Many kids my age hate school. They hate the work, the social interaction, the judgment, the peer pressure. All of this they face at school. While school can bring on a lot of stress and worry; there are many teachers who go above and beyond to make us feel safe. For me, that person was my band director. From day one he has provided us with a safe place to come together and develop and share our love for music. The band was no longer a class, it was a family. All the members of the family working together to create something amazing, music. My sixth-grade year, it was pretty easy. The work was easy, we were young. Only just adjusting to middle school life. Seventh-grade was only a little bit harder than sixth but was manageable. At the end of seventh grade, I signed up for marching band. At first, I felt pressured to do it, but as the summer progressed I started to like it. At one of our first football games, I had what we know call, an episode. They continued to happen at football games and during other times. I went to the doctor and she told me I would need to let my band director know so he could let me sit down when needed. Ever since I told him, I have been blessed with an amazing support system. My band director lets me know that I’m not alone in this battle. He listens when I am frustrated with my symptoms, he helps by letting me sit in his office when I am feeling so bad that I can’t or shouldn’t play my flute. At first when the episodes were happening, I didn’t want to go to school. It worried me. I didn’t know what would happen or if other people would judge me. But during this season, my friendship with my band director strengthened. I as no longer afraid to come to school. I felt sae knowing that he cared about my health, and would let me do what was best for me. When I walk into the band room, there is this heavy burden lifted of my shoulders. I know that I am safe here. I can be with my band family and feel safe knowing whatever happens, I have my support system, my band director and teachers, there to help me through whatever challanges may arise.
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I know it must be hard for you to see me go through this. You want so badly that I feel better. As you may know, I have POTS; Postural Orthostatic Tachycardia Syndrome which is a form of Dysautonomia. To be honest it is a really rough journey. I know you want to do everything you can so I can feel better but I need you to understand, let me fight my battles. I know my body better than anyone. I need people that I can vent to and trust not to judge. I know you probably have gotten sick a few times before. You think that if you take your medicine and do everything your doctor says you will get better right? It’s not the same with chronic illness. Even if you do everything right, chronic illness can still get you. I can take my medicine every day and drink as much water as the doctor says and still feel awful. Please don’t tell me that I’m not trying hard enough. Please don’t try to tell me that you have felt the same as me because I guarantee that we haven’t. You may wonder why I can be so sick but don’t look like it. I try to hide it. I don't want to feel like I’m a burden, so I suck it up and pretend to be normal, which is very hard. You may think that I’m too young to be so sick. Chronic illness picks whoever it chooses. I know you don’t understand. I don’t either. It’s not fair. The more you try to understand and accommodate then the better we all will be.
When you see me, I will most likely see a smile on my face. You will see me laughing with my friends. You see me walking up and down the halls. You may see me at a store. I probably look just fine, but inside I probably feel awful. When I am out-and-about I tend to put on my happy face. I try not to show my pain. I smile to mask the migraine. When others ask “How are you?” I reply with “ I’m fine.” I don’t want others to worry. I don’t want to feel like a burden to others. I don't want to cause others to stress over me. When you see me, you would never think that I could be in so much pain. But I am. You don't see the tears I cry at home. You don't see me struggle to get to sleep at night. You don't see the pain inside me. You don't see the days where I barely get out of bed. You don't see the times when I almost pass out in stores. You don't see the ice packs and heating packs laying beside my bed. You don't see the worst side of it. It’s easy to judge a book by its cover. But maybe if you would read a few pages then you would realize that it's not that simple. So please think twice before you judge others. We are all facing a battle. We can all fight it together.
Think of how many people you pass a day. Think of all the people you see with canes, walkers, wheelchairs, motorized scooters, and crutches. Their disability is seen and recognized by society. Not all disabilities are visible. Many go unnoticed by the public. People of all ages can have what is known as an invisible disability. You see a young girl using a motorized scooter in a Walmart. What is your immediate thought? She must be playing around. She isn’t disabled. She must be faking it. These are all lies people from the chronic illness community have faced. We face the judgment of other’s stupidity. Their inexperienced “medical advise”. We have all heard the “I knew someone who was like that.” When in reality they mean their cousin who got the flu. It is often frustrating to try and explain how you feel and why. Since you can not explain your illness well then you don’t have it. You must be faking it for attention. You choose that lifestyle. Maybe if you just diet or exercise. Yes, we have all heard these unfounded, uneducated, and frustrating comments. For the most part, we see the happy side of people. When you see them at the store you see them with a smile on their face, pushing around their cart of groceries. What you don’t see is the pain behind their eyes. How much they wished they had gotten the scooter at the front. They just barely made it to the store. They just can’t wait to leave. They have a huge migraine and brain fog. They can’t remember what they needed. But all you see is their smile. You can’t judge a book by its cover. You can’t judge someone by how they appear on the outside. We all face challenges that no one sees.
I try to wake up at about 05:30 for school. I try to get up by 05:35. I start to get dressed while watching NCIS. I sit in my closet for a while. Continue getting ready while battling chest pain or headaches. At about 07:00 we get in the car and go to school. I walk down the halls while hiding my secret of pain. I head to my locker and put all my things away…thinking “ I can’t wait until band!!” I go to my first class and try to finish my work fast so I can lay down for a few minutes and rest. I’m sitting at my desk working and my legs start feeling weird…. And I start to feel shaky….I lay my head down for a minute, trying not to get frustrated... I push through and finish my work. I get up, too fast of course, and my vision gets gray as I walk to the basket. I sit back down at my seat and put my head down. I’m just waiting until the class is over….Finally our teacher lets us out and I go to my locker and switch out stuff for band. I walk down the hall and I’m praying that my band director will be there. He is one of the only people who know what is going on… I walk down the hall and I see him standing at the door. I walk in and set up to play… It’s my turn to get the stand today so I get it and sit down. I already am feeling like I can’t breathe. I try to play a little...but it becomes too much. I stand up and put my flute down on my chair… my band director looks at me and I walk to his office. I sit there just waiting for the episode to happen…. Finally, it hits me, the shaking, tunnel vision, lightheaded, weird feelings, confused and spacey feeling…. I don’t know how long it lasts. I put my head down on my band director's desk and just wait for class to be over….thinking about how much I hate feeling this way and how I have no control over it….but then I tell myself: it’s part of God’s plan, It will be ok. Trust and obey. Have faith like Noah…..After the class is over, my band director comes in and makes sure I’m ready to go to class. He grabs my things and packs up my flute for me. I walk down the hall with his arm around me and mine around him. We get to my next class and he explains to the teacher why I’m late. The teacher understands. I feel awful. I still feel shaky, I still have a headache. Can’t breathe. I try to get my work done but I just feel so awful….When I get up, my vision gets gray and I have to grab my chair to gain my balance. I sit back down and finish my work debating in my mind if I should go to the nurse or not. I keep telling myself that the nurse can’t do anything for it. So I push through. After that class, we go to lunch. I don’t eat, I go and lay my head down at the lunch table. Almost no one knows how I feel…...After lunch, we go to the restroom and I ask my teacher if I can go talk to my band director, she says yes of course… I walk down that hallway and I knock on the band room door. my band director answers and asks how I’m feeling… I tell him I am feeling better. Still not the best, but I feel better than I did when I had the episode. He gives me a huge hug and I go back to my class. We start class and I start flaring ( chest pain). It hurts really bad, but I keep a straight face and push through. I still am debating whether or not to go to the nurse. I don’t because I have so much work to do. I let my mind win and not my body which I should be paying more attention to ...and I’m in constant pain…. The last two classes are ok… I have medium to small flaring. It’s a Monday so I go to woodwind. When I get there my band director asks me how I’m feeling. I say better, mostly what I’m feeling now is a minor headache. I set up to play. I sit down and after about five minutes, my legs start to feel weird again. I play the music and when we are done, I sit in my band director’s office and talk to him. I sit in one of the only places I feel safe. I know that if I don’t feel well or have an episode, that my band director won’t get mad at me. He makes sure I do that I need to what I need so I can feel better. After woodwind, I get in my car and ride home. Still feeling some minor chest pain. I get home, eat, shower, lay down and ice my chest. I get ready for bed and go to sleep. All of that to wake up the next day and hopefully feel better.
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LeahI love to write about my journey finding a diagnosis. I have POTS and I want to spread awareness! ArchivesCategories |