Wednesday, March 2, 2016

Disaster Days

     Sometimes, even during time periods where my flares are not particularly bad, I have disaster days, in which all glimmers of health seem to have escaped me completely and my body is a wreck. Today has been a disaster day.

      There was a lot of buildup to this day. I was sick earlier this week, with a sore throat, but I felt significantly better yesterday and was able to speak and accomplish all of my activities in a fairly normal fashion. I was annoyed because my allergy shots produced large, red lumps on each of my arms, but other than that my health was at least in "B-" condition, which is stellar considering my general state of health.

     Today has been a different story. I woke up very nauseous, which I attributed to the fact that I had more cough drops than dinner last night, but I was determined to go to school. I had an independent study meeting at 7:00 a.m., my first period class was not an easy one to miss, and I was already awake, so going in late did not seem like a viable option. Last night my knees were full of fluid and squishy, but I figured the issue would resolve itself by the morning. To my immense disappointment, it didn't, and I woke up with even more joints hurting. My knees, ankles, hips, elbows, wrists, fingers, and back were all throbbing; standing in the shower felt like a feat that only Olympic athletes could accomplish. Even the act of stepping into my knee braces almost reduced me to tears. Despite the disaster that I was, I slumped into my car feeling determined, and I used all of the energy I could muster to roll down the windows and play a Madonna album, even though it was 40 degrees Fahrenheit outside and 6:45 in the morning. I drove like a grandmother, which I guess is a good thing but also made me feel pretty pathetic, considering that the reason for my slow driving was arthritis, a disease commonly (though often inaccurately) associated with populations much older than myself.

     Usually I feel somewhat better as the day goes on. But today has been a different story. During the middle of first period, I was still dealing with morning stiffness (which typically only lasts about 45 minutes to an hour for me), I left the room twice because I was afraid of throwing up, and my sore throat made my speech weak. I tried to discreetly eat some almonds to combat the nausea, because I find nuts to be a very helpful tool in doing so, and they prevented me from throwing up but did not make me feel any better. Each time I stood up to walk to the bathroom or to get a tissue, I experienced a split second of panic in which I worried that my knees or hips would give in on me and I would tumble to the ground. My imagination was packed with images of embarrassment and mortification that would presumably follow this tragic hypothetical situation. Granted, it did not feel hypothetical in the moment; it felt like a very real possibility that I was obliged to prepare for. I was glad that I went to my first period class and I wanted to be there, but I was miserable. A few times when I had questions about the worksheet we were completing, I was literally too exhausted to ask my classmates. That, my friends, is fatigue at its finest. My second period class today was chorus, which was no better, since I could neither stand nor sing. I spent most of the class in a purgatory-like state between sleep and alertness.

     At one point during my third period independent study class, I got up to go to the restroom, which was an accomplishment in its own right. The journey from the library to the restroom is not far at my school, but it certainly felt like a daunting stretch to my hurting body. A few teachers stared at my bulky knee braces and heat wrap as I awkwardly trudged through the hallway, but I just pretended like I could not see them, because the last thing I wanted was some condescending conversation from an authoritative stranger. As I was washing my hands, I habitually glanced upward at the mirror on the wall, and I was shocked.

Not looking fantastic, but
looking remarkably better than I feel
(Side note: Emory shirt is not a clue as
to where I'm choosing to go next year.)
    I looked alright. My hair was a bit on the tangled side but had dried nicely, and my makeup was not a mess. My complexion looked fairly typical, and I was not nearly as pale as I felt. How could I feel so terrible, yet look so normal? My body felt like it was literally breaking apart, but in the mirror I was completely intact! The only clues to my suffering were my large knee braces and slow gait, and neither of those indicators could be seen from the mirror. As weird as it sounds, I was very impressed with myself in that moment. But I also know that this convenient phenomenon is problematic to many of my friends, and even to strangers. How are they supposed to know when I feel mediocre and when I feel like the world is ending? There are very few clues for them to decipher. When my pain has reached a breaking point, my body looks exactly the same. I've learned not to contort my face, and I know that placing a hand on my forehead can be effective in preventing my nose from scrunching up when one joint experiences a particularly intense arthritic pang. I know it is not easy to be friends with someone dealing with a chronic illness, particularly an invisible one, and as I stared at my surprising reflection I felt sorry for my friends. I realized how difficult it would be from the other side, and while for selfish reasons I never want my pain to be visible, I suspect that from their perspectives visual labels would make everything a lot clearer.

     I should stay home from school more than I do. I could have gone home today, even just for a little while during chorus and my independent study, but instead I told myself that I would stick it out. "Take Thursday and Friday off. Rest and feel better," a teacher gently but assertively instructed me this morning. I was a bit embarrassed, because I ignored his Monday suggestion to take Tuesday off, and there I was, even sicker because of it. I laughed it off lightly, but I knew that he was not joking. My body is not nearly as resilient as the bodies of my peers, and my standard recovery process is slow enough to drive me to insanity. As I was leaving school today, he reminded me that I should not come to school tomorrow. "This is not a talk, this is an order," he said, confident and likely a little fed up with my intention to miss as few days as possible. Realistically, he is probably right. Although I am ashamed of my stubbornness, I am still going to go to school tomorrow. I may learn the lesson he is trying so desperately to teach me at one point, but that point is not today.

     There are some good things to be said for disaster days, although I am confident that they do not justify or outweigh the associated pain. I feel reinvigorated to continue my advocacy efforts and to write. My perspective and outlook on the world matures. Suddenly, my homework does not seem nearly as burdensome or important. I enjoy academics, but my classes do not seem to hold they existential weight that they used to. On disaster days, getting an "A" on a homework assignment seems petty and irrelevant. All I want is to feel better. Isn't that all anyone wants? No. Because on most days, it is not all that I want. I want to feel better, but I also want a gazillion other things, most of which are laughably idealistic and impractical. On disaster days, my focus is on reducing my pain level and loving people, and that is all that I can seem to put forth effort for.

     So that's where I am, and it is not necessarily the most productive state to exist within. I just want to be okay. I want all of the fluid to disappear, and I want to be resuscitated from my foggy half-awareness. I want to run a 5k tonight, and I want to bolt up the stairs when I forget something rather than carefully plan out when my next trek up will be to maximize my efficiency. But even if I am never able to do these things again, and even if every day from here on out is a disaster day, I sure am living a beautiful life.


  1. Beautiful, Rachel. You are not a disaster!!!! You are wonderful!!!!

  2. Haha, I wish! I think it's okay to be a disaster sometimes though.

  3. It's really amazing how much you persevere everyday, especially through the pain and nausea. And the fact that you keep in such high spirits is awesome and very encouraging to others who may be going through this or something similar. I agree with you that being a disaster is okay, but I truly hope that your good days outweigh them!

  4. Rachel, thank you for writing. I too had a disaster day today. Though our illnesses are different, I am so thankful for the reflections God is giving you. Today I really felt like Chronic illness sucks and nobody understands what I'm going through. At one point today I literally shut my office door to try to hide the tears. You are a gift.


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