skin & bone

The truth is a complex and scary thing. When I was little, I was horrified of mistruths of all shapes and sizes. Any little white lie made me feel incredibly guilty. I hated and still hate the idea that one’s perception of something could be completely distorted from how it is in actuality. I cannot stand deception. And, the older I get, the more I realize that it is impossible for any living being to avoid deceit. I made a vow to myself and to God when I was younger to choose honesty. Somewhere along the way, I forgot about the importance of keeping that promise. In multiple areas of my life, I’m making and taking opportunities to rip off the bandaid and become transparent.

Being sick has made me want to lie more. No, let me rephrase; being sick has made me a bigger liar than I ever would have hoped. The biggest bluff I’m guilty of spreading is that I’m doing a lot better than I really am. In the back of my mind, I could be begging my body to let me stay conscious, but I will still greet strangers with a smile. Because of this behavior, I inconspicuously estranged myself from others; and, at times, even from myself.

I particularly remember a time shortly after my POTS diagnosis in which I was homebound, and returned to school full time far before my body was ready. I still lived with the same symptoms I did when I made the choice to leave school, and they hadn’t gotten any less severe. I had, however, gotten better at ignoring them. This was a big mistake on my part. What are you supposed to do in such a situation, though? Your body is turning against you, and no doctor, no friend, seems to understand what on earth you’re going through. My diagnosis wreaked havoc on everything I thought I was. I was put in a place where it felt like pretending was my only option. It took me forever to pick enough pieces of authenticity out of all that plastic bitterness to build a life off of.

And here I am now, living that life. At least, I’m trying to.

I went through a thing recently. It’s a lot more complex than that, but that’s a story for some other day. Right now, let’s just say I went through a thing. I was in a fog, and now I’m, for the most part, freed from it. There’s a weight off of my shoulders, but there’s already a new weight waiting, ready to replace it. I’m alive. So, now, I’ve got to live. Feeling like your life was stolen from you is traumatizing, and then getting it back… goodness, I wish I could find the words to describe how weird it feels. I feel like I didn’t have the capacity to be completely honest with myself or the people about how I was feeling for so long. But, that’s probably only because you can’t know how you’re feeling when your pain is so severe that it overshadows everything else.

Now that I can see a little bit clearer, I’ve been reevaluating a lot of the choices- or rather, lack thereof- I’ve made. There have been many times in which I could have said something with so much meaning, but I stopped myself. Accepting that has hurt more than the pain of my own throat closing. Still, I did it. I accepted it, and I’ve learned to resist the urge to let history repeat itself. That pain is forever a part of me. That does not mean, however, that I define myself by it.

It’s a common misconception to think that acknowledging how something has changed you means that you’ve let it determine who you are. I especially see this happen in terms of disability. The amount of times I’ve been reminded of that one Oscar Pistorious quote is ludicrous. “You’re not disabled by the disabilities you have, you’re abled by the abilities you have,” they all say with wide, intrusive eyes and oversized grins. (There’s a very particular smile that only the type of person who would quote Oscar Pistorious can wear. You’d know it if you saw it.)

I’m disabled, and that’s the truth. It’s okay for you to say it, really. It’s not a slur, and the word doesn’t bother me. My body doesn’t do the jobs it should, and when it does do them, it doesn’t do them correctly. I’ve worked and prayed long and hard to not hate my body for that. My illnesses do not define me, but they have affected me greatly. Ignoring that isn’t bravery, it’s poor judgement. Being aware and okay with the fact that I’m disabled shouldn’t be viewed as an act of self deprecation. Of course, I don’t like being sick. But I don’t hate it so much that I let it consume me. I learn about my illnesses. I try and teach others about them. And then, I do my best to keep on living my life how I please to. Which, at the end of the day, is a pretty great thing to have learned how to do early on.

That’s all I’m trying to do. All I want is to be honest with myself and the world as to what’s going on beneath layers of skin and bone.

#ableism #relationships