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.
Michaela Shelley, what you have shared is so true. It is sad that so many folks do not think before they speak. I believe you should keep writing and sharing your thoughts. Others need to be more aware of what they are saying and how passing judgement may hurt the person they are speaking to.
ReplyDeleteI have a daughter who had brain cancer 10 years ago. She is a survivor and she is 30. She is unable to work due to the fatigue and pain she has. You cannot see her scar from surgery ~ and you cannot see pain and fatigue. So many people have told me to make her get a job, an apartment, they think she is "milking the system". Totally unaware of the struggle she has. I just look at them and some days do not know what to say. Other days, I speak up and tell them I am thankful she is still alive, and where she lives is none of their concern. Keep sharing your thoughts. I will be praying that today is a good day for you ~