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Wednesday, December 16, 2015

Time

as the winds whistle through the screens
and the voices bounce from wall to wall
my mind drifts far between
wandering and roaming and waiting its time
for peace and love to enter its life
but time passes by
and leaves us behind
telling us to hold on hope
since love will find us one day soon
it's sure of this it tells us too
that we deserve nothing less
yet lies surround and swirl about
containing hope and all desires
holding them captive and deep within
far above on falling stars
keeping us from holding on
to the ones we once knew we had
that we had let go of in hope of more
through time we waited and desired
until now as we are left
with none

JED243 (Short Story – Fiction)

Pelting the thin glass, the rain causes me to look up every few seconds. I sink into the corner of my thirty-year-old, worn-out, red tattered couch and pull the shoebox closer to me. Old photographs crinkle under my touch as I flip through the contents, and folded articles threaten to rip with each brush of my fingertip.
The box was filled years ago and buried deep within my closet. My husband, Charlie, knew I dwelled on the memories inside whenever I opened it, so putting it away seemed to be the only logical solution. I only came across it when little Gracie decided it would be fun to pull out all of mommy’s clothes, try them on, and leave them in a big heap in the middle of the hallway for Ralphie to turn into his own personal slobber-cave. The box was mixed in at the bottom amongst various other shoeboxes, but got turned upside down when Gracie found no heels inside to clonk around in.
Half of the contents of the box were stuck together from various residues and inks of the photographs over the years. Tucked away at the bottom of the box was a piece of yellowing paper folded three-fold and then folded in half again.

Dear brother,
It’s been four years. Four years since you left me, and mom, and dad. Four years since I saw you smile with your crooked teeth that I constantly made fun of and teased you about. Four years since I yelled at you and told you that you were the worst brother a girl could have and that I wanted you out of my life forever. Four years since I sat in that hospital crying in the corner by the vending machine so that no nurses could take pity on me, put their hand on my shoulder, and say “there there, it’s going to be okay.” Because it wasn’t. It isn’t. You’re gone. You left me. You haven’t come back and I don’t know what to do anymore. You would have been 19 today, Jordan. You would have been 19. Why couldn’t you have just worn your seatbelt?
I miss you, Jordan. I’m sorry about what I said that day. I’m sorry I told you to get out of my life and to never talk to me again. I’m sorry I secretly wished you were gone and wouldn’t come back. I’m sorry I ever said it to your face. I wish you were still here, Jordan. I wish you were here to argue with and fight with and tell me how wrong I was. I wish you were here. I miss you.
And I know I never told you this… but I love you.
Cara ♡

I let out a deep breath. I hadn’t realized I had been holding it since I had read “seatbelt.” I forgot I saved this letter. I forgot it was in this box. All of my memories. Everything that had happened. Everything I had repressed for so many years was suddenly flooding into my mind at once.

~*~

A delicate voice crackled through the intercom once again, urging certain doctors to go this way or that, to do this procedure or that, or simply to tell them their wife was on line three. Blues, yellows, reds, and greens lined the floor beneath her feet, leading the way for each stranger to find their hurt or dead loved ones as they tripped and staggered around. Cara’s feet dangled a good inch above the ground as she sat all the way back in her waiting room chair.
Her eyes watered and her nose tingled as smoke drifted past her. The pleading from nurses echoed through Cara’s ears as they begged her mom to step outside if she was going to smoke. Her mom walked away and found another wall to lean against until a different nurse was forced to approach her. Cara had grown used to it over the years, but whatever was inside that rolled paper that day made her eyes sting with desperation for clean air. It was clear that the nurses didn’t have the heart to call security on her mother. They knew her mother would put up a fight if someone came to take her away. Cara just kept imagining what would happen when their boss showed up to find someone smoking in the waiting room. Other families had already cleared out. Nurses had shown them the way to other waiting rooms where there probably weren’t stubborn, inconsiderate people smoking in their presence. Making a scrunched-up face, Cara tried to get her mom to stop. She thought maybe her mother would stop smoking if it was bothering her own daughter. She was wrong. What did her opinion matter anyway? As Cara’s brother always liked to point out, she was only eleven.
Her fingers wrapped around the two dollars that were crumpled and scrunched deep within the tiny pockets of her jean shorts. Her dad had given the bills to her before he drove off earlier that morning. He didn’t like hospitals; his own brother had died in one. Cara couldn’t really blame him, but she was pretty sure the fact that he left was part of the reason her mom couldn’t stop smoking. The bills had dried out since he gave them to her that morning; they had rested in his clammy palms the entire drive over and were fairly damp then. Unfolding them with a nice crinkling sound, she jumped down off of the seat. Her mom was too busy pulling a new cigarette out of her pack to notice her leave, so Cara didn’t bother to tell her. As her feet shuffled across the length of the floor, she saw the nurse who had just begun her shift. She glanced up with a sour face thanks to the stenchy cloud Cara’s mom was creating. Cara slid her beat-up sneakers across the multi-colored floor until she reached the vending machine.
She pressed B-112 on the machine and watched a bag of Cheetos fall to the bottom, most likely breaking a few of the crunchy morsels in the process. The scent of stale cheese-puffs filled her nose, mixing with the smell of smoke that lingered in her nostrils. Sticking her hand in the bag, she strode back to her seat filled with a calming sensation. Her mouth watered, anticipating the cheesiness that usually grabbed the attention of all of her tastebuds just from the scent.
The Cheetos would help her forget.
Forget the fight with Jordan that morning and forget the spanking from their dad that of course ensued afterwards. But she couldn’t forget the crash that happened that day as they began their summer vacation.
*
“Let go of me,” she said in her extended eleven-year-old squeal as she tried to shake off her brother. He was trying to keep her from running away from him. The moment that he gave up on an argument was the same moment Cara would decide to go tell whichever parent was sitting inside that he had started it. He didn’t want that. He was tired of being spanked by their dad. Fifteen is too old to be spanked and it was getting embarrassing for both of them.
“We should go inside and help mom with dinner,” he said, attempting to distract her. Cara paused for a moment to consider this. She questioned what was for dinner, since that usually played a role in whether or not she wanted to help out. Jordan told her that he wasn’t sure but that it was probably along the lines of some kind of stew since he had seen their mother unloading the groceries earlier that morning; he was still trying to prevent her from running into the house with the wrong intentions of getting them in trouble.
“No. Let go of me. I’m not going anywhere with you.” Cara managed to wiggle her way out of Jordan’s loose grasp and took a few steps back. They were face to face, but Jordan was clearly the taller one, with a good foot or more on her four-foot-five-inch stature. She tried to look intimidating, but she knew it wouldn’t work – not since his growth spurt. “You’re the worst. I wish you weren’t my brother! I wish you weren’t in my life at all. I hate you!” Cara’s voice bubbled out of her mouth as fast as it could. She didn’t like yelling at people and doing so always brought tears to her eyes, but she couldn’t let her brother see she was crying. He always made fun of her when she cried. She ran past him, brushing against the soft, red t-shirt that hung low on his arm since the width of his shoulders was nowhere near that of their dad’s. He had grown out of a lot of his clothes lately and had taken to wearing some of their dad’s old shirts. She nearly tripped up the marble steps to the front door, but kept rushing forward until she heard the screen door swing and click shut behind her.
*
Stuffed into the left side of the backseat, Cara was surrounded by bags of various colors and fabrics – everyone’s luggage packed tightly between her and Jordan. It was her turn to pick the music, so she started pressing buttons on her mom’s iPod Touch, which her mother got as a gift from her sister a year ago, but still didn’t know how to use properly. Music flooded into the car through the speakers. It wasn’t anything Cara recognized, but she enjoyed being in control of the music – it meant for once, Jordan wasn’t.
She glanced up to watch as her family pulled out of the driveway and then went back to pressing buttons.

“--MY GOD!!” Cara opened her eyes in the midst of her mother’s screaming and readjusted her neck, gripping it suddenly as a sharp pain spread beneath her skin. All she could see was a blur of vibrant reds and oranges in front of them as the smell of smoke wafted under her nose long enough to make her cough. Her eyes adjusted. People nearby were tapping on windows, trying to mouth to us that we needed to get out of the car. Cara looked over at her mom who was staring at her husband who was staring into the backseat, unable to take his eyes off of Jordan’s seat.
Applying pressure to her neck, Cara glanced next to her, where Jordan was no longer sitting comfortably beside her. Crushed from the accident, Jordan’s door was pushed inward, taking up half of his seat, the window was smashed, and he was only partly inside the car at this point. Her mother couldn’t move but mumbled to Cara not to look at him. “Look away, honey. Look away.”
Sirens blared as they rushed through the streets. Blues and reds spun somewhere nearby, blinding her for a few moments. Constant blinking cleared her vision as she glanced back toward Jordan. Everything was silent. Her mom’s voice couldn’t break through it and neither could the shouts from the people outside of the car that were trying to get them out. Something shiny glinted in the reflection of her tearing eyes. It was Jordan’s keychain: “243JED” engraved in titanium. It must have fallen out of his pocket at some point during the crash. If only he had been wearing his seatbelt.
Their mom and dad had spent a lot of time designing that keychain. They wanted something sentimental and meaningful for his birthday, but couldn’t afford anything overly extravagant. “243” was the number of letters in each word of “We Love You,” and “JED” were his initials: Jordan Eric Donovan. He had thought it was cheesy when they first gave it to him, and while he would have never admitted it, he loved that keychain. Cara wrapped her fingers around it and never let go.

~*~

Smoke fills my nose again as if I am back at that scene with voices once again surrounding me, making it impossible to stop the tears from running down my cheeks. It had been years since I had thought about the events of that day. Jordan’s face flashes into my mind every day, but I’ve always tried to block out the car accident. My mind had blocked out Jordan’s voice – until now, anyway. Now it was as if he was standing right in front of me, pleading me not to get us in trouble yet again.
I lean forward to pull a tissue out of the box on the coffee table and dab at the tears that are trickling down my face. I hear a yelp, readjust the frames on my face, and glance up to see Gracie dragging Ralphie through the living room like he was her own personal toy.
“Gracie, honey. You have to be careful with Ralphie. Hold him like you hold your baby dolls.” I am surprised by the composure and strength that resonates in my voice. Gracie readjusts her hold on the new puppy and turns around to face me with a big grin on her face. The smile quickly fades as she saw the box that was on the table in front of me.
She takes a step backwards with Ralphie still clutched tightly against her chest, his paws hanging limp and loose in the air. “Uh oh,” she says.
I look down at the box to match her gaze. “No, honey, it’s okay. Come here for a second. Why don’t you let Ralphie go?”
Gracie nearly lies down on the floor in order to place him gently on the carpeting – something we had been working on all week with her. Then, shuffling her feet over to the couch she sits down next to me. I pick up the box and put it on the couch between us. She looks up at me and then slides her eyes down to the dusty box. Realizing she was too afraid to look through it, I stick my hand in and pull out a drawing of Tigger from Winnie the Pooh, handing it to her. She clutches it in both of her hands, as though it was the most important thing she has ever held.
“Jordan drew that for me when I was a little older than you. I was probably about six at the time,” I say, clearing my throat. I put my hand on my daughter’s back and rub it gently.
“Uncle Jordy?”
“Yes, Uncle Jordy.”
“Why this, though, mommy?” Gracie looked up at me.
“Well, because Tigger was mommy’s favorite when she was your age.” I gave her a weak smile. “Your grandma and grandpa helped him with it. It was my birthday present that year.”
“Oh.” Gracie went back to staring at Tigger. “Can I keep it?”
My voice catches. It has been over ten years since I have seen this drawing, but at the same time, Gracie knew very little about her uncle and was probably curious. Charlie had always thought Jordan was a sore subject to bring up, so he made sure Gracie never mentioned him around me. He had good intentions, but it hurt just as much anyway. There was only so much Charlie knew about the situation. We had met nearly twenty years after the accident and by then, I had locked most of it deep inside me – far away from casual conversation.
“Sure, honey. But let’s put it up on your wall so it doesn’t get hurt, okay?”
“Okay.” Gracie smiled and jumped off of the couch, racing into the kitchen to show her dad the new picture she had acquired. I picked the box up and placed it back on my lap, flipping through it as delicately as possible. I could hear Charlie in the kitchen telling Gracie how cool the drawing was and to go in her room to decide which wall to hang it on. She probably told him what I said about keeping it safe.
Something was hidden in the corner of the box. Picking it up, I run my fingers over the engraving just as I had all those years before and wrap my fingers around it, gripping it tightly.
“You okay?” Charlie sits next to me now, placing his hand on my arm sympathetically, like those nurses tried to do all those years ago, but this time she welcomes it.
“Yeah,” I say, as Ralphie yelps and leaps into my lap, knocking the box out of my hands. Charlie catches it before it topples to the floor. “Thank you,” I say, burying my hands deep into Ralphie’s soft coat. “I just miss him.” Charlie squeezes my arm, kisses my cheek, and gets up. Picking up the letter, he goes to return the box to the closet. I curl back onto the couch, watch the rain pour down against the windows, and bury my face in Ralphie’s fur, rubbing the titanium between my fingers.

Thursday, November 5, 2015

Knifed by a Nightmare (Short Story – Nonfiction)

Tears. Dripping, falling, running. Lightish blue, yet also translucently clear. Streaming, soaking, dissolving. All that’s left. Three hours ago. That’s when I got the call. Three hours ago. That’s when I knew nothing could ever be the same. I gave her hand a squeeze, ran my hand over her hair, and pulled her close. There was nothing I could do to make her feel better. So I sat there, and thought about how none of this could truly be real.
The slightly smudged screen on my phone lit up just as I was sitting down to work. New Text Message, it read. Sliding my finger across it and punching in whatever random 4-digit code I was using at the time, I opened her message.
Call grandma., it read. A few more texts were exchanged before I gave a coworker a call and asked her to come sit at the desk for me for ten minutes. Then I went out back, scrolled through my contact list, and clicked call for “Grandma – Florida.” Six rings in, I was about to hang up, when I heard a click. A raspy voice on the other end of the line attempted to clear its throat. Then I heard a distant Hello? coming from what sounded like the opposite end of the room from the receiver.
“Hello? Grandma? Are you there?”
“Hello sweetheart,” she whispered. Her voice wasn’t as strong and filled with life as it typically had been. She usually could tell who I was just from the sound of my voice, but this time I questioned that. We talked for six minutes before I heard someone on her end in the background ask her who was on the phone – to which she responded “your daughter.” My Aunt Bea picked up the phone quite confused, as she had just been on her cell with her actual daughter. We spoke. She handed the phone back to my grandmother and told her who I was. I promised her I’d come visit her soon. And then it was time for her nap. We hung up.
I sent my coworker home and thanked her for her help. I held it together until she left. Translucent drops rolled down my face, magnifying my freckles as they made a run for my chin. I wiped them away, only actually smearing them around my pale skin. She wasn’t herself. She didn’t sound like herself. The woman who had been the embodiment of life my entire existence sounded like she didn’t even know what life was anymore. Tears.


The eggs were runny and the french toast was a solid brick, but I was at a table with four friends who were making me laugh and distracting me enough to get my mind off of everything from the night before. I was going to call her again after breakfast.
I reached into my pocket to check my phone and found three missed calls from my father, two from my brother, and a voicemail. I raised it to my ear and listened to a very hollowed and empty voice tell me to call him back as soon as I could. Instead, I clicked on my brother’s name. He told me she was gone.
I hung up and called my dad back.
“Hi honey. You get my voicemail?” My dad’s voice always sounded harsh – strong, maybe. Compassion wasn’t his best quality, but he definitely tried.
“I spoke to Mike,” the statement barely made it out as a whisper.
“I’m so sorry. I wanted to be the one to tell you.” Silence.
“How is she?”
“Not good. She hasn’t spoken since she found out. She’s pretty numb.”
“I’m coming home.” I put my hand down against the windowsill at the dining hall. I needed something to hold me up. I needed some way to hold everything in and just finish this phone call.
“Don’t. It’s not a good idea. I don’t want you driving and upset. I’ll come pick you up tomorrow if you want, but stay there today, okay?”
“Okay. Give her a hug for me?”
“Okay sweetie. Talk to you later. Love you.”
Tears. Deep breath. More tears.
I took another deep breath and walked back to the table where my friends were. One of them knew about the call from last night. One of them knew how hurt I was. One of them could tell something was wrong. I stayed fairly composed until I saw his face. Until I saw that he cared. And that I could open up – that I could break down in front of him. And so I did.
I took a deep breath. “My grandma died this morning.” I got patted on the back and there were a few loose hands grasping at my arm telling me they were sorry. I’m sorry too, emotionless hand. I’m sorry too.


I got into my car and cried. Tears. Gasping breaths and tears. I drove two hours home, blasting music to try and keep my mind off of it. But then I thought about her smile. And her strong love of perfumes. I remembered her incessant need to tell everyone everything and her love and compassion for family. All friends were family to her. Everyone was family.
I walked in the door and saw my dad in the kitchen.
“I thought…” he started.
“Where is she?” I interrupted.
He pointed behind him towards the living room. I dropped my bags on a chair that was in desperate need of cleaning and rushed into the adjacent room. My mom could barely look up at me. She couldn’t feel anything.
“What are you doing here?” she managed to mumble as I slid in next to her on the couch.


“I’m here for you. Always here for you, mom. I’m so sorry. I’m so so sorry.” I brushed her hair out of her face and held her next to me. We rocked back and forth like that for awhile. I slid a few light jokes her way to make her laugh. But mostly we cried. Tears. Streaming, rushing, running, soaking the clothes we couldn’t bother to change. She was gone. And we were numb.

Saturday, October 24, 2015

Trapped

surrounded by Darkness
walls moving in
closer
and closer
inch by inch
each inhalation
drawing them in
pulling them closer
On top of you
until stopping
is all you can
do
to survive
No breaths
closed eyes
darkness Envelopes you
and finally
there is nothing left

Thursday, July 9, 2015

The Fight

Sometimes I feel myself slipping
Drifting
Falling through the
Cra cks

It's not worth it
none of it
is worth the pain
the loss

and inability
of lifting the weight
anymore
But they tell me

They understand
And to keep fighting
But I don't --
want to

Not for them.
So I'll show them
That.
By fighting

for Me.

Thursday, June 25, 2015

Passing the Past (Old Found Poem)

you were once there
right by my side
the way you said
you always would be

but you lied
in the blink
of an eye
without even a glance behind

you're long gone
only around in hauntings
leaving me
questioning

what's real
who's real
and if anyone really means it
when they say
they'll be there

Monday, May 18, 2015

Unrelatable (Short Story - Nonfiction)

1-10 has never been never my scale. The unnerving pain that either felt like sharp needles digging deep into my stomach, millions of knots filling it, or sharp shooting pains that resembled what I believed it would feel like to be shot in the stomach could never be restricted to a 1-10 pain scale. Clearly 1-100 wouldn’t be realistic either; so I settled on 1-20 for most scenarios.


Crohn’s Disease belongs to a group of conditions known as Inflammatory Bowel Disease (IBD) and is a chronic inflammatory condition of the gastrointestinal tract. IBD incorporates both Crohn’s Disease and Ulcerative Colitis, which are two entirely different conditions – although they are often lumped together. They differ depending on what part of the gastrointestinal tract they affect. For example, Ulcerative Colitis affects the colon (large intestine) and Crohn’s Disease affects the small intestine. Most websites that take the time to define these two diseases specify where in the gastrointestinal tract the inflammation occurs – but this is where the descriptions get tricky. Crohn’s Disease is different for just about every individual. While the most common cases are called Ileocolitis and Ileitis, which both affect the ileum (the last portion of the small intestine), there are at least three other forms of the disease, and each form has a different list of symptoms that might not be entirely accurate for each individual living with it.


March through October. Roughly eight long months of scrambling parents, running to bathrooms, and applying as much pressure to the upper left part of my stomach as possible. No one knew what was going on, but no one wanted to know more than my parents. Watching me dart from the table and run to the bathroom in fear of getting sick each time I ate any type of food, my parents pondered the thought of anorexia nervosa or bulimia nervosa. Looking back on it, they’ve told me that they were just trying to be realistic – considering every possibility since they couldn’t figure out what was going on. The doctors weren’t helping much in the beginning either.
In August I weighed myself for the last time during my diagnosis process. I was at the lowest I can remember ever being: 77 pounds at age twelve. My dad tends to describe this summer in a few different ways, but his favorite always being that he was able to nearly wrap his hand around my upper arm twice. I hadn’t had food pass through my mouth in months. Food hurt me. My body saw it as the enemy and changed my perception of it from something I needed to survive to something I needed to avoid at all costs.


Gastroduodenal Crohn’s Disease. This is basically what I have. It’s a form of the disease that involves the stomach and the duodenum, which is the first ten inches of the small intestine. Typically, people living with this type of Crohn’s Disease suffer from nausea, weight loss, loss of appetite, and if the narrow segments of the bowel are obstructed, they experience vomiting as well. Sounds lovely, doesn’t it?
This being said, if anyone looks up Crohn’s Disease for themselves, the typical symptoms are: diarrhea, fever and fatigue, abdominal pain and cramping, blood in stool, mouth sores, reduced appetite, and weight loss. My symptoms? No desire to eat, skeletal appearance due to drastic weight loss, surging and writhing abdominal pain and cramping, inability to function in my daily life due to loss of energy, depression, and the mouth sores that I’ve spent a lot of time trying to forget. The mouth sores that are often associated with Crohn’s Disease are basically ulcers inside your mouth, similar to the ones that would be found throughout your gastrointestinal tract. Fun, right?
On top of all of that, Crohn’s Disease is an autoimmune disease. It chronically fights itself. It views itself, food, and medications as foreign objects and tries to fight against them, eventually destroying itself. Because my immune system overreacts and works too hard, I now no longer have one. If I move away from you when you cough or sneeze on the bus, in a class, or at a party – don’t take it personally. I can only fight myself; I can’t fight off you.
My mom’s voice would often wake me up at 3:00 in the afternoon. The soothing hums would waft through the open doorway of my bedroom. This had become a regular occurrence. She’d wake me up in fear of me sleeping the entire day away and then not sleeping later that night, which was never actually a problem for me. Six months of not having anything to eat and my body was rebelling. It had no energy and was punishing me by not allowing me to live. She’d wake me up and invite me out into our living room to join the rest of my family to watch television – or something of the sort.
I’d drag myself out of bed, force my body down the hall limb by limb until I arrived at the smaller of the two couches in my living room. Dropping myself onto the worn-out leather cushions, it was a matter of minutes before I was asleep again. That summer, a lot of people told me I’m cute when I sleep.


There is no known cause of Crohn’s Disease. Recent research has been suggesting that the cause might be due to hereditary, genetic, and/or environmental factors – some research is even suggesting that it is the interaction amongst all of these factors that contribute to the development of the chronic, inflammatory condition. My father has always had stomach problems. He’s borderline for the diagnosis. Basically, he has all the symptoms but receives none of the treatments. Two of my aunts have it as well.
Another interesting feature of Crohn’s Disease that seems to be causing many scientists and doctors to be scratching their heads, is the fact that this disease is more prevalent in a specific Jewish population from Eastern Europe known as Ashkenazi Jews. Something to do with inbreeding or incest within ancestors. I’m not entirely sure, but I am Jewish, so I suppose this affects me one way or another. So despite there being no known cause for the disease, scientists are attempting to focus on genetics and hereditary qualities. In the meantime, they only seem to be able to diagnose people based on symptoms and signs of inflammation.


Nine years ago, when I was twelve years old, my doctors were still trying to figure out what was going on inside me. Once they determined it was some form of inflammation, they started me on Prednisone – a steroid. This medication has saved my life various times, but this first one is the most prominent in my mind. After a couple of months on these pills everyone could see a difference. Granted, I still wasn’t gaining any weight, but I had more energy than I knew what to do with. I’d wake up incredibly early in the morning during my winter vacation from middle school, make my mom coffee (five cups), empty the dishwasher, finish the laundry that we had probably put in the night before, mop the floors, scrub the counters, dust the television, and sit down to start my book reports that had been assigned for the break. I remember that vacation more vividly than the entire summer I was sick. My dad was ripping up the carpet throughout our house and self-installing a wooden floor. It looked great, but because of the work involved in setting wooden floors, all of our living room furniture was in our kitchen. I remember jumping over couches and maneuvering my way around televisions and back again, just because I could. I had the energy for it. I could get up and walk without falling over and I could stay awake without someone constantly propping me up throughout the day.
After months of being on the steroids, I began to look like a chipmunk. Friends asked if I had had teeth pulled. People stopped saying I looked great. I had not only gained the weight back that I had lost, but I added to it. As much as the Prednisone saved my life, the teenage girl in me will always hate this medication for how it altered my body at a time when I was already self-conscious of my appearance.


The medication list for Inflammatory Bowel Diseases is constantly growing. I suppose this is a good thing, because it means that people are still researching and trying to discover new treatments – but in reality it’s because it’s necessary. When I was first diagnosed with Crohn’s Disease, my doctors looked directly in the eyes of a na├»ve twelve year old, and told me that no one dies from the disease. Well, I say bullshit to that.  If those statistics are accurate, it’s only because no one was diagnosed with it at the time of their death. Had I gone on for another month or two of my life without eating, I would not be here right now. So, bullshit. There is no way that no one has ever died from Crohn’s Disease. Thanks a lot for trying to reassure younger-me, but you just made older-me angry instead.
Prednisone, Imuran, Mercaptopurine, Methotrexate, and Humira. Do these mean anything to you? They work to reduce inflammation and to return my body to a state of remission. At a point in my life, that didn’t mean anything to me. In fact, at one point after I had been on one for awhile, I decided on my own that I was healthy again and I didn’t need these medications anymore. I stopped taking them. I’d quietly throw each pill out every night and place a napkin or a tissue on top of it in the trash to make sure my parents never found out. But they did. Because I stopped being healthy. Months passed and my blood tests results began to decline drastically, and my doctor began following up to see if I was still taking my medicine. I wasn’t. But I tried to keep lying for awhile. I remember sitting on the brown, worn-out couch in between both of my parents the day that I finally told them. I never said anything. I just nodded my head when they asked. Tears rolled down my face, making a plop sound when they landed on the leather next to me.
X-rays, blood tests, upper GI (gastrointestinal) scans, endoscopies, colonoscopies, dye infusion scans – the examinations went on and on, because each test only reaches a certain part of a person’s body. My inflammation was and is in my duodenum. Endoscopies only reach into your stomach and colonoscopies don’t go much further than the beginning of your colon. Upper GI scans require the patient to drink Barium, a chalky liquid that is used to outline one’s entire digestive tract to make it easily viewable through special x-rays. I’ve had to drink this stuff twice. The first time it took me about three hours to get through one bottle (of the three I had to drink). I cried. It tasted awful, I was in an obnoxious amount of pain, and even my mom couldn’t help me feel better. What was worse is that none of these tests showed anything. Being poked and prodded for months did me no good, besides develop bruising up and down my arms and across my torso. I still had no answers. After months of testing, my doctor finally starting treating me. They diagnosed me without 100% proof of the disease, but based on my symptoms, they knew they had to act soon. And as a twelve-year-old, I couldn’t care less. I just wanted them to make the pain go away.


That summer. When no one knew what was going on with me. When no one knew what to do to help me. It was 95 (DEGREES) outside. I wore a sweatshirt. Baggy clothes were all that I owned. Pant sizes went down a bit, but I never got out of my pajama pants, so it didn’t seem to affect my wardrobe at all. Everything hung off of me as if I purposefully meant to buy them to be too big. It made me look sicker than I actually was. No one knew that was possible.


The majority of my life has been spent receiving suggestions from people who believe they understand and know better about what I’ve gone through and continue to go through.. Hearing comments of, “You look great!” when I’ve lost fifty pounds in a timespan of a month isn’t helpful. Having people suggest that I try to diet or eat differently and then maybe, just maybe, my stomach won’t have these “problems” anymore, isn’t something I can continue to nod along with for much longer. Being told that my face looked like I had my wisdom teeth pulled out just yesterday, when in fact I had been on seven months of corticosteroids to help stabilize my body and reduce the inflammation, just furthered the self-conscious thoughts that ran through my head on a day to day basis. “You’re so lucky! I wish I could lose weight that easily,” is possibly one of the worst comments I’ve received and it was met with a blank stare.
Going away to school, my parents had many worries when it came to my health. Telling my roommate about my pain scale only seemed to frighten her.
“Should I contact your mom?”
“Only if it’s really bad,” I told her.
“So on a 1-10 scale, when should I call her?”
“Not 1-10. More like 1-20. And when it’s over a 17. I can handle it up to a 17,” I explained. Last semester I hit a 17. But I didn’t tell her. Hiding it is what I’ve, inadvertently, been trained to do.
Crohn’s Disease is not a relatable condition. I could spend hours telling you about the pain that I’ve gone through and the specific moments that I remember, but the truth is – even other people with Crohn’s Disease won’t understand, because the condition truly is unique to each individual. I’m lucky: mine isn’t nearly as severe as many others that I’ve read about and met over the years. But the level of pain that I associate as my normal everyday experience cannot be compared to your two days of food poisoning. My normal might be someone else’s pain level of a 6 or a 7 on their 1-10 scale. But I have no way of knowing their interpretations of pain, either. All I know is that I spent my teenage years hugging trashcans and experimenting with (doctor-approved) medications and crying myself to sleep at night asking God – a God I’m not even 100% sure I believe is up there – “Why me?” because I truly did not understand why living meant having to endure so much pain.