Wednesday, October 26, 2016

I Will Follow You Into the Dark

       I think the best way to start this blog post is just to be upfront and frank with all of you: my health is extremely sucky right now and I am fighting as hard as I can, but I kind of 100% feel like death.
       The past month (slightly longer) has been one of my worst as far as my health, and I am just barely scraping by. I want to sugarcoat this and tell you that I am keeping my spirits up and still fully participating in life, but I genuinely believe that lying about this would be doing a disservice to all of my friends who are affected by illness as well. I am sick. I am suffering. I am struggling. If these things are true for you, too, know that you are not alone. What is the purpose of this blog if I am not honest? What is the point of writing if not to convey an authentic human experience? Why fill a website with half-truths?

     I think it is probably best not to get too into the medical side of things here, especially since we (my family, medical team and I) do not quite have a full understanding of what is going on yet, but basically in the past few weeks I have had repeated cases of strep throat and viral infections, resulting in two courses of oral antibiotics, an antibiotic shot, a course of oral steroids, and a steroid shot. I feel like a corpse. My lungs hurt, my chest hurts, my stomach hurts, my joints hurt, my throat hurts... you get the picture. Last week I went to the Student Health Center every single day and I have been every day so far this week as well. I see the medical director more frequently than some of the people I live with. I have received all of the care they can give me, but am now in need of a specialist and I have a lot of very real, long-term decisions to make regarding my health. Luckily, one of the nurses at the Student Health Center is always looking out for me and I now have an appointment on Friday with an ENT who should be able to point us in the right direction.

Bourbon Street at 6, bedtime at 8.
The lives of Laura and Rachel.
      Things have been pretty dark. I have zero energy and need a minimum of ten hours of sleep plus naps to even consider functioning, so basically all I have been doing is schoolwork, Walgreen's pharmacy runs, sleep, and doctor's appointments. As I am sure you can imagine, this can really dampen a person's social life. Luckily I have been able to carve out time for fun and socialization here and there - last Friday night, Laura and I went out to dinner on Bourbon Street (the true NOLA college experience, my friends) and tonight I am meeting up with my Big for dinner. I have been able to drag myself to some lovely church services and a few other events. My classes have been full of laughter and joking around and smiling faces that remind me that the world is still okay.

      Being acutely sick for over a month has been a lonely experience. It has left me with a lot of tears (I stopped wearing makeup for three weeks for a reason) and a lot of sadness. I look at all of my peers and am confused by their energy and health. I feel different, like a bright red cardinal in a flock of crows, unable to fly far enough or fast enough.

      I am grateful to say that I have also received support during this difficult time. My parents have been the most attentive people in the world, even from thirteen hours away, and they have eased much of the burden of trying to figure all of this out. I also live with actual real-life saints in my dorm suite, and without them I have no idea how I would be pushing through all of this. A few nights ago I was feeling absolutely broken as I was desperately scouring the Internet for a specialist who might see me and sobbing to my mother over the phone. My suitemate Allison kindly shared some peanut butter and pretzel sticks with me while my roommate Laura used her Google skills to identify potential specialists in the New Orleans area. Laura even offered to drive me straight to urgent care, despite having many other responsibilities (and better things to do) that night. She always makes sure that I never have to do anything scary by myself and she has been so kind throughout all of this craziness.

       Before I knew it, our whole suite was in my room (we ordered a pizza, cookie cake, and garlic knots, but let's not talk about that...) laughing and talking and doing homework and complaining about our lives. We did not solve anything that night; I am still sick and I am still searching. But regardless of how physically productive it was or was not, I was immeasurably touched by their willingness to hang out with me even when my nose was runny and my voice was scratchy and I looked like a complete and utter disaster. I was in a ton of pain, but I also knew that I was surrounded by people who loved me and would do anything for me. What more could anyone ask for?

     I am working very hard to protect myself from all of the disgusting stuff that floats through the college environment. I wear face masks on public transportation, wash my hands thoroughly and often, and avoid other sick people. As a public health major, I am reminded of how commonplace these infections are every Monday, Wednesday, and Friday at 11 a.m. when I spend the entire class period being disgusted by PowerPoint slides filled with pictures and descriptions of helminths, germs, and diseases. Despite all of the measures I am taking and all of the academic knowledge I am gaining to accompany them, I am still getting sick. It is easy to fall into the trap of blaming myself whenever a new symptom pops up - did I share a cup? Did I touch a serving utensil in the dining hall and then touch my face? Did I ride the street car without my mask? Did I shake too many hands at church on Sunday? "This is not your fault," my friend Isabel told me emphatically as I was using up her Finding Nemo tissues and relaying all of these fears to her. She said it with so much confidence that I think it must be true. I cannot live in a bubble, and reasonable measures are just going to have to be good enough.

Isabel & I hanging out and
casually color-coordinating.
    After receiving yet another positive strep test yesterday afternoon, I called a friend from home, feeling like I might actually explode from my sadness and frustration. I had been sent away from the clinic with only the positive result and told to return in a few hours, and it felt like the last Jenga block of my composure had been tugged out from under me. I was collapsing in a very messy and inconvenient manner. "I'm exhausted," I confessed between disgusting sniffles, too tired to try to maintain any dignity or put up any walls. "I've been fighting this for so long and I just want to quit." Even I was taken aback by my own honesty in that moment, because as many of you know I am not exactly known for opening up to people. But I think what I said is the truest expression of how I feel. I am so, so tired of fighting my own body and going to the doctor and trying to make myself feel better. I am sick of trying to protect my immune system and listing off the medications I am currently taking to nurses and gagging on large pills. I am exhausted from throwing up in the middle of the night and treating ondansetron like a precious gem and not being able to eat pineapple and trying to figure out copays. There is no break and there is no way out, and if I think about it for too long it feels like a nightmare swarming over me and suffocating me.

     My immune system is ineffective, my joints are bad, and I am very ill. This is the dark. I am living and breathing and existing in the dark. I do not know how long it will last, and I must admit that part of me wonders if it will last forever. What if I never get better? It sounds absurd, but keep in mind that I have experience with this sort of thing. An achy elbow during lacrosse practice in the sixth grade turned into a lifelong condition that I am fighting every single day.

    Last night was particularly rough. The antibiotic I am on now is supposedly stronger than the last, and I sure feel that in my stomach. It also leaves an absolutely horrid taste in my mouth, but luckily Laura is always stocked up on Capri Suns and is super understanding about these things. I woke up around one o'clock in the morning unable to breathe and nauseous, desperately trying to suck medication from my rescue inhaler into my lungs without throwing up. I tried unsuccessfully to eat dinner last night, and the antibiotic wreaked havoc on my fragile stomach. This morning I woke up hungry and managed to carve out time to eat a real breakfast at Loyola's dining hall before class. I thought maybe I was well enough to reintroduce some fruits to my diet (I have been unable to hold them down over the past few days), but I was not looking to abuse this privilege so I apprehensively placed exactly three pear slices on my plate and stared at them for a few minutes, intimidated.  I was only able to eat two. "You are doing your absolute best," Faith assured me yesterday, "You should be really proud of yourself." This morning my best was two pear slices, and I am trying my hardest to be proud of that. Two is greater than zero.

     I want to make sure you all know that every bit of encouragement you have offered me over the past few weeks has been so, so, SO appreciated. All of your cards, notes, text messages, phone calls, and Snapchats have provided me with very real strength and snapped me out of the isolation that accompanies illness. They all come at exactly the right moment. Thank you for telling me about your lives and ensuring that I am still included in the normal teenage and college stuff that goes on. Thank you for sending funny videos and cheerful words. Saying, "You can do it!" or "You got this!" might not seem like a big deal to you, but right now these words of encouragement are my lifeline.

     I am sorry that it is so scary. I am sorry for being so frightened. I am sorry that it is so dark. Thank you for following me here.

1 comment:

  1. I have not personally met you. I only saw this post because someone shared it on Facebook. But, from someone who has struggled with illness before (in a limited fashion), please remember that you are amazing, inspiring, and strong. I have always belonged to the school of thought that bad things happen to us to show ourselves how strong we are. I know that this is not a consolation right now. But here are my hopes for you: that today you carry on to feeling better, and that someday, when this is a memory, you'll remember it and realize how amazing you were. : ) *many digital hugs*


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