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A child, 14, sits in his room. Quarantine has taken a toll, stealing away the ability to socialize with friends and the opportunity to learn at in-person schools. Life has begun to become boring, mundane, borderline useless. Being so young when COVID hits is a challenge. What are you meant to do? There wasn't much freedom to speak of before, and now it's all gone. One of the only things you can do at the moment, such an isolated time, is go online. He makes many online friends during quarantine that help sustain his wellbeing. Posting drawings on social media to show friends and mutuals replaces socializing in real life. The thing that's most different is that now, our hero enjoys learning. Research on Google becomes an outlet for him. He discovers a love for history this way, looking up facts about cowboys and about Victorian princes. He learns many interesting things and, in researching the late 1700s, discovers his new favorite thing; something that nobody in their right mind would enjoy. Tuberculosis. Everything about the pulmonary disease is extremely interesting to him. It begins with a fascination in hemoptysis, coughing up blood, then snowballs. Watching documentaries, reading informational books online, discovering more and more articles on the subject, the ancient disease becomes his lifeblood. He no longer feels so bored with life. He discovers that several fictional books about Tuberculosis exist, both contemporary and vintage, ones which tell stories about interesting characters in and out of sanatoriums. It inspires him to read again for the first time in three years. He has again found something worth spending time on. Learning about Tuberculosis becomes an unlikely source of happiness, one that will last for years to come. He finds a lot of enjoyment in researching the infectious disease, talking about it, watching videos that mention it. He has finally begun to discover himself.
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Alright, write about anything. Write about my boyfriend, music, career, job, my favorite place... I don't like writing about me. At least not anymore. I saw the power it held. Saw how it could hurt and anger others. The last time I wrote something, it really hurt someone and I haven't been able to write since. Scared of reactions. Scared that people would take my words the wrong way again, or the right way. I write to release. Release images, stories, and ideas that get stuck in my head and placed on repeat until I drive myself crazy and let it out. When everything is finally gone my mind can just easy back in its place and enjoy everything else that is going on, for a minute. Early mornings I can't get myself out of bed most of the time, not so much because I am tired. But more of, I want to finish my dream, my story. I want to see the rest of it, see where it goes. Because when I wake up it will all be gone and I'm here again. It may be a beautiful day, but lately, my mind is screaming something different. I feel collapsed, unable to mend or bring myself back together. And my mind, it loves it, it feeds off of it. It wants more. It doesn't want me to write, doesn't want me to work, or heal. It just wants me to sit and contemplate the unthinkable, goes as far as begging me to just try it. "You will feel so much better." Well I have gotten better, in a sense. I know that these new thoughts are not my own. They are the creation of this ovoid that has cratered itself inside my mind, inside my brain. It's what is causing all this new pain, and more. I want it gone, I want these voices and the pain gone. I'm supposed to have it removed, but to what cost? The possibility to never have a family, loss of feelings and sensations. Sight. I may be being selfish but, I want to fight. I want to win, push out those voices that are manifesting into full-blown figures. It would make things a lot easier for me and my loved ones if I just got it removed. They wouldn't have to see my panic attacks, personality, and mood changes. I wouldn't have to see their faces when they look at their daughter/sister/partner unrecognizably as she suffers and changes. I could actually work. I could remember who Jane was and possibly meet her again. I just want to try, I want to fight. So as we see these specialists and they tell us what to do. As I cry and pat myself to sleep at night. I will keep these dreams and stories and try to write. Escape from these thoughts and when I can't, tell them not today. There is too much I have to do for me today. And hope that I will be able to be who I once was and more.
Alcoholism does not only affect the alcoholic; it mentally (and sometimes even permanently) damages their loved ones. It usually impacts children into their adulthood. Today, I recognize that I am mentally fractured from nearly two decades of neglect. Here are my honest feelings; from a child of an alcoholic and how it has impacted me. Honestly, I knew she frustrated me. Oh my God did she ever make the volcano erupt. Yet, I didn't clearly recognize she was an alcoholic until about a year ago. I don't remember a night where I wasn't isolating myself in my room, or throwing picture frames at my bedroom wall, or ripping apart her “I'm so sorry, I didn't mean to say all of the cruel things that I did. I love you. Will you forgive me? I'm sorry Rayne. I love you so much” letters into shreds as I would stutter out the words; “If she was sorry, she would have stopped saying such disgusting things.” I was aware of the fact that she was drinking every night. Merlot would flow down her throat, and after the bottle was spotless, another one would appear. As the wine soaked into her lips, her personality changed. Her uncomfortable presence grew into a mellowed woman. It should be the other way around; but she was constantly hungover, so she never was calm. I tried avoiding personal topics. It never turned out that way. She would always pry. I had no interest engaging in conversation, because it was never a happy ending. I didn't realize it then, but looking back, she had tangled me up in a fucked up routine. She would drink herself stupid, then she would get agitated because of how I answered her questions; to which I had answered a handful of times. “Yes Mom, I use protection. Yes, I know what condoms are.” “No, I'm not self-harming anymore. Yes, I'm sure.” Her eyes were always attached to the television or her cell-phone, so it really didn't matter how I responded to her uncomfortable questions, she wouldn't listen. Most of the time, I ran off to my bedroom, followed by slamming the door behind me; immediately locking it as the stomping became noticeable. 95% of the time I was ordered to remove myself from hiding. I wouldn't even be three feet away from the outdated sofa before she would yell at me; “Come back here when you're ready to act like an adult. Stop being a bitch.” My face was flushed, and my eyelids were half shut from constantly crying, I was at stage one of having a panic attack. How inconsiderate of me, I'm such a bitch for having valid emotions. (This is part 1 of this blog. I am not yet finished. Stay tuned for the rest!)
Getting Through Chronic Lyme Disease Having a chronic disease is terrifying. It hurts, not just physically, but emotionally. I've learned that a disease can't define your life. If you let it define who you are, your life will be miserable, and that's all there is to it. But how can we separate a disease with our own identity when a Chronic Disease affects your life so much? I'd like to share my experience so far with Chronic Lyme Disease and we'll learn together. I was seventeen when my health started to get worse. The worry was palpable and constant. My parents and I went to several different doctors, specializing in different things. And every single doctor gave me a dozen scary possibilities, tested me and then told me there was absolutely nothing wrong with me. That I was overreacting. After the fifth doctor to tell me that, I even started to worry if my parents would continue to believe me. I felt like I was broken. I was in severe, debilitating pain and not a single doctor believed me. I had friends ask if I was pregnant and refusing to admit it. I had doctors say I probably had cancer, and a week later tell my mom to get me back to work. Saying I had wasted enough of my parent's money and time trying to get out of work. I'm not joking! I was accused of so many things. But finally, after almost a year of trying, we found out I had Chronic Lyme Disease. When my doctor told me I had Lyme, I actually smiled! I gave a relieved laugh and said, “Oh good, it's not cancer.” She gave me a sorrowful look that I didn't understand then, but do now. The next day my mom and I were calling extended family and friends to tell everyone what was “wrong with me.” And the responses made us realize two things. First off, we knew nothing about Lyme. Second, it was more serious than we thought it was. So, we started researching. And the results were scary. We found out it's chronic. That the symptoms are different for every patient, which means the treatment is different, and there is no easy way to find a treatment that works. That it can be spread to any children I have in the future. That the bacteria inside me can slowly infect and kill each system in my body. After weeks of study we concluded that it was just as scary as cancer. And that this disease could take my life. Now, if you know anything about Lyme you might be thinking we overreacted a bit, since normally Lyme can be cured easily. So, here's a little information. The disease had spread throughout my body so thoroughly that the doctor said it looks like I had contracted it about ten years ago. TEN years of this disease spreading through me. When you first get Lyme Disease, antibiotics will usually kill it. But we didn't know I had Lyme at the time. We didn't go to the doctor, because at first, I didn't show any symptom. They came slowly. Slow enough that I adjusted to each symptom as it came, barely noticing it. So, the bacteria from the Lyme grew, it spread, and then it colonized into one big mass inside me, and started basically, to eat me from the inside. The symptoms did not become severe until I got in a car accident at age seventeen, which jerked, and in a way, activated the Lyme. After learning about the disease, we had to learn how to live with it. And I'll admit, at first, I didn't know how that was going to be possible. All I could think about was everything I could no longer do, and everything that now took so much longer to do then it used to. I was complaining to a friend one day when she gave me some of the most impactful words I have ever heard. She said “The disease isn't who you are. You don't introduce yourself by saying ‘Hi, I'm Katherina, and I have Lyme Disease.' When people ask about you, you tell them your hobbies, your job, what you enjoy doing and who your family is. Eventually Lyme will come up in the conversation, but it's just one, small, aspect of the million things that make you, you.” And she is right. My life does not revolve around a disease. A disease affects every aspect of my life. The difference is small but completely changed my life. Instead of telling people ‘I can't do that', I say, ‘can we do something else instead?' I've found ways to do the things I enjoy even with disease. I've found tricks, diets, medicines, schedule changes, and so much more, that allow me to work full time and go to college full time. I'm still the same person. I'm determined, strong, kind, I still love music and the outdoors. Family is still the most important thing in my life. I still laugh. I still have a beautiful life. Even with, a chronic disease.
If there's one thing I've learned in my early 20s, it's to never take your health for granted. My health means being able to get out of bed in the morning without any assistance. It means being able to walk down the block without feeling over-exerted. It means looking in the mirror and recognizing the person staring back at me. For me, my health represents my victory over a severe condition that once limited me from doing all of these things and more. Six years ago, I graduated from Howard University feeling like my next chapter would be spent in a coffin rather than a cubicle. Towards the end of my senior year, I began developing symptoms of severe fatigue, muscle weakness and swelling. Literally right after I crossed the stage on May 12, 2012, my condition took a turn for the worse. What was supposed to be the happiest and most exciting period of my life was instead filled with depression, misery and anger — mostly at God. After graduating, I returned home to Michigan with my parents, since there was no possible way I could work or live on my own. After being in and out of the doctor's office and getting a slew of tests run, I was finally diagnosed with dermatomyositis (pronounced dur-mat-oh-my-oh-sigh-tis), an autoimmune disease characterized by severe inflammation, muscle weakness and chronic fatigue. I was required to take medication for about six months before tapering off completely. Today, six years later, I am in full remission and am medication-free. During my journey to healing, I realized there were some things I needed to do — aside from taking medication every day — in order to witness significant changes in my life. These things included: 1. Talking to God: I prayed, a lot. I literally had full-fledged conversations with God about what and how I was feeling every day. The more I spoke to Him, the more I felt His presence. The more I felt His presence, the better I felt physically, mentally and spiritually. 2. Encouraging myself: I would literally force myself to think positively every day. I would wake up in the morning, look at myself in the mirror and recite a list of affirmations my family sent me: “I am healthy. I am strong. I am thriving. I am beautiful. I am grateful. I am flourishing. I am fearfully and wonderfully made. I am powerful beyond measure.” 3. Listening to my body: I was extremely cautious about my intake of certain foods. Whenever I ate something, I paid very close attention to how it made me feel. I noticed that whenever I ate bread or pasta, it would drastically enhance my symptoms. That's when I decided to cut gluten — which is typically found in wheat-based foods — out of my diet. I discovered that other people with autoimmune conditions have a hard time consuming foods with gluten because it triggers inflammation in the body. So, I implemented a lot of anti-inflammatory foods into my diet, which helped improve my health tremendously. 4. Staying lifted: My theme song was “Sweet Life” by Frank Ocean, which stayed on repeat every day. I would listen and sing along to the cheerful melody, which helped keep my spirits lifted. 5. Focusing on my vision: I would literally sit for hours working towards my newfound vision, Free E.G.O. Apparel (the acronym stands for empowerment, gratitude and optimism). Although I was still trying to recover from my condition at the time, I became inspired to start something that would encourage others to develop and maintain a positive mindset and lifestlye. Launching an inspirational clothing line was my outlet to focus on encouraging others through my testimony instead of focusing on my illness. 6. Forgiving: Right before graduating, a friend and I had a pretty big disagreement that put a damper on our relationship. She was getting married that summer, so I decided not to go to her wedding. But as time went on, I let go of my bitterness and decided to support my friend on her big day. Although I was still battling my illness during her wedding, my health improved immediately afterwards. Oftentimes, we miss the fact that the act of forgiveness isn't for the people who hurt us, but for us. And for me, I believe forgiveness — along with the other things listed above — played a huge role in my journey to healing.