In the fall of my 16th year, a girl walked up behind me as I was getting off the red line at JFK/UMass. She grabbed my shoulder from behind and punched me in the mouth. I hit her back and she got back on the train as the doors closed. It happened in a matter of seconds.
A few minutes later, I realized my mouth was bleeding. I ran a finger along my bottom teeth and one in the front wiggled. I was so mad. It bloomed white hot inside of me, this rage. I balled my hands into fists, my fingernails digging into my palms. I called my mother from a payphone and went to the dentist.
It doesn’t bleed anymore, but it has been loose ever since. Not very loose, but loose. I pushed it back and forth with my tongue as I rode the train home today, on a different red line train, thinking about anger.
I was always very independent. It wasn’t a lifestyle or a decision; I just am that way. I started making my own money in my early teen years and was working fulltime by 16. I moved out at 17 and that was that. It had nothing to do with my family – we are close, and I wasn’t leaving to get away from them – but I like to be myself, making my own decisions. I like being responsible for myself.
And also, if I’m being honest – I like it that way because I am weird and kind of unpredictable. I like things a certain way. I either care a lot about something or I don’t care at all. I am a very extreme person. I like to interact with people on my own terms. And yes, because I’m sure someone is thinking it – I have some mad scientist behaviors, where I like jump out of bed in the middle of the night and realize what we should be measuring to really figure out if some cellular process is happening, and that is weird and disruptive to people who aren’t me. I have flow charts and index cards taped up next to my bed and I recently drew out the Krebs Cycle at 2am, tracking carbons to see if I could still do it. My wackness is useful, but it’s big and hard to miss.
Since we’re talking broadly about the ways in which I am weird, I recently found out that it’s not unusual for people to feel like they are underqualified for their positions even when they are. This is called Imposter Syndrome. I feel like this pretty much all the time. I logically understand that I know a lot about mast cell disease, but I still feel like the universe has made some cosmic mistake in handing me this huge audience of cool people. When I say that I really thought five people would read this blog, I am not being self depricating. I really can’t believe how big this has become and it makes me feel like I walked out onto a stage with no pants on. So there’s that.
Independence gives me freedom to deal with my emotions, which can be very volatile, and sometimes for reasons I don’t understand. Being able to retreat to a safe environment alone is how I cope with things that stress me out. When I don’t have that option, it is much harder for me to function effectively.
At the beginning of 2014, I was physically such a mess that I was incapable of doing basic things on my own. I was living alone. I couldn’t make my bed. I couldn’t stand up long enough to do the dishes. My blood pressure was really unstable and I was trying not to pass out all the time. And the pain was bad, too.
I am extremely fortunate to live close to friends and family that I have good relationships with. And because I am a phenomenally lucky individual, these people help me even though I am sick in a way that is sometimes visceral and gross and cranky in a way that is unbecoming of an adult. I have made some big gains in the last year, and these have been won in large part because of the things these people do for me.
I almost never drive anymore and I don’t always feel well enough to take public transportation, so people have to drive me to work/the hospital/to get groceries/insert necessary life activity here. My father comes over every morning to feed Astoria and bring her down to his yard so she can run around. My parents have to wake me up every day because alarms don’t usually work. Every single time someone wakes me up, I am enraged. It’s not logical and I wish so badly that I didn’t react that way, but I do. It scares me and so I wake up every day in a state of panic. And that means I am immediately in a bad mood.
I don’t know how obvious this is to people who know me online, but my interpersonal skills are not always great. I do not understand a lot of social subtext. I am socially awkward by nature. About ten years ago, I picked someone I thought was graceful and kind and modeled my behavior in certain situations after them. I do a good job of anticipating situations before they happen so I practice what I will say and do ahead of time. But I am not good at social interactions naturally. It is a learned skill. And when I am very frustrated, it becomes more of a struggle.
My normal course of action when I am upset would be to just shut off my phone and retreat to my apartment for a few days of being alone. Except I can’t do that because people will think I’m dead and unfortunately, they could be right. I don’t have the luxury of being by myself for days because if something bad happens to me, I need someone to find me. How shitty of a realization is that.
And I depend on people to help me with basic life things, and they deserve for me to be nice and not be an asshole. Also I deserve room to have feelings and deal with them in a way that is helpful for me, except I can’t do that right now. Hopefully not forever, but maybe. I dream of going away somewhere by myself for three days.
And it is embarrassing and it makes me so mad but if my poor parents don’t wake me up in the morning and I miss my pills, I’ll be calling the good folks at 911 to take me to the Brigham before nightfall. So I can’t just go be mad for a few days and get over it because it is not safe for me. It makes everything much more stressful than it needs to be, for me, and for all the people involved in my care.
I feel like if I could ragequit one thing in my life, I would feel better. I realize that sounds dumb, but if I could just like change ANYTHING or get rid of SOMETHING, I think I would feel less frustrated. But there’s literally nothing I can change and still be safe. I can’t change anything or do anything different than I am right now and still function.
I miss independence. I might miss it more than anything else. I might miss it more than not pooping into a bag.
So for now I’m just trying to get through every day without being an asshole to everyone I care about. In the meantime when I get angry, I wiggle my tooth and hope it doesn’t fall out.