Pulling Yourself Up By Your Bootstraps and Other Tall Tales

Last night I responded offhandedly to a tweet about being a high school dropout. (The person to whom I responded actually had a diploma, I believe, but used the phrase “practically a high school dropout”.) Most tweets are fire and forget, but that one stuck in my head. So earlier today I ended up firing off a series of tweets on my own circumstances as a teen parent.

In the process, I pointed out that all the “pulling yourself up by the bootstraps” stories are basically, as @niais so aptly put it, bullshit. I’m well-respected in my field among the people who know me and I make a pretty good living. I’m a long way from those years as a poverty-stricken teen parent, years that lasted into my thirties, though things steadily improved for the most part. I know how those stories work from the inside.

And those people who think they did it all themselves are simply self-deluded. I had quite a few “lucky” breaks along the way and help from other people. At least some of that I can probably chalk up to my privilege as a straight, white male since it’s unclear if the opportunities would have been afforded me otherwise. But I had the advantage of safety net programs, such as they are, to buffer some of the worst of it. The military provided me opportunities, a limited GI bill for part of my college education, and a VA loan for my first home. There were other structures and systems supporting and helping me, many of them geared to help someone like me.

So yes, I’m smart. I’m good at what I do. And I have worked hard to overcome obstacles. That part of the bootstraps tall tale is typically true and hard work, at least, is usually necessary. The best stories contain elements of truth. But those are not sufficient. Somebody has to provide the bootstraps. And the structures must exist to help keep you from falling on your ass when you pull them. Some of the people, structures, and systems that helped you achieve success will be apparent. Others will typically operate below your level of awareness. They are all necessary.

The stories are inspiring. And that’s not bad. It’s important to work hard. People need to know that it is possible to overcome hurdles, however high. But when we come to believe the lie that anyone is “self-made” the stories can become destructive instead.

Anyway, my tweets on the subject were apparently of interest to others, so I storified them below.

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Empty Nest

I’m no stranger to watching my children enter their adult lives. My oldest daughter is 33 and currently working as a traveling nurse in California. My older son and foster-son are both 30. My son is married with his own daughter now starting sixth grade and my foster-son is an attorney and major foodie. My younger son is 23 and graduated magna cum laude from Baylor this spring with majors in both physics and mathematics. He’s now starting graduate school in particle physics at the University of Texas after receiving their highest fellowship.

Still, none of that has prepared me for my youngest daughter starting the next phase of her life and leaving us with no more children at home full time. I became an expecting parent when I was 15 years old and still a child myself. I learned to be an adult as I learned to be a parent. I’m now 50 years old and I’ve never known anything else. That ‘parent’ label lies close to the core of my identity. And through the good and the bad, I’ve never wanted anything else. I love my children as most parents do, but I also really like them all. They are very different from each other and I’ve made more than my share of mistakes along the way, especially with the older ones, but I still genuinely love, like, and respect each one of them. I’ve never been one of those parents who couldn’t wait for their kids to leave.

But now the youngest of them has left. And I’m thrilled for her. It’s been her dream for years now to study neuroscience and she’s excited to be at Baylor. So I’m excited for her, worried about her, and cheering her on all at the same time.

But I also miss her already. Which is silly, in a way, since she’s been attending Camp Mystic every summer since she was 10 and worked there this summer as a counselor. She’s barely been at college three days at this point. Still, this time it’s different. When she’s been at camp or on any other outing, she was just gone for a little while and then would be home again soon. From this point on, she’ll only be home with us for brief interludes in her journey. And that’s great for her!

But my heart hurts even as I’m happy and excited for her. I want her to succeed. I want her to achieve her dreams. But I can’t just knock on her door and tell her something. She won’t come running up to show me something funny or interesting. I won’t see her bouncing out of the corner of my eye. She’ll only sometimes be there with us at the dinner table. We won’t have many of those ad hoc kitchen conversations in the future. Our daily lives will mostly be lived in separate places from this point forward.

And I don’t know who I am anymore. I’m not ready. I don’t think there’s any point in my life when I would have been ready for this day. But inevitably it came.

I storified some of my tweets below.

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I’m a College Graduate!

I finally completed the Bachelor of Science in Computer Science degree that I started way back in the 1980s. I enrolled at the Park University Austin Campus, then at Bergstrom AFB, when I was serving in the Texas Army National Guard. In fact, I found out about Park (then called Park College) through the military. Over the years, Bergstrom AFB was closed and the new Austin-Bergstrom International Airport opened on the site. The local Park campus has relocated multiple times. The main campus, of course, is where it has always been in Missouri. One day I would like to see it in person.

Before dropping out of high school, I had taken the ACT (32 out of 34 composite if I recall correctly). I had also already obtained my GED, so I had everything I needed to enroll. I never planned to spend as long as I did completing my degree, but life intervened, as it usually does. That’s especially true when you’re an unconventional student. Along the way I took many CLEP tests, and some courses at the local community college in addition to my night courses at the local Park Campus. I even took Calculus by correspondence course from UT. Internet classes made things a lot easier in the later years, of course, but I still ended up taking classes in fits and starts, often with lengthy gaps between those periods. But I never gave up on finishing it, which shows that eventually if you keep taking them, you will have enough classes to graduate.

Below are my storified tweets on my reaction and my thanks to Park for their military and veteran friendly policies that allowed me to finally accomplish this goal!

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GOP Lies: Social Security

While it’s true that these days the GOP relationship with truth and reality has become strained to the point of non-existence, their lies about Social Security stand out as both particularly egregious and especially cruel. Moreover, much of the time, the worst of these lies are simply allowed to stand, relatively unchallenged. Yes, attempts to debunk them exist, but much of the public discourse either treats the claims as fact or allows them to stand as reasonable arguments.

In this post, I hope to debunk some of the worst of the assertions. Few people read my blog, so I don’t expect to have any particular impact on public discourse. But at least I’ll have a post which I can reference in future discussions.

First, there are no major structural deficiencies in Social Security that form an impending crisis. If you examine most of the discussions, you’ll find an often unchallenged assumption that Social Security has major problems. That happens in several interesting ways.

One common tactic involves the use of the broad term “entitlements” to lump Social Security, Medicare, and remaining social welfare programs like Medicaid, SNAP, free/reduced school lunches, WIC, and TANF together into a single large pool. When politicians speak generally about “entitlement reform” they are engaged in a form of newspeak deliberately intended to make their constituents believe they are talking about cuts to welfare programs for the “undeserving” rather than Social Security and Medicare.

Of course, that particular deception only carries them so far, as George W. Bush discovered when he tried to attack Social Security directly. Most Americans, including most GOP constituents, understandably responded with outrage. Interestingly, the GOP learned that lesson and proceeded to abuse it in 2010 with their coordinated and well-funded attacks against the ACA. (Anyone who confuses the Tea Party with a “grass-roots” movement is, frankly, either dishonest or an idiot. It was a well-funded and coordinated nativist movement playing off fears and prejudices that ended up spinning out of control and attacking its host.) That’s why we saw people earnestly waving protest signs that said patently absurd things like, “Keep the government out of my Medicare!”

And that’s the grain of truth embedded in the term “entitlement”. The overwhelming majority of Americans now view Social Security and Medicare as something they’ve somehow “earned” and thus do not consider them “government programs”, but rather something to which they are “entitled”. And in a sense I agree with that broad attitude, but not because any single individual has somehow “earned” their benefits. Rather, Social Security represents a form of “pay as you go” social insurance. Collectively, we all contribute throughout our working prime to support those who are past that prime, surviving spouses and minor children of those who die during those prime years, and those who through disability are fully or partially unable to work. And we then reasonably expect our society to provide us those same benefits when we or our loved ones require them.

Lumping all those things together and then claiming that “entitlement” growth is out of control represents a deliberate effort to make people think a given pundit or politician is talking about whichever group the hearer considers the “undeserving” in order to set up a pivot toward dismantling Social Security. So far, at least, those efforts have been unsuccessful. That does not mean they won’t be successful in the future. The reality, of course, is that the only program growing at unsustainable rates has been Medicare. The ACA appears to have had some impact on that growth rate, but it was never designed to fix our entire health care system, so its impact will likely be limited. The problems in Medicare actually reflect the broader problems in our overall health care system. Out of all the components that make up that system, Medicare is actually the most efficient. It’s certainly not the cause of the problem and while it can impact it to some degree, Medicare can’t by itself fix the system within which it operates. But that’s a topic for another day.

More recently, proponents for dismantling Social Security have been asserting that there are major structural deficiencies in Social Security and we need to make major cuts in benefits before the whole thing collapses. They might blame changing demographics while pointing to assumptions made back in the early decades of Social Security to support their wild claims. There is, of course, one major problem with all their hand-waving and bellicose grandiosity.

We already reformed Social Security to correct its structural defects in the 1980s. Sadly, many Americans seem completely unaware not only of historical events, but even those events that have happened in their own lifetime. By the 80s, the children being born were in the generation that would come to be known as the Millenials. There was no demographic surprise about the small size of Generation X relative to the Baby Boomers. The entire reform effort was a pretty big deal involving lots of analysis and input from all sectors in a truly bipartisan effort. (This was back well before the GOP went completely off the rails.) And it was successful.

In fact, there is only one structural problem that has arisen since that reform. And that problem is directly related to the extreme explosion of inequality, in itself also a direct result of government policy, in our country. One of the decisions made at the time was to cap overall earned income subject to the Social Security tax at 90% of all earned income. While the cap was indexed to inflation, nobody anticipated that income at the top would grow from 11% then to roughly 25% of all annual earned income today. That concentration of income has reduced the overall percentage of income subject to the social security tax from 90% to 83% and falling. While that’s not sustainable over the course of decades, the fix is simple. The cap must be adjusted so at least 90% of all income is subject to the tax again.

Personally, I believe the cap should be eliminated altogether. After all, we don’t cap the Medicare portion of the tax. But a compromise that would compensate for the years we’ve collected less than 90% while ensuring that at least 90% of all annual earned income is subject to the tax moving forward would fix the only structural problem that has developed in Social Security since the last major reform. It’s worth noting that this problem could also be addressed by reducing the concentration of earned income at the top. So addressing our current extreme inequality would also “fix” Social Security.

While the current insane version of the GOP is obviously incapable of accomplishing even something that straightforward, it’s also not a crisis. Yes, we’ll need to fix it at some point over the next forty to fifty years and the longer we wait, the more expensive the fix will be. But it’s a problem we will still be able to fix at almost any point along the way. That’s what makes the frantic hand-waving so absurd. Think about it. The basic claim is that if we don’t do anything to fix Social Security, in four decades we might have to cut benefits. And their solution to that “crisis” is to cut benefits now.

As an aside, I can’t help but compare that reaction to the GOP take on an actual looming crisis with climate change. While the consequences of climate change will take decades to unfold, unlike Social Security it really does require action today. We spent decades reaching this point and even if we acted aggressively right now, it’s likely too late to repair much of the damage we’ve done. The longer we wait, the worse the consequences will be. Yet the GOP is in almost complete denial about that actual looming crisis in favor of ones with no basis in reality.

And that takes us to one of the most commonly promoted ideas for cutting benefits — raising the retirement age. I believe Jeb Bush most recently floated that proposal, but it’s widespread throughout the GOP and even among some so-called “serious” Democrats. But this proposal is actually deeply cruel. It’s simply not physically possible for many people to work much longer than they already do. Our bodies get old. They get weaker. And we become more prone to illness and injury. Nothing about that fundamental reality has changed.

While that’s most clearly true in physically demanding blue collar jobs, the impact is actually much broader. My oldest daughter is an intensive care nurse, one of the professional service occupations (though perhaps one not as widely respected as it should be). The job requires significant and ongoing education and skill. However it is also a physically demanding job. And even in the jobs, such as mine, that rely almost entirely on intellectual capability, we have no guarantees. Alzheimer’s is only considered “early onset” when it strikes before age 65. And that’s only one of myriad ways our ability to perform can be impaired by age.

Underlying these proposals to increase the retirement age is the idea that people are living significantly longer now than they did fifty years ago. That’s simply untrue and represents, at best, a naive understanding of life expectancy. At worst, it represents a prime example of what Mark Twain meant about lying with statistics. Dr. Aaron Carroll does an excellent job unpacking these statistics in his Healthcare Triage episode on life expectancy. He also includes other links on the topic. If you’re interested in the topic, check out his full post. But the video is included below.

We have greatly improved the average life expectancy at birth, but primarily by reducing infant and child mortality. The average life expectancy at age 65 has improved overall, but not by all that much. Moreover, the improvements are not evenly distributed across all groups and it’s actually fallen in some groups. Therefore, claims that we need to increase the retirement age because people now live longer are simply untrue. The only real question is whether or not the people repeating those claims are ignorant, misinformed, or lying — not to imply that those categories are mutually exclusive.

In closing, I’ll note that we actually have one of the lowest levels of effective social insurance in the industrialized world. Rather than trying to cut or limit Social Security, we should actually be working to expand and improve it. It has proven to be remarkably effective and efficient and is certainly one of the reasons the latest financial crisis did not spiral into another Great Depression. (Benefits like SNAP and unemployment insurance also mitigated the impacts of the financial crash.) It’s time to end the lies.

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Leelah Alcorn

I know the title of this post is not particularly descriptive. I thought of many different titles, but none seemed quite right for what I wanted to say. In case you’ve been living under a rock, Leelah Alcorn was a transgender teen who committed suicide by stepping in front of a tractor trailer the night of December 28. Her death might have gone largely unremarked outside her local community if she had not left a suicide note scheduled for publication on tumblr. Her tumblr account has since been closed, but of course nothing published on the Internet ever really goes away.joshua_leelah_alcorn-550x412

Leelah’s death is a tragedy, even more so because it should have been avoidable. Whatever else can be said, and much has been said since her death, one thing is abundantly clear. Leelah’s parents failed her when she needed them most.

I’m hardly a shining icon of parenthood. I don’t want anyone to mistake my tone for a self-righteous one. My children are all adults now and I’m sure, if pressed, could catalog my faults and failings as a parent. I have tried to learn from my many mistakes along the way and hopefully my children all know that if they really need me, I’m there for them. Unconditionally. Even if the whole world seems to be against them, I’m in their corner. If I have one fervent prayer, it’s that I never fail my children to the extent that Leelah’s parents failed her.

Nor do I say that to demonize Leelah’s parents. By all accounts, they are the family next door. It’s reported they are Church of Christ members, a denomination that’s pretty similar to the SBC church I’ve attended for as long as I’ve called myself a Christian as an adult. (My interaction with Christianity and other religions is a complicated one and beyond the scope of this post. Suffice it to say that I’ve practiced a number of religions and studied even more, but have identified as Christian for the past couple of decades and change.) I could easily see conversion therapy, which is proven to be outright harmful for transgender individuals, being recommended by members of my own church. In fact, it’s not particularly hard to imagine Leelah’s tragedy taking place in one of the families I know. I’m sure her parents were seeking advice from their friends and pastors and I’m sure they were acting on that advice. I’ve received plenty of bad parenting advice myself over the years from pastors and others in my church. Fortunately, outside a few instances I still deeply regret, I was able to recognize it as bad advice and make better choices instead.

While much of the attention has focused on Leelah’s suicide note, she had another note scheduled after it. In it she apologized to her siblings and friends and included the following to her parents.

Mom and Dad: Fuck you. You can’t just control other people like that. That’s messed up.

As a parent, I read those words and weep. Whether or not we condemn her parents, Leelah clearly did. Those were her last words to them. And from all the reports, it’s hard to disagree with the sentiment those words express. The way Leelah was treated was messed up. But it was messed up in a way that’s all too common and which is replicated to one degree or another by many parents today with nothing but the best of intentions. The road to hell is, indeed, paved with good intentions.

I do believe that Leelah’s parents loved her, or at least that they loved their son, Josh, even if they could not accept that their son was actually their daughter. I can’t remember where I originally saw it, so I can’t provide an attribution, but the following has haunted my thoughts for days now.

They loved their son so much they killed their daughter.

Even if Leelah had not committed suicide, the Alcorns would have lost their son, Josh. That was inevitable. Leelah was seventeen and approaching her majority. However, instead of merely losing the concept of a son they carried in their head, the Alcorns lost their child entirely.

Long-time readers of my blog (if any such individuals are still around) likely expect a theological reflection from me. I do have one. I hope it doesn’t disappoint. It may not be what you expect.

If God doesn’t love my children more than I do, then to hell with him.

I have no use and less interest in a God who demands that I sacrifice my children on his altar.

I’m familiar with all or most of the “biblical” arguments for and against accepting and loving those in the LGBTQIA community. I suppose there is some value in those discussions, but it really looks like so much intellectual masturbation to me. I’ve studied it all and found that it ultimately means nothing to me. I worship a good God who loves mankind in all our messiness and craziness. I worship a God who seeks communion with me and with all humanity so that we can love as he loves. Most of the time I think it’s a lost cause in my own case, but if I could I would become all fire.

So I place my hope in a God for whom love is never a mistake, the God we see revealed in Jesus of Nazareth.

And I’m comfortable with that choice. Ultimately, if there is no God, there are worse things I could have done with my life than tried as best I could to love. If the foundation of reality is something else then it either doesn’t matter that much (which would, in a sense, be the case with Buddhism, Taoism, and Hinduism) or the God that exists is one I’ve chosen, likely deliberately, not to worship. That would be true for most ancient pagan Gods, for the God of Islam, and for the God who demands blood sacrifice, satisfaction, and compliance that many Christians seem to worship.

I do believe you become like that which you worship over time. I’ll take the God who calls me to love over all else. And if, instead, God actually is as many Christians envision him, a God who expects me to sacrifice even my own children if they do not comply with his demands, then I’ll happily borrow Leelah’s last words to her parents as my response to such a God.

Fuck you.

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James Baldwin for Esquire Magazine in 1960

The below was posted by Kristin Howerton at Rage Against the Minivan. I decided to share it on my little blog as well. It’s sad that when you scratch the surface, there’s been so little change in fifty years. The below could have been written today.

JamesBaldwin-1960

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Thoughts on Obama and the Current Political State

I posted the following as a comment on a post by Fr. Ernesto. I thought I would go ahead and publish it here as well. It may make more sense if you also read the post, but I think most of the thoughts stand on their own.


 

I believe DecodeDC has a much better reality-based analysis, particularly comparing the results of statewide referendums with elections results. I also agree with their analysis that it’s extremely unlikely the GOP will actually get the voter message polling indicates, especially since, ironically considering the election results, GOP approval is even lower than that of the Democrats.

https://soundcloud.com/decodedc/episode-59-gop-wins-bigbut-theres-more-to-the-story

With that said, your comment about Obama going down as one of the 10 worst presidents strikes me as laughable from a historical perspective. History focuses on the major achievements and failures of an administration. So far, at least, Obama really hasn’t had any of the latter — certainly nothing like Nixon or some of the others in the bottom ten. And he has some major wins in the plus column. What do people think of first when FDR is mentioned? The New Deal, of course, of which social security is one of the enduring aspects. LBJ? The Great Society, with its linchpins of medicaid and medicare. And while it falls short of those two measures, the ACA is easily third on that list for the past century. At least, I can’t think of anything else comparable. And the ACA is here to stay. Witness the way Mcconnell had to prevaricate in Kentucky on the issue just to get reelected or the comments of Kasich in Ohio. Moreover, Obama knows it’s his signature achievement, so I expect him to defend it.

Outside that, though much less sexy, Obama did achieve moderate financial reform. Dodd-Frank certainly isn’t the return of Glass-Steagal, which is what we really need. But it does have some real teeth and is a significant improvement over where we were. The Treasury Department and other agencies do now have real power to act in a crisis, which was a major question and issue in 2008.

He’s been fairly typical of post-Vietnam presidents on foreign policy. He’s at least avoided embroiling us in a foreign ground war on questionable pretexts like his predecessor, so that’s a plus. That could change still, I suppose, but hopefully not.

I’m not a particular fan of Obama and really wish a different Democrat had been president these past six years. I don’t believe anyone would have been much more effective against the scorched earth tactics of the GOP, but someone more seasoned might have avoided some of the mistakes Obama made during the first two years when he actually had a Congress in which he could accomplish something. The comparison to Clinton in the 90s is really an apples to oranges one. The GOP he worked with largely knew it still had to govern and tended to set some of its rhetoric aside once elected. (That was true even of the firebrands like Gingrich.) It looks like many of the current crop actually believe the nonsense they spout and intend to actually try to implement it, which, as Kansas and Pennsylvania have demonstrated, is a disastrous course.

I would tend to rate Obama right now somewhere in the middle of our Presidents with one really big, game-changing achievement.

Given that the GOP is unlikely to hear the actual voter message and nothing in their underlying demographics changed in this election, I predict they’ll continue their current course. And 2016 looks likely to follow the course of the last two presidential election cycles. Hopefully Democrats will learn something, but I’m not particularly optimistic about that either. Everything has been reduced to winning the next election and pretty much anything else has fallen by the wayside. Not sure what it would take for things to change.

It doesn’t help that we’re mostly down to two or three wings of one party rather than two actual parties. Democrats have mostly become the Wall Street friendly moderate wing of the Republican Party (with a few exceptions like Al Franken here and there). That’s certainly where Obama lies on the political spectrum. I guess when the GOP purged all the moderates from their party, they had to go somewhere. The GOP now finds itself almost in a war between its far right conservative wing and radical right wing factions. That’s the reason Boehner has had such a hard time since 2010 and I don’t see things improving with this election. As they’ve repeatedly demonstrated over the past four years, to the radical right wing faction, ‘compromise’ means getting what you demand in full without giving up anything. That’s why the GOP leaders have continually been forced to renege on negotiations. Personally, I don’t think that’s been all bad, since I thought some of the compromises Obama and the Democrats appeared willing to make in 2011 and 2012 were phenomenally poor ones. We were saved by the radical right wing’s apparent inability to accept victory with a few token concessions. The problem with no meaningful, organized pull from the left is that the starting point for any ‘negotiation’ today is actually right of center. So today, moderate right-wing Republican policy victories like the ACA are decried as ‘liberal’ because they are somewhat to the left of the now almost entirely far right GOP. (For anyone wondering, the actual left wing position for health care reform has always been some form of Medicare for everyone.)

At this juncture, I think the odds are in favor of at least one more government shutdown next year and perhaps more. I don’t expect much else to happen and I expect the plight of the American people to worsen. And I think plight is a good term for the current state of things. Most Americans now believe the next generation won’t do better than their own. And unless things dramatically change, I tend to side with them.

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The High Cost of Being Uninsured

When people talk about the risks and costs of no healthcare insurance in the United States, they often talk about the risk of something catastrophic, such as a major illness or serious accident. Those risks are significant, of course, but I think there’s another major cost that isn’t being discussed nearly as much. If someone in the US doesn’t have insurance, they are effectively charged dramatically more for everything than someone with health insurance is charged. My wife has had a number of surgeries and procedures over the past few years, so I’ve been able to see that dynamic in action repeatedly, but it’s there with everything from ordinary doctor’s visit to prescription drug costs. If you look at statements, it’s usually called something like the “insurance adjustment” and it’s often massive. I’ve seen the adjustment equal nine-tenths or more of the billed amount.

Remember, this is the amount the charge is reduced before either the insurance company or the individual pays anything. And that single fact is massively important. Let’s say that an individual or family, even with the ACA subsidies, can only afford a bronze plan with a $5,000 or so deductible before it pays much. With subsidies, such plans tend to be pretty inexpensive and should be in the reach of most everyone. A lot of people look at that amount and think the plan doesn’t provide any benefits for them until they have more than $5,000 in health care expenditures.

Nothing could be farther from the truth.

Because of this hidden benefit of being insured, a single ER visit for a minor fracture with x-rays could end up costing hundreds, if not thousands of dollars more for the uninsured patient than for the insured patient even if the insurance company doesn’t actually pay a cent because the deductible has not been reached. Even the difference in the amount charged for a single, simple office visit will likely be more than a month’s subsidized premium for a bronze plan.

Now, if you think the above is a horribly broken system, then I agree with you. But that’s reality in the US today. And as long as that’s the case, the benefits of being insured in America don’t start when the insurance company begins paying. They begin immediately and you receive those benefits even if the insurance company never pays anything at all.

So if you still have no health insurance and either don’t think it’s worth it or don’t believe you can afford it, you need to reevaluate your decision. It’s invaluable and almost essential in the US as things work today and you really can’t afford not to have it.

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The Gluten Free Diet is NOT a Fad Diet!

I wrote the following as a comment on another blog after someone said they couldn’t wait for the gluten free fad diet to go away. Usually I ignore those comments. This time, for whatever reason, I didn’t. The words poured out and I decided to edit it and post it on my blog. So without further ado, here is my response to those who believe the gluten free diet is just another fad diet.

Okay, that’s going to prompt me to pull out my soapbox. ;-) I have to confess, I have mixed feelings about the current faddish aspect of the gluten-free diet. On the one hand, it’s educated the broader population. A lot more people now at least know what gluten is. That makes it much easier for me to explain what I can and can’t eat. Restaurants have become a lot more sensitive and knowledgeable about food allergies, sensitivities, and intolerances in general and gluten specifically. (Even though what I have isn’t an allergy, the treatment is the same as that for an allergy.) And it’s now a lot easier than it was to identify a gluten-free food product with confidence. (Part of that is also a result of the labeling regulations the FDA has developed.)

With that said, it has also led to a widespread dismissive attitude by people who treat it like just another fad diet. Mostly I ignore it, but the stories of restaurant chefs and servers who deliberately contaminate food because they are irritated about this “fad”, though thankfully uncommon, are always in the back of my head any time we eat out. Even when someone isn’t malicious, they can still be careless if they think it’s just a fad. We’re very selective in the restaurants in the area that we know and trust, but there is always that first time you try a restaurant that isn’t already on your list. There have been times I simply haven’t eaten the food because something about the food or the service set off warning bells. ( I don’t make a scene based on a gut feeling, but I don’t like that I have to worry about it.)

Fundamentally, the gluten free diet is emphatically not a fad; it’s a medical diet. Nobody would dismiss a diabetic diet as a fad even if, for some reason, it gained a faddish quality among some people who did not have diabetes.

Celiac disease is at the top of the list of medical conditions that are treated with a gluten free diet. Celiac disease remains widely misunderstood by the general population, even when they’ve heard of it. It’s not an allergy or food intolerance. Nor is it limited to GI symptoms.

Rather, celiac disease is an autoimmune disease like lupus, type 1 diabetes, and a number of other pretty serious diseases. When a person has an autoimmune disease, their body produces auto-antibodies that attack itself rather than an invading pathogen. Unlike all the rest of the autoimmune diseases, we actually know what triggers the autoimmune response for those of us with celiac disease — consuming gluten. In a way, I consider myself fortunate. At least I have a chronic, incurable disease that I can keep in complete remission simply by maintaining a strict medical diet. People who have lupus, for example, aren’t so fortunate. All they can really do is try to treat the symptoms and keep it under control, but they are never symptom-free. And none of the medication is free of side effects. And if the first medicine used becomes ineffective, the next one is actually a chemotherapy drug. Similarly, I’ve known a number of people with type 1 diabetes. They have to follow a fairly strict medical diet, watch their blood sugar, and give themselves insulin shots. And their disease is never in remission or fully controlled.

A lot of studies have been done over the past decade or so, including a controlled study here in the US that tested something like 13,000 people in the general population across the country. So we know the rate of celiac disease. In the US, roughly 1% of the population has active celiac disease. That’s roughly the same rate as type 1 diabetes, making those two diseases by far the most common autoimmune diseases. Unfortunately, nearly 90% of those with active celiac disease remain undiagnosed. Moreover, other studies have shown that the rate of celiac disease in the general population has been increasing for decades and is still increasing. (They tested blood samples going back to the 50s and discovered active celiac disease back then had about a quarter of the rate it currently does.)

And that’s because celiac disease can be largely asymptomatic for years as it creates long-term damage. Or its symptoms can seem unconnected to each other and and can range across all the bodily systems. Since even most doctors still associate it exclusively with GI symptoms, if someone doesn’t present with those symptoms, they never consider celiac disease. In reality, celiac disease has over 300 potential symptoms ranging from the classical GI symptoms to neurological to diseases related to nutritional deficiencies and many more. The list is mind-boggling. Over the long-term, it can trigger other autoimmune diseases. It can cause depression. It can trigger ADHD or make it worse. Active celiac disease can even lead to cancer.

The presenting symptom for me when I was finally diagnosed was iron deficient anemia. However, I was then discovered to have osteoporosis in my spine (now almost completely returned to normal). I discovered the “aches and pains” I thought were just part of growing older largely went away. They were apparently the result of systemic inflammation. I was suffering from depression, which is now completely gone. I had mild neuropathy and “brain fog” now also gone. I was an extremely advanced case when I was finally diagnosed and even after almost five years, my body is still healing.

Active celiac disease will kill you. (Studies have shown it significantly reduces longevity.) And it will do so slowly and with significant suffering.

There is a strong genetic component to celiac disease. If you don’t have certain genes, it’s extremely unlikely you’ll ever develop celiac. As a result, though, that means that family members, especially first degree relatives, of someone with celiac disease are much more likely to have or develop active celiac disease than the general population. So after I was diagnosed, I let all my family members know, including my older children. (Unfortunately, except for my older son, I don’t think any of them have actually gotten tested.) My two younger children were both still minors at the time, so we had them tested as a precaution. We were shocked to discover they both had full-blown celiac disease. They were completely asymptomatic. Fortunately, unlike me, we caught it early with them. So they’ll never suffer the extensive systemic damage I did.

However, the diet is extremely strict. I forget the exact threshold, but something like 20-50 milligrams of gluten in a day will trigger a full-blown autoimmune response. (Yes, they’ve studied that as well.) And even smaller levels can trigger some autoimmune reaction. As a result, we talk about gluten as “parts per million” in any given food we consume to avoid reaching the very small daily thresholds. 20 parts per million is the threshold used in the FDA regulations, if I recall correctly. (Mostly I think that’s because we don’t have a test that will reliably detect lower levels of gluten.) But that means that food that has been fried in the same oil as flour battered items or has otherwise been in contact with a gluten-containing food is typically not safe for us to eat.

Moreover, once triggered by exposure, the autoimmune response can take weeks to completely subside and for the disease to return to full remission. (Generally, the acute symptoms from an exposure, if any, subside in a matter of days, but the autoimmune response itself takes much more time.) I recall another case study of a nun who strictly adhered to the gluten free diet except for weekly communion with only a small piece of the eucharistic wafer. Her celiac disease remained fully active even from that small weekly exposure. (I will note that both the Catholic and Orthodox churches hold that communion with either bread or wine alone remains the fullness of communion and can commune those with celiac disease with wine only.)

The doctors who research celiac disease are trying to get it added to the regular screening process like diabetes and cholesterol. Given that around 3 million people in the US have active celiac disease and roughly 2.7 million of them remain undiagnosed and since the disease can activate at any age, that seems reasonable. It’s especially reasonable since it’s so hard to diagnose from the symptoms and can even be largely asymptomatic for years as it damages the body. Moreover, they now have a blood test that is highly accurate and specific, so it’s relatively easy to screen. But the medical community generally moves pretty slowly on such things. Hopefully we’ll get there.

I’ll put the soapbox away now. But please, even though there is presently a faddish quality to the gluten free diet, don’t dismiss it as simply another fad diet. It isn’t. It’s a life-saving necessity for those of us with celiac disease.

 

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Elder Cleopa on Prayer

Every time I watch it, I’m struck by Elder Cleopa’s description of prayer, especially prayer of the heart. It’s a lot different than how many people today describe prayer, but the Elder describes something living and powerful. I don’t pray well or, as the reporter in the video notes, nearly as much as I should. But I do desire more. In the interim, I pray the Jesus Prayer in my own poor fashion and keep stumbling forward.

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I also note the brief segment in the video where the Elder describes himself as a “rotten old man.” I’ve mentioned in past posts the video I once saw of an old monk saying that all would be saved and he alone would be damned. I’ve never been able to find that video again, probably because I don’t remember any of the context. But the image of that monk’s face as he uttered those words remains fixed in my brain. It haunts me.

It often seems in the Protestant/Evangelical world that there’s often an air of confidence and self-assurance among its leaders that increases as they age and mature. In Orthodoxy, I see the opposite. The holier (at least in my perception) people become, the more conscious they seem to be of their own sin and need for repentance. They begin to see themselves as they truly are and not through the favorably distorting lenses we all wear when we examine ourselves. In Christ, they are able to see themselves in an undimmed glass without being destroyed.

Of course, all Orthodox proclaim themselves the greatest of sinners before receiving communion, following the path of the publican rather than the pharisee. But it seems like the more clearly we can see ourselves, the more we understand that the parable is true; it describes reality.

While I didn’t know it at the time, it appears the monk’s words from the video are deeply rooted in Orthodox monasticism. They appear to come from a story about St. Antony the Great. God told St. Antony there was a man in Alexandria, a cobbler, who exceeded him in holiness. Antony sought out the man, but he seemed perfectly ordinary in every way. But then the cobbler explained that as he went about his day, he thought of everyone he passed by or with whom he interacted that they would be saved and he alone would be lost. That story isn’t in St. Athanasius’ book, “The Life of Antony”, but I did find it referenced in a story of St. Siloaun.  It’s long, but an engrossing read.

Keep Your Mind in Hell and Despair Not

I particularly like the part where he realizes that the existence of mankind is inextricably linked to our own individual existence. “Our brother is our life.”

Indeed.

 

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