Amongst all the storms and the ugliness we find the beauty. I always say my life got 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 when you look back the symptoms were only getting worse but it all still seemed to be normal. Then one day it hits you like a ton of bricks out of no where. From the day of your diagnoses your life changes sometimes for the better but also for the worse. Life kept going for everyone else but for a month I lived inside the walls of an 8x10 hospital room and my life just stopped. It's a very isolating and lonely feeling being stuck behind the glass of the hospital looking out on the people who's lives are continuing on as they would any other day. Meanwhile, my sophomore year of high school put on hold, the dreams of getting to hit the soccer field every week seemed so far away, and friends just didn't send a text or even bother to check up on me.
As soon as I got out it seemed like people thought I was better and that just wasn't the truth. I look healthy and beautiful despite the disease, because I have what they call an "invisible illness" as people describe it "You can't see it, but I can feel it." That's a blessing because it would be a tragedy to be both sick and unattractive! Yet also a curse because people can't tell when I feel absolutely horrible and can hardly put one foot in front of the other.
I lost my freedom and my dignity. Needing help to get up to go to the bathroom, having your Mom help you to shower and get dressed daily. You are extremely vulnerable to everyone. Always dependent on family or nurses to help you get by day to day. A normal sixteen year old girl goes out on dates, spends time gossiping with friends, and is gaining the privilege to drive. On a daily basis things change and I could be feeling super, fantastic one day but tomorrow comes along and I'm not so super, fantastic. The disease is completely unpredictable making me entirely unreliable most of the time.
Due to the nature of my disease I am unable to eat food. Whatever you would eat on a normal day. Think for a second. What did you have for dinner yesterday? I didn't get to have that. How about holidays? Most people don't realize our culture is surrounded with food. 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. I don't get to savor the sweet taste of a strawberry or the cringe bitter taste of sour candy. Just imagine your life without all those things? Being fed through tubes to keep you 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 to live this life. My life was cursed with this disease and I hate it so much. However it is a beautiful gift. There was a time in my life where I didn't know what it was like to think of tomorrow being my last day on earth, or valuing maybe even just one bite of pizza during a night out with friends. My perspective is new. I wake up everyday 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 that aren't so exciting. Now don't get me wrong if the time passes by I might just ask for a refund on days that are entirely horrible; yet there are many reasons I might refuse that refund. Life turns out in some strange ways. This disease changed me into who I am today and why I am that person. I was changed because I was faced with that dramatic life altering event that most people are lucky to not witness until they are old. I feel as if 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.
Hi Michaela, I just happened to find your blog through The Mighty. I have been captivated by your blogpost's. I too, have many chronic illnesses and can relate to a lot of what you are saying. Thank you for taking the time to raise awareness despite what you are going through.
ReplyDeleteWishing you well,
Nancy x :)