Tuesday, February 13, 2018

You Are Dust

          Tomorrow is Ash Wednesday. "Remember that you are dust, and to dust you shall return," I will hear multiple times at all of the services I am planning to attend, while blackened thumbs smear across my forehead, and I already know that these thumbs will not be as gentle as I always pray they will be. In my typical manner, I will wash the ashes off quickly afterwards, in part so that I can go to the next service I have lined up, in part because Ash Wednesday often turns into an uncomfortable flaunting of one's adherence to Christian traditions, and in part because I must admit that having this visual reminder seems unnecessary to me when my bones are screaming my mortality into my ears every second of the day. With these three reasons combined, I like to think that Jesus understands when I scrub my forehead over a dorm room sink, tears flowing down my cheeks as I take a rare moment to feel the fragility in my body, no power of imagination necessary.

          Perhaps for some of us Ash Wednesday is not an abstract opportunity to reflect on our mortality, but rather a promise that the suffering that sinks deep into our bones has a home in our religious practices and traditions. Maybe for some people Ash Wednesday is a smack in the face from reality while for others it represents an empathic hug from a Church that tends to constrain pain.

          I have to skip one of my classes tomorrow in order to attend my home congregation's Ash Wednesday service. I considered composing an email to the professor, who would likely assume that I was just using a religious excuse to cut class. "I know Ash Wednesday is not very important to many people who identify as Christians," I imagined myself writing, "but it is a service that is fundamentally about dust, and I am particularly dusty these days." I have decided to spare him such a confusing email.

On a normal day: Me looking at volcanic rock
On Ash Wednesday: Me looking at future me

          Perhaps a constant sense of my own fragility and brokenness is, in some twisted way, a gift. Before you assume that I am finally construing my decay into something worth celebrating, please take a moment to recognize that not all gifts produce delight. I have been feeling like a heap of bones lately, tied up with a mind that is not quite strong enough to withstand my physical weariness and flesh that is failing me. Over the past couple of weeks I have had my fair share of moments crumpled up on the floor, piled under cold compresses and heating pads, wishing that everything would stop hurting. I feel like no more than my bones some days. No Amazon Prime shipments of tins of ashes are necessary for this sort of unwelcome perpetual awareness.

          A dear friend introduced me to a podcast this week, the title of which, "Can These Bones," is based off of Ezekiel 37. I love the podcast and would recommend it a thousand times over to all of you, but I must admit that I felt a bit left out during the discussion of the valley of the dry bones. Where is all of the biblical emphasis on swollen bones, with too much fluid? Today I found myself in a chapel that I am not even sure if I am technically allowed to be in during the day, staring at yellow walls and asking God to be with those of us with swollen bones, too. They can be just as dead as dry ones, I argued, as if my illness offered me the power to persuade the divine. Pain is not the antithesis of death, but rather one of its closest companions. 

          Still, I was drawn to Ezekiel 37 and relieved by its willingness to draw attention to our physical bodies. I hear so much about the soul in religious circles, and it is comforting to be reminded that God cares about my bones just as much, even if it sends me straight to tears roughly fifty percent of the time. I am really trying to hold it together these days. I am very much failing. I am grateful for the people who choose to be present when my bones collide with this earth and I am reminded of the cruelty of physical pain. I am especially grateful for religious people who choose to acknowledge my illness head-on, refusing to dance around it with biblical language and churchy terms. It is not an easy thing to do.

          My favorite part of Ash Wednesday is looking around and knowing that at the end of the day, everyone is just as fragile as I am, no matter how much more capable or whole they seem. We are all just decaying bones and flesh, although some of us are decaying at a faster rate than others. Whenever my doctors use the word "erosion" to describe the permanent damage arthritis has inflicted on my joints, the natural images invoked by the word strike me as absurd against the inappropriate backdrops of paper-white rooms full of metal objects and colorful toxins. "You are supposed to have valleys, but you have rivers," one of my first pediatric rheumatologists explained to me regarding the swelling in my elbows. Both the Nile and the Grand Canyon seemed like good options to me, but apparently the dry bone was the desirable option. Ezekiel and my rheumatologist seem to agree that God apparently has big plans for seemingly hopeless dry bones, but swollen bones? Not so much. Just kidding. Maybe. 

          Every morning, every night, and every two weeks, when I swallow and inject my immunosuppressant medications, I poison myself in the hopes of preserving bones that are trying to turn to ashes. Trying to slow down this process seems so unnatural, but it also seems like the right thing to do. Maybe the reason I do so in tears is so that if I end up being wrong about all of the medical decisions I make God will be certain that I was always uncertain, and will forgive me for jabbing my body and allowing it to be jabbed in such an invasive manner. Maybe I permit myself uncertainty regarding the smaller decisions because I know what is certain: that I am dust, and that my joints are becoming dust a bit too rapidly.

          I do not need to be reminded that I am dust tomorrow. I will choose to be reminded anyway. I will choose to sink into a pain that I so often run away from, to run straight into a suffering that everyone tells me to push into the far corners of my universe. I will celebrate a fleeting moment of understanding in which the Church chooses to accept how broken my body is without the threat of healing prayers or positive thinking or happy vibes. I will look around and remember that no matter how lonely it feels to be decaying, everyone is doing so. "You are dust." These, my friends, are freeing words.

Thursday, February 1, 2018

Very Funny, God

My mom hates it when I rank our pets, but
Brooke is my favorite. She is sweet and gentle.
          When I called my newest specialty pharmaceutical company at 4:59 p.m. on Friday (obnoxious, I know) I quickly learned that my insurance would not be covering one of my recently prescribed long-term medications. Thankfully, the very understanding pharmacist I was speaking with adopted a deeper level of patience when I confirmed my 1999 birth year and he realized that I was a fresh soul in the confusing world of medical systems. He supported my decision to table the discussion until after the weekend, in order to allow me time to talk with my mother. On Monday, I found myself jotting down extensive instructions about my newest prescriptions with a shaky hand, teetering in between feeling capable and unprepared. Unless I felt like paying a serious upcharge to have the pharmaceutical company include the necessary supplies, I would need to carve out time to find my way to a drugstore within two or three days. Every time I thought the dramatic warnings about drug interactions and potential side effects were over, there were more of them lurking in the wings, prepared to challenge my sanity and composure.

          "Would you like to speak with a pharmacist again?" the second employee on the line asked after I expressed some confusion about one of the medications. Do you have a chaplain available? I wanted to ask her, despite knowing how ridiculous the question would be. My concerns did not stem from a lack of understanding so much as an alarming suspicion that God was leaving me to fend for myself with scribbled down, misspelled prescription names in the margins of my planner. "No thank you," I responded instead, wondering whether or not the slightly broken quality of my voice was transferring through the phone, "but I appreciate it."

          The Monday conversation with the specialty pharmacy was my third or fourth medical phone call of the day, and I had just raced through the hospital app on my phone to grab an appointment off of a waitlist that was released into the portal just minutes earlier. I needed the appointment, yet still felt sick to my stomach about the notion of competing for it with other patients who probably need it just as much. I do not want to participate in this capitalistic system where some people receive prompt treatment and some do not, and at the same time I do not know how to back out of it in the name of these serious ethical concerns when my body is breaking down.

          On top of the medical coordination exhaustion, it was a Monday, which is academically my busiest day of the week, packed full of six hours of classes. I had slept very little over the weekend due to back and hip pain, and I did not have the energy to deal with a remote specialty pharmacy. My fatigue this week has been severe, especially in the late afternoons and evenings, to the point where I have had to drag myself to classes, worried that I might collapse or need to lie down along the way. It is so frustrating that I could cry, except that crying would take entirely too much energy. When the fatigue is particularly debilitating, I have to force myself to speak while I hang out with my friends, each syllable adding another weight that crushes into my brain and body. Getting words out feels like it will shut down my system. Given the context, it will not surprise you that on Monday, after I finished up my phone calls and appointment rearranging, I found myself contemplating the concept of Sabbath, and more specifically how the significance of Sabbath changes if you are chronically ill.

Meet Eleanor, aka Ellie, aka Flotus.
She is talkative and feisty.
          These were desperate times. I legitimately considered asking a public preacher a few questions about pain and rest and theology when I passed by him while leaving my final class of the day, a sign that I was truly losing my mind. Luckily, I remembered that I did not feel like someone putting their enormous palm on my head and casting out the "demon of arthritis" (it seems that in the context of an autoimmune disease the demon would be me) or insisting that my Planned Parenthood laptop sticker was the reason for my illness, so I decided to continue my policy of never engaging with public preachers under any circumstances. Some questions are less disturbing than the responses they are bound to provoke.

          I have a confession to make: in Building Chapels, I mentioned that it makes me uncomfortable when people pray for my physical health, but what I did not consider when writing that post, and what a friend pointed out to me shortly thereafter, is that I do often find myself typing out online prayer requests to a convent (or two... okay three) in the United Kingdom. There is something inexplicably comforting about knowing that there are dozens of holy women praying for me from an ocean away, even when I am not brave enough to ask for those prayers in my own communities.

          On Saturday I met a priest in the grocery store after I opened the refrigerator case containing all of the non-dairy milks. I was having a lot of pain, particularly in my back and hips, and I had just submitted a prayer request form to a convent a few hours prior (I feel like I need to clarify that these correspondences are most definitely not an everyday thing). I needed the vanilla almond milk off of the very top shelf for a batch of vegan lemon blueberry muffins I was baking for church, but it was too high for me to reach. The priest spotted my dilemma and quietly offered his much taller stature, retrieving the carton for me and placing it into my shopping basket.

          As soon as I saw his clerical collar, I wanted to assure him that the muffins I would bake with the almond milk were for a sacred place full of people who blow me away on the daily with their commitments to love one another and the freeness with which they extend compassion, but that seemed altogether unnecessary, because ultimately he had no stake in the destination of the milk. Furthermore, I think a taller person helping a shorter person in the grocery store is more of an act of human kindness than a priestly obligation. I wonder where these lines are drawn, or if they should even be drawn at all.

Our little dog, Lexi, (featuring my face when
Hannah tried to explain the training technique
we are using with Dante to me).
          Still, I did think it was appropriate that it was a priest who showed up in the moment I needed help, even for a task without any sort of direct religious component. Very funny, God, I imagined myself saying to the heavens, in the mostly grateful, mildly sarcastic tone of someone who is speaking casually with an old friend. I imagined God telling me that there are more holy people in the world than just the nuns of the UK, and that if I would just be a bit braver I would discover the people all around me who will listen to me in person and who will pray for me just as earnestly. Most people probably do not have to consider whether or not they should branch out from convents located thousands of miles away, but I like to think that we all have our own challenges.

          At this point if you were to sum up this post you might observe, You considered asking a specialty pharmacy if they had a chaplain available, you came a hair away from approaching a public preacher with theological questions, you regularly submit online prayer requests to British nuns, and you almost told a priest in the grocery store about the churchly intentions of your almond milk. All of these things are true, though I will note that 3 out of the 4 are almost-experiences, and it is also true that when you put them all together I sound a bit (very?) odd. Perhaps these are the sort of experiences that I should have slowly revealed instead of dumping them all out at once. But I am coping, and sometimes coping follows no particular patterns or logic, and trying to do so within a religious context is extra difficult sometimes and hopefully extra worth it in the end.

          I do not encounter chaplains, preachers, nuns, and priests every time I leave my dorm room, but sometimes I do feel as though I cross paths with them more frequently than most of my peers do. Perhaps I am just hyperaware of their presence, wondering if they have some sort of secret to offer, some piece of hope that I am incapable of finding on my own. Perhaps I just find it comforting to know that they have asked themselves the same questions that I do, and that by the very nature of their careers they demonstrate a willingness to look into the face of mystery and uncertainty. It is just now occurring to me that I have been consumed in thinking about my religion lately, finding fragments of it in phone calls with specialty pharmacies, in frantic Mondays that cry out for Sabbath Tuesdays, in teary-eyed walks to the drugstore, in almond milk purchases. Perhaps this heightened awareness of my faith has been obvious based on my last several posts, but it is something that I have just now recognized.

Dante is thriving. His ears are an inspiration.
His face could not be cuter. 
          Do you have a chaplain available? It is a question I wish I could ask in almost every setting as I continue learning what it means to love the people around me while being physically bombarded with reminders that I exist within a body that does not love me. Am I my body? Is my body me? These are questions I wish God would answer, so that I could know whether I am fighting against my body or fighting for it. Will everything stop hurting one day? It is a question that I suspect I already know the answer to, but this has yet to stop me from seeking constant confirmation that one day all pain will disappear.

          Very funny, God, I think to myself with varying degrees of sarcasm, not really expecting God to take note of either my appreciation or despair. On the rare occasion that I do stop to imagine a response, I see a warm smile, the smile of everyone I already love and all of those I will love wrapped up in one, and I feel a hug that lifts me out of fatigue and pain, its eagerness softened only by a humble sigh of gentleness, and I listen as the words that I have repeatedly used alongside humor transform into a sacred phrase I have been waiting my whole life to hear, "Very funny indeed."

Thursday, January 25, 2018

Space for Suffering

          It has not been a bad week. I am not feeling sicker than usual, but I am feeling sicker than usual of having a chronic illness. I cannot seem to pinpoint how well I am on the whole, because I do not know how high I should be setting my expectations of my health. I think I will err on the side of being okay.

          Sunday was fantastic, and then I started Monday morning by throwing up in front of my entire class and professor (good times), so now I am that girl. Tuesday was excellent, and then Wednesday brought yet another post-operative appointment. Last night I could not fall asleep without practically freezing my shoulder off, and today I am certain that there is some serious inflammation taking place all across my shoulders and neck, but there is nothing I want less than to go to the doctor right now, plus I had four hours straight of classes and multiple accommodations meetings so there was no time for that. I walked out of the building where my last class was at the end of the afternoon, just as the evening breeze was beginning to set in, and thanked the high heavens when I spotted my friend in the library, a midway point between my classroom and my dorm room, because I quite literally was too fatigued to make it all the way back to my room. I stopped for a twenty minute nap under a table, hearing the clicking of all of the laptops around me, each sequence of taps representing my studious peers who do not need to nap in the most inconvenient places and at the most inconvenient times. I stood up, walked calmly to the restroom, threw up, walked to a different building, called my mom, and then met up with a friend for dinner.

  Thankfully, I am still fully functioning and am able to think clearly. Tomorrow afternoon will bring my third Humira injection, which I am bound to end up doing in a parking lot somewhere because I have to get that evil little syringe as far from a refrigerator as possible to convince myself to shove it through my skin instead of postponing it. I am under the impression that distracting myself might help, so if you have any links to funny videos please send them my way.

  If there is one non-anatomical way that my most recent surgery has changed me, it is that it has transformed me into a firm believer that "vacuum" is a term intended for carpets and not for faces. At this point, my surgeon knows that I handle foreign objects being stuffed up my sinuses very poorly, and he laughs at me while I make all sorts of hilarious remarks in an attempt to verbally express my discomfort, which somehow makes the whole process more bearable. I flinch every time he sanitizes a new instrument, and when I ask if it will hurt, he first dryly responds, "Don't worry, this won't be painful for me," and then is perfectly straightforward, with a casual expertise that I find comforting.

          At the appointment yesterday, my surgeon and I discussed "long-term treatments" that need to be implemented, in part because of my immunosuppression and in part because of how complex my health is in general. From my perspective, the surgery itself was the long-term solution, but apparently things are a bit more complicated, which always seems to be the case. I find it difficult to resist feeling overwhelmed when medications are prescribed indefinitely and the word "years" is thrown around. I find it difficult to spend hours each week playing phone tag with various doctor's offices and listening to the most horrid of hold music. I find it difficult to stab myself with a needle that promises intense pain but is much less faithful when it comes to the question of efficacy. This week, the boring and mundane parts of having a chronic illness seem to have caught up to me.

          My surgeon and I also talked about life in general, and realizing that he sees me as a whole human being and not just a screwed up face was oddly relieving. He repeatedly used the word "happy" to describe our end goal. It was not about an emotional state (I am already happy, even though my body seems to be engaging in continual self-sabotage) but rather about the space between the tip of my nose and the middle of my forehead, where my recent surgery was performed, becoming a place in which my health excels, not a place of swelling and discomfort. I thought his use of "happy" was brilliant. I felt understood, and I felt like his post-operative expectations were as high as mine are, and there are few feelings better than the feeling of being on the same page with someone. By using this word and talking to me like a fellow human being rather than a surgical case, he created space for suffering, acknowledging my hopes and fears and potential. Many times when doctors look at me I feel like all they see is a lack of potential. I am thankful for the exceptions.

          The best part of the week has been spending quality time with dozens of friends, new and old. I struck up a conversation in my surgeon's office with an elderly woman in the restroom, and we chatted for ten minutes at the sink about her earrings, which somehow led to a conversation about religion, which almost made me late to my appointment just a few doors down. I spent all day on Tuesday with various members of my church, learning and laughing with people I adore. I had several conversations with professors about how my health affects my academics, and all of them were more accommodating and understanding than the law mandates. I received unexpected cards, emails, phone calls, and messages from some of the kindest people in the world, even during this week in which nothing particularly exciting is happening with my health. My friends and I checked in, made plans, and just generally cared for one another, which I think is what we are all supposed to do at the end of the day. I am feeling immeasurably grateful.

My friend Kayla hanging out with me after a surgery. You can't
see it here, but Christian Mingle is pulled up on Netflix in the
background, which is how you can confirm that she is a true friend.

"Friendship." This is a word I have been considering quite a bit lately. All throughout elementary school my teachers reminded us, sometimes cheerfully and sometimes aggravatedly, to be friends with one another. No one said, "You're going to get so sick that at times you will literally depend on these people to stay in school, to eat, to keep your spirits up post-operatively, to make space for your suffering, to exist." Yet somehow they must have etched this message into the crevices of my young, impressionable brain, because I have always loved friendship. I think it takes a lot of practice, a lot of time, and a lot of intentionality. I often fail, but I like to think that I am getting better at being a friend.

Kayla, post-banana purchase,
undoubtedly living her best life
  Sometimes I feel like I have experienced the height of what friendship is, like I have been to the very top of the mountain, undeservedly chosen as the recipient of kindness too beautiful to write about. I believe in holy moments, ones that should stay secret and sacred and should not be made public on a blog. I draw lines of privacy around my health and life in general with much greater frequency than I think many readers might expect, yet I also believe in occasionally breaching these boundaries, in due time and with the permission of those involved, because there are lessons worth sharing embedded within them.

  When I think of friendship, and more specifically of making space for suffering, I think of my friend Kayla, who came to my room a couple of months ago to assist me with some practical health necessities, including opening my prescription bottles so that I could take my nighttime medications. Child-proof pill bottles tend to be arthritis-proof, which is quite unfortunate because asking for easy-open caps is not the most embarrassing thing in the world but it is certainly not the least embarrassing, either. Kayla delicately pushed open my door and I climbed out of my bed, barefoot on the cold tile floor of my dorm room, pain rushing through my body with every movement and every pause, my immune system offering no reprieve whatsoever. My face was puffy from repeated rounds of steroids and from an evening of crying on the phone with my parents and my doctors. All of my muscles hurt so badly that I could not think any further into the future than a couple of hours. My constantly changing cocktail of medications had my brain and body all messed up. I was relieved to see Kayla, but nervous about her seeing me.

          I set out all of the medications I needed help opening, feeling horribly embarrassed and small and sick and messy. I had recently started a muscle relaxer, and I felt sleepy and crumbly and fragile and not at all like myself. It seemed as though the smallest gust of wind could knock me over, physically and emotionally. Kayla carefully opened each bottle with her much more capable fingers, with an ease that I could only dream of, and we exchanged a few words acknowledging the enormous size of the antibiotic pills, neither of us venturing into humor. Perhaps it would have been brave for one of us to make a joke, but I thought it was brave of her to speak up about her observation without retreating into the lighter space of laughter. She looked horrified when she saw the giant white ovals, and for the first time I felt like maybe my struggle in swallowing them and my twice daily fits of gagging and trying not to vomit were legitimate challenges.

Kayla placed the bottles on my desk with their respective caps laid next to them, and then she stood across from me, looked me in the eye, and gently said, "I love you, Rachel," her voice full of empathy and exasperation, tenderly acknowledging the difficulty and longevity of my illness. It was the tone of someone who was intentionally making space for a person she knew was a disaster, inviting me from the dark corners of illness out to someplace I could not identify but was sure had a lot of light.

  I hugged her and I hope I told her that I loved her too, although looking back at it I am embarrassed to share that I may have been too self-absorbed and upset in that moment to reciprocate. I am pretty sure I said a few things, with my arms wrapped around her and my face illuminated by the brighter light of the hallway shining through the open door of my dorm room. I think she said a few things too, but I do not remember any of them; perhaps she does. I wept with my chin on her shoulder, knowing that this was the purest form of friendship out there, the purest form of love, the purest form of empathy, and still wondering if it would be enough to get me through the worst of times. I sobbed for what had been and for what was and for what I feared would be. I worried that I would never be able to stop. Kayla did not rush this uncomfortable moment, choosing instead to exist within it alongside me and to bear witness to suffering in its most broken-down form.

Luckily, it did not take long before I became concerned about the possibility of my snot transferring to her sleeve, which thankfully ended my tears, and we laughed a bit as I apologized and found some Kleenex. I achingly climbed back into my bed, and she very generously walked to a pharmacy to buy a special ice pack that I needed for the tight, inflamed muscles in my neck and brought it all the way back to my dorm room.

          The truth is, Kayla has made space for my suffering many times before, and sometimes I take her up on these offers and sometimes I reject them and choose to put up walls instead. Sometimes I reject spaces for suffering because I simply do not need them (much of the time I am genuinely doing well), and sometimes I reject them because I am not trusting or transparent enough. Yet even though she and I are both well aware of these indirect refusals that happen with more frequency than I would like to admit, she continues offering space for suffering and the implicit promise of her presence, and although I never say it nearly as often as I should, I am grateful every time.  

          Opening up space for suffering is a practice that I think the majority of us are very uncomfortable with. We want pretty endings, we want people to laugh, we want people to prove to us that they are "overcoming" their burdens. We want to know that other people are doing well despite their challenges, and by doing so we hope to prove to ourselves that we are invincible. We want to know that there is some sort of meaning behind pain, whether divine or philosophical, so that we can push away the reality that horrible, horrible things can happen to anyone at any time for no reason or purpose at all. We close up spaces of suffering when we find them open and raw in front of us. We pull out phrases that we think will stitch the people we love together, assuming that when people express their agony they are seeking a cure, or perhaps just trying to stop the screaming because the dissonance is too uncomfortable. 

  I often find it difficult to create space for suffering and to be a good friend. It can feel invasive, and it can feel unhelpful, and it can feel awkward. I firmly believe that it is worth all of these costs.

  While I stood hugging Kayla in my dorm room, with tears rolling down my cheeks, sucking in sharp breaths that hurt my chest and pained my spirit, I had no idea whether or not even the pinnacle of friendship was enough for my broken body and weary soul. But with distance comes clarity, and with time comes understanding.

  It was enough.

Wednesday, January 17, 2018

Trying Days

           It has been a tough and trying couple of days. I figured they would go down into the list of hard times that I do not write about, that cling to me invisibly, that I choose not to share. But there is something about snow that makes me feel brave, and I have spent time today reading blogs written by impressive people with chronic illnesses, and even though I am feeling nothing short of awful today I know that there are people living with juvenile arthritis just like me all over the world, and we all deserve the knowledge that there is someone out there experiencing the same pain.

           On Saturday night I slept for only 45 minutes; I was so overcome by pain that when laid down in my pitch-black room all I could feel was the throbbing of my joints, and when I closed my eyes I felt my eyelids twitching with shocks of pain. When I woke up from those 45 minutes I found myself uncertain of whether I slept lightly or was just barely awake. I hate that feeling. "It's just arthritis," I told myself, but I did not want to be complicit in my own destruction so I held off on pushing myself any further down this hole of dismissiveness. Falling asleep is difficult when your ribs feel like sharp intruders in your body and your joints feel tender and warm to the touch and everything aches and aches and aches. It sounds simple but feels overwhelming.

          My joint pain has been through the roof over the past few days, in a wince-when-I-push-down-on-the-gas-pedal and reluctant-to-speak-out-of-fear-of-sobbing and worried-that-when-I-stand-up-my-legs-will-crumble sort of way. It is by no means the worst it has been, but it is bad enough to be having a significant impact on my life. According to my rheumatologist, I am also having tendon involvement, and I think some of the pain, especially around my ankles, is tendon-related, but that is a bold claim for a girl who honestly cannot even define "tendon."

UNC in the snow!

          Thankfully, the grace I have been shown by so many dear friends has also been outstandingly high. I am lucky to know such genuinely good people. On Sunday night, my friend and I went out to dinner (I had only eaten a granola bar up until then, which was not helping my energy levels) and she encouraged me to go straight to bed afterwards. We shared pita, laughter, and advice, and for the first time on that threatening day I identified as a teenager rather than a patient. I spent several minutes trying to pinpoint how I was feeling, and then I happily realized that I just felt eighteen. Sunday night offered me ten hours of solid sleep, and while I still woke up on Monday morning feeling miserably tired, I was grateful for the rest. Saturday and Sunday existed as one dreadfully long block of time to me, and I have a new appreciation for the benefits of dividing our earthly existence into day-long segments, with time to recover and reset in between. According to my high school psychology class, scientists have not determined why humans require sleep. I am all for delving into the biochemistry behind this phenomenon, but I also think that perhaps this regular reduction of consciousness is just a pinch of mercy from above.

           My left hip has been in quite a bit of pain for a few days now. The only way I know how to describe it - and this is a strange way to speak about one's body, I know - is that the center (figuratively speaking) of your body is generally your head, where you think and speak and listen and look. All of your other body parts orbit around this central control center. But over the past few days, the center of my body has been my left hip. The rest of my body functions in response to the pain present there, and I am constantly in a battle between wanting my mind to take control and accepting that at the moment this hip holds a whole lot of power over me.

           Last night, I was losing my mind with pain, and just really not feeling like myself whatsoever. I crawled into bed feeling small and bruised and exhausted and disconnected from my body. And then, out of absolutely nowhere, I received a text from a sweet friend who I have not spoken with much lately, which read (in part), "Text me if you are going outside! I'll walk with you. I know it must hurt." My dad had told me earlier in the evening that I needed to be careful if I was out and about today given all of the snow, and all I could think of was how unstable my left hip felt. This fear lingered over me all night, and I tried to think about all of the ways that I could prevent falling, and then this angel dropped down from heaven with a very generous and sincere offer.

           I thought of a high school friend who once saw me limping and informed me, "We're going to walk to your next class together." When I protested, clinging to my perceived independence, she looked me in the eye and gently placed her hand on my elbow and said, "Rach, there is no reason to walk alone." Perhaps she intended for that statement to apply solely to our shared journey to my math class, but I felt it much more deeply, and even though I was reluctant to let her walk beside me, I did feel safer and much less alone.

           The culmination of these recent joint issues is that I am torn up in all sorts of ways about my plans for the weekend and whether or not they should involve a wheelchair, which is honestly ridiculous because what I should be worried about is how I plan to get all of my homework done. Between musculoskeletal pain and a severely screwed up sleep schedule, I do not trust that my mind is as clear as I would like it to be. I have been having semi-frequent near-falls, where pain in my ankles, knees, and hips causes me to shift positions faster than I can decide how to properly balance myself. To those around me, I appear to stumble over nothing, and so I quickly transform it into a joke about clumsiness rather than admitting that these are legitimately frightening incidents. From a physical standpoint, I think it would be easy to say that the wheelchair would probably be a good call, but from an energy standpoint, I do not feel like coordinating all of the logistics or requesting help, and from an emotional standpoint, this pain already has me feeling on edge and overly concerned about the smallest of things.

           This post feels choppy and disjointed to me. There is nothing tying each paragraph together, no underlying theme woven through my words. It feels selfish and unnecessary and unhelpful. I almost deleted it. But this is what days full of pain feel like, and I know that there is value in sharing that, even if it makes me uncomfortable. Honest narratives about hard days written by people coping with chronic illnesses have been incredibly comforting to me over the past seven years. I am able to pull myself together when I need to, to hold back tears, to genuinely smile and laugh, to distract myself. But I am unable to shift my center away from my hip, and I am unable to construct an essay with any literary elegance, and I am unable to make decisions about my health without becoming upset because I just feel so stuck. Should I take pain medicine or not? Should I use my wheelchair this weekend or not? Should I contact my rheumatologist or not? None of these questions have easy answers, and all of them involve other people. None represent insurmountable challenges, but all of them feel like more than I am capable of taking on at the moment.

           Today the world is snowy and white and gorgeous. Today I have friends who love me and parents who would do anything for me. Today I am feeling well enough to complete my readings for the week. Today I am wondering what the future holds. Today I am questioning whether starting a new biologic was the right decision. Today I am feeling embarrassed by all of the help I have needed over the past few days and all of the help I am likely to need in the next several days. Today I am all of these competing emotions and realities wrapped up together.

           Tonight I will sleep as much as I can. Tomorrow will be a new day.

Thursday, January 11, 2018

Building Chapels

          I do not usually pray about physical pain. God and I have plenty to discuss outside of the failings of my body. Honestly, it makes me sort of uncomfortable when people pray for my health. Over the past few years, many different church members have been burdened by the task of persuading me to permit the printing of my name on various prayer lists, and the braver of these poor souls have just thrown me on there without asking, figuring that a few closed eyes, mumbling lips, and clasped hands have never hurt anybody. Despite my discomfort, whenever I receive a note or a kind word from someone promising me that I am in their prayers, it feels like the sort of hug that cannot be tainted by costochondritis or tender shoulders or inflamed lungs, and my gratitude far surpasses my discomfort. I think a lot about how prayer fits into my experience of illness. I feel very at peace these days, yet I often pray for peace. Perhaps this is greedy of me. Perhaps I already have my fair share of it.

          Yesterday a caring friend in one of my classes, who was familiar with all of my health struggles last semester, gently asked how I was feeling. I was about to start my "okay, pretty good," speech when I unexpectedly found myself admitting that my musculoskeletal pain was "borderline unbearable." My friend timidly suggested that based on how I looked I might have had a fever. In order to cope with the significant increase in joint, tendon, and muscle pain that I was experiencing on only my first day of classes, I submitted to two separate naps, during which I iced my joints, curled up my limbs, and surrendered to my pillow. In the midst of all of this physical coping, I found myself praying the Hail Mary, not hoping for or feeling much as a result, but repeating it like the sort of habit that you cannot fully flesh out but seems to hold an innate sense of importance.

          Occasionally I am asked about specific Bible passages that have helped me in light of my illness. Usually when I bring up the book of Exodus I am met with stares of, Burning bushes... plagues of frogs... the parting of the Red Sea... how is she connecting this to her autoimmune illness? Perhaps with freedom from the captivity of disease? Where is this going?

          Sometimes I wonder the same thing. The first time I completely read through Exodus, I found all of these parts fascinating and bizarre. Yet despite the multitude of incidents that I could not relate to in the most direct or obvious of ways, I found myself constantly rereading chapters 35-40.

          For those of you who are not familiar with these chapters of Exodus, all you really need to know to understand this post is that in this passage God provides specific, orderly instructions to Moses about how to create the tabernacle which Moses then distributes to the community, and at the end of chapter 40 "the glory of the Lord [fills] the tabernacle," (New Revised Standard Version, Exod. 40.35). The book concludes by explaining, "[T]he cloud of the Lord was on the tabernacle by day, and fire was in the cloud by night, before the eyes of all the house of Israel at each stage of their journey," (Exod. 40.38). I try not to be too theologically irresponsible, so I did read a commentary on these last few chapters in my church's library to make sure I am not completely off-track with this post. Among many tidbits of information and interpretation, I learned that God entering the tabernacle was not as immediate as it sounds based off of chapter 40 alone, but it happened nevertheless.

          These last five chapters of Exodus are arguably the most boring part of the entire book. I adore them.

          So many times when we try to comfort people who are in pain from a religious angle, we attempt to provide either a reason for the pain or the prospect of healing. I understand why this is so tempting. In fact, explicit reasons and hope for healing were both things I very much desired during the first few years of my illness. We offer physically hurting people the stories of Job and of Paul's thorn and of Jesus healing people with leprosy. For some people, these stories are immensely helpful, and become invaluable sources of wisdom and comfort. But Job suffered way more than I ever have, and if you draw a Venn diagram of me and Paul you will find zero overlap, and the thought of praying for divine healing makes me squirmy and uncomfortable.

          Specific instructions regarding stone, yarn, wood, and flowers, though? Now I am interested. I like the idea of faithfully arranging everything and following careful directions in order to prepare the holiest of places. I like to think that God cares about all of the little details and is not too distant to maintain color, texture, and pattern preferences. Now that I am writing this, I wish I could go furniture shopping with God.

          When I read the final chapters of Exodus, I find myself moved by how much inhabiting the tabernacle, and therefore being present on earth with the Israelites, means to God. It is so important that exact specifications are provided, and everyone in the community comes together to create the materials needed to properly construct it. Out of all of the things in the universe that God could choose to be concerned about, God chooses precise measurements and precious metals, signifying how seriously being present on earth with people is taken. This is a principle and a promise that I always find myself clinging to during difficult times.

          Perhaps I like this story so much because I have always wanted God to be somewhere. I remember pointing to the sky one time when I was about five or six years old and asking an adult at my church to confirm that God was up there. "Rachel, God is everywhere," I recall being repeatedly told, yet paradoxically everywhere is a much more frustrating answer than somewhere, and so while this adult responded to my question with a glittering smile reflecting her belief that God is all around us, I just stared at her with a disappointed expression on my face and then squinted up at the clouds, wishing that each one represented a different room in the hallway of heaven rather than an infinitesimal part of everywhere. If something is everywhere it is impossible to find. I want things to be somewhere. When I lost an earring this past Sunday at church, I wanted to know that it was in my sanctuary pew, not that it could have been anywhere in the building. Everywhere is daunting and difficult. Somewhere feels achievable.

My sweet, sweet friends Georgia and Aria. I love these ladies so much.
This picture was taken 5 days post-op, on Christmas Eve. Just a few minutes
prior to the taking of this photograph, under the influence of pain medications and
pain itself, I told them that I wanted to have my puppy baptized. Good times.

          I am no Moses. I have no tabernacle. Yet over the past few years, I have learned to build little chapels everywhere I go, to create "somewheres" out of "everywheres." Sometimes I sit in my car in a parking lot and play hymns through the speakers, feeling the fullness of the music in the enclosed space like a blanket of voices draping itself around me. Sometimes I walk through parks to exhaust my soul into peace, imagining the entangled tree branches as the roof of an ancient sanctuary that holds secrets of grace much deeper than I am capable of understanding. Sometimes I stare at all of the brightly colored bell peppers in the grocery store, listening to the afternoon chatter with great care as each passerby unknowingly contributes towards a treasured sermon woven together from the wisdom of strangers. Every place I go, I find myself seeking ways to build a chapel, just in case I suddenly find myself too overwhelmed to accept "everywhere."

          Some of the most terrifying moments of my life have been the few seconds or minutes in between being wheeled into an operating room and being completely anesthetized. These moments are frightening in part because being in between consciousness and unconsciousness is just a scary place to be in general, but also because while my eyelids become heavier and heavier I become strikingly aware of the complete power the nurses and anesthesiologist hold over me in the hours in which I am asleep. They could push any substance they want, and I would have no say in it whatsoever. I occasionally have nightmares about these moments. They haunt me even after I am completely physically recovered from operations.

          When I went in for a procedure in November, after my jaw surgery in October and before my ENT surgery in December, I had to be lying on my side as I was put under. I found this to be nothing short of horrifying. The medications coursing through the narrow tube of my IV made me feel unbalanced and I was overcome by the sensation of falling off of the operating table. Even just thinking back to these few seconds of complete horror, which were exacerbated by my difficulty in expressing my concerns due to the gradually paralyzing effect of the medication, leaves me with a sickening sense of panic.

          "I... I don't feel good," I said through slow, slurred speech. "I... I'm falling."

          "We've got you," said the tall pediatric anesthesiologist hovering over me. The untroubled quality of his smooth voice carried through his flimsy surgical mask. "We are all around you. You are not falling."

          I appreciated his reassurance, but my physiological sensation of imbalance took reign of my tongue. "I'm falling... falling off, falling..." I had to concentrate all of the energy in my body toward my mouth simply to mumble these words, with one side of my face pressed up against the white sheets stretched out over the table.

          I do not know if I was crying internally or externally, but I was one hundred percent convinced that I was about to tumble onto the floor, and I knew I would not be able to react quickly enough to prevent injury. I imagined my body lying limp on the tile, blinking up at a sea of blue scrubs and fluorescent lights, exposed by my paper gown, bruised and broken and unable to tell anyone the location or severity of the pain.

          My muscles were medically relaxed and I could barely speak, but my heart was overcome by fear. Despite knowing that I was not falling off, no less than four nurses firmly pressed their hands against all sides of me in unison, locking me into position, and a few seconds later the anesthesiologist pushed the plastic plunger of his thick syringe all the way down and I was asleep.

          I have thought a lot about the collective reaction of those nurses since that procedure. They prioritized my vulnerability over my accuracy. They sensed that my fear was not reflective of reality. I was wrong. I was not falling. They swarmed me with stability anyway.

          Now, I think of this incident as a smaller representation of how I feel about God. I know that God is omnipresent; the issue is not a lack of belief. I know that "everywhere" is true, just as in the moments preceding my procedure I cognitively knew that I was not falling. But I wanted to touch the evidence. I wanted the nurses to be somewhere, not everywhere. When they laid their hands on me, a practice that felt strangely ceremonial and religious even though it was purely medical, my fear was not eliminated but my panic was laid to rest. They were everywhere, and I could feel the sum of their hands all around me, and yet they were simultaneously somewhere, and if I thought about it in pieces I could feel each of their cold fingertips pressed against my ribs and spine. They promised me with their hands that I would not fall. They did not leave my most vulnerable moment up to my wavering faith. They created a chapel out of a surgical space, instantly becoming compassionate members of a congregation that I did not know I would need.

          Perhaps one day when my faith is strong enough I will be able to hear, "We are all around you. You are not falling," and believe it without any need for fingertips. Perhaps I will soak in those comforting sentences and relax into an enticing slumber, trusting completely, allowing my tongue and heart to be still.

          This possibility leads me toward another one of my favorite verses: "The Lord will fight for you; you need only to be still," (Exod. 14.14). Sometimes I cannot be still, even when I know I should be. I thrash and scream and search for answers and build chapels and beg for proof of "somewhere." I throw out "everywhere" as insufficient. I do not laugh at the irony.

          I know that I can experience God without the tabernacle. I know that this is possible, that physical structures are unnecessary, that God is everywhere. But the stones and the yarn and the wood and the flowers give me hope that perhaps my practice of building chapels is not a waste of time in the eyes of God, even if it is ultimately unnecessary. Maybe trying to have faith and having it are of equal value. Maybe God has consistently and intentionally provided me with people, places, and things that I can weave into metaphors to construct chapels because there are some moments in which I am just not strong enough to trust in "everywhere." Maybe some people need "everywhere" and some people need "somewhere." Maybe God empathizes with both.

          Perhaps this is why I have so many friends willing to surround me, even when I can barely describe my sensation of falling, with love and hope and the promise that God is always with me. Sometimes when my eyes are swollen from crying and I am rotating through ice packs on various joints and I have three new voicemails from three different doctors I look up to see all of the people in my life swarming around me like that team of stabilizing surgical nurses. Each time a friend holds my hand or envelops me in a hug or offers affirming words, I move from "everywhere" to "somewhere." Each person offers their unique presence, which can be confirmed by the most basic of human senses, and the walls of the chapel rise up from the soil, called into existence by the congregation that forms around me. I feel God with me once again.

          I am thankful for all of the people and moments and practices that allow me to identify God as "somewhere." Sometimes I beat myself up for not consistently being able to recognize God everywhere. I worry that God will be disappointed in me, or that church people will be disappointed in me, or that I will disappoint myself. I worry that the fleeting quality of my complete faith will render me unfit for ministry, unprepared to comfort a hurting soul, or too weak to matter. But then I am reminded of the end of Exodus. If God cares about stones, yarn, wood, and flowers, surely God cares about these little chapels I build ever so carefully, with worried hesitance wedded to abounding hope. Surely God cares about the hymns that blast through my car speakers and the trees that sprawl into sanctuaries and the chatter that forms sermons. Surely God uses nurses and friends and loved ones to assure me of a divine presence that remains even when I feel like I have journeyed too far from the tabernacle, offering me drops of grace here and there that I usually do not recognize until they have accumulated into salty ocean waves, crashing down on me when I panic upon realizing that everything is a bit too still for my liking.

          Perhaps God is great enough to be everywhere and compassionate enough to be somewhere. Perhaps the paradoxes are the point.

Wednesday, January 3, 2018

Unexpected Defeat

      I blinked back tears in the produce section today.

      Yesterday I had another physical therapy appointment, and my hips seem to be doing significantly better than they were a few weeks ago. I left the appointment with the news that I may be discharged next week. I joined a church committee and set up meetings and sent in applications and finished a book. I had a wonderful day.

      Today my day began with cuddles with my cat, playtime with my puppy, and a trip to the bookstore, where I made several new friends who chatted with me about their favorite books and whisked me all around the store in search of new literary treasures. I had a surgical follow-up scheduled for the late morning, which I expected to be quick, simple, and relieving since it would essentially conclude the recovery process and end my rough semester. Afterward, I planned to go to a new and local thrift store, stop by a reuse store for craft supplies, and take my sister and her friend to our favorite coffee shop for them to do homework and for me to read. Today was supposed to be another great day.

      At my post-op appointment, I expressed to my surgeon that I thought I was doing okay, aside from what seems like an abnormal amount of daily blood loss and sinus headaches right above my eyes. I figured these were normal post-op symptoms, indicative of the healing process, but my normally very calm ENT looked alarmed when I brought this up. He tried to scope me, but apparently the inside of my face is raw and swollen, and is not healing normally. The pain was unbearable. "I'm so sorry, I can't do any more," I muttered with my eyes squeezed closed and watering and all of the muscles in my body tensed up. He seemed to sense my agony and promptly removed his scope and instruments before sitting back down. He typed a few things into his computer and asked if I was okay. "I'm just really not feeling well," I mumbled with my hand right over my eye, and he glanced up at me. I must have looked awful, because in the span of just a few seconds he flew onto his feet, checked my pulse, leaned me back, and turned the light off.

      I was given 7 sprays of a numbing agent in each nostril (as opposed to the normal 3) and left to recover in the dark room. Luckily, by the time he returned the numbing agent had taken effect and I was able to submit to a couple of minutes of scoping to allow him to officially determine that my face is a hot mess. He prescribed a steroid and an antibiotic, both of which are guaranteed to destroy my stomach but necessary nevertheless. I am frustrated that because of these complications my post-op appointments are bleeding into the spring semester, which I have idealized in my head to be a perfectly healthy one.

     I left the appointment extremely uncomfortable, because my entire face was numb yet painful, stiff but bloody. I sat in my car and called my parents. I debated going through with my planned trip to the thrift store, but just could not pull myself together enough to want to go shopping. Instead, I drove to Target to pick up my prescriptions. I walked in with a throbbing face. I intended to go straight to the pharmacy, but was not thinking super clearly and found myself standing in front of the blackberries, noticing, with an uncharacteristic sense of dismay, that there was not a single unblemished carton. Tears welled up in my eyes, and I felt ridiculous for crying over fruit, but was unwilling to admit to myself that it was not the berries I was upset about. Don't cry, don't cry, don't cry, I repeated to myself silently as I walked up to the pharmacy. I prayed that I would not see anyone I know. There was drama over whether or not one of my medications was in stock. Just a few days ago, I was bragging to everyone at my church about how I felt "normal" or "fine" or even "good." And then there I was just a few hours ago, with my surgeon promising me that I will be okay in the end but informing me that I am not doing so well at the moment and a pharmacist scouring the pharmacy for an antibiotic I had never heard of and my face feeling like someone else's pinned to my skull.

     I felt so defeated.

     I debated cancelling hanging out with my sister and her friend in the coffee shop, but then I thought, This day is redeemable, and I am okay. So now I am surrounded by rich aromas and warm drinks and people engrossed in their e-mail inboxes and with their heads buried in novels, and I am relieved that the numbing agent has completely worn off and my face feels like mine again. When I went to my first post-op appointment last week, I told my dad that my surgeon was going to have to either pull out my nose splints or prescribe me an antipsychotic. I simply cannot cope with my face feeling foreign.

Here is a picture of a tired Dante to make this post a little more cheerful!
      I would not necessarily call today a bad day, but I do feel quite exhausted. Exhausted of choosing between medical benefits and side effects, of bad news, of being a hot mess, of always feeling like there is something I should have done differently, of blaming myself for every medical outcome. I apologized to my surgeon several times for making the appointment so difficult, for becoming so pale and clammy, for alarming him, for not knowing to contact him about my post-op symptoms sooner, for barely being able to stand the exam, for the complications. As I walked out of the clinic he told me, "Rachel, you don't need to apologize. It's my job to get you better." He is usually sarcastic and funny, but today he was serious.

     I am grateful for perceptive doctors, for coffee shops, for my sister and her friend, for car rides with the windows down even in 30 degree weather, and for cheerful pharmacists. Tomorrow is a new day, hopefully one with less blood and less probing and less defeat.