I fight. Every day. Through clenched teeth and roaring stomachs. Through sharp pains and dull, yet powerful aches. Through the visible and the invisible pains that surround me. I fight. Because what else is there to do?
I stare at the food on the plate in front of me and wonder if I should eat it. It’s almost a subconscious question that I’m barely even aware of at this point, but it’s still there nevertheless. I question if it’s worth it. I question if it will help me more than it will hurt me. I question what I have to do later that afternoon, and if I eat what is in front of me – will I still be able to do what needs to be done?
On a daily basis I question my body’s ability to make the right decisions. To eat something and keep it down. To eat something without being in so much pain that I can’t leave my couch. To eat something and have it fill me with nutrition rather than a pain that I’ve come to compare to being kicked and punched in the stomach repeatedly for hours.
I sit behind my desk at work, or on a desk in front of a class because, well, it’s more comfortable than standing. But not just for my feet. It allows me to relax – as much as I’m capable of relaxing. It allows me to hunch over and apply pressure to the gurgling monster inside of me, while still teaching whatever lesson I managed to muster up that day.
I spend hours at work with a smile plastered on my face. I stay late after school making small talk with other teachers in the hallway, telling them that I’m fine when they ask how I’m doing. I get as much of my work done as possible, because as soon as I get home, the mask falls – and I can no longer contain the pain.
Every day is a new battle. And each day I manage to fight through it – but not without questioning, every once in awhile, whether or not I’ll actually make it through this time.
When I was twelve years old I stopped asking these questions. I gave up. I couldn’t wrap my head around the fact that something that was supposed to help me was causing me so much pain, so I stopped. I stopped eating. I drank water, but that was about it. For eight months.
My parents questioned if I was anorexic or bulimic – unable to understand my pain, because it was a pain they could not see. They brought me to doctors and to therapists – but they only threw labels at things they couldn’t understand. They wanted to blame trauma and bad relationships. They wanted to blame me and my past for something I had no control over.
I’d run to the bathroom for hours after “eating” a meal, because I knew even one bite was going to end up causing me enough pain to result in a fetal position for the rest of the night. My parents refused to let me leave the table until I had finished eating, often hours after everyone else had already left the room. I sat alone. In the dark. Debating whether to eat in order to make my parents happy, or to avoid the food that would cause me to be in pain for the foreseeable future. I tried to find a middle ground. I stuffed the food into my mouth, left the room, and spit it out in a trashcan in my bedroom hoping they wouldn’t find out. But they did. That was when they tried shoving food down my throat. It didn’t go over well.
Most of the eight months occurred during the summer that followed the sixth grade. I was too exhausted to move, to wake up, to be a person. Most people tell me it’s not possible to go eight months without eating – because if I did, I’d be dead. And I promise you ... I wasn’t far from it.
I spent most of my time sleeping, constantly being woken up to join my family in another room, where I would drag myself and then promptly fall back asleep since I had absolutely no energy to even keep my eyes open. I was dragged to doctors where I had to force multiple bottles of liquid chalk down my throat. Sure – I can’t stomach eating anything, but chalk sounds appetizing, so why not?
One doctor listened. One doctor paid attention to every pain and ache – every wince that I tried to hide and every scream that I internalized. She gave me answers. She gave me a diagnosis. She told me there was no cure, but it was treatable. She sent me off with medications and monthly blood tests. She kept my body alive, but I no longer had hope. I was no longer healthy. I was no longer the carefree twelve-year-old that only had to worry about which friends she’d be inviting to her birthday from her new school. She changed everything. And I hated her and her cold personality for all of it.
I have Crohn’s Disease. An inflammatory bowel disease. An autoimmune disease. My immune system overworks by trying to kill itself. It views everything as a foreign object that needs to be destroyed. Food included. Me included. This disease causes my intestines to be inflamed, irritated by any food that passes through – to be ulcerated, allowing holes to form in the lining of my intestines – to have strictures, restricting any food from passing through and forcing it all to go back up the way it entered. I have a disease that fights to control my life on a daily basis – but I fight back.
When I was twelve years old, I was told that I have an incurable disease that will make my life hell, and while no one knows what causes it, it is triggered by stress. Great. I live a high-stress lifestyle. I took seven classes in one semester in high school when I was only allowed five. My resumé for entering college included five pages worth of extracurricular activities. I worked six jobs every summer growing up, because I’d get bored with just one. I took 23 credits per semester in college when the dean tried to cap me off at nineteen. I teach three classes, run three clubs, teach the SAT prep course after school, and manage to have a second job outside of school despite never leaving the building before 4:00pm. I like to be busy. For me, free time results in being bored, so I stay busy. And yes, it’s stressful. And while this works best for my mentality, it doesn’t mean that it’s been the best for the rest of my health.
I used to think that I knew best. I thought that if I felt okay, then that meant I didn’t need the medications that doctors were telling me to keep taking. I didn’t want to keep taking them. I was twelve and the thought of taking dozens of pills every day just wasn’t something that I wanted to live with for the rest of my life. So I stopped taking them. I waited until my parents left the room, I tiptoed over to the trashcan, dumped the pills quietly into the trash, and quickly placed a napkin on top of them so that they wouldn’t be easy to discover. I didn’t want my parents to discover the truth. Deep down, I knew what I was doing was wrong. But that didn’t stop me. I kept doing it. For weeks. Until my doctor called my parents asking if I had stopped taking my medication. Apparently my blood tests were able to determine what I wasn’t: I was quickly declining and if I didn’t start taking my medication again, I would be right back where I had started – clutching my stomach and asking God – a god I’m not sure I even believe in – why me?
So I started taking them again, and have been since. Over a decade worth of medications have built up in my body. But sometimes they decide they’re no longer the right call for me. Sometimes they stop working. Sometimes my health deteriorates so quickly that I lose thirty pounds in a month because my system doesn’t understand how to absorb nutrients from the food I’m eating. Sometimes I’m forced to spend months and years waiting for a new medication to work – stuck waiting, in pain, with no answers or quick fixes.
Every year there are new challenges. New foods to avoid, new medications to try, new coping strategies to employ. And it will never end. I have a disease that tries its damndest to control my life. It tries to get my to quit the things I love. To stop participating in the activities that make me happiest. To stop socializing with the people I have left who truly try to understand what I’m going through. To stop being me.
But I decided a long time ago not to let it win. Not to let it control me. Not to let it get in the way of who I want to become. Instead I use it. I use it to help me understand others. I use it as a way to empathize with those that have more going on than what shows on the surface. To understand that not all emotions or illnesses or experiences are visible. That the person walking down the street in a rush might appear angry or distraught at first glance, but the reasons behind the first glance are endless.
To this day people try to discredit my illness. They tell me I’m lucky to have a condition that makes it so easy to lose weight. They tell me that if I just ate a healthy diet, I’d be fine – despite the fact that healthy food is what causes the most pain for me. They tell me that they know exactly what I’m going through because they spent the last twenty-four hours with a stomach bug. But they don’t know. They can’t know. They can’t even relate – because this condition is unrelatable.
I have a disease that manifests itself differently in every person who has it. Some people can tolerate certain foods that send others to the hospital. Certain people respond well to medications that cause allergic reactions in others. Some people benefit from exercise when others struggle to get out of bed due to the pain. I don’t understand anyone else’s pain better because of my condition. I can’t read minds or prescribe medications or tell people what will work best for them. I can tell them what I’ve been through. I can share my story. I can help open the eyes of others to the fact that maybe that rushed and angry person on the sidewalk might need the benefit of the doubt, because maybe – just maybe – they’re dealing with something that we cannot even fathom understanding.
This is why I won’t wish away my condition. This is why I’m grateful for the things I’ve learned from it and the person I’ve become because of it. This is why I write about it on a regular basis. This is why I became a teacher – because trying to relate, understand, and show others that they are not alone in their experiences is the entire reason I keep fighting.
No comments:
Post a Comment