Category Archives: Really long posts

The big 6

On Monday, July 29th, I intended to write about a momentous milestone in my life. But I wasn’t sure what to say that I haven’t said already before.

Finally, at the end of the day, feeling the need to mark the date, I went with, in the manner of all aspiring and procrastinating writers today, a Tweet: “As of today I’ve been gluten-free for 6 months. That calls for cake.”

If you’re into brevity, you might want to stop there. (But if that’s the case, I’m not sure why you put up with my blog in general.)

In response to my proclamation, probably picking up on the mention of cake, one Twitter buddy asked me if I ever cheat. We’ll come back to that one.

Another response came from Wendy of Palm Trees and Gluten Free, who wrote to congratulate me. She said, “It’s amazing how that date becomes as important as a birthday!”

I hadn’t thought of it that way, but it’s true. As on a birthday, I had that uneasy sense that I should feel different but don’t. Despite the importance we give to the occasion, a birthday usually doesn’t, in itself, represent a step forward. Sure, a few do grant you special privileges, like your 21st or 18th or 13th (if your parents truly didn’t allow PG-13 movies before then, that is). But by now, the majority of that kind of birthday is already behind me.

Instead, I’ve entered into that vast, undifferentiated stretch of road called adulthood, where birthdays are just markers of another year’s worth of life experience, thought of so rarely that I often can’t remember how old I am right away when asked. A birthday just means another year has passed. Not all at once, but second by second by second until 31,556,926 have fled.

Similarly, although six months’ worth of gluten freedom is a milestone of sorts, there was no reason to think that on the morning of July 29th I would wake up a changed person. Any change between the 28th and the 29th would have been so incremental as to be unremarkable. What’s important is the accumulation of improvements (however piddling) and experience over the course of those six months. Just like a birthday, this day meant no more than that I had made it a certain unknown percentage of the way through my gluten-free life.

As with a birthday, the amount of time the 29th marked seems simultaneously much shorter and much longer than it had really been. Shorter because, as has been observed again and again by writers more eloquent than I, it is in the nature of time to appear shorter when viewed backward than forward.

Longer because January 29th, the day of my official celiac diagnosis, wasn’t the first time I ditched wheat, barley, and rye. Almost three years before, I’d experimented with a diet low in pretty much everything thought to be tough on the gut (that’d be FODMAPs, and includes wheat, rye, and barley); I’d dabbled in “low-gluten” eating (which is basically a joke); and I’d done a whole-hog six-week gluten-free diet trial half a year before. Although it’s been six months of celiac-induced GFdom, gluten has been on my mind for longer.

Also because it’s been an intense six months. “I’m not sick because I’m stressed; I’m stressed because I’m sick”—how many times have I made that response? I still think it’s true, but it turns out not to be true that a diagnosis and prescription could take my stress away (hum that to the tune of the Berlin song). The certainty has eased some worries but added others: that the healing isn’t moving fast or far enough, that XY, or Z might have gluten in it, that I’m driving everyone crazy by talking about it all the time.

In honor of this date, I originally thought I might reveal all of my celiac symptoms on this blog (which you may or may not have noticed I’ve been quiet about, even as I bemoan our collective inability to talk about some of them). This wasn’t because you likely have any desire to know them but because I felt it would be terribly satisfying to cross off all those that had gone away.

But, after the sixth month, the truth is that few of what I believe to be celiac symptoms have actually resolved themselves. The gastro stuff is getting better, a little, but I still don’t know if the rest even are celiac symptoms. All I’ve gotten so far are “maybe”s and “we’ll see”s. To list what remains would be to jinx it.

So instead, dear readers, on this belated half-anniversary of my gluten-free rebirth, I leave you with only a promise: that six months, or twelve, or eighteen, or however many it takes from now, I will have crossed off more of that list. That I will not again succumb to the kind of complacency about my own well being that led to three years without a diagnosis. That I will beat this thing.

And—to answer my friend on Twitter—that no matter how long it takes, and how long it seems to take, under no circumstances and for no reason will I ever “cheat.”

Not even for cake.

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Not enough celiac awareness? I’ve got plenty.

So we’ve come to Celiac Awareness Month. I’m excited for all of the special features and extra blogging everyone will be doing this month, and maybe I’ll even get out to an event or two in the real world. But for myself, I’m mostly going to keep doing as I’ve been doing. Because I’m already celiac-aware. Celiac-hyperaware, you might say. If you split open my skull to check, my brain might look something like this:

celiac_aware_brain

Okay, maybe with a little less space for spatial awareness. But you get the picture.

Point is, I already devote a lot of gray matter every day to thinking about, talking about, writing about, obsessing about celiac disease. If I could only remove tiny hunks of my brain tissue and implant them in other people’s brains to repopulate their awarenesses, then they could think a bit more about it, I could think a bit less about it (and more about my novel), and we’d have ourselves a healthy celiac awareness ecosystem. Like a fecal transplant!

In a small way, that’s what I’m trying to do with this blog. (The awareness transplant, not the fecal kind.) Although, let’s be honest here, most of you are pretty darn celiac-aware already.

When I learned I had celiac disease, I started from a point of heightened awareness. I’d been researching food-related illnesses for some time—call it a hobby—and in my professional life I worked (and still do) with gluten-free cookbooks. I also reaped the benefits of living in a place and time that is in fact more celiac-aware (or at least gluten-aware) than ever before.

But I definitely became more aware once I had it myself. I started this blog, I saw celiac symptoms in everyone I knew, I began musing on grandiose ideas like hosting gluten-free speed-dating events or providing gluten- and allergy-free birthday cakes to kids whose parents can’t afford them. So far, these ideas have foundered on the shoals of logistics. If you live in New York and want to talk about any of them, please get in touch!

Although I’m enjoying this blog and being a part of the smart, supportive, friendly community here on the internet, I’ve struggled with this. Given that I have celiac disease and I think a lot about celiac disease, I feel vulnerable to the claim it’s “self-indulgence” more than “celiac awareness” that fills my brain. I feel guilty.

For example, when I wrote about the connection between hunger and celiac disease, I looked into how one could donate gluten-free food. But then I thought, where was I before I knew I had celiac disease? And even setting that aside, where have I been in general? The hurricane that wiped out huge portions of the New York metro area happened months ago, and no doubt the best time to begin contributing would have been in October.

Plus, hunger was of course a fact long before that, a systemic problem affecting an enormous population nearby me and worldwide. I knew that well before the fall of 2012. Why haven’t I been better about contributing to the solution? Why has it taken me having a problem to want to help others? And why is the idea of donating Rice Chex so much more appealing to me than the idea of donating money to a general fund for the hungry?

Then I get cynical. I wonder, does every celiac disease advocate have celiac disease? Are all food allergy advocates people who have, or whose family members have, food allergies? Are all antiracism activists all people who have experienced racism? Are all GLBTQ activists GLBTQ? Are all feminist activists women?

Is all activism selfish?

Are we all too wrapped up in ourselves to get involved in helping people whose concerns are foreign to us? And is a disabled person who spends his life advocating for disability awareness less noble than an abled person who does it?

I believe the answer to all of these is no. There are people who advocate for others almost reflexively, whether or not there’s a personal connection. There are entire industries built around nonprofits and public service that allow many, many people to work or volunteer in support of awareness or advocacy campaigns of all kinds.

And furthermore, I don’t think activism is really cheapened by being beneficial to its advocates. If someone spends a lifetime advocating for the rights and happiness of a population to which he happens to belong, is that so bad? Plenty of other people are part of the same population, and not doing much to help it or any other group.

A life of service is a good life. Sacrifice and selflessness can support a life of service—but only to a point. If you feel unconnected to your work, you’re more susceptible to burnout. And if you have the impulse to help but allow yourself to be stymied by regret that you didn’t help enough before, or aren’t helping enough people, or aren’t helping for the right reasons, then you won’t end up being helpful at all.

Part of any awareness campaign must be an awareness of just how many things there are to be aware of. There are good and bad causes, selfish and selfless concerns competing for everyone’s attention at every moment. By focusing our energy on one concern, we’re setting aside others.

I aspire to be aware of suffering, injustice, and inequality, broadly speaking. I hope that my daily words and actions demonstrate this, and when they don’t, I hope to be called on it so I can do better. I hope that as my life evolves and settles, I find the time and the energy to help more people more than I do now. And in the meantime, I’ll strive to be self-aware about my own divided awareness.

That said, bring on the Bob’s Red Mill giveaways. I’m ready.

Happy Celiac Awareness Month, folks.

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Forgive me, father, for I have glutened.

h-armstrong-roberts-young-girl-saying-prayer-praying-loaf-bread-wheat-field-backgroundDid you see this conversation over at Gluten Dude’s blog? I am totally oblivious to pop culture, but from what I can tell, this Dean McDermott guy is a public figure who a) has celiac disease and b) regularly eats gluten anyway.

Good former Catholic that I am, this whole McDermott thing got me thinking about sin. That is, how is gluten like sin? How permanently do we blemish our immortal intestines when we gluten ourselves wittingly or unwittingly? And ought the community to strive, shepherdlike, to bring lost celiac lambs back to the flock?

There’s a perception that Catholics can sin as much as they want, because they can always confess later and be forgiven. Even if this idea wasn’t plucked directly from the limb of the tree of knowledge, it isn’t totally unfounded: confession does offer an opportunity to cleanse oneself of unrighteousness. According to doctrine, your sins—intentional and unintentional, venial and mortal—can be forgiven. But, you aren’t supposed to be finishing up your Hail Marys already planning your next coveting session. You’re meant to learn from your mistakes and fully intend to do better.

Similarly, I think that some people with celiac disease “cheat” on the basis that they can always go on the diet and be healed. They, too, aren’t entirely off: on a strict gluten-free diet, symptoms of celiac disease almost always resolve. As long as you’re good for long enough, your intestines can be good as new, too! I can see how it’d be easy for someone who is asymptomatic or who experiences only mild symptoms to indulge in a cookie here, a slice of pizza there—as a person might tell a lie here, steal a few dollars there—with the intention to get clean later.

Is this such a bad attitude? If so, why? For one thing, there’s refractory celiac disease to consider. Continuing to eat gluten may increase the likelihood that you’ll destroy your intestines for good. You could also wind up with an associated disease, like cancer, that you won’t be able to cure by avoiding gluten. As with eternal damnation, at either of these points there’s no coming back.

Habit-building is another piece of this. Every time you “cheat,” you’re hurting your ability to ever be able to adhere to the diet properly. Willpower is like a muscle, in that training it over the long term improves self-control. The repetition of even venial sins and BelVita bars engenders vice. A gluten-free diet for treating celiac disease requires strict compliance: as in penance, you must whole-heartedly orient your life and heart toward redemption. You must turn away from and repugn your past weaknesses. You must exercise rigid control from then on. If you’ve spent years harming your self-control along with your villi, true compliance may be tough.

Finally, Gluten Dude’s post and a lot of the responses point out that Dean’s gluten habit may be hurting his family and the general community. This brings me back to sin, which the Catholic catechism defines as “an offense against reason, truth, and right conscience; it is failure in genuine love for God and neighbor caused by a perverse attachment to certain goods. It wounds the nature of man and injures human solidarity.” Eating gluten while diagnosed with celiac disease is like that: It offends against medical reason and scientific truth, as well as right conscience, if perverse attachment to certain gluten-containing goods does in fact harm your neighbors. All this means it is, if not sinful, at least pretty sucky.

Of course, we’re all responsible for our own health. Sinners gonna sin, smokers gonna smoke, McDermott’s gonna eat. Maybe he doesn’t operate up to his highest possible capabilities on a daily basis, and maybe he’s doing insidious damage to himself that will take a long time to heal if he ever decides he wants to. But we make choices about what to define as best health, and we make choices about how seriously to take our own definition. Every day, we decide to hit the gym or not, to eat a balanced breakfast or not, to smoke or drink or stress ourselves out or not. If Dean doesn’t suffer many symptoms himself, then maybe the benefits of eating gluten outweigh the risks for him. From what I can tell, the medical community recommends staying gluten-free even if asymptomatic in order to protect against future complications—but of course, doctors caution against smoking and drinking to excess, too, often while carrying on their own substance habits to deal with the pressure of their jobs. Perhaps if Dean’s health begins to go downhill, he’ll change his ways.

In the meantime, his public callousness does make the rest of us look awfully picky. Is it off-base to be upset by this? People in the public eye always face greater approbation for their failings, whether it be Sanford for his affair or Lohan for her carousing, because it reflects badly on the conduct of governors and child stars in general and sets a bad example for the rest of us. Celebs like Dean must be at least some part of the reason that we get asked, “Can’t you have just a little?” or “Aren’t you taking this a bit far?” Then again, I do wonder to what extent people outside of the celiac community actually internalize McWhatsis’s behavior as a reflection on celiac sufferers in general. And, as Amanda has reminded me, celebrities have been known to do far worse things than any of the above.

Still, I do think that Gluten Dude made a lot of valid points. I think it’s fair to be annoyed at Dean and others like him, and I think it’s fair to try to educate them. I also appreciate that Dean’s folly served as an ideal jumping-off point for this half-baked homily, perhaps proclaimed to the chirping of internet crickets in the pews. I’m ready to step down from my wobbly pulpit and will leave the rest to you: How do you respond to situations like this? Do you hate the gluten, not the gluten-eater?

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