Unchained.

What would you do if you had a literal ball and chain attached to your ankle? It was stuck there, and you had no way of getting it off.  The cuff dug into your skin, and the chain was loud and ugly. It was so unbearably heavy. Would you lay in bed all day to give your leg some relief? Would you lay in bed all day to hide it so you wouldn’t have to explain why you couldn’t just take it off? Would you drag it around with you? Let it clunk down your stairs every morning, trying to dodge the iron ball that could potentially smash your fragile toes? You couldn’t go anywhere without dragging the heavy, painful imprisonment with you. You couldn’t do anything without a reminder that you were trapped by this awful, torturous thing every second of every day. Your ankle bleeding, your legs permanently bruised from the damaged. And you would know, that no matter what you did, it would still be there tomorrow. And it would be there the next day. You know that even in 20 years, you would still be burdened with your permanent ball and chain. How could you enjoy your day while you were constantly in pain? How could you look forward to anything if you knew that there was nothing you could do about your situation? What if others, especially professionals - locksmiths who might help you get it off- said you had done this to yourself for attention, and they dismissed you and mocked you? What would help you to keep going day to day? My readers, how would you feel about yourself if this happened to you? How would you honestly react? You would be faced with lifetime guaranteed of imprisonment, uncertainty, of pain and of fear. How would you have hope?

My ball in chain seems to have a fancy name - myalgic encephalomyelitis. I have most recently been battling not just physically, but mentally, in every aspect of this illness. Having hope and faith is the only way to keep my sanity. Everyday I wake up knowing that I’ll struggle. I know that no matter how many hours of sleep I’ll get, I’ll wake up exhausted. I’ll wake up and have to immediately take my medication to get through the day. I know I’ll be forced to stay on top of the pills, injections and IVs to barely function out of bed. I know some days, I won’t be able to get out of bed. I don’t know if I’ll be healthy enough to live on my own to attend a university in the fall. I don’t know if I’ll be well enough to ever maintain a job, or support a family. I don’t know if my body will even allow me to make a family, or have healthy children. It seems this illness took over my body, and left me with self-hatred and no self-esteem. Often, I feel weak. I feel worthless. I feel scared. I feel guilty. These are feelings I’ve often tried to suppress and cover up in attempts to stay positive. But I’m finding, for myself, the true positivity and strength has come from addressing these issues within myself and working through them. I am not currently being medically treated for depression, nor do I believe that I am clinically depressed, but I would like to address these feelings in which I’m afraid others with this illness may relate to.

Honestly, I’m an obsessor. I over-think, I over-analyze, and I am overly critical on myself. I am also the biggest worry-wart ever. Before falling ill, I welcomed every challenge. I pushed myself as a student and athlete. I wanted to be the best of everything. Now, I’m forced to be okay with myself and my body. I’m learning to love myself. Before I consciously made an effort to stop, I would continually be disappointed in my body and what it did or couldn’t do. I got angry that I had no control over my body or legs. And mostly, I felt like a burden. When I first fell ill, I felt as though I stopped being the fun, carefree and capable girl, and became the patient. I felt so guilty that my parents and family have had to sacrifice so much for me and my health. I knew my best girl friend stepped up and had to start looking out for me everywhere we went. It hurt so much to know that I can’t be the energetic friend for her all the time. But, the hardest thing I’ve had to wrap my head around is how my boyfriend continually loves me. He met me after I first started to fall ill. He got to know me as my illness progressed. He didn’t owe me anything to stay around as it got worse. Almost a year later, and he still loves me. How could he love me, when I hated everything about my body and my situation? And why did I resent and feel guilty that he, among my family and friends, wanted to help me and take care of me? It’s because I felt unworthy. I felt because I had this illness, this ball and chain, I was truly undeserving. I write this in past tense, because I no longer allow myself to think this way. I was made from God, and God made me in His image, His perfect image. I am perfect, and worthy of love. Just as I allow myself to be loved, I will love myself.

This is the most honest I’ve ever been with myself. I truly believe it’s taken more courage to write about this and address my insecurities than it has to have kept them bottled up. My illness is scary. It sucks. I know that I can only find the strength to have hope and faith within myself. My beautiful, disabled self. I’m an obsessor and a worrier, but I’m also a lover. Yes, a lover. I am finding the love in myself, my spirituality, and my relationships... just in time for Valentine’s Day! I still strive for humility and will hopefully never catch a case of ugly narcissism, but I feel the conscious change in my efforts of how I’m thinking about myself and my body will make a positive difference. I’ve struggle with anxiety, and I’ve found even just talking to myself can be more effective than any dose of Xanax. I often just repeat to myself, “I am calm, I am safe, I am perfect, I am loved” over and over until I believe it. I’ve been happy with the world and even my circumstances, but now I’m learning to be happy with myself. Whether you’re in a relationship or not, I encourage you to be your own Valentine this year, and find the happiness in yourself! Our emotions are our own, and because of that, they are beautiful and necessary. Do not be ashamed of how you feel! Just learn to laugh, and grow in love. I am diagnosed, but I am not defined by this “ball and chain” of an illness. And despite the heavy burden of my ball and chain, I will still love myself. And this statement rings of nostalgic tunes but... all we need is love.

School.

Unfortunately, when I got sick last winter, I had to drop out of everything, including school. After a few months, I started home-school to try and pick back up where I left off. Thankfully my school was beyond understanding of my situation and made every possible accommodation for my education.
After the summer, I was able to attend Sinclair Community College as a dual-enrolled student. This meant I got high-school and college credit. The school program PSEO (post secondary enrollment options) payed for the tuition, classes, and books. This was easier for me because I only had to go to class 3 days a week for a few hours. I registered with the disability services there, and they made sure my situation was understood by my professors so it wouldn't affect my grade. I took a math class, a chemistry class, a sign language class, and an online english class. It was full-time and it kicked my butt.
For the students and professors who first met me, they would never have known I was ill. They didn't see how hard it was for me to get out of bed that morning and drive myself to the college. They didn't see me struggle to walk to class and carry my backpack. They didn't see me taking my medications in private to avoid weird looks or conversation. They didn't see me throwing up in the bathroom from the nausea and sickness. They didn't see me crying in the bathroom over the physical and mental stress of trying to be a normal student. I got to experience the first of what I fear and know I'll have to deal with for the rest of my studies.


Example 1: The Professor.
I walked in to my first chemistry lab after my exhausting and longest day at school. I immediately noticed that there were no chairs or stools for the 2 hour long lab. I had 3 other classes before this one, and I knew I would also be exposed to chemicals which would irritate my sensitivities. It's impossible for me to stand that long without passing out or collapsing from the pain in my legs. I walked up to my professor, an older man who thought he was funny, and pulled him aside before class. I explained to him I had a condition that causes me to pass out if I am standing for too long. I said that I would fully participate in the lab, I just needed a chair or stool to sit down if I felt faint. He then turned to the class, and made a joke about me fainting. Specifically, said something about "fainting goats" (which I think is a youtube video). He then dismissed me, and walked away. I was dumbfounded. I am always surprised at adults who don't act respectfully. I thought I had left high school... I then walked back up to him and firmly said I was registered with the disability services and if he had a problem he could contact them. I stated that I needed a chair or I would be a liability. He then obliged. This was only the beginning of the struggle I had with this professor! I had to jump through ridiculous hoops to be able to even take tests and to get the grade I earned. It was so frustrating to deal with his lack of cooperation. Thankfully, the disability services were in my corner and handled the situation appropriately. The worse part was that he saw me parked next to him in the handicap spot every morning. I once told this story to my nurse... her response was very fitting and made me laugh! She said, "Well, what's his handicap? Ignorance?!"

Example 2: The "Friends".
My handicap parking was a huge blessing for me. I got to park right under the building where I had most of my classes in the professors' parking garage. This limited the distance I had to walk. My backpack was heavy and my legs were weak. The more walking I had to do, the more pain and fatigue I had. One day, I ran into some old "friends" from my high-school who were also apart of the PSEO program. I had grown up with these girls and once considered them my best friends. When I fell ill, I was tormented and teased by them while I suffered through my last days at my high-school. They even spread rumors that I was faking it when I couldn't attend my class. These girls were mean and I separated myself from them. I consider this disease a filter for the people I don't need in my life. This filter makes a barrier between me and those who are toxic and insensitive to my situation. I cannot waste my energy and time on people like that. I try not to be sad for the loss of this "friendship", but I truly pity their lack of perspective. As I ran into them, I smiled and made small talk like I would do with any stranger. They then asked why I was walking toward the teacher's parking garage. I explained that I was parked there under this building. I started to walk away, again, and they continued to question me. I faced them. I told them I had handicap parking now. The girls laughed in my face and said, "You're really milking this, aren't you?"

Example 3: The Confrontations.
I didn't want to be the sick girl at college. I hid in the bathroom often. I took my medication in private to avoid any confrontations. I was thankful for the disability services, but they couldn't save me from everything...
One time, I was sitting in the cafeteria by myself. I opened my backpack which held my medications, and discretely took my pills. Apparently, some guy still saw. He felt the need to pull a poster off the wall and he placed it on my table as he walked away. The poster read, "Abuse Support Group" with promises of saving my life from destructive decisions. I laughed and thought to myself, if only I had the luxury of making a decision like that.
On my last day of classes, I was leaving the parking garage. This one attendent asked me every time if I had the handicapped parking... and every time, my sign was clearly hanging off my mirror. Thankfully, she was rarely there when I was leaving, and she was the only attendant that continually questioned me. She asked me again if I had the handicap parking.
I smiled at her. "Yes, ma'am." I handed her my ID.
She then made a "hmph" at me.
My forced smile parted... "Excuse me?" I questioned.
"Well," she handed back my ID, "You just don't look, handicapped."
"And you don't look that ignorant."


I'm not usually a confrontational person. The anxiety makes situations like that even worse. But that quarter taught me to stand up for myself, whether I had to face professors, adults, or peers, and to just stop caring about what other people thought. I have a supportive family, a best friend and boyfriend, and a few others who take time to help me out!  The best thing I've learned is to just laugh and move on. These examples are just a few of many situations I experienced.
After the quarter, I was wiped out. I got my first B in a class, but I got all A's otherwise- including chemistry! I applied to some colleges and tried to relax during my break. Unfortunately, my break has also wiped me out.
Starting at the beginning of December, I got a kidney infection and possible kidney stones. Immediately after, I got cellulitis in my face. I crashed on Christmas, and now I'm suffering from another upper respiratory infection. I've been basically house-bound this whole break, but I'm surprisingly happy!
I got accepted to the university of my first choice! The University of Cincinnati accepted me to their Pre-Medical Biomedical Sciences program! I also just received my first scholarship if I attend there! The only thing keeping me from going would be my physical limitations of being independent and living on my own.
This disease is limiting. It's debilitating. It's a disadvantage I'll have for the rest of my life. But I know that I can get through this. I want to be a doctor. I want to study the very thing that has taken over my life. I smiled through this. I'm getting through this. And now I'm moving on!