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.
