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."