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.

Tuesday, October 25, 2016

Learning Grace

Written in July 2016. 

     Lately I have found myself thinking a lot about the lyrics to a hymn appropriately titled, "Servant Song." My dear friend Helen and I sang this song in church a few years ago as a duet, and it is a fond memory that I will always hold close to my heart. The verses that mean the most to me are below:

"I will hold the Christ-light for you,
In the nighttime of your fear.
I will hold my hand out to you;
Speak the peace you long to hear.

I will weep when you are weeping;
When you laugh, I'll laugh with you.
I will share your joy and sorrow
Till we've seen this journey through."

     I have spent many hours, broken up into random fragments of time in the car or while grocery shopping or completing some other menial task, pondering the meaning of these words and how to live them out. I also think about how lucky I am to have people who weep and laugh with me. Friends, church members, teachers, and family have all stepped in at various times to make sure that I never felt completely alone. We all know the stark difference between a friend who watches you cry and a friend who cries with you, and I am grateful to say that I have had many of the latter.

      Singing this hymn as a duet with Helen was absolutely perfect in a million different ways. Several years ago I attended a youth group a summer camp even though I was very anxious about my health, and when I went I ended up flaring terribly. One day I barely moved from my bed and one of the chaperones next door with a medical background was sent in to check on me. Every time I tried to walk I was overcome with tears, both of pain and frustration. It was a horrible experience physically, but never have I ever learned so much about grace in such a short period of time. In the central room of the camp, there was a box where campers could leave short little notes about other campers if they wished. One night Helen left in the box the note below:

     As you can see from the picture, the note is still on my bulletin board at home today. Even though the board is cluttered with college information, souvenirs, postcards, artwork, and lanyards, I have never removed that note. It is only six words long, and the notecard is tiny, yet it means more than me than almost anything else in this world. That note was exactly what I needed in that moment. Helen spoke the peace I longed to hear, and uplifted me when I was feeling useless. It is strange thinking back on it now, but the summer camp situation was bad. My eyes were swollen from crying and I could not participate and I felt so incomprehensibly far from being an inspiration. I thought that everyone wanted me to go home, and I wanted to go home, and I could feel the heavy weight of disappointment bearing down on me and suffocating me. Even though the rest of that week was still miserable, thanks to that sweet note I felt a little more redeemable and lovable, and that meant the world to me. Helen is one of the most genuine people I know, so receiving such a heartfelt note from her made my world a whole lot better that day. It does not take putting someone's entire life on your shoulders to walk alongside them in a Christ-like manner; sometimes, it only takes a note. 

     I think we sometimes treat grace like it is an innate quality that some people possess and others do not. But I believe that this is an incomplete way of viewing such a large yet delicate concept. Grace is learned and practiced. We can actively decide to show someone love and to accept love from others every day. We can practice doing these things even when it is hard, even when it feels unnatural, and even when it is frustrating. We are all just learning grace, and the more we dedicate ourselves to this task the more fulfilling our lives become. 

     Thank you all for weeping and laughing with me. Thank you for all of your notes and kind words and encouragement. Thank you for supporting me and cheering me on. Thank you for your random text messages and phone calls, even when you felt awkward bringing it up. My joints may feel like crap, but my heart feels so full. 

Thursday, October 6, 2016

Jesus & Orencia

      I am often asked how I reconcile my identity as a Christian with my reality of being sick. People see that I am suffering and (correctly) infer that God seems to provide little physical relief for my pain. I am bombarded, not usually by people I know but rather by social media and simple exposure, with articles detailing the complex relationship between God and illness, and I usually have no idea how to feel about it.

      I suppose I do not cling to any particular theology of suffering. I am not interested in trying to explain it or figure it out, and I hate the idea of trying to write or analyze it to death. I think at some points during my illness, particularly during my middle school years, I felt the need to know all of the answers, but I do not feel that way anymore. I remember once accusing God of being a malevolent doctor who cruelly withholds cures from desperate, suffering people, but that idea or hypothesis is currently just too antithetical to my broader understanding of God for me to entertain. It is a puzzle piece that does not fit, and I refuse to spend my whole life trying to make it click. Maybe I've matured, or maybe I'm just exhausted. I do not suppose that it actually matters that much.

     My outlook is just that God cries with me when I am sick and in pain. My illness makes God just as upset as it makes me. God hates arthritis just as much as I do. I think empathy is one of the most beautiful things in this world, and I like to think that that is the quality exhibited by God in these situations. Is that right? I have no idea. But I know that as for me and God, we cry together. And when we do, we use those special Kleenex that are cold to the touch to wipe away our tears, because those are our favorite.

     I have been trying to explore some different churches now that I am in New Orleans to find a good fit, and on one humid Sunday morning a few weeks ago I found myself in an eclectic Episcopal church downtown, surrounded by an overwhelming number of fascinating people. It was exactly the service my little heart was craving after being away from my home church for almost a month. The air conditioner was broken, but it did not matter in the slightest, because we all joined together in singing, clapping, and listening, grateful that the church has survived so many disasters. We pulled out tattered hymnals to sing "There is A Balm in Gilead." And as I sang those sweet words, surrounded by people I did not know but already loved, I found myself thinking, I'm not exactly sure what a balm in Gilead is, but I think maybe there's one for me, too. The service concluded with an upbeat rendition of "I'll Fly Away," and as we bounced around belting out the lyrics it gave me hope that there is something better waiting just ahead. I'm not entirely sure what it is, but I am sure that it is there. Maybe some days I only believe in God because I need to believe that there is something better out there. But you know what? I think that is a pretty legitimate reason. As much as I have tried to poke and prod my faith, I cannot escape a mysterious yet confident understanding that this world is not all that we have. I wholeheartedly believe that one day I will be welcomed into the arms of God, surrounded by a love even sweeter and fuller than what I have known here on earth, equipped with joints capable of every activity.

      I am sorry that I do not have any better theology. I am sorry that I am just trying to smush Jesus and Orencia together and calling that a belief system. I am sorry that I do not believe that there is earthly healing for everyone. That is a terrible pill to have to swallow, and it is okay to take pity on yourself or eat a pint of ice cream in response. The one thing I can promise is that there is a balm in Gilead for you. Maybe you will see it tomorrow, maybe you will see it in a few months, or maybe you will see it in seventy years. Until then, Jesus and Orencia might just have to suffice.

Sunday, October 2, 2016

Here We Go Again

     So it turns out that arthritis does not subside purely because I am in college and having fun.

     My asthma has continued to worsen in severity since my arrival, so I made an appointment with a nurse practitioner at our campus student health center to have a spirometry test done. "We don't have spirometry testing here," she explained to me, "but we can do a peak flow." She briefly left the exam room to grab the plastic device and find a nurse who could pull my allergy chart records to see my personal best. As soon as she gently closed the wooden door, I burst into tears. My lungs were hurting, my joints were hurting, and honestly I just wanted to be able to go home. Unfortunately, I was unable to pull it together by the time she returned.

    "What - what happened?" she asked, concerned. With her was a nurse from the allergy clinic, who happens to be my favorite (we had a lengthy conversation about eyeliner and makeup application techniques at my most recent allergy shot appointment). The nurse kindly handed me a box of low-quality tissues and rested her hand on my shoulder.

    "I'm so sorry," I said, forcing myself to laugh. The last thing I wanted was for them to think I was being overdramatic or that I was just homesick, because expressing any sort of emotion in the medical field is effectively asking for your symptoms to be disregarded. "It's just that my asthma and my arthritis are flaring at the same time right now, and it's just really hard." It was not a great answer by any means, but it did the job. I completed my peak flow test through tears. I performed almost as well as my personal best.

     "This looks pretty good," the nurse practitioner explained to me, "but clearly you're having trouble breathing. So I'm increasing your Flovent, and I also want you to be taking Zyrtec every day, just in case the new environment is causing any allergy issues." She handed me my prescription and I did not say much, because once I start crying it is so difficult to stop. "I really hope you feel better. Make a follow up appointment in two weeks so we can check and see how things are going. And come in sooner if you can't breathe. You have to be able to breathe."

    If you have read this blog even in the slightest you know that I have many criticisms of medical professionals. But that nurse practitioner? She was wonderful. She listened to me, she took definitive steps of action, she showed me compassion, and, perhaps most importantly, she believed me (Tulane students, if you're trying to see someone at the student health center, hit me up and I'll send you her name). She respected me and my privacy, even when I was a mess. Even though I left the appointment extremely upset by the sudden and negative changes happening to my body, I was relieved to find someone on-campus who is so competent and kind.

    After I left the building I returned to my dorm room, where I laid on my rug for a while (don't judge, my bed is up off of the ground and my joints just don't have it in them sometimes). This is a recipe for wallowing in one's misery, so I decided that instead I would take a walk in the enormous park located directly in front of our campus. It was an absolutely lovely day outside, and so I scooped myself up and ventured outside.
One of many oak tunnels in Audobon Park
     The loop in the park is 1.7 miles, and I am confident that it is the prettiest 1.7 miles in the entire southern United States. The large oak trees loom over the path, providing shade and mystery, and the fountains really bring it to life. A variety of people whirl by, from rollerskaters to Great Danes to kids on scooters. A ninety year old man runs while a professional athlete walks his dog and a young dad pushes a double stroller. On either side of the paved pathway are people picnicking, playing instruments, and relaxing in hammocks. It is an absolutely wonderful place to be, and I enjoy every second I spend there.

    Foolishly, I walked the loop four times, which comes out to 6.8 miles. My right knee and left hip felt like they were decaying, but I was determined that this was my way of physically overcoming the burden of arthritis. I needed to prove to myself that I was not on the verge of losing all function. At the end of my walk, I was proud of myself and exhausted all at once.

    What I always forget is that the worst of the pain is not immediate. I woke up on Saturday morning feeling atrocious, but I successfully participated in a field trip (climbing the levee was not my friend) and walked to lunch with my roommate. We had a wonderful time, and it was not really until I returned to my dorm room that the pain settled in and I realized I was in for a very long evening. It is a horrible, throbbing pain that shatters my world and is accompanied by a squishy, tender knee. As I am writing this, I am tearing up because I am misspelling so many words and I cannot seem to remember how to spell them correctly. I am a very good speller, so this is abnormal for me, and feeling my body take a toll on my brain is extremely upsetting and discouraging. I have been using NSAIDS, a heating pad, and the power of sleep, but none seem to be sufficient in curbing the pain.

     Today I am feeling even worse, because on top of my joints hurting my throat is extremely sore and my ears keep popping and pinching. I suppose it's back to the student health center for me tomorrow...