Friday, April 27, 2018

Compassion in Uncertainty: An MRI & an Excellent Friend

          My dear friend Marissa is one of those people who routinely says, "Let me know if you need anything," and means it with her whole heart. For her, this phrase is a practical call to action rather than an empty attempt at consolation. She also happens to be a genius who gives excellent advice and is on her way to becoming an amazing surgeon one day. When I found out several weeks ago that there was another jaw MRI in my future, I briefly pondered who I could ask to accompany me to the hospital, and she was the first person who came to mind. In a great act of generosity, especially considering how boring and time-consuming it is to go with someone to a lengthy medical scan, she eagerly agreed.

Celebrating our last day of classes on the quad!

          We walked together from a coffee shop on our college campus to the children's hospital, crossing a barrier that is minimal in distance but enormous in meaning. Having a friend by my side offered a much-needed piece of consistency between these two worlds that I co-inhabit. In the waiting room, Marissa suggested that we compare our recently completed Taylor Swift brackets, and we half-jokingly argued over songs and albums, a blessed distraction from thinking about my arm, which felt very vulnerable with a hospital bracelet snapped around my wrist and a vein that was about to be sacrificed in the name of IV contrast. It is absolutely impossible to feel like a frail patient when you are debating the musical merit of "I Knew You Were Trouble" with a fellow college student, and so instead I happily felt like a person who was somewhat sick and very much eighteen. Most importantly, I recognized myself as someone who was lucky enough to be sitting next to a friend who was unquestionably okay with both of those things.

          Perhaps this is often what I find myself fundamentally grateful for - friends who express their willingness to be present for the whole of this messy life, marrying my drastically different realities in a way that is awkward and mismatched yet desperately needed. I am grateful for physical therapists who complain about the rose ceremonies on The Bachelor, allowing me to rant about the injustices experienced by Peter and Diggy last season while simultaneously attempting to expand the range of motion in my painful joints. I am grateful for ministers who speak candidly and regularly about illness in the context of religion, bridging the piece of me that loves church with the piece of me that feels endlessly poked and punctured and prodded. I am grateful for classmates who do not bat an eye when I spend the couple of minutes before the lecture starts in tears, because I just left the hospital and am overwhelmed by my own brokenness and have not quite transitioned into a mode of listening and note-taking. I am grateful for doctors who inquire about my class schedule and academic interests, demonstrating that they know that I am more than my list of symptoms and diagnoses. I am grateful for friends who ask, "How are you feeling this week, Rach?" over meals in the dining hall, introducing what often feels like a taboo topic in the setting of a uniquely collegiate space.

          Marissa offered her hand during the IV placement and even came back to the MRI room with me, which was way more generous than I had expected. Because I was transported roughly halfway into the tube, her primary view for an hour consisted of my striped grey socks sticking out of a giant white contraption. She studied for an upcoming exam, using notes free from paper clips or any other metal pieces, while the machine clashed violently around me. The room was horrifically loud, filled with abrupt banging noises that gave voice to the violence I sometimes feel within my bones, and she never once complained.

          Between each set of pictures, when the machine hushed from its intimidating roar to relative silence, Marissa offered kind and genuine words of encouragement. "You can do this, you got this, you're doing great!" she assured me enthusiastically, her voice full of the energy and motivation that I felt like I was lacking entirely. "You're almost done!" she cheerfully reminded me at a particularly uncomfortable point, after a technician placed two stacked blocks in my mouth which forced my jaw open for a set of pictures. When I could hear her, I gave her a thumbs-up. My jaw was packed on all sides by foam and sheets, which pressed down on bothersome earplugs that the technician would not allow me to remove. As a result of all of the material stuffed up against my ears in the name of stabilizing my jaw, I often could not hear what she was saying, but through slight, muffled noises I could recognize that she was speaking. Looking back on it, I probably could have replied verbally, but I was not supposed to move my jaw at all during these intervals and it is an odd sensation to try to speak when you can barely hear and have no concept of how loudly you would need to talk in order to be heard. Even if I did speak, I doubted that I would be able to hear her response. My silent thumbs-up every once in a while, when I found myself capable of picking out her words and soaking up her encouragement, was the best I could think of.

          When we walked out of the children's hospital, I thanked Marissa for accompanying me and for being such a wonderful friend during the entire scan. I talked about feeling the contrast running through my arm, embarking on its chilly course through my circulatory system. "I'm a human being, with veins," I told Marissa in a genuinely baffled tone, as if she were not aware of this obvious reality or did not share it herself. It is humbling, terrifying, and relieving all at once to have the reminder that I am just a compilation of flesh and fragile systems forced upon me. I always leave hospitals hyperaware that I am quite literally just a bunch of mushy pieces and bones wrapped up together.

           Moving away from my self-centered, existential MRI takeaways, I tried to emphasize to Marissa how much her kind words during the scan meant to me, even when the packing around my jaw rendered me unable to understand what she was saying. "Oh, I'm glad! I wasn't sure if you could hear me," she revealed laughingly.

          I laughed too. And then I thought more about her response.

          Marissa was not sure if I could hear her, and yet her uncertainty did not dissuade her from continuing to offer upbeat encouragement. No matter which words I could or could not pick out, her positive tone of voice served as a reminder that she was present. Someone else was in this room with all of the clattering and the clanging and the medical items and the machinery. "Someone else" was not a medical professional assigned to my appointment, but rather a friend, who shared my placement of "All Too Well" as the unequivocal winner of the Taylor Swift bracket and yet could also see the contrast zipping through the short tube of my IV. Having someone in the physical room who could exist in both spaces alongside me was inexplicably comforting.

          When Marissa admitted, "I wasn't sure if you could hear me," I was struck by how deeply compassionate she is, and it occurred to me later on Tuesday night that I want to model my own ways of caring for others in the exact way that she did from several feet away, in a plastic chair with notes about fruit flies in her lap, enclosed for an hour in a boring, clunky MRI room. She was not sure if I could hear her, and yet she persisted in enthusiastic kindness. So much of compassion takes place in spaces of uncertainty, and yet these are the spaces that many of us are the most hesitant to step into. Marissa chose being relentlessly kind over being certain that I was absorbing every single thing she was saying. I hope to do the same.

          Most of the time, I can be confident that my friends hear what I am saying from a sensory standpoint, but sometimes it is hard to know whether or not I am getting through to someone who is hurting. I like to think that we have all at some point stood in front of the locked door of someone's den of tragedy and knocked gently, only to feel like our attempt to enter into their somber space and offer solidarity was ignored, even when they may have genuinely needed the company. Sometimes we need to go away, sometimes we need to break in, and sometimes we need to slip a note under the door. Perhaps most of the time we just need to keep knocking.

          "We're not on the same wavelength," a high school friend once admitted while I was listening dismissively and unresponsively to his attempt to convince me that having to use my wheelchair in between classes was not the end of the world. Through this disarmingly blunt admission, he acknowledged the same distance between hearing and hearing that Marissa was forced to confront on a more practical level. Perhaps I still remember this conversation with my friend because ironically, that statement was the first time during the entire conversation that we were on the same wavelength. I am familiar with the discomfort of reaching out to hurting people in the midst of uncertainty, and yet I also know the discomfort of being the hurting person who will not hear. Sometimes I can feel a friend doing their very best to reach out to me, and I can feel myself not really hearing them, and I know that I am not doing the best thing but cannot convince myself to take a deep breath and listen. Perhaps it is a beautifully human thing that we all exist on both sides of these tense moments.

          I hope that we all choose to be the type of friend that Marissa chose to be to me within the walls of the children's hospital on Tuesday night. I hope that we offer encouragement, compassion, and our simple presence, even when we are not sure if hurting friends can hear us.       

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!