Friday, September 11, 2015

This is the Story of Me


I’ve been trying to write this post for probably longer than I’ve had this blog. Normally the things I post are outfits and maybe some daily thoughts or reflections. This is different. This is me. This is the side I have never before put on this blog—this is the side where even if you know me personally you rarely see—but this is me. This is what steers my days and has so drastically changed my life that I fear I can’t put it into words.

 This is me—Misha—a girl with Achalasia.

 Exactly two years ago today I went in for surgery at one of the top hospitals in the US because of Achalasia. Google describes it as “a condition in which the muscles of the lower part of the esophagus fail to relax, preventing food from passing into the stomach.” That’s Google’s explanation—it’s just a condition that makes it difficult to swallow. Those who’ve experienced Achalasia will tell you a different story—a story like mine.

 Right before I started to write this I was pacing in the office of where I work with hiccups—painful hiccups. They were loud and they echoed in the empty office. My chest was puffed out as I tried my best to breathe. Saliva and chewed up bits and pieces of a peach tried its way both up and down my esophagus. I couldn’t sit—I had to stand, though I was dreadfully tired and my head was pounding from a headache. I couldn’t sit, because it would make it harder to breathe. It would make it more difficult for the food to go down, for it to reach my stomach.

 It didn’t go down. It felt like something was trying to push its way out of my chest. I feared that the phone might ring. It would almost be impossible to speak as my meal tried its best to find a way of escape.

 Instead I went into the bathroom. Bending at the waist, giving little encouragement, undigested bits and bites of the peach came out. It is mostly the work of gravity; and sometimes once is enough. But not most days, most days it takes at least three times for the attack to pass. I have to repeat the process of regurgitating my meal until my esophagus is clear. It can take hours to a whole day, sometimes causing me to wake in the middle of the night.

 On the worst days the process is so violent that the blood vessels around my eyes burst. They spread across the high of my cheeks almost like a war cry—a tattoo of little red freckles. In a few days they will fade, but in the beginning my skin will burn and sting reminding me of the battle I just fought.

 But not that day, that day I was lucky because most of the pain left quickly and I didn’t have to throw up again. But even afterwards I could still feel that peach in my chest, still trying to gain entry to my stomach, as food should.

 But finally I could breathe. It takes fifteen minutes, fifteen uncomfortable minutes, but the feeling leaves and I can eat or drink again. This was an easy flare. It is almost an ideal attack, in which it only steals half an hour to an hour of my time.

 After it fades I find myself hungry again. I’m ravenous as my stomach realizes that it never got the food it was promised. But now, now I’m far too scared—too worried to risk eating again.

 When I started writing this post I was twenty, I’d been sick for five years—a quarter of my life. Two more years have passed and five turns into seven and it feels like forever. There is no cure for what I have. I’ve had surgery for it. Afterwards many thought my problem was magically fixed and didn’t bother to ask again about my trouble eating. They don’t realize that it stays with me day after day after day. I have to apologize to them when I can’t finish my meal or even swallow my drink—because it might not stay down.

 With this disease, before you’re diagnosed, especially if you’re a woman, doctors will tell you that it’s bulimia and they won’t take you seriously. Eventually even your friends and family begin to wonder if it’s all in your head. Doctors gave me pills and mixes, but they never worked—they couldn’t work as I couldn’t even swallow most of them. I was told I was too young for this; I was told I looked too healthy. I was told I was imagining it.

 These doctors wanted to send me to a psychiatrist, because what I was experiencing wasn’t real—it must have been made up, perhaps for attention. Doctors told me it was impossible to have food rest where I claimed it did. They said food doesn’t get stuck; it goes straight to the stomach. I was told to just not think about it. If I didn’t think about it then I wouldn’t throw up, they explained. After a while I found myself doubting if what I was experiencing was real, just like the doctors. But too many hours were spent in locked in the bathroom, lying beside the toilet, as my body refused to accept what I had tried to feed it. Overwhelming pain silenced me, until it couldn’t be held back anymore and I would fall crying for hours because of these scars I couldn’t see, no one could see, but I knew were there. It wasn’t made up for attention—I would never have cursed myself to such a hell.

 “You look good!” I was told, and obviously how one looks must reflect how they feel, how well their body is surviving. I taught myself not to complain, not to bring it up—anything so that I wouldn’t get that look of doubt from those who were supposed to know me best.

 Eventually, I was referred to a doctor who looked at X-rays from a year old barium swallow. He listened to me as I told him that it felt like something was stuck, that I couldn’t breathe, and that it wasn’t like heartburn. I told him how Nexium and Zantac never helped—that they seemed to make it worse.

 At this point I hated eating. I wanted pills like I’d seen on Star Trek—just one pill to replace a whole meal. I didn’t like going out to restaurants, something I used to love. I hated, I was embarrassed, to eat in front of people. I often think about one meal where I went back and forth to the bathroom at least five times, all because I couldn’t keep more than five bites of my pasta down. Hours after I had swallowed my last bite I was still throwing up. By now it was just saliva, but it didn’t make it any easier. It was one of the worst days of my life. Hours away from home and I couldn’t keep anything down—not even my own spit. I couldn’t even breathe.

 This one doctor, after listening to me, said he believed he knew what was wrong. I had been in the room five minutes at most. I feared he would say, like many others, that it was all in my head. He pointed to a constriction where my esophagus met my stomach. The construction looked like a bird’s beak. “I think it’s Achalasia,” he said. Relief flooded me, he thinks it’s real. But I’m so young, he wants to be sure. He decided to send me to a specialist.

 To assure it’s Achalasia I take a manometry test. It’s one of the worst experiences of my life. A long tube gets pushed into your nose, down to your throat, and eventually into your esophagus to gauge the pressure. Fifteen minutes of swallowing water to guide the tube down—but I have Achalasia so it’s thirty minutes of throwing up the water, sobbing. Eventually the tube gets where it’s supposed to be. The nurse isn’t supposed to tell me anything, she’s supposed to wait for a doctor to look it over. She told me there was definitely something wrong. It is Achalasia.

 The pain of the test lasts for three days, making it more painful, more difficult to eat.

 After another barium swallow where I actually see what’s happening when I swallow—throwing up some of the solution along the way—I’m diagnosed with Achalasia. Everything should change, I should feel vindicated. Years of people telling me I was crazy and thinking it was all imagined—I should feel better. I don’t. I worry that the diagnosis might be wrong and I don’t want to be sick, I just want to be normal.

 There is no cure. Three treatments are suggested: Botox injections to relax the muscles, but I’m too young and the injections need to be done every six months for the rest of my life; balloon dilation where they put a balloon down the esophagus to stretch out the muscle that isn’t working. This is also temporary and can last only a few years. Then there’s surgery. They make five incisions and cut the muscles open to allow food to pass and wrap the stomach to stop stomach acid from coming back up. It is said to be more permanent, but even it might not last forever. Even it won’t fix me.

 I researched for hours, carefully looking at real life results from each of the treatments. I chose surgery, despite my fears—my anxiety.

 Looking back, it’s scary. Looking back it feels like my whole life I’ve been sick. The blur of health is so far gone that I can’t even remember what it was like. Seven years of a pain that others couldn’t understand and seven years of feeling insane. Vindication doesn’t ease the pain or the fatigue; it doesn’t shove away the fear of eating in front of others and it doesn’t heal.

 It’s funny somehow that even with a name and a surgery people still can’t understand—it’s funnily annoying that people still doubt whether or not you’re sick. They can’t realize how real it is, they can’t realize how much I’ve struggled.

 I don’t like talking about this. I don’t wear a badge proudly to explain me. I still fear eating around others. I’m always quieter at meals, focusing on not going past the point of no return. Everyone, no matter how long they’ve known me and whether or not they know about this condition, they still watch me when I eat and wonder why I don’t finish the food on my plate. They wonder why I play with my food and hardly touch my drink.

 I thought somehow that this might help to explain it, it might help them to understand; but as I come to an end I think it was mostly for me. I think for once I needed to admit it, admit that my body isn’t perfect. So—I apologize if I don’t finish all that’s on my plate, if some days I can’t come out because I’m too tired, and if I don’t want to drink because I don’t want to feel the pain. I have Achalasia and it comes with a lot of side effects—please forgive both them and me; but mostly realize that it’s real and accept my limitations.

 I have five scars now on my stomach. They are my own memorial. At my worst they remind me how strong I can be.

            This is the story of me.


Ach·a·la·sia (akəˈlāZH(ē)ə/) is explained as a disorder of the muscle. The word Achalasia actually means failure to relax. What it really means is that the muscle that lets food pass into your stomach has decided to rebel—it wants to be a little punk that won’t accept food when you eat. In objection the nerves in your upper esophagus stop working—stop pushing the food down; making you realize just how much eating was once a comfort. 

2 comments:

  1. Misha... thank you... thank you for sharing your story with us. I, for one, never knew what was going on in your life. My heart goes out to you and my thoughts are with you. Perhaps one day there will be a permanent solution. Until then, your courage and strength are an inspiration to all. The chronic pain I have right now pales in comparison, and it's very humbling. Thank you for helping to put our lives in perspectve.

    Tim Hawkins

    ReplyDelete
  2. Thanks for telling us about your life and its difficulties. I remember that shortly after your surgery, I had a patient who came back from that same surgery. Knowing about you really helped me to learn more, give her better care and education. And help me be more empathetic. In the scope of your life, that's a small thing, but I believe you indirectly made a positive impact on someone else.

    ReplyDelete