Tuesday, April 17, 2018

The World of Working Bodies

          Before heading off to bed on Sunday night, my mom and I were standing in our kitchen, discussing my uncooperative, melodramatic lungs, which seem to have decided that if there is a single particle of pollen in the air the only appropriate response is to cease all breathing operations. "It's fine," I said a few times, probably trying to convince myself more than I was trying to convince my mom. We exchanged thoughts about medications and the season of spring and my lung function (or lack thereof).

          "It's fine, it's just... It's so annoying that no one else is dying," I blurted out. I instantly felt bad and followed it with, "I don't want anyone else to suffer, but it's annoying."

          This was definitely an atrocious, no good, all-around cruel thing to say, but it was true, and my mom was so quick to agree with me and to empathize that I felt a little bit less like an unforgivable monster after she enveloped me in a hug. I am genuinely confused when I walk through campus and see people soaking up the sun outstretched on grassy quads, breathing in pollen as carelessly as they want. I am equally bewildered by the I-can-take-a-Claritin-in-the-morning-and-be-mostly-okay population. I can barely scurry from one building to another without losing function in my smaller airways, and if I have to be outside for any longer I have to build in time for a nebulizer treatment. I do not understand how other people's bodies allow them to live so freely. I do not understand why mine has to react as though the world is ending just because it is springtime.

          Of course, I understand that there are many things more dreadful than wavering physical health, and I recognize how egocentric and ridiculous my remark was. There are countless tragedies that hold much deeper sorrow than the inflammation in my body. I know that almost everyone is hurting, and that emotional pain is often much worse than physical pain. But when you are struggling for breath and the other people in the room are clearly not, it is difficult to remember these fundamental connections to broader suffering and to avoid feeling isolated. When you are in a codependent relationship with albuterol and Zofran and Benadryl, it is almost impossible not to wonder how everyone else seems to be existing in bodies that are not constantly trying to shut down.

          Yesterday went progressively downhill from a health standpoint. By the evening, I was not feeling like myself at all. When I looked around at my classmates and friends, I found myself once again annoyed that they were not in my world. Or perhaps that I did not have the option of entering theirs. Or perhaps that no one else seemed quite as concerned about how quickly they could exit the room if nausea overtook them, or had their hair braided back because they were worried about throwing up, or could not breathe deeply no matter how hard they tried, or felt every aching bone in their body.

          When I returned to my room for the night, after what felt like a marathon but was really just a busy Monday, I took a Come-to-Jesus Shower. I like to think we all take these at times, but if you have not, it is basically when shampooing your hair coincides with realizing what an awful person you are, and by the time you are conditioning the ends you find yourself creating a mental list of all of the amends you need to make in order to be a less terrible human being. Last night's Come-to-Jesus Shower, which was unexpected but not unlikely given the circumstances of yesterday, was entirely too long and overly emotional. The only redeeming part was that because I am on a maximum dose of Benadryl every four hours, I have no tears in me, and we thank God for that, because I do not think my lungs could have handled a breakdown.

          Warm water loosened my joints and soothed my muscles and, despite my stubborn resistance, softened my heart. Gradually, I found myself no longer quite as annoyed that no one else seemed to be dying. I was simply grateful for everyone who reached out despite my self-centeredness and absorption in my own pain. I realized that literally all day people had been trying to enter into my world, and I was pushing them away and then blaming fate or God or some other responsible force for the enormous space between us, when in reality I was the one drawing all of the boundaries. Perhaps I was afraid of trying to connect my world with the world of someone healthier and failing. Perhaps I feared that failing would make the gap seem unbearably wide. Regardless, I was not brave enough to try, and so I cut off concern and pushed away compassion and convinced myself that there was absolutely no way that I could have a meaningful conversation with anyone who did not feel like their body was decaying from the inside out. Perhaps this is where my lungs get their drama from. When my Come-to-Jesus Shower concluded and I returned to my room, I sat at my desk in my favorite pajamas, feeling defeated and mushy and wrong and grateful all at once, and typed out simple apologies to a couple of people who received way too much harshness and way too little gratitude from me. Water droplets from the tips of my hair crashed onto my phone, clouding the screen, and as I wiped them away with the sleeves of my pajamas I found myself with extra time to hope that if friends and family knew that I was well-aware of what a jerk I was, they might at least be a bit less hurt by my lack of kindness.

Level of annoyance with my lungs
when this picture was taken: 9/10
          Sometimes I feel like there are all of these people who are great at being sick, who are making the most of difficult circumstances and are learning and growing and thriving, and then there are those of us who are just trying to make it from one point to another without everything falling apart. Way too often, I seem to fall in the latter category, wondering why everyone else's bodies seem to respect their right to exist while mine attacks itself for no discernable reason. It is not a fair question to ask, but it is a difficult question to push away. It is not a matter of wondering, Why me? but rather revolves around a more external question, Why not all of you, too? My favorite Tulane nurse taught me to check my nails when I am struggling to breathe, instructing me to nebulize without waiting for a convenient time if they appear bluish in color. Sometimes when I see other people look down at their nails I wonder how their blood oxygen is, and then I remember that this is not what most people are thinking about and I begin to feel like I am existing in a reality that bears less resemblance than I would like to the realities of those around me.

          I have been thinking quite a bit about what my reality is lately, especially since I am sort of in an odd middleground state with my health. I have found entering the hospital attached to my college campus to be a strange experience. As I walk through an unmarked side door for appointments or scans, I cross over from "student" to "patient," and I always wonder which is the truth. When I step onto the speckled tiles that make up the gridded hospital floor and breathe in the air that smells so different from the fresh air of the college campus, I find myself simultaneously horrified and relieved. I wish I could exist solely in the "student" space; the hospital makes me feel icky and scrutinized. At the same time, when I am whisked into this community of patients, I think, Oh, thank God, these are my people. I don't have to have it all together here. I feel blessed camaraderie with the other children and teenagers in the pediatric specialty waiting room, as we collectively try our very best to exist among the World of Working Bodies yet repeatedly find ourselves in the sterile and invasive World of Stethoscopes and Needles.

          So this is the truth of my being chronically ill: sometimes I find myself inexplicably annoyed by the comparatively good health of others, which is most likely the mark of a horrible person. I am sure there are many who are much sicker than I am who feel the same way about me. There is some comfort in knowing that whether you are healthier than me or sicker than me, you will leave this post certain that I often fail to be a good human, daughter, and friend. I am not the hero of this story, despite how frequently I wish I could be. This does not mean that I punish myself indefinitely whenever I think or say or do something that is unkind, but it does mean that I take Come-to-Jesus Showers, and I convince myself of the existence of imagined boundaries to spare myself the pain of discovering any real ones, and in my head I criticize the World of Working Bodies to make myself feel better about my exclusion from it, and I learn again and again to apologize even when admitting my unimpressive response to the cruelties of my illness is humiliating.

          I am not the hero of this story. And we thank God for that.

Thursday, April 12, 2018

How Sexism Ruined My Jaw

          "Is there something else going on... outside of all of this?"

          This is the question my jaw surgeon tenderly asked me a little over a week ago when I only made it one sentence into explaining why I was there, laying in a well-cushioned hospital chair with six lights shining directly onto my face, before dissolving into sobs. Not crying. Sobs.

          Of course, I was horribly embarrassed. And I was at the appointment by myself. And I was desperately trying to pull it together. And I knew that if I did not give him at least a bit of explanation regarding my seemingly endless tears, he might be genuinely concerned that I was losing my mind.

          "I'm worried about damage," I said, summing up my concerns into a short phrase that did not describe the magnitude of my sorrow but was not a lie. He did his best to reassure me. We discussed further imaging and medications and surgeries. He was gentle and encouraging. I pulled myself together not because I was no longer upset, but because the very reason that I was dictated how I must act in this scenario.

          I am a fairly well-educated person, with a parent who works in the medical field, stable health insurance, and excellent medical resources. I have educational background in public health and the health humanities, and I am reasonably medically literate for an undergraduate. Still, when it comes to the case of my jaw, I cannot help but feel like for years on end I slipped through the medical cracks and gradually became a victim of a sexist healthcare system. Some people are uncomfortable with the use of the word "victim" in situations like these, and I respect that completely. I would never refer to someone as a victim without knowing that that was their preferred term. But please hear this: I am a victim of medical sexism. I hope this word makes you uncomfortable. I hope the brief excerpt of this story that I have published below does as well.

          Last January, I saw my New Orleans rheumatologist due to increased joint pain, particularly in my jaw but in other joints as well. I shed a few tears when he asked me to describe my fatigue and physical limitations; after all, Mardi Gras was coming up, and I was keenly aware that I was not going to be able to participate based on all of the health problems and chronic infections I was experiencing. During a brief physical exam that left me feeling more like a piece of meat than I ever have before (and that is saying a lot), he observed inflammation in some of my other joints, but never even examined or measured my jaw. Instead, he barked for a nurse to come in and administer a steroid shot to try to control the flare, and then, without ever saying one word about it or asking a single question, dropped "anxiety" into my EMR and left the room. I was livid. And teary and upset and emotional. If I am too honest about how arthritis affects me and I display any sort of emotion as a result, my symptoms are disregarded or assumed to be psychological in nature. If I am too stoic, my symptoms and their effect on my quality of life are underestimated and I am undertreated as a result. There is no way to win this game. Sometimes it feels as though there is no way to be a woman in a hospital gown and to be believed.

          By the time other medical professionals, none of whom are actually responsible for the care of my jaw but who look out for me with all of the expertise and concern in the world, alerted me to the severity of my jaw problems (read this post for more background on how this happened), it was, in some sense, too late. An MRI showed permanent damage. I had a minor procedure in the fall to try to prevent even more damage and to clear out some of the "debris," which, by the way, is never a word you want to use in reference to your own body. I probably would have been more infuriated by the necessity of surgery had I not been so consumed with an unidentified rheumatologic illness that was destroying my body. Just a few minutes before its scheduled time, the procedure was almost cancelled due to a heart abnormality that had been discovered when I ended up in the ER for chest pain the previous week. Even on jaw surgery day, my jaw was the last thing on my mind.

          We were about to start a handbell rehearsal a few weeks ago at my church when I opened my jaw, probably to yawn or to say something, and I realized that it was loud. My mom could clearly hear the joint moving while standing next to me. And it hurt. I slipped off a handbell glove and sent a message to my surgeon while everyone else was organizing their sheet music. I knew just by how it felt and sounded that it was not going to be good. I became furious all over again at my New Orleans rheumatologist. I thought of the almost ten months of active damage that potentially could have been prevented if he had trusted me enough even just to place a hand on the side of my face and ask me to open my mouth. That three-second process was all it took for my more empathic doctors and dentists to realize that I needed to see a surgeon and return to my rheumatologist as soon as possible.

          Despite referring to myself as a victim of medical sexism, I still blame myself for several aspects of the damage my jaw has incurred over the years. I could have been more compliant with my medications as a young teenager. At one point an MRI of my jaw was ordered when I complained of discomfort at an appointment, but I chose not to go through with it because it would have required the removal of my dental braces. If I had been informed by my doctors at the time that juvenile arthritis patients often underestimate the damage done to their jaw when attempting to evaluate this damage through pain levels alone, I probably would have gone through with the MRI, despite the inconvenience of having my braces removed and placed back on within the span of just a few hours. But I did not know. And no one told me.

          More importantly, I wish I had stuck up for myself more. I wish before surrendering to yet another steroid shot I had walked to the nurses station and demanded a new appointment with a different rheumatologist. I wish I had sent in complaints to the hospital. I wish I had looked that rheumatologist in the eye and said, "I am not leaving until you examine my jaw," or even "The way you are treating me is inappropriate, and I do not think you would be dismissing a male patient in the same way." I wish I had asked my primary care doctor to set me up with a new specialist. I wish I had paid more attention to my jaw when I was so focused on tidying up the other crumbly parts of my body. I wish I had been braver and bolder and firmer.

          I also wish he had listened. I wish he had taken me seriously. I know what he saw. I was a seventeen-year-old girl who was thirteen hours from home in her freshman year of college. I am not upset that mental illness was a part of his thought process; for any good clinician, it should be. The problem is when assumptions are made based on my age, gender, and presentation that do not reflect my medical reality because it is easier to blame stereotypes than to confront a challenging medical case. The problem is that he was wrong, and had he been a better (or even just more thorough) doctor he would have quickly realized that he was wrong, and I suffered as a result. This is not an isolated case or story. That part hurts too. I wish this experience were rare. I wish that no one could relate. Instead, I feel like a statistic of something that is horrible, inadequately addressed, and frequent.

          Recently, I was completing an academic paper in which I focused on variations in syntax between women and men.* I am always hearing messages that are intended to be empowering regarding the ways in which women speak, such as, "Don't add qualifiers," or "Be confident in what you say," or "Be assertive." These demands attempt to break women out of cycles of uncertainty. Just read this article as an example.

          But here's the thing: I do not want to be more certain. I want men to be more uncertain. I do not want to be asked to change my speech patterns in order to conform to a greater degree of certainty that is supposed to convey authority, expertise, and the overall worthiness of my thoughts and opinions. I want to keep admitting all of the things I do not know, and I want to keep apologizing readily and frequently, and I want people to stop telling me that I should be speaking more assertively. I do not want to have to mirror speech patterns associated with masculinity for my voice to be valued. I want my qualifying statements to be respected and viewed as a means through which to express self-awareness and to invite other ideas into the conversation. I want uncertainty to be celebrated as a tool for growing and learning and collaboration. I want to say, "I don't know," and ask, "What do you think?" more than I say, "I am sure." I want to preface many of my opinions (though not all - there are obviously some things I am certain about) with "It seems," or "Perhaps" or "Maybe it is possible." I do not want to have to change in order for men to respect me. I do not want this awful, controlling version of masculinity to be the ideal that women must strive to reach, and I do not want to sacrifice my more feminine speech patterns in order to make myself worthy of being listened to. Why do we never ask men to make their speech more feminine? Why do men get to set this standard for how we should express ourselves?

          In doctor's offices, I find myself constantly monitoring my behavior and language, to figure out if I am coming across as too emotional or suspiciously uncertain about my own pain and body. The reason I dissolved into sobs in a hospital room with one of the most compassionate, intelligent, and trustworthy surgeons I have ever met was because I firmly believe that the damage done to my jaw was avoidable. I believe sexism played a critical role in the dismissal of my symptoms and the lack of proper and prompt imaging and treatment I received. I think that I should have stuck up for myself more. It hurts to think this. Every time I feel pain in my jaw, due to what my surgeon informed me at the appointment is "bone-on-bone" friction, I worry that at least in this part of my body, sexism has won and I have lost. We will never be able to restore my jaw to what it once was. There will likely be more procedures, perhaps even in the next month or so. I will likely shed many more tears over this. I cannot undo the damage that was permitted by sexist physicians practicing within a sexist healthcare system.

          What I can do is tell you that if you are uncertain about your own uncertainty, I am with you. If you feel written off by incorrect diagnoses with sexist origins, not dissimilar to the labels of "hysteria" that plagued women before us, I have been there too. If you need someone to tell you how real you are and how valid you are and how brave you can be, I will remind you without any hesitation. If you feel suffocated by the voices of domineering men in white coats who walk through hospitals on endless power trips at your expense, I will demand that you be heard.

*I refer only to women and men in this discussion, because I do not have knowledge about research in this area that extends past the binary. If you have information, articles, literature, or just thoughts in general on this broader topic, please email me!

Saturday, March 24, 2018

Who to Call Next

          If you have never had the experience of calling a specialty pharmacy to beg for your grossly overpriced medication to be shipped your way in an oversized styrofoam box surrounded by ice compresses and warning labels and wasteful packaging, consider yourself pharmaceutically blessed.

           My mom passed this responsibility onto me in December, when she helped me get my first three months of Humira ordered. I cannot explain in words how draining I found the whole over-the-phone process to be. My dogs were barking, my family was chatting, I was repeating my birthday and address a million times, everything seemed to require an extended period of being placed on hold, and there were objectively way too many steps to go through. I generally consider myself to be a fairly patient person when it comes to detached interpersonal interactions of this sort; the closest thing I ever have to road rage is widening my eyes and saying "Um," when another driver merges dangerously or flies through a red light. But it was not the pharmaceutical representative on the other end of the line bothering me so much as the screwed up system that dictates that I spend a solid chunk of precious time doing this on a regular basis. I cannot believe that my mother has had to put up with this for approximately seven years. Please observe a moment of silence for the many hours of life she has had to miss just to ensure that I have a chance at semi-normal joints.

Shout out to my wonderful friend Alana! She is a blackberry
skeptic but otherwise a 10/10 friend. A couple of days ago I was
running on only 3 hours of sleep, and struggling to hold down/refusing
any food due to hip pain and nausea. By evening these problems
caught up to me and I was borderline delirious. Right before this
picture was taken, she leaned over and casually but seriously asked me,
"How are you doing? How are you really? Tell me the truth."

          This process needs Jesus, I thought only half-jokingly when considering the many tribulations required just to obtain a medication that I am not convinced is doing anything for me. When I found myself with an extra hour before a meeting about a week ago, on a good day in which I was feeling unusually confident in my ability to function as a human being, I knew it was the most ideal time to get around to ordering my next doses. I thought of the perfect place to make the dreaded call: a church.  

          I expected the phone call to take approximately ten minutes, and I brought all of my homework into the chapel with me because I anticipated having empty time in between ordering my medication and heading off to my next meeting. The phone call(s!) ended up taking an hour, which included moments of tearing up about an enormous copay, the amount of which I was not prepared to hear revealed so casually and bluntly over the phone, tearing up about administrative mistakes, which I did not feel equipped to directly confront, and tearing up about a prescription which, for a hot minute, was completely untraceable in the company's database. There is no need to go into more detail - you get the point here.

          My saving grace was Amanda*, a pharmaceutical representative who committed herself to figuring out all of the obstacles we encountered while acknowledging how overwhelmed I was and encouraging me along the way. Her voice was chipper but it was easy to tell that she was genuine, and she allowed for long pauses in between my statements and hers, making space for the heaviness of the conversation as it bore down on me even in the comfort of the chapel. "Rachel, we'll figure this out," she kindly reassured me as she tried new ways of searching through the system, "I promise." I thought of how few people in the health care systems brave those final words, of how even friends are sometimes hesitant to step into a territory of promises that can feel binding and constrictive. Amanda was courageous. I liked her already.

          Still, I was not prepared to place all of my trust in her, and towards the beginning of our conversation I feared that she might say that she was very sorry but she had done everything she could and it was just not working. Please don't hang up on me, I prayed. My dignity is the most frequent casualty of my chronic illness, and I was expecting to have to sacrifice all of it by admitting to Amanda, I don't know who to call next. In all honesty, I probably would have just called my mom, who is a pharmacist and is quite good at finding solutions to these sorts of frustrating predicaments when my desperation eventually rises above my idolization of independence. Or perhaps I would have called a New Orleans friend and fellow public health major, to vent for a moment about how capitalistic and unjust our entire health care system is and how much I want to be a part of changing it but how very tired I am. Maybe I would have just kept hugging my knees to my chest, sitting in the exact position that my physical therapist has told me is the worst for the arthritis in my hips, waiting to see if my phone would ring and someone on the other end would excitedly reveal, "You won't believe it! We found the prescription and the order and your Humira is on its way to you!" 

          I don’t know who to call next. This sentence fluttered around my mind while I repeated helplessly to Amanda, “No, I’m sorry, I don’t know,” as she continued her persistent investigation of why shipping a refill to me was becoming such an impossible process, asking specific questions based on information I did not have access to and could not easily obtain. 

          As I was sitting in the chapel, praying that Amanda would stay committed to problem-solving despite my lack of suggestions regarding what she should try next, I thought of all of my friends who have been put in her exact same position, minus the professional customer service component, during my health struggles. It is so hard to ask for help, and sometimes when my friends offer to be of assistance or ask me how I am doing I find myself saying to them the exact same phrases I was repeating to Amanda: "No, I'm sorry, I don't know." Sometimes these phrases spill out in rhythmic sequence and sometimes I disconnect them from one another. I thought of how many of my friends have swooped in and stayed with me despite my own lack of helpfulness, and despite not being compensated or professionally rewarded in any way for their loving concern. I thought of poor Amanda, who probably just wanted an easy Thursday afternoon with simple customers and simple cases and simple refills and definitely no tears. Amanda probably did not imagine her evening being occupied by a weepy soul with a 1999 birth year who was shakily reading off payment numbers while making the largest purchase of her life thus far.

          I feel like a thunderstorm of complicated hovers above me, showering down on unsuspecting friends and medical professionals, some of whom are not carrying umbrellas with them and many of whom have never even seen the forecast. My closest friends and family recognize particularly stormy days through the tiniest of observations; it is actually quite impressive, even though it sometimes startles me a bit. They notice details such as the paleness of my skin, or how much I am bundling up, or how I am walking or sitting or holding objects, while strangers and acquaintances simply see a healthy girl living a healthy life. In some ways, the invisibility of my thunderstorm is protective and allows me to live a sort of double-life that I admittedly capitalize on when and where I can. Sometimes, the invisibility of the havoc of my life makes it the most isolated storm on the weather radar. I am always grateful for people like Amanda who are willing to wiggle into worn-out rainboots and splash right in, with or without advance notice.

          I don't know who to call next. I am lucky that I almost always have a person to call next, but I do not always know who that person is. I find myself, in my most vulnerable moments, trying to identify who might be able to help or who might be willing to just be. I try to remember who has made me promise to reach out to them if I need something. I try to make quick judgments regarding the practical sincerity of those comments. I try to predict whether my falling apart will cause unbearable discomfort for whomever I burden with the request to bear witness to my storm. I try to determine if I will be granted permission to allow my generally happy soul to slip down into somber communion with my generally aching body for just a moment, and whether the person I call will be willing to sink down into that unsheltered place with me or will instead choose to demand false positivity from me.

          Trying to make predictions during high-pain moments drains a lot of my very limited energy supply. The process of deciding who to reach out to next requires a lot of thought. Sometimes, when I really cannot do something alone despite repeated attempts to pull myself together, I am left with no choice but to make a choice. I have found that the more I let go of the ridiculous notion that I can always rely on myself, the more people I find to trust. They show up every time I need them, bringing with them hilarious anecdotes and the best gossip and inappropriate jokes and outstretched arms and their own tragedies weighing heavily on their hearts and hands willing to hold mine and say, "You are not alone. I promise."

          These swooping, staying saints come in the form of professors who create subtle hand signals with you so that you can let them know if you are urgently unwell or need help, and they show up in friendly dogs that wander around campus with slobbery smiles and the warmest of hearts, and they present themselves as cashiers who say, "I hope tomorrow is better," when they hand you a bottle of Tylenol and give you the discount for a membership you do not have. They make themselves known as church members who call "just to check in" even though they saw you merely one day ago because they remember that your Mondays are horrible, and they appear in college students who email you class notes and offer to replicate the lecture in their best professor voice, and they emerge as phlebotomists who walk all over the clinic to find the pink tape to wrap over your punctured vein just so it will match your outfit.

          I don’t know who to call next. As I clutched the phone, clinging onto Amanda's promise, this sentence broke my heart, a stark contrast against the peppy tune of the hold music blasting through the speaker. I was already in tears at this point (if you heard the copay amount, you would be, too), but I knew that if I was forced by Amanda's giving up on me to say this delicate sentence out loud I would lose my composure entirely. Her voice was full of unwavering compassion, which made the process so much easier but also so much more difficult. If Amanda gave up I could not blame the failure on her inability or lack of tenacity. If she gave up, then what? 

          After the problem was finally identified and solved, Amanda and I cry-laughed together about a more minor detail, the fact that November only has thirty days instead of thirty one (in my experience, anything is funny once you are sad enough), and I offered my sincerest thanks before hanging up the phone. I normally try to tone down my unreasonable level of mushiness a bit, because I am keenly aware that the rest of the world does not always exist in my same state of sappy fragility and I try not to be too imposing, but I am pretty sure that I offered Amanda a full sixty seconds of unreserved compliments. After you spend an hour trying to figure out a pharmaceutical shipment, you realize that life really is too short and you might as well say whatever it is that may pull someone through another minute, day, or month.

          Once I hung up, the chatter and horrid hold music that had been pressed up against my ear disappeared, and I noticed that most of my phone battery had vanished in the process as well. I was relieved that Amanda had finally figured out the company's error. I was horrified by the process. I was exasperated from nervous tension. I was thankful to be in a chapel. 

          I wiped a couple of tears away and pulled myself together. I heard muffled voices through the windows and the comforting yet somewhat disconcerting hum that all old buildings share, the burdensome song of aged wood and stone that have borne witness to weddings, memorial services, and teenagers crying during phone calls with their specialty pharmacies. I only had ten minutes before my next meeting. My hour of productivity had turned into an hour of trying to figure out how I would convince Amanda that I was worth just one more try. “I’m an undergrad,” I admitted at one point, beginning to explain why I needed a New Orleans address linked to my account to be permanently removed. What I secretly hoped she heard was, I am young. I am trying. I am learning to be a productive member of society. I can't do this by myself. I wish none of us ever had to wonder if we are worth the time of a pharmaceutical representative, or of God, or of a friend. But there I was, trying to increase my own human value by proving that I was still malleable, reasoning that if she thought that I was still soft enough to be built up or destroyed by the world then she might be a little less likely to abruptly end an unresolved call or to withdraw from the crucial role she was playing during this hour of my life. You may remember my recent post "Very Funny, God" in which I described going through a similar process with a different pharmaceutical company and another complex prescription.

          I don’t know who to call next. Perhaps none of us do. But sometimes we dial the number or send the text or type out the email anyway. Sometimes we do not even know what we are asking for, or we do not know why we need what we need. I think those are some of our bravest moments, even when they feel humiliating or uncomfortable or terrifying or all of the above. "It feels like we are finally meeting," I remember admitting to a friend a few years ago when she opened up to me about a difficult topic after many months of close friendship. I could tell that she was cautiously permitting me to dip my toe into a puddle that had been pooling up for years under her own thunderstorm, and I was thankful for her small but courageous allowance. Everything was different after that. Everything was better. 

          Considering that the dramatic pharmaceutical company phone call took place in a chapel, I felt slightly obligated to address God for a moment before heading out. “Thank you for Amanda,” I prayed, staring into yellow walls that somehow always manage to make me feel like I am being simultaneously stalked by a thunderstorm and chased by brighter days. “Please let good things happen to her.” I scolded myself even before I finished my request. I do not believe in God the fairy godmother (although I am all for God having a wand and a pink satin bow). I tried to think of better theology to accompany my gratitude and well wishes, but then I gave up. I like to think that God does not expect too much of people with tear-stained foundation, five percent phone battery, and runny noses. “Good things for Amanda,” I prayed once again, a little more assertively due to my own acceptance of what a mess I was. I paused and became a bit gentler, embracing the steadiness of my thunderstorm's rain rather than the shock value of its lightning, “And perhaps that she might have a person to call next when the bad things happen anyway.” 

*Name has been changed for privacy, but I did email in compliments to this employee's company using her real name. 

Wednesday, March 14, 2018

11 Ideas for What to Say to Your Chronically Ill Friend

          How often do you encounter someone who is hurting, either in person or on social media or through someone else’s report, and choose not to say anything because you are not sure what to say?

          A confession: I do this every single day, and I am not proud of it. 

          Lately I have found myself trying to be better prepared to respond to a variety of types of pain, including those I am less familiar with. It is okay not to know what to say. I think it is okay to Google what to say when you do not know. I think intentionality is often more important than spontaneity, and I think there is a way to be intentional and thoughtful while remaining genuine and authentic. I think saying something that you know is helpful is more important than being innovative and original. I think these matters are especially important when you are dealing with people whose pain you cannot relate to. I wish we would all be a little more intentional with one another.

          At the same time, I wish we would all be a little more willing to mess up. Sometimes when someone says something that they definitely would not have said upon a bit more thought, I can see them becoming embarrassed (and probably wondering if I am offended) when in reality all I want to say is, “You are so brave. Thank you.” Many people are simply not willing to put themselves in a situation in which they might screw it up. Friends, I cannot even give you a rough estimate of how many times I have said something I regret to a hurting person. The number is too high for me to conceptualize. Still, I believe the greater sin is the times in which I say nothing at all, refusing to take on a delicate conversation, prioritizing my own comfort over a friend’s need for support.

          Before diving into eleven concrete suggestions for what to say to your friends who are chronically ill, all of which are based on real and helpful things friends have said to me during what has admittedly been a pretty brutal year and a half, I also want to stress that illness is only one discussion topic of many. I am so, so, so grateful for conversations I have with people that have nothing to do with my illness at all. I am grateful for people who dream with me about what the future might hold, who share stories with me, and who see me as a whole person and not just a sick body (I have had lots of these conversations just in the past week, and they have been life-giving). It is not wrong to have a conversation with a sick person that does not involve illness at all, and in fact it is often a great blessing.

          In summary: Should you say something that directly addresses illness when you encounter someone who is hurting? In most situations, I think so. Should you be intentional about what you say? When possible, yes. Should you say something even if you are not sure if it is the right thing to say? Please do. Should all conversations with a sick person revolve around illness? Definitely not.

          Below are 11 suggestions for what to say to someone who is sick when you feel it is appropriate/necessary/important to address the suffering. This list is by no means exhaustive or representative, and every chronically ill person is different, therefore it is crucial to keep in mind that different people benefit from hearing different things.

1. "I don't know what to say."

          If there is one overarching life lesson that I have learned during college, it is that sometimes when you are struggling to know what to say, you can simplify this stressful internal dilemma by choosing to pause and name your concern out loud. “I am not sure if you want to be distracted or if you want to talk,” or “I want to help, but I don’t want to come across as condescending” or “I want you to know that I’m here for you, but I am afraid that I might be invading your privacy,” are all great ways to be honest and transparent about your intentions without having to worry about making a mistake, since power is surrendered rather than assumed in these situations. Admitting that you do not know something is empowering and relieving for everyone involved. “I don’t know what to say,” is always okay to say. I sincerely wish everyone would use this phrase more.

2. "I am free [on Thursday from 2 to 4]. How can I help? Would you like company?”

          Chronic illness is lonely. I have begun to recognize this truth as a fact rather than a judgment about my own coping abilities or circle of support. During difficult weeks, having friends to keep me company is often enormously appreciated but not something that I am willing to ask for when I am a walking disaster held together by joints and tendons that I am actively and involuntarily destroying. Sometimes it is literally helpful just to have someone who is willing to sit at a table across from me in the library, or to let me take a nap on their couch while they write a paper, or to invite me over to pet their dog. Company (and especially physical proximity) is so important when people are facing overwhelming circumstances, and it is so easy to offer. It also requires zero skills, and probably a lot less conversation than you might imagine.

3. "This is not your fault."

          When I started having to wear medical masks in certain situations as a component of infection prevention measures, what I did not know was that it would mean that whenever I did not wear the mask, I would blame myself when I came down with another illness. When I do too much one day, I scold myself when I wake up with painful joints the following morning. When I skip a nebulizer treatment because I don’t want to feel shaky, I beat myself up when I find myself struggling to move air in and out later. Lots of friends caught me in this thinking last year and reminded me that I am doing my best, that life is not always a simple game of cause and effect, that I am allowed to make mistakes, and that I cannot control every variable all of the time. I did not need grand moral reasoning or a debate about my agency regarding my illness to move past this destructive game of self-blame, I just needed someone to assertively tell me, "This is not your fault," and then I could move on.

4. “I will see you / I will check in with you [on Thursday]." 

          Last spring, when one of my professors told me at the end of class, “I’ll see you on Thursday, Rachel,” I almost burst into tears (true story). I did not know if I was going to make it to Thursday, and I did not know if I would be able to come to class or stay in New Orleans that long, even though it was less than 48 hours away. Just knowing that someone confidently believed that I could, and expected me to continue functioning as a student, was much appreciated. Similarly, letting someone know that you will check in with them again is a step that I think can be essential, especially if you are reaching out to offer help. When one of my Tulane classmates called me to see how I was doing and offered her help after a brain MRI/insurance company fiasco that left me quite flustered, I refused her kind offer and assured her that I was “hanging in there” (my favorite noncommittal, nondescript phrase). She did not push me, but promised me that she would call again two days later, giving me time to think about what I might need while also assuring me that she was not going to stop caring just because I did not offer her a way to feel helpful. Anything you can say that implies a sick person's presence in the future is typically quite good. 

5. "I'm on your side."

          You do not have to know what exactly it is that your friend is fighting to make this phrase work. Some days I am fighting my immune system, or an infection, or fear, or medical institutions, or doctors, or my insurance company, or professors, or medication side effects, or a world that is not always gentle towards hurting people. This phrase is a good way to cover all of those potential challenges and to remind your friend that they are not alone. When I first announced my decision to transfer, this phrase was a part of one of the first texts I received from a friend from home, and I still cling onto it today.

Hannah is a pro at distraction. I think sisters in general
tend to be great at this, but she is especially skilled.
6. “Would you like to hear my thoughts on [Say Yes to the Dress]?”

          Sometimes hearing all of the gossip is super beneficial to the burdened soul, and sometimes it is unbearably obnoxious when you are facing much more serious questions than what Leslie’s mom said to her sister behind her back about the mermaid cut gown. I think asking this question before diving into something typically considered to be “shallow” or “superficial” goes a long way (although please do not get me started on the sexism inherent in the popular usage of these words). I have answered this question with “Oh yes definitely, thank God, please start from the beginning,” and also with “I’m sorry, I can’t right now.” Trust your friend to let you know whether this type of chatter is appreciated or hated on a moment-by-moment basis.

7. “Would you like to come over for a movie night? I have blankets.” 

          Sometimes even sick people want to get out of their houses/dorm rooms - in my experience and based on hearing the stories of many of my friends with chronic illnesses, we often feel quite trapped, with nowhere else that we are welcome or no spaces willing to accommodate our need for electrical outlets, medication intervals, an accessible freezer, etc. I have been especially grateful for movie nights during my time in college, and even more grateful for people who prepare in advance for my fever chills (I feel like there needs to be a club for those of us who regularly run low-grade evening fevers). Movies are nice because they require minimal effort and allow a sick person to spend quality time with people even when we have very low energy levels.

8. “When you are feeling terrible, what helps?”

          One of my dearest UNC friends asked me this simple question last semester during a brief hiatus between surgeries, and I think it really speaks to the usefulness of asking preemptive questions rather than trying to rack someone’s drugged up brain for practical suggestions while they feel like death (although that is also appreciated.) When asked this question on a relatively good day, I was able to think of concrete things that I could not have thought of on a bad day. For example, I realized in the fall that on the days/weeks in which I was very ill, it helped to schedule meals with my friends. I did not necessarily need anyone to cook for me or to bring me food, but I was unmotivated to eat consistently and was losing weight, struggling to manage my illnesses, and becoming weaker as a result. Committing to meeting someone for lunch or going to the dining hall at a specified time with a friend motivated me to eat and made it impossible for me to skip a meal due to fatigue or a lack of appetite. The point here is that no one necessarily thought that just having someone sitting next to me and eating alongside me would improve my physical health, but it did, and I was grateful for a friend who asked this broad question during a not-horrible time and offered me the opportunity to recognize ways in which I could accept help. 

9. "I believe you."

          Sometimes I hesitate to say this to people because I am afraid that it inadvertently implies that doubt is the norm, but this is definitely a case in which I think the pros outweigh the cons, and is especially important during periods of time in which your friend may be managing a condition that is undiagnosed or not fully medically understood. If your friend has an invisible illness, I guarantee you that they often encounter people who express a range of levels of skepticism, even if all you see from the outside is the support they receive. A simple and well-placed “I believe you” can offer a disproportionate amount of hope and can serve as a way of marking yourself as trustworthy.

10. "Do you feel like you today?"

          Sometimes I do not have “good days” and “bad days.” Sometimes I instead divide my time into “days I feel like me” and “days I do not feel like me.” On Sunday, for example, I felt pretty bad, but I felt like me. My mom made me laugh and a minister helped me awkwardly put my coat on during a hymn and I got to see some of my favorite people and I laughed about reality television on the phone with a friend and I was able to work on several assignments. On the other hand, sometimes I am having a relatively good day with my health, but the medications enabling my good day leave me feeling like a whole different person, usually one who is much more emotional and frail and messy. I think “Do you feel like you today?” is a question full of grace in every way. 

11. "This is so much to have to handle. How are you holding up?"

          People often want to know how my body is doing, and sometimes that question can become a bit objectifying. Asking any sort of question that indicates that you are interested in more than just a person's physiology opens the door to a conversation that can involve illness holistically rather than focusing exclusively on doctor's reports or lab results. I am grateful for all sorts of conversations that indicate that people see me as more than my illness, and this category includes conversations that are about illness but refuse to reduce me to it. My point here is that by asking a more inclusive question, you can directly address illness while often avoiding unintentionally placing the burden of regurgitating a medical report on your sick friend. 

          I hope these suggestions are useful, but they do not have to be used. I think the bottom line is just showing people that you care consistently, intentionally, and thoughtfully, and that can certainly take many more forms than just this brief list. 

          We all have a long ways to go in learning to love one another better. At the same time, I am constantly stunned by how generous and compassionate the people around me are, especially during what has unexpectedly ended up being a difficult season of life for me since I started undergrad. Thank you for being willing to try. You are already succeeding.

Thursday, March 8, 2018

Me, the Mush

          I feel mushy.

          My joints have sort of felt like mush since Sunday night, and I have stretched my energy to its limit, to the point where I have genuinely worried about physically collapsing and my speech sometimes becomes slurred because I am too exhausted to enunciate and my thoughts feel like they must swim through a sea of molasses to turn into sounds. I also feel like I am scrambling to hold onto all of this love that people have poured out to me over the past two years and I do not yet know how to allow that love to lift me up rather than weigh down on me.

          Because of the chronic nature of my illness, even when I am not managing an acute health crisis I am still living in a body that seems way more fragile than the bodies of the people around me. When I woke up on Monday I ran straight to the bathroom and threw up, and given how much I had put myself through on Sunday, I could not even blame my body for its backlash. I gazed into my bloodshot eyes as I washed my hands. The stark paleness of my face took me slightly aback and I mumbled, "I'm sorry," to the mirror, apologizing to myself for demanding so much of someone so weak.

          When I returned to my room I discovered a sweet text from a friend I have not seen in a long time, reading, "Hey Rach! Something is wrong with your account - you wrote a comment that didn't make sense on a post from 2013, and you liked and unliked a 2014 photo three times a few minutes ago. It made me miss you more! What is going on at UNC these days?" Normally social media account issues like this are such a headache, and yet this inconvenient incident turned out to be an opportunity to reconnect with a friend I have been missing quite a bit lately. Somehow everything in my life seems to turn back to love, and it is really wonderful but also sometimes leaves me feeling immensely guilty. How can I ever give back all that I have received? How can I ever say "thank you" sincerely or frequently enough?

          So this is how today is going to go, I thought as I typed out a reply and placed a Zofran on my tongue. A rebellious body? Probably. Unrelated inconveniences? Perhaps. Undeserved love? Almost certainly.

          On Tuesday, after a hectic Sunday and Monday which were packed full of all sorts of activities back-to-back, I decided just to rest. I have never seen my mother as proud of me as she was when I revealed my intentions to take a break to her on Monday night. "That is great!" she said encouragingly, with way more enthusiasm than I had anticipated. This is probably not the reaction most mothers have to their eighteen-year-old daughters saying they have no plans to be productive, I thought, reflecting on all of the familial pressures my peers recount in the couple of minutes before each class starts, sacred moments of commiseration for overworked undergrads. My mom has been gently encouraging me to do less, but I love everything I do and all the people I get to interact with along the way, so I usually fail at this and then call her crying at least once per week because I am too exhausted to do literally anything and am wondering how I am supposed to live my entire life like this.

My sweet cat Brooke, who was not too happy that I was
trying to type out a Spanish literature essay while she was
trying to take a nap on my hand.
          In a miraculous deviation from my normal Tuesday routine, which typically involves capitalizing on my day of no classes by scheduling lots of unnecessary activities, I forced myself to stay in my bed even after I woke up, resisting the urge to go somewhere or do something. My cat and I spent quality time chatting about a variety of our favorite topics, including the futility of the cat-versus-dog debate and how ridiculous our puppy Dante can be, as she sprawled out her paws on my comforter, which, to her delight, was gently heated by the morning sun streaming through my windows. What does one do on a rest day? I asked myself, discontent with the idea of cuddling with my cat for hours on end despite how sweet she is. I decided that rest days should involve watching cycle 10 of America's Next Top Model, playing piano until the searing pain in my wrists becomes too much, and writing a Spanish paper. As the day progressed, I realized that I was likely coming down with an infection, but I did not admit any of the symptoms out loud until my mom directly asked me how I was doing later that evening after noticing my agitation. I nonsensically but genuinely thought that if I did not say anything the infection might take a hint and pack its bags.

         So here I am, once again fighting something that is quite adept at breaking me down (classic, right after I work up the courage to make a celebratory social media post about not having an infection). At its onset, I remembered that there was the possibility that this was just my severe seasonal allergies, especially since my lungs are doing their fun annual thing where they just stop working and I have to revitalize them with medications that make me shaky and dose me with a pinch of panic. I took Benadryl to test my allergy theory, but when this did not improve my symptoms at all, I was pushed further towards the upsetting realization that my most dreaded moment of the semester had arrived.

          As a result, my mom received another teary phone call (my specialty as a daughter) this morning after a doctor's appointment which finally confirmed an infection and left me feeling like we might be starting this cruel cycle all over again. Lots of people have proven themselves to be fully committed to making each day a little less exhausting for me by helping in every way they can, but I seem to be following a sprint-collapse-sprint-collapse pattern rather than adhering to the doctrine of the steady jog. I am thankful for friends and for parents who catch me in their arms without scolding me for my illogical pacing. They are the true saints of this world.

          "Two more days," my friend reminded me this morning, putting her arm around my shoulders when she witnessed tears of exhaustion well up in my eyes. "You can do this, my friend. Two more days and then you can rest for a whole week." I think I am more likely to collapse than to rest. Rest implies some sort of choice. It seems as though I could collapse for the entirety of spring break and still feel fatigued, but I was motivated nevertheless by the imposition of a finish line. I loved her for this sweet reminder, and for helping me to think just a little further ahead than pain allows me to unaided. "And don't schedule anything," she snapped. We laughed as I wiped away a few stray tears.

          I do not take for granted my ability to go to class this week, even though I am sick and my energy is just barely detectable. As some of you may remember from "Flying Home Early," last year I missed the entire week of classes prior to spring break due to laryngitis, severe allergies, infection, and poor airway function. When I realized that I needed to return to North Carolina immediately, I had to email one of my professors, who had the option to kick me out of his course due to my excessive absences and the participatory nature of the class. I was doing well in his course, and wanted desperately to stay enrolled, but I was too sick to allow this to be a deciding factor in my decision to come home. I already had my plane ticket. I was completely at his mercy. I sent an email begging to remain a part of the course but promising my understanding and respect of his decision regardless.

          "I am sorry you are struggling right now," he wrote back quickly, "... rest assured that I will work with you." I cried silent tears of relief reading this email from the New Orleans airport, tiny droplets that soaked into my medical mask and made me cough a bit. Living with a chronic illness means living with so many moments of having to show people how imperfect you are, whether through a humiliating email admitting that your body is failing in every way or curled up with a mask on in an airport terminal with no one sitting closer than five feet away from you. I do not think that having arthritis is a gift in the slightest, but this repetitive experience of having to humble myself and be my most broken in front of people certainly is, even though most of the time I do not appreciate it until long after these embarrassing moments pass. There is nothing more frightening, and there is nothing more human. My body forces me to abandon the illusion that I have it all together. The same condition that traps me frees me to see the very best in people, to view them in their most kind and accommodating and gentle and encouraging moments. Constant physical reminders of my own fragility remind me that my life is a dandelion that could be carried away by the smallest gust of wind at any moment, and so I try to live a little more meaningfully than I might otherwise.

          As you might expect, I have been reflecting quite a bit lately on the past year and all that it has entailed. On February 15th of 2017, I submitted a transfer application to UNC Chapel Hill. One part of this process that I only shared with a few of you, and just briefly mentioned in "Coming Home to Carolina", was that my plan was to spend my entire sophomore year studying maternal health as an exchange student in Amsterdam. I applied to my program, met with study abroad advisers, created an academic plan and timeline, submitted a research proposal, and was accepted. I was looking at Dutch dorm rooms and apartments and my family and I were planning when they would visit me in Europe. In the spring of 2017, I was enrolled in advanced public health courses that I did not even have the prerequisites for in preparation for my year abroad. This grand adventure was financially possible thanks to my Tulane scholarship, and I could not have been more excited. My dear roommate covered our dorm room in index cards with Dutch vocabulary. I became a Duolingo Dutch pro and learned many simple sentences. I scoured the Internet for possible church services that I could attend once I was there. Studying abroad for a full academic year was a dream I had been clinging to since middle school, and I was so excited that it was finally becoming a reality.

          As you can imagine, by mid-February/early March of 2017, when I was hearing terms like "thirty percent airway function" thrown around despite having two or three nebulizer treatments a day, and was constantly on steroids to try to curb the inflammation taking place all over my body, and was receiving "full allergy cocktails" that included literally every antihistamine the student health center had swallowed at once in an attempt to raise my blood oxygen levels, I knew, even before I could confront the reality, that Amsterdam was off the table. I started screening calls from my study abroad program. I stopped worrying about paperwork and legal hurdles. I was too focused on my lungs and the rest of my collapsing body to fool myself into the notion that I would spend a year traipsing around Europe with all of my new Dutch friends. I was angry with myself for ever thinking I was healthy enough to do this, but I did not even have the energy to stay mad about it because I was so consumed with trying to figure out where I would spend my next three years of undergrad, a decision I thought I had made in 2016. I realized that my college experience would likely involve a lot more staring at tile ceilings and breathing slowly through a medical mask than adventuring through countries and continents in impressive academic pursuits.

          This was the hierarchy of my plans for sophomore year: go to the Netherlands, stay at Tulane, and transfer to UNC. Transferring to UNC was my worst-case scenario, my fallback so that I would not end up in a situation in which I would be forced to withdraw from college altogether due to my medical inability to spend another year in New Orleans. Looking back, I am grateful that I had the foresight to think of this back-up option (although I thought of it less than a week before applications were due, which was as inconvenient at it sounds), and even though the whole process of admitting that I might be falling apart in a way that made my life unsalvageable was excruciating, my body was breaking down enough that no one asked me to justify my decision once I revealed in April that I was transferring. A couple of days ago, I was expressing to a Tulane friend whom I adore that I missed our campus, our friendship, and our time together. "Rach," she said tenderly, after a lengthy pause, "You were so sick." I could hear her voice tighten as she became emotional and admitted, "I was so afraid for you." Sometimes I need this reminder that my life in New Orleans was not as perfect as I make it out to be when I am missing the life I was forced to flee. Sometimes misery deserves to be remembered.
I flew home for Easter break just a few days
after announcing that I was transferring to Carolina.
I got home around midnight and sobbed while my
mom hugged me because I did not want to transfer. I
went upstairs to my room and found this sweet gift -
a brand new Carolina pillow, along with a UNC water
bottle and shirt. My parents are the sweetest.

          The combination of thinking a lot and having an infection has made me extra mushy this week. Sometimes I can disguise my mushiness for a few hours, like sticking Jell-O in a freezer, but I always thaw eventually, and then I am just as emotionally squishy and liable to become shapeless at the gentle squeeze of a hand as I was before. Sometimes my mushiness makes me weepy and overly sentimental and gives me this simultaneous short-term and existential awareness of the importance of loving one another and of saying out loud or putting down on paper all of the nice things we think about people. Joint pain, nausea, infections, allergies, and fatigue all increase my base level of mushiness. Of course, this is not always outwardly reflected, especially when I am in significant pain. Like any human, I can be distant and irritable and quiet and snappy when I am not feeling well. And then, of course, I feel horrible about myself, for not being a decent human being and for not matching up my actions with my mushy inner state, even though I am also trying hard not to be too mushy. As you can probably tell, this is an exhausting endeavor.

          When I am trying to feel less mushy, it helps to freak out over reality television, and it helps to lament that Peter was not the Bachelor (the greatest injustice of our time - Peter, if you're reading this, please marry me). It helps to unnecessarily stress out over my course registration, and it helps to go to the mall and spend an hour picking out a single pair of heels. It helps to talk about concrete, trivial, and pointless things that non-mushy people have the privilege of filling some of their time with, and it helps to re-watch the clip of Kim Kardashian losing her earring in the ocean five times in a row. It helps to blast BeyoncĂ© from my car speakers, and to roll the windows down and sing along even on chilly days. It helps to laugh at Ellen videos while I am nebulizing or sticking needles into my stomach, and it helps to giggle over Vine compilations in the library with my friends at 10 p.m. It helps to spend a solid five minutes chatting with a Target cashier about winged eyeliner and it helps to gossip about the British monarchy with strangers in Barnes & Noble.

          Of course, I am perhaps even more grateful for the people who step into a world of mushiness with me, who bravely reveal that they are Jell-O, too. I cling onto these people because they become strongholds I know I can turn to when the whole world is crashing down, people who feel or have felt that same humbling brokenness and unrelenting pain. Over the past two years, I have found myself needing the friendship of other people with chronic illnesses more than ever before. I am only just now discovering that there are elements of this fundamentally flawed state that are innately human enough to encompass people who have had all sorts of tough experiences, not just those who have suffered from physical illnesses. There is much more companionship in the world than I previously imagined. What a beautiful discovery this has been.

          I am a hot mess today, with a burning throat and ears that feel like they are submerged in water and lymph nodes that are swollen and an appointment that overwhelmed me and a prescription for antibiotics that makes me want to cry and classes that I do not feel like attending and a body that just wants to lay down and a soul that is still mourning the loss of Amsterdam and New Orleans and stable health. I could try to toughen up, but I think for now I will just stay mushy. My doctor, my nurse, my professors, my parents, and my friends have all met me where I am today, offering kindness and hugs and meals and validation and rides and memes. I hate existing in the mushy space. It makes me feel so broken and honestly, it sometimes makes me feel worthless, like a weak soul existing within a trash body that just cannot seem to understand that it should be redirecting the energy it devotes to attacking itself to fighting the infections that seem to overtake me so easily. But I cannot be anything else today, so I will try again tomorrow to be a bit sturdier, and hopefully that determination will be enough to guide me through.

          If you have pulled yourself together today and are putting on a brave face for the world, I commend you. And to the crumbly and the mushy and the melting, and the weepy and the grieving and the fearful, and to all of you who have had to come to the tragic realization that at some point your life as you planned it became unsalvageable, I am with you. 

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."