pretty normal.

The first signs of mental health issues became noticeable when our son was in fourth grade, although, it didn't seem serious. When our son expressed suicidal thoughts in fifth grade, however, we sought professional help. Despite interventions, things went downhill toward the end of his fifth grade year, and sixth grade was a continual struggle.

Our son now tells us that he hated school by this time because he couldn't keep up. Oh, he's very bright, but we later learned that he was running up against biological limitations. Those constraints had always been there, but they had rarely been an issue before hitting the abstract and critical thinking developmental stages.

After months of falling further and further behind, our son simply gave up hope that he could ever succeed. He reasoned that he would fail regardless of whether he did the work or not and that avoiding the work was far less stressful, so that's the approach he took. All-or-nothing thinking is common for autistic people. Since our son couldn't do it all, the logical choice in his mind was to do nothing.

We hoped that the jump to the junior high school would help our son as it had helped his older brother, but it didn't work out that way. He ended up spending three months in an intensive outpatient behavioral healthcare program that mixed schooling with mental health treatment. Managing this was quite challenging for our family, but it was also the most helpful thing for our son's condition that we had encountered.

During this period our son was evaluated by the staff at Dr. Sam Goldstein's office, which is among the best programs of its type in our region. After an extensive review, our son was diagnosed with Asperger's Syndrome (AS), which people have often referred to as high functioning Autism. Some professionals today refer to this condition simply as an Autism Spectrum Disorder (ASD), although, others find ASD to be an overly broad term.

Every case of autism is different. People think they know what to expect of someone with AS because they know somebody else with AS. But every case is unique. Our son has biological limits with processing and executive function, while his memory is very keen. One psychologist told us that it's like having the world's best solid state drive on a Windows 98 machine. You can put a lot of data on the drive and access it, but it takes a long time to process the data onto the drive and the processor can easily get overwhelmed.

"If it were only the autism we were dealing with," one professional told us, "we'd have no problem treating it. But every case of autism comes with at least one, and usually several collateral mental health issues that make each case unique and that present interesting (as in baffling) challenges to successful treatment." In our son's case that means, among other things, clinical depression and extreme anxiety, especially social anxiety.

Upon completing the behavioral healthcare program we felt that our son had the tools necessary for success ... until we came up against the intransigence of the public education system. While some people in the system are miracle workers, we also had many opportunities to work with those who were quite the opposite.

The representatives from the school district's special education department and many of the representatives from the junior high school's administration and faculty stonewalled serious efforts to get adaptations that could have actually helped our son. They especially prevented him from getting an Individualized Education Program (IEP). It eventually became clear that they didn't want the inconvenience an IEP would cause them.

It's not lost on me that these people are in a challenging situation. They have limited resources and every IEP further strains those resources. They were grappling with the realities of what they were demanded to do by law in the face of what they had capacity to do. But the result was particularly cruel and inhumane for our son.

I now realize that we should have retained professional legal help for this matter. A few years later one psychologist was beside herself that our son had still been denied an IEP. "The child is autistic!" she cried out in exasperation, "That qualifies for an IEP on its face." We finally succeeded in getting an IEP four years after our son was diagnosed. But with roughly a year and a half left in our son's public school career, the help it provided was extremely limited.

Hint: If your child has special needs, do everything in your power to get an IEP as early as possible. Being nice and cooperative in the face of bureaucratic barriers is a luxury your child can't afford. You might have to go into mama bear snarl mode in your child's best interest.

In the interim between being diagnosed with autism and receiving an IEP, our son encountered a few educators who were extremely helpful, many who were not, and yet others who were quite detrimental.

I still have a bad taste in my mouth about one of our son's junior high math teachers who is a darling of the administration, as well as many students (the ones who think math the way she does) and their parents. Although these people love this teacher, she regularly uses demeaning bullying tactics in class to deal with students who don't comprehend her narrow approach to math as quickly as she wants. Remember kids: bullying is bad unless the teacher does it.

While one math study hall teacher at the junior high was amazingly caring, her counterpart at the high school informed us in a snippy tone that she had 35 students for an 80-minute period. "That means that I have only about two minutes per period for each student!" she exclaimed. Translation: "I am nothing more than a glorified monitor who is trying to keep the kids from getting too noisy. Don't expect any real help from me. After all, I have fewer than five years left until retirement."

On the other hand, there was the high school drama teacher who went far beyond the call of duty to provide accommodations so that our son could play a role in the school play. There was the blunt spoken special education teacher who was tender on the inside but who wouldn't let our son get away with stuff he could reasonably handle.

There were also many teachers who let our son fail or nearly fail because they just didn't know what to do with him. He was always very respectful and well spoken, and he never caused problems in class, so they put no extra effort into his case.

It's astonishing how many teachers at parent conferences equated classroom behavior with academic capability. This fundamental misconception meant that the only reason many teachers could see for our son's under-performance was laziness. This isn't really the fault of the teachers, since few educators receive much in the way of mental health training (see Atlantic article). It is yet another deficiency of the system that caused particular problems for our son.

Many well meaning teachers and administrators treated our son's biological limitations primarily as a motivation problem. We sometimes did too. No one would ever do that to someone with an obvious physical impairment. Consider the comic panels to the left showing what it would be like if we treated physical health issues the way we tend to treat mental health issues.

Unfortunately, by the time our son got an IEP, his pattern of failure was bumping up against his off-the-chart level of social anxiety. He was actually not that far from completing all of his requirements for graduation. But by the middle of his senior year of high school he shut down. He just couldn't deal with the social aspects of school anymore. He had successfully completed work packets at home to satisfy some course requirements, but he could no longer bring himself to do the packets either.

During all of these years, our son has been working with qualified psychiatrists, psychologists, and therapists. We believe that drug therapy has been helpful. Frankly, it's hard to say. It makes a noticeable difference when he forgets to take his meds but part of that could be withdrawal symptoms, I suppose. None of the experts really know. They readily admit that they're just guessing, based on how patients tend to respond.

Many of the therapists our son has worked with have been great people, but I can't really say that any one of them has been particularly helpful. We believe, however, that our son's comprehensive treatment package has been helpful overall, despite his ongoing challenges.

After our son's high school class graduated without him, we discovered that this event allowed him to take advantage of a program offered by the school district to close the gap for people in our son's situation; high school seniors with certain conditions who didn't graduate with their class but who are close to completing their graduation requirements. We learned about the existence of this program purely by fluke.

Our son ended up with a handful of packets to complete. The nature of the packets made it obvious that the effort amounted to checking off a few boxes to satisfy some bureaucrats. The packets were not academically challenging for our son but quite literally amounted to psychological torture for him.

Thankfully, the packet effort has recently finished, thanks in no small part to my wife, who provided immense support. The office in charge of this kind of thing at the school district has now certified our son's accomplishment and has granted him a full fledged high school diploma that isn't some kind of equivalency certificate.

Some might look at this diploma as a consolation prize, but I am immensely proud of our son. Few high school graduates have endured the level of challenges our son has endured to earn their diploma. He spent years struggling under a system that continually beat him down and sent nonstop messages through countless subvert and overt channels, telling him that he is stupid, deficient, and unworthy.

I have deep gratitude in my heart to all who have truly helped our son along the way. Thanks to a few good people and a few obscure programs, our son finally found a path to high school graduation, despite the system's best efforts at rendering this impossible. I am especially grateful for peers who have stuck by our son, even when that kind of friendship has been very hard to maintain. I believe that heaven reserves rare blessings for such individuals.

For now our son is moving forward with a program to learn web development. We have no idea where that path will lead. I imagine that our son's journey in life will continue to be more like hiking through a trackless wilderness area than like hiking an established trail. But at least he can now move on from the inhospitable compulsory public education scrambles to the more varied climes of young adulthood.