I do not consider myself to be a “lucky” person. I do not believe in luck. I believe I am blessed. That might seem odd, but I believe that blessings deserve more appreciation than luck does. However, I would like to take a post to really deal with luck and the perception of many people around me. Then, I would like to deconstruct this notion of how “lucky” I am.
“You are so lucky Chiari can be fixed.” Ok, so it turns out that Chiari Malformation is basically a structural defect present at birth. It isn’t like the neurosurgeon regrew my skull and brain. He removed part of my skull (which would make it MORE deformed, right?) and burned my brain back into place (it is more complicated than that, but whatever) to help relieve the backup of cerebrospinal fluid. I also “donated” part of my C1 to the cause of better fluid flow. Here I am almost nine months later and I still have headaches, nausea haunts me daily, and this blog is the best memory I have.
“You are lucky to have people who care for you.” Well, I am very fortunate. I do not believe that luck has anything to do with it. I think that if it was just luck, only one or two of my family members would be so enthusiastically involved in my health life. What some people call “luck” in this case, I call a “family forged in the fire of pain”. We have always been a family that sticks together, but our love for each other is cemented in the experience of my brother’s murder. That day, we learned that we are all we have. So, if I were to extrapolate as freely as people judge my “luck”, I am “lucky” my brother was murdered because I now have people willing to deal with my issues. That’s insanity. If this doesn’t make sense to you, it’s because I am sleepy typing this, but I need to get it off my chest.
“You are lucky you don’t have to work.” This one. Wow. Where do I begin? A year ago, I was waking up at 0200 so that I could get to work by 0300. I would touch hundreds of boxes a day, pulling them, lifting them, remembering all the zip codes in Clark County so I could get packages to their intended destinations. I would walk over 8K steps each morning while practicing opera because when I got out of work at 0830 I had to go to school…where I took an average of 9 classes as a music major. When that was over, I would come home and depending on what day it was, take my daughter to Taekwondo, go teach art for the county, or teach at church. Then I would come home and work on my music theory homework, practice guitar or piano or voice, and wind down to be in bed by 0000 so I could get up in a few hours and do it again. This doesn’t even include doctor appointments, grocery shopping, or anything else that one does in the course of a normal, adult life. While I was extremely busy, I felt like I had purpose. Through my job I would be able to afford my under and grad education so I could be a music therapist. I wanted to do this because it would help me to take better care of my daughter and prepare for her future as well as help people who have suffered traumatic injury. Now, I don’t do any of those things except teach at church once a week, and when possible I get my daughter to taekwondo. The best part about people saying this is that they say it in the clothes that their job bought them, after getting out of the car their job allows them to have parked at the house their job pays for as they prepare for the vacation they get paid to take by their job. They say it from a place of stability that I miss sorely. I got my first job at 14. in 20 years, I have spent maybe 4 not working due to my brother’s death, having a baby, and that whole recession thing in 2008. Now, I go into my ninth month of not working. I have gained pounds. I can’t afford a gym membership. My job paid for that and this whole brain-thing makes it next to impossible to exert myself or even go outside when the temp is above 80. I also can’t afford to buy a new wardrobe to accommodate all this extra Michelle. My job paid for that. I can’t de-stress by taking myself out once a month. My job paid for that. I can’t afford to take my daughter on a vacation, because let’s be honest; this last year has been extremely trying for her. My issues have dominated her life and she has had to struggle to get through school, and I wasn’t able to help her, or even be really supportive. I can’t even take her to the movies unless someone else pays. My job used to pay for that. I live with my parents because I am not working, so I can’t pay a rent. My job used to pay for that. Wow, I could go on and on.
Now, on the flip side of the job thing, I am blessed that I am not hungry and homeless. My parents have been my biggest supporters. They deal with me and my symptoms daily and that isn’t “luck” folks. That’s love! If I seem salty about not having all of these things, it’s actually because I don’t have the potential to earn them right now. I have always enjoyed working. I have always been thankful I had to get up everyday and labor to enjoy the things I came home to every night. The worker is worthy of his wages. I worked hard. Now, I can’t even stand and wash dishes without feeling like I might pass out. By my magic powers of extrapolation and my athletic ability to jump to conclusions, I guess being “lucky” I don’t have to work means I am lucky to feel like a useless member of society who must rely on the kindness of others to even survive.
Seriously, the longer I deal with Chiari and whatever else is going on, the more I realize that we take for granted our ability to function normally. Previously, I never considered the limits and restraints that some people have on their lives and how that affected their perception of self. I never thought that I wouldn’t be able to garden or work on cars or bend down for more than three seconds. I wonder how many times I opened my mouth and said something this stupid and thoughtless to someone. How many times I took for granted the energy and ability that I had.
I am not writing this to shame anyone. I honestly want you to know that your words carry weight and power, especially when you are speaking to someone who has hours and hours to contemplate them. The people who have said this to me are the same people who take pride in their jobs, or their gym routine, or their choice of a good vacation destination. Speak life and love to those who sit at home waiting for the pain to go away or wishing they could just be normal again. It is not the normal human condition to be unable to contribute to society, and we don’t want it to be. We want to feel purpose. We want to be tired because we accomplished something, not because “today isn’t working for my brain”.
Stop trying to make me feel “lucky” for being born with an abnormality that keeps me from living my life.