In September 2016, I was diagnosed with achalasia—a condition I had never heard of. Only one person out of between 100,000 and 200,000 people has achalasia. With a US population of about 325,000,000, you do the math. Seriously, do the math (I keep getting confused about what to divide or multiply). Chances are, I will be the only person you will ever know who has this weird condition.
I am more fortunate than most who suffer from achalasia in that my gastroenterologist zeroed in on my troubles right away (after I finally made an appointment to see him). Apparently some people suffer for up to a decade before they get an appropriate diagnosis, which given what I have experienced, I find not only bizarre, but utterly horrifying.
So what is achalasia, anyway? It’s a swallowing disorder (or if you want to get all medical, a “motility” disease). There are lots of swallowing disorders out there, but this one may be the craziest. In order to be diagnosed, you have to go through four tests. First up, the typical endoscopy. If you haven’t had an endoscopy in a while, I highly recommend one. For mine, I was given the drug that Michael Jackson took a little too often. And it was awesome! (I totally see why he got addicted.) I had the best 20-minute sleep in my life and woke up completely refreshed. You have to have an endoscopy to “get the lay of the land” and to rule out a bunch of other esophageal problems.
Next up, you have one more test to rule out “pseudo achalasia” (code word for tumors and cancer): a CT scan with a lovely dye injected throughout your system. I would have called this an uncomfortable test, but then I had Test #3, which made all other tests there are in the world seem like a warm tropical island vacation.
The Manometry Study. To explain this test, it’s helpful if you’ve seen The Matrix. Remember those mechanical worm things that set out to destroy Neo and his crew? Well, for the Manometry Study, the technician takes one of those and sticks it in your nose and down your throat, through your esophagus, into your stomach. Without sedation. How I let them do this to me, I’ll never know because I have a gag reflex that is, shall we say, sensitive. Once the tube is in place (and the technician confirms that the patient is still alive), for about an hour, you swallow little sips of water every few minutes. This test measures the muscle pressure of your esophagus as well as the pressure at the Lower Esophageal Sphincter (LES). If you have achalasia, over time, your esophagus loses its ability to squeeze food down past the LES into the stomach. The loss of this muscle squeezing is called peristalsis. My reading was at zero, which meant my esophagus muscle was shot (bummer). The test also shows the pressure at the LES, which is the little trap door that opens and closes. The idea is that the LES opens when food works its way down the esophagus and closes after the food passes through. If you have GERD (severe acid reflux), there’s a good chance that the LES doesn’t close quickly enough after the food passes through, which allows the acid from the stomach to work its way back up the esophagus. But if you have achalasia, the LES doesn’t open in the first place so the food stays in the esophagus. In the Manometry Study, high pressure at the LES indicates the LES stays shut. Yep, that was me.
After all of that, I still had to go through one more test. Just to be sure. The Barium Swallow. I might have been concerned with this test (I had heard plenty of horror stories), but, I tell you, after the Manometry Study, having a Barium Swallow was like going to a cocktail party with your best girlfriends. Even the barium drink seemed pretty festive. The radiologist conducting the test seemed concerned. After shooting the first slides and then exclaiming rather loudly “Oh, wow. Just wow!” and then quickly apologizing for the outburst, I told him I was fine and that I would also like to see these amazing slides of which he was so enamored. You could say the radiologist and I bonded: He, because he was finally seeing a live version of a condition he had only read about and me, I suppose, because I was the live specimen. What he and I saw was a stretched out esophagus, a tight-shut LES, and the barium sitting in my esophagus. That clinched it. All doctors involved agreed.
I have achalasia.
All also agreed that there was only one solution: surgery (scheduled for February 2). If the condition is not weird enough for you, then how’s this? Surgery involves making small slices in the outer wall of the esophagus, forcing the LES to stay open. This is called the Heller Myotomy Procedure. Then, in order to keep the food from just shooting back out my esophagus, the surgeon performs a Nissen Fundoplication (who comes up with these names, anyway?), a procedure that wraps my stomach in some weird position around part of my esophagus to help keep the food down to give it time to digest.
It’s not a cure. Apparently, I’ll never get the pressure back in my esophagus and I’ll always have to be careful about eating. But, I should be able to eat relatively normally after I recover from surgery.
So what have I learned from all of this craziness?
First, those of you who know me, you know how much I love food. I love to cook food, I love to look at beautiful food, I love to read cookbooks, I love to try new foods, I love the texture of food, I love to write about food, I love to talk to other foodies about food. And most of all, I love to eat food. But for the past year (at least), eating has become difficult. I do best when I stick to hot, soft foods like soup. I love soup, so it’s not like I am deprived. But, I’ll admit, even I am getting tired of soup.
Because of achalasia, I have to think before I eat. I have to eat slowly. I have to pay attention to my food. I have to be mindful about what goes into my mouth. And, I’ve come to the conclusion that there is not a single thing wrong with eating that way. So I’m thankful that achalasia has brought me to that point even though it would have been nice to get there in a slightly less painful way.
Second, I’m reminded of what a privileged life I live. I have a fantastic GI doc who suspected I had something other than acid reflux when I first met with him. In just a matter of months because of his insight, I had a definitive diagnosis and a plan for the future. As the doctor told me, this is “serious, but not life threatening.” It seems like almost every month I hear about someone who is young and healthy yet gets a cancer diagnosis. I may no longer be young, but I am certainly healthy and have remained so, even while struggling with this condition.
Third, while I would not recommend this method to anyone, because of achalasia, I have lost excess weight. But it’s weird. Even though I have an extremely healthy self-esteem, I’ve learned that I do have some body image issues. I’ve always felt like I needed to lose weight (even in 7th grade when I was growing about a quarter inch a week and could not eat enough to keep up). My BMI is way within the normal range now and when I fill out those highly (un)scientific online polls, they all say things like “it would not benefit you to lose more weight.” Still, I think I could lose a few more pounds before surgery. I have nightmares that I’ll gain weight about 30 seconds after surgery (how many pizzas would it be possible to eat in my first week of recovery, I wonder?). All told, I have more empathy now for those who need to lose weight, those who don’t need to lose weight but think they do, and those who can eat everything in sight without a care in the world.
Finally, I’m learning that life continues to be one interesting journey. And the longer we travel, the more interesting it becomes. While Easy Street might seem like a worthy goal, it’s really not. So whatever you’ve been handed, make the most of it. Trust me, it’s better than curling up into a ball or sticking your head in the sand. Victor Hugo once wrote, “Many great actions are committed in small struggles.” To be sure, compared to others, my struggles are small. But the good news is I can take my own small struggles and work toward better actions. That’s what I hope to do in 2017. And, at least occasionally, I hope to contemplate these actions while mindfully eating a luscious, crunchy crusted, piping hot pizza.