Sunday, December 20, 2015


     I am not the most transparent person. I have never been one to outwardly express what I am thinking or feeling. But I want this blog to be honest, because a lot of what I saw when I was first diagnosed was a bunch of people claiming to be positive all of the time and to have everything figured out. These depictions of life with a chronic illness caused my to constantly flip back and forth between not buying it and feeling inadequate for the painfully ungraceful ways in which I was coping.

     Sometimes, when I am brainstorming what I want to post about, a topic comes to mind that I almost mechanically brush aside for later, because I feel like I do not have it figured out yet. Sometimes (often, if we are being honest) I do not know what I think about a situation and I do not know what the right thing to do is. So I simply do not write about these things, or I stuff them into blog post drafts with the intention of writing them when I am older and wiser. But this is an unfair way to operate a blog and also an unfair way to live as an advocate, because it would have helped me a lot if more people wrote about the more complex issues, and so I will stumble through this blog post with limited insight.

     Disclaimer: I really am not qualified to talk about anything. I don't even have a high school degree yet.

     I am very introverted, but I am also head-over-heels in love with humanity. As I wrote about in "Weeping", I think the best way to love people is to show up, whether the showing up is difficult or easy. The best friends are the kind who run errands with you, because they evidently enjoy being around you. I love these kinds of people, and I try my very hardest to be one myself. My friend Kayla has accompanied me to my last couple of rheumatology appointments, and I have been so thankful for her willingness to do so, because it helps me to realize that my social life does not have to be completely disconnected from my medical life. Additionally, she understands and laughs at my rheumatologist's jokes even when I don't, which is slightly disappointing on my end because I need to be better at understanding jokes in general but undoubtedly makes for a less awkward appointment on the whole. Showing up is important. It is a quality I deeply value in the people around me, and I want to be equally as present.

    I always want to show up. When people invite me to things, I want to go, because I know how critical it is to spend time with people, and how much love that displays. And I really, genuinely do love my friends that much - they are fascinating, intelligent people with bright futures and heaps of potential. My father invited me to a UNC vs. Tulane basketball game, and I went, even though I had a calculus test the next day, because I want to spend time with him and I want to have a life. I certainly do not regret making that decision and I had a great time, I just am exhausted. I like people, and I think that my love for those around me is being unintentionally exacerbated by me being a senior in high school this year. I might stay close for college, but I might go far away, and so I am really not sure how much I will be able to see my friends and family. I do not want to forget to do or say anything. I feel an urgent need to tell people everything that is great about them, to get to know them better, to be quick to apologize, and to offer my time and resources whenever and wherever possible, because I want to build relationships that are strong enough to survive the powerful winds of separation that college will inevitably bring.

     This is all complicated by the simple fact that I am extraordinarily tired. My energy levels are infinitesimally small these days, and honestly getting out of bed has been embarrassingly difficult. Over the course of only about two weeks I went from never hitting the snooze button (not an exaggeration) to setting ten different alarms for five minute intervals. Every time one goes off, I try to move a different joint, until they finally feel loose enough for me to step into the shower, where even the pressure of the water from the shower head makes me wince when it touches my tender joints. At school, I am constantly preoccupied with sleep. I find myself planning out my schedule down to the minute, thinking about where I could possibly fit a nap in. Could I sleep on the floor of the library at lunch? Could I nap in my car for a few minutes before my extracurriculars start? What would happen if I fell asleep at my allergist's office after receiving my shots?

     The fatigue is overwhelming, and although I am ashamed to admit it, I do feel like it is adversely impacting my life. At the same time, I have reached a point where I want to be with the people I love all of the time, because what time is there to waste? Usually, when I attempt to explain this to people, they respond (with good intentions) by repeatedly assuring me that I am not obligated to attend any event or hang out with anyone. But I am well aware of this. I have the right to refuse whatever offers I want to. The problem is, I don't want to refuse them. I want the best of both worlds; I want my body to have energy and I want to be able to care about people by showing up. If chronic illness has taught me anything, it is that people must be prioritized. I hate saying "no" to people when I am invited to various functions, because in addition to desperately wanting to go, I also fear that if I say "no" too many times people will just stop asking me altogether, which seems isolating. But I also want to be fully present at the events that I choose to go to, and I wish my eyelids would stop feeling so uncontrollably heavy even after nine hours of sleep. Should I stay home, since I am tired and cannot be the "life of the party?" Or should I go, because my presence sends the authentic message that I care and want to be involved in the lives of those around me?

     So I am in a pickle (I've really been overusing this phrase lately, and it's super obnoxious, so I'll try to stop). I love everyone and I want to learn from them and spend time with them, but my body is barely feels capable of stepping into the shower. I am not sure how to respond to this conflict, and I do not have an eloquent summary of the somewhat futile steps I am taking to figure it out. I am just clumsily stumbling along, hoping I will run into something brilliant, frantically trying to remind people that I love them even though I cannot always be with them.

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