Some would call it a curse, other's a blessing, but for me, I call it both. When forced into a situation like this one, a person has no choice, but to find the good in their life. The good will help that person find their blessings within the ugliness of their curse.
Amongst all the storms and the ugliness in my life, my family has come to find the beauty. I always say my life was sucked up into a tornado and spit back out again for me to pick up the pieces. It's a pretty true saying. I had a fairly normal life before I became sick several years back; however, looking back the symptoms were only getting worse even though it all still seemed to be normal. Then one day it hit me like a ton of bricks out of nowhere. From the day of a patient's diagnosis, their life changes sometimes for the better, but also for the worse. A diagnosis finally means an answer. Although sometimes that diagnosis comes in like a trainwreck. The patient realizes that this day will forever alter their life. They learn that this diagnosis will be a constant struggle for the rest of their existence. When I was diagnosed life kept carrying on for everyone else, but for well over a month, I lived inside the walls of an 8x10 hospital room. My life stopped and by the time that I got back to the real world, everything changed. It's an isolating and lonely feeling to be stuck behind the glass of the hospital walls looking out on the people whose lives are continuing on without a second thought. Meanwhile, my sophomore year of high school put on hold, the dreams of getting to hit the soccer field every week seemed unreachable, and friends didn't bother to send a text or check up on me.
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As soon as I left the hospital it seemed like people thought I was healthy again, but that just wasn't the truth. I look like a healthy, typical teenager despite the disease, because I have what they call an "invisible illness" as described by many "You can't see it, but I can feel it." That's the blessing because it would be a tragedy to be both sick and unattractive! Yet also a curse because most of the time people are unable to tell my bad days, where I can hardly put one foot in front of the other and my good days, where I can easily manage the typical tasks of life.
I lost my freedom and my dignity. Imagine needing help to get up to go to the bathroom, needing help to shower and get dressed daily. This leaves a person extremely vulnerable and always dependent on family or nurses to help a patient get by day to day. A normal eighteen-year-old girl goes out on dates, spends time gossiping with friends, goes to college and finally gets to become "legal." On a daily basis, things tend to change in my life and I could be feeling super fantastic one day, but tomorrow will come along and I might not so super fantastic then. My disease is completely unpredictable making me entirely unreliable and dependable most of the time when it comes to keeping plans.
Due to the nature of my disease, I am unable to eat food. For a second, think about what most people would eat on a normal day. What was for dinner yesterday? I didn't get to have that. How about holidays? Most people don't realize how our culture is surrounded by food. For a good reason, considering our society thrives on food. SuperBowl Sunday, Halloween candy, birthday cake, Thanksgiving dinner, Easter eggs, and Christmas cookies are all things I have to miss out on. Imagine not being able to eat your own birthday cake...I don't get to savor the sweet taste of a strawberry or the cringe bitter taste of sour candy. Just imagine life without all those things? Being fed through tubes to keep alive is not the most glamorous thing; especially as a teenager.
This disease has stripped me of most things in life. It's not fair for anyone to have to live like this, let alone a teenage girl. My life was cursed with this disease and I hate it so much. However, it 's such a beautiful gift. There were times in my life, where I don't know if I would be here tomorrow, or when I'll get the chance to value being able to eat a meal again.. My perspective is new. I wake up every day ready to see what life has in store for me even if it is spending the day at school or in the hospital, both places aren't so exciting, but it's key to make the best of what is given. I might ask for a refund on days that are beyond horrible, but then again, there are many reasons I might refuse a refund. Life turns out in strange ways. This experience with my disease has changed me into who I am today. I was changed because I was faced with a dramatic, life-altering event that most people are lucky to never witness until they are old. I know I am a better person for overcoming this ordeal. I have more compassion and love towards everyone I meet because we never know what is right around the corner. So, who knows what would happen if I was able to get a refund on this kind of life.
