Dear creatures with those odd wiggly pink things in the middle of your teeth,
It’s no secret that I’m an extremely blunt and open person for the most part. If I wasn’t, this blog wouldn’t exist considering I am usually writing about the most personal and often taboo subjects. Due to this fact, I have had to learn that while my transparency and sincerity can be often used as a superpower in order to connect with others, it can also be detrimental, and well, get me in trouble. Therefore it shouldn’t be surprising when I say I find myself “biting my tongue,” nearly every day. Lately I have been doing so more than ever. Let me tell you, it gets more trying each day.
I comprehend that even with my wild amount expression, everyone, and I mean everyone, could do with a bit of tongue biting. I still don’t express every little thought in my head, and I still have some sort of filter in between my brain and mouth. If I didn’t, I’d probably be in trouble even more often than I already am seeing as many of my thoughts are along the lines of, “are you fucking kidding me?” or “If I hear ___ one more time I will just set the universe on fire, literally.” Filtering is good on occasion.
When it comes to sickness, disability, and all things SicklyStardust, this gets a bit more tricky. I started this blog so that I could ignite a conversation about my illnesses and what it’s really like to be a chronically ill person. I desire to make those who are like me more comfortable with expressing themselves and make those unlike me more comfortable with listening and understanding. Far too many people such as myself feel that they don’t have a voice, and the few times they do speak, it seems that no one is interested enough to listen. I am determined to challenge it all. I am well aware that I don’t speak for all disabled and chronically ill people; and believe me, I have no intention to. However what I do hope to accomplish is to make others feel that it is okay for them to speak beside me, about their own lives, and add the voices of the chronically ill and disabled.
While all that is super fly in the grand scheme of my life, the day to day business of my chronically ill existence is difficult to navigate. When someone asks how I’m feeling, a coworker for example, I never know what to say. Part of me wants to say, “I’m fine, you?” which always seems inadequate. The other part of me wants to say, “honestly, I’m feeling pretty sick, and I should be in bed, but I have to work so that I can continue to pay my rent.” That usually gets awkwardness and a quick social shutdown. Of course, there’s also a small part of me that would really like to just let out a Banshee type scream, but that seems even less socially acceptable.
Chronically ill people far too often have to fake it through life, biting our tongues to the point where we might bite it right off. Even those who are close to us don’t always understand us or know how to talk to us, and that includes others who are also just as unwell. I’m constantly told that I shouldn’t dare tell my coworkers or boss I’m unwell. And glob forbid if I’m dating someone and tell them, even though they’re going to have to find out anyway. It’s best to trap them into being with me, because otherwise, who would ever want to date a sick girl?
I think the reason this is so complex for us is because what some see as “too much information” or too personal is just an average day in the life of a person such as myself. When you have experienced passing out naked in front of everyone you know, having your parent and boyfriend help you in and out of a shower, and having to pee in front of nurses watching you to make sure you don’t collapse, you get over most private things faster than the Flash can run home. The last time I was in an ambulance the Paramedic asked if it was alright for him to place a sensor on my breast, to which I replied, “I feel like just about everyone has touched every part of me. You do whatever you have to do, I’m used to it.” Yes, I know it’s part of his job to ask, and I am certainly glad he asked for consent as it’s the right thing to do. But in my sick and terrified state, I was mostly just thinking, “hurry up and do what it takes to stop me from feeling this horrendous.”
Of course, I don’t expect everyone to be exactly the same, and I know everyone has a unique comfort level which is totally fine to a degree. Despite that though, there seems to be an enormous shadow cast over society as a whole that makes it okay for women to be sexualized on billboards to sell products, then punished for breastfeeding their infants in public. It makes it completely acceptable to have teenagers watch movies with sex scenes in them, but feel unable to talk to their parents about safe, consensual sex. It’s the same shadow that makes it okay to watch all kinds of medical shows about doctors and investigators, but still painfully awkward to talk to disabled and chronically ill people in real life.
My dear friends who are well, unwell, and everywhere in between, I truly believe that there can be a balance found within all the noise, confusion, and tongue biting. I don’t expect everyone to be as comfortable as I am in regards to medical issues, sex, and the human body as a whole; but if those who aren’t could at least try to step out a little farther from their comfort zones and attempt open-mindedness and understanding, it’s possible we as a society could come to a balanced and positive realization that part of being human obviously has to do with understanding and communicating about our bodies. There is a way to talk about sex in a positive and respectful way while still being open about it, just as there is when it comes to all the things I go through as a chronically ill person. Some may take my blog as a cry for attention or help. Honestly, part of it may be. But more than anything this blog, my existence as a whole, is a cry for understanding and compassion for people like me. Our bodies are such a tremendous part of our existence for all the joy and pain that they cause. Why are we so terrified of them?
Here’s to our bodies in every state, and our sore tongues that deserve a break from all that biting (unless it’s the good kind. We can all use more of that)!
I’m just a love machine, feeding my fantasy,
Give me a kiss or three, and I’m fine.
I need a squeeze a day, instead of this negligee,
What will the neighbors say this time?
~ Love Machine – Arctic Monkeys (Girls Aloud cover) – this song has very little to do with this post, but it does make me giggle, because nothing makes me happier than a poppunk band covering a pop song. I regret nothing.