Friday, May 29, 2015

Your Assumptions Can Hurt

People assume many things based on how we look on the outside. They assume we are healthy, happy, loved, and that life is going great. However, sometimes what they assume is wrong. People have all these little quirks inside of them that are invisible. We can't assume that a person a person is happy. We bury things deep inside to hide from people. We also can't assume that someone is healthy. You see 96%, of chronic illnesses are hidden or "invisible." This is where the term invisible illnesses come from. A person can look entirely normal on the outside meanwhile their body inside is attacking itself. The aches and pains all hidden behind a smile.

About a year and a half ago I was volunteering at an adult/elderly care facility. This was my first time ever coming out to help. A woman who was also helping out that day was probably in her 60s or so, had struck up a conversation with me as we were walking to down the empty hallway to get some supplies from the closet. She proceeded to tell me how good this experience will be for me. I had quietly agreed with her as I was too shy to strike up a real conversation. As she continued she told me this will show me how thankful we should be that we can eat, drink, walk, run, talk, and do most everything on our own. I replied "Yes, Ma'am," Yet I thought to myself how many of those things I couldn't truly do without help or even at all. She didn't know as, my picc line and feeding tube were hidden beneath my sweater I wore during the cold autumn evening.

Her inability to see my disease was the worst. I just wanted to scream and shout at her, but she didn't know. There was no way for her to possibly know. Yet, I stayed silent. I often wonder how I would respond today. I am definitely much more vocal about my disease now than I was. I would probably politely try to explain that. That many of those things are not so easy for me. I take too many pills to count everyday. I have a central line leading directly to my heart. A year and a half ago I had just been put on TPN about two months prior to  this conversation with her. This was a time where I had been NPO for everything. Today things have slightly changed. I am drinking some and able to eat a little more than before but that doesn't mean they still come easy. I still get sick and am in pain every time I eat or drink however much of the time it is now tolerable. Running and walking hurts my joints terribly and there are days I am too weak to get out of bed much less walk or run a mile.

Sometimes I wish I could just scream and shout at those people who don't think I am sick or am faking it. Apparently I do a great job on hiding the daily pain behind my eyes and that smile I proudly wear daily. It's practically impossible for them to look on the inside. Before anyone truly meets me they believe I am healthy but sadly that's just not the case. I receive these labels such as "normal," "healthy," and "typical teenager" all because I look just like your average. I'm supposed to be the teenager who wakes up every morning and heads to school, the teenager who stays awake till two in the morning doing absolutely nothing, the teenager who doesn't care about anyone but herself, and the teenager who thinks she can take on the world and is completely invincible but I'm not. I'm the teenager who wakes up in the morning and goes to the hospital, the teenager who has learned more than once that one stupid thing can kill you in seconds, the teenager who goes to bed at six in the evening because she's too exhausted from fighting her body all day to keep her eyes open, and the teenager who is trying to play her cards the best way she can with the stack she's been dealt.

It's not easy for anyone to be judged by all these social standards we have come to assume in our everyday life. I don't think we look deeper beyond the face or appearance. They always say to never judge a book by its cover but I find that to be impossible. We look at people for their stereotypes but when we sit down and try to understand their life that's when the table turns. I don't want to be known for my disease but I don't want people to diminish it and pretend it doesn't exist because it does. Mitochondrial Disease and all my other diagnoses are very hard to live with and I think people need to be aware that just because I don't look sick doesn't mean I'm not. We all hear people who tell us how great we are doing and that we are fine but we all have that one moment where we want to shout and break through our silence and tell them the truth. Today go out in to the world and try your hardest not to assume or judge based on stereotypes. It is hard not to pass judgement but just try and one day you might just realize the differences you never noticed in life.

Tuesday, May 26, 2015

Being Sick is a Gift; That I Would Probably Exchange For a Refund!

A blessing and a curse they say. They say to make the best of it because you can't get out of this bad situation. You are stuck living with this curse 24/7 till the day you die.

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.