Thursday, October 11, 2018


          On Monday afternoon, I laid in my bed with aching joints. The pain was particularly severe in my fingers, hips, and jaws. I vomited. I moved from my bed to the carpet for a bit because my intestines felt as if they had been put through a meat grinder.

          I felt like meat. 

          I also felt like an intruder on my university's campus, in a world of bright-eyed students who are all seemingly healthy and energetic. I had the eerie sense that I had been one of them just a few days before, but then I felt like I was invading their upbeat space with my limping and fatigue.

          While the onset of this global pain, stiffness, acute nausea, and headache felt sudden to me, I knew it was likely the result of skipping my medications the weekend before, which caused me intermittent problems last week. For example, on Saturday morning, I was at an event in which we had to draw the basic outline of a body, and then answer specific questions that were divided into six categories. The categories represented the head, the heart, each hand, and each foot. I wrote out my answers to the head and the heart, and then I had to stop writing. My hands hurt too much to answer the questions for each hand and each foot. The time for writing was up, and I had spent most of it staring at the little that I had completed and looking around enviously at how full everyone else's page was.

          I scolded myself for being jealous of hands that don't hurt, but the line between jealousy and embarrassment is extraordinarily thin, and so I also found myself instinctively trying to cover up my incomplete sheet with folded hands and a book. I was terrified that someone would see that I had only finished one-third of what was assigned, and would think that I wasn't taking it seriously. I was afraid that perhaps they would think I only cared enough to complete one-third of an activity they designed. I was afraid of being perceived as the nineteen-year-old who thinks she is too good for a task, particularly when quite the opposite was true. I literally was not good enough to write a few more sentences. It was not until that night that I thought about how cruelly appropriate this situation was. I can pull together the head and the heart in the midst of a flare, but the limbs are in jeopardy, and I fear that the failure of the limbs makes people question the head and the heart. 

          On Monday night, during a tearful phone call to my mother, she offered to allow me to dictate to her an essay that was due the next day. I would do the talking, she would do the typing, and I would exit the deal with a completed paper. She is a saint, but I could not take this offer. "My brain doesn't work like that," I insisted, feeling my eyes growing puffier and my cheeks damper, knowing that so much of my process of writing involves reading the sentences over and over again, rearranging them in whatever way is most impactful. For me, being an English major primarily consists of a lot of reading and a lot of staring at words until I figure out how to make them come to life. In the context of literary analysis papers, my brain is no good without my hands.

          My health improved after Monday, and I was progressively feeling less like meat and more like a living, breathing human being. My mom and sister whisked me away from campus on Tuesday night and into a movie theater, which I think gave me some humanity points back. A friend who knew I was struggling called to give an "admittedly dramatic, but listen anyway because this will help both of us" account of her terrible professor. I didn't cancel any plans with friends, even when I didn't feel like hanging out. I felt more and more alive, not only because I was in less pain, but because I was surrounded by people who acknowledged and lived into my wholeness when I could not.

          The stormy weather today, however, did me no favors. On my walk home, wind forced me to clutch my umbrella so tightly with my sore, arthritic fingers that I could have burst into tears at any moment. My hips, knees, and ankles felt like they might execute a coordinated attack to bring me crashing down into the concrete rivers. My jaw and elbows felt puffy. When I finally got back to my room, I peeled off wet clothing, opted for pajamas, and crawled under my heated blanket as quickly as I could. Heat is not a cure, but it has helped. I will take what I can get.

The only thing better than a heated blanket is a heated blanket plus this cutie!

          My hands and feet cannot seem to keep up with my head and heart. I've spent more time that I would like today trying to synchronize all the parts of me. It takes more effort than I can describe. Tonight, I am grateful for people who trust my head and my heart, even when my hands and feet are failing. I am grateful for the team that works to try to get my body to function normally, so that I can live into all that I think and love in practical ways. I am grateful for my mom, who offered to step in in a tangible manner when the dissonance between my brain and hands seemed irresolvable.

          I am unsure whether or not anyone noticed how incomplete my Saturday morning answers were, floating in isolation on a mostly blank sheet. I hope that if they did, they decided to trust my intentions. I hope I remember how much I rely on this grace. I hope I extend it to others. 

Thursday, September 13, 2018

Choosing Selves

          An increased dose of methotrexate since a very painful and debilitating flare-up during July seems to be keeping my autoimmune symptoms at bay. For the most part, I am able to do what I want, as far as walking and writing and feeling like a normal college student. It is wonderful. I am so grateful, and I am careful not to allow myself to forget how lucky I am.

Humira + increased methotrexate + prednisone
= a vacation that I could enjoy!
Pictured: My sister Hannah & me on a boat in Russia

          I am also not oblivious to the fact that I am healthier during the fourth week of school than I have been during any previous semester of college. My first semester, I already had strep, my second semester, I was still recovering from a tonsillectomy, my third semester I had an infection, and my fourth semester I was still recovering from sinus surgery and struggling with joint pain. To be fair, I did start this fall semester on antibiotics for an infection and had to go to urgent care for an ear problem stemming from July's jaw surgery, on top of all of my usual appointments, but I still feel like I am doing well overall.

Shout out to Spencer for surprising me
with the sweetest stuffed animal corgi
after my jaw surgery! Meet Windsor!

          I do, however, struggle to tolerate my increased methotrexate dose. It is not uncommon for me to spend the middle of the night and early hours of the morning vomiting, lying on the rug on my bathroom floor because there is no point in getting in and out of bed so frequently, tired eyes blinking heavily as I stare into the white ceiling. I pray to hold down the Zofran or fall asleep or both. I am very religious during these hours. It sounds miserable, and it sort of is, but thanks to the improvements in my joints, it feels worth it to me. Sometimes I am productive during these hours, and I write academic papers and draft emails and jot down to-do lists. Early this morning, I was sick despite being five days past my most recent injection, and decided that it was the perfect time to get started on a book I have been intending to read for quite a while. Sometimes I am not so productive, and I wonder how much pain and physical weakness my body can tolerate before it disintegrates.

          When I was finally feeling better a few days after last week's dose, I remarked to my dad that it would only be a few days before I was sick from the medication again. "Don't let that stop you from enjoying these days, though," my dad wisely reminded me. When I am healthy, I should be living in the present. When I am sick, I always try to live in the future. Or on a floating blanket of sunflowers, woven together with thin vines, overlooking a quiet meadow with a disproportionate number of butterflies present. These nights of dehydration, vomiting, and pain really have me imagining some strange scenarios.

          After a few days of feeling so "me," it was hard to convince myself to draw up the yellow toxin into the syringe on Saturday night, knowing that Sunday and Monday (and potentially Tuesday) would have plenty of side effects to throw at me, from unrelenting fatigue to nausea to always feeling either too hot or too cold. On Sunday morning, it took me fifteen minutes just to shampoo my hair and rinse it out. I kept getting so tired that I found myself leaning on the shower wall with my eyes closed, and then I would suddenly jolt awake and think, What am I doing? Why can't I do this?

          Too many strands of my hair fall out, and I am always nervous that when I look in the mirror after stepping out of the shower, the thinning will be more noticeable than the day before. It is disappointing when I can tell a difference, but I know it is more obvious to me than to anyone else, and I definitely do not have the energy to be too upset about it. I dread going in for haircuts, because I know the stylist will remark, "Your hair is so thin," repeatedly until finally I explain my medication and illness while holding back tears. I found a new hair stylist in July, though, and she was thrilled by the opportunities afforded by thin hair, and was so positive and encouraging about it that I never even had to bring up the reason that it is this way (I have thin hair naturally, but the medication is what pushes it over the edge). We talked about "embracing my curls" and about the benefits of thin hair, and I left feeling whole, which is not how I normally leave any sort of scheduled appointment.

          Despite challenging side effects that come along with methotrexate, I have been surprised a few times by how tolerable the days after these doses have been, and by how well I can typically cover up even the worst days. Throughout the summer, as we have gradually bumped the medication up, I have found plenty of ways to distract myself from the side effects. Sometimes I play dominoes with one of my favorite couples from church, and sometimes I go for walks, and sometimes I do homework with friends, and sometimes I go to the movies. Sometimes I take naps, and sometimes I read, and sometimes I chat with friends, and sometimes I hang out with my mom at home. I do not want to waste roughly two out of my seven days each week. That is a lot of life! I try to make the best of it, which is very much possible some days and completely impossible others. It is never as predictable as I would like it to be. I do my best to stick to my routines and keep up with the things that make life worth living, just like any other day, with a bit of extra self-forgiveness and a steady supply of Zofran sprinkled in for good measure.

          That said, I do not want to give the impression that I am a joy to be around after these injections (I'm not), only that I can still recognize and appreciate real joy in the midst of them. Perhaps knowing that I am not a joy to be around makes me even more grateful for the friends who show up anyway. Methotrexate causes me sound sensitivity/irritability (if you experience this too, please contact me), which is a side effect that is definitely not listed anywhere that I have seen, but it is so out of character for me and occurs only during the first 24-36 hours after the shot, so I am certain that it is from the methotrexate. There are hours in which if anyone talks to me I want to cry, and the very last thing I want to do is talk back, because that would be like filling my own brain with excruciating sound. My mom crumpled a chip bag a few weeks ago and I lost my mind and wept.

          On Sunday, a friend from church who saw me struggling through the service placed a hand on my shoulder and extended an invitation to her house. My mom gave me the best hugs and was patient with me when I did not feel like holding a conversation. I spent a cloudy hour on Monday afternoon lying on a bench outside of my church, using my backpack as a pillow. I stared up at a stained glass window, reading a book, falling asleep every few minutes despite my best attempts to control the fatigue. If one must suffer through these sorts of things, one might as well do it outdoors. My eyelids would close lightly, fluttering open when cars drove by. The sound of their stopping and starting reminded me to remain within awareness, a function of a world that was subtly including me in its gentle busyness. Despite the layer of clouds, I could feel the sun warming my skin, and I wondered if all of the methotrexate might evaporate from my body if I stayed for long enough. The sun proved to be no cure, but it felt like presence, which, ironically, is most of what I try to learn on the other side of the stained glass.

          I wish I could have seven healthy days in a week. Is that greedy? Six or five or four good days are enough for me right now. Is that bar too low? I do not have any answers. All I know is how disappointing July was. I have not forgotten yet. Physical pain is oddly impermanent in so many ways, and we thank God for that. Still, July hovers over me, reminding me that my immune system is still actively intent on destroying me whenever possible. While it is difficult to recall the magnitude of the pain itself, I remember the tears I cried when I summoned the courage simply to extend a stiff arm out of my heated blanket, so that I could pick up my phone and email in my absences. My fingers ached as I typed out words about aching. All I wanted to do was sleep, and yet sleep was the last thing I wanted, and both of these realities coexisted in a frustrating contract that I had no understanding of. My body was so stiff. It is truly not a feeling that can be imagined if you have not experienced this level of widespread discomfort firsthand. My joints are not perfect now, but they are not nearly as stiff. My fingers ache fairly often and we have yet to control the swelling in my jaw, but other than that my joints appear to be doing well.

          I seem to have traded being stiff for being nauseous and horribly tired. It feels like the right decision overall, but when I am tracing the veins in my thigh trying to pick where to insert the toxin on Saturday nights, and when I am feeling like the earth has attempted to eat me alive on Sundays, I do not feel so confident. My friends have assured me that over time, I will build up more of a tolerance and will have fewer, less intense side effects. I am anxiously awaiting this turn of the tide.

          It is so hard to know whether I am doing well or poorly when the methotrexate makes me sick. If I say that I am doing well, I ignore side effects that are ravaging my body, the way my mouth tastes like metal, how I feel so weak overall that I genuinely wonder if methotrexate has replaced my blood and is coursing through my body with sheer terror and destruction in mind. I ignore how difficult it is to keep my head up instead of resting it in my hand and how much my eyes want to close and how much I want to quit this treatment. If I say that I am doing poorly, I give the impression that I am unhappy, leaving out all of the pieces of joy that are such a crucial part of the narrative. Does that leave me the option of existing in an in-between state, feeling "okay"? "Okay" seems so distant and inaccurate, yet I admit that I sometimes choose it for convenience. Honestly, though, I find no home in the in-between space. Perhaps what makes this situation so difficult is that I do not feel like any of the good parts cancel out any of the bad parts, or vice versa. They just both exist, and somehow I am supposed to cope with all of it at once, overwhelmed with both disappointment in my body and gratitude for all of the friends who weather this disappointment with me. It is a rough few days within a life I adore.

          Illness and treatments have forced to me to reevaluate my definition of a good day. I have had to learn how to have the best days in the midst of feeling like my body is falling apart. Aside from the very worst days, I do not usually factor how I am feeling health-wise into my determination of how well the day has gone. A few days ago, I felt that little twinge of sadness that comes when you have to turn off your car because you have arrived at your destination, but you want the music you are listening to to continue. I reluctantly got out of the car and walked into the coffee shop, where I was delighted to find that the exact same album was playing. No toxin or treatment or side effect can ruin a happy little moment like that. How could I call that a bad day?

Shout out to Alana for helping me hang this tapestry in my
bedroom at my apartment! I don't know how people acquire
skills like this but I am very grateful that they do!

          My Sunday morning self is always ready to quit methotrexate for good. My Saturday morning self always knows that it is worth hanging in there. So which self do I believe? The self closer to the source of suffering, or the self benefitting from the suffering? I made the decision a couple of months ago to believe my Saturday self. It does not stop me from sending texts to friends that say, "I can't do this again in seven days," or "I do not feel like a human being," but it does convince me to push the needle through my skin the next week, knowing that while this might not be the best thing ever, it represents my best effort at wellness right now. The Rachel who will cry at the crumpling noise of a bag of chips, who is so tired that she repeatedly falls asleep in the shower, who has absolutely nothing left in her stomach, and who feels like she is simultaneously burning and freezing cannot be trusted to make long-term medical decisions.

          But we all choose selves, don't we? Surely this is not unique to my illness or treatment plan. We choose which version of ourselves to trust, which to rely on when we are caught in the middle or when we feel like nothing is certain. We choose which feeling to act on, which reality to allow to narrate our lives. We all choose selves. Perhaps it is not such a bad thing that methotrexate has forced me to be more conscious of this process. As dramatic-sick-person as it sounds, I do wake up each day trying to figure out how I will make it as good as possible, especially when I am not feeling well. I try to weigh my decisions and choices carefully without letting the prospect of being wrong consume me, which is easier said than done. I attempt to connect with the rest of the world, even when it feels like almost none of my friends in physical proximity have any idea what indefinite weekly methotrexate injections do to the body and the soul. The self I choose tomorrow may not be the same, but I am content with today's choice.

Sunday, August 19, 2018

Unqualified Thoughts on Divine Love

          I have been in quite a lot of churches over the past three weeks, so when a fever prevented my church attendance a week ago today, I had many recent memories of gorgeous sanctuaries to soothe my mind while my body continued its clumsy attempt to fight back against an infection while immunosuppressed. I considered the Rock Church in Finland, the Alexander Nevsky Cathedral in Estonia, and the Church on the Spilled Blood in Russia, among at least a dozen others. There will always be more churches to see, therefore I always want to go in just one more. I love every church I meet.

Helsinki Cathedral

          Because of the enormous cellular battle taking place within my body as the infection took its course, I remained in my bed for the most part, shivering under multiple blankets. Countless flares and infections over the course of years have taught me that if I position my white heated blanket correctly against the backdrop of the light blue walls of my bedroom at home, it sort of looks like I am in a cloud from my viewpoint tucked away under electric heat. Well, to say that it looks like I am in the sky might be a stretch. But it is good enough for me. Perhaps pain makes me a bit more willing to sink into imagination sometimes. I would like to think that I am elsewhere.

          Sometimes when I feel particularly sick and weak I imagine gentle hands lifting up my bed, in its cloudlike state, with me wrapped up in it. My hurting body makes me feel simultaneously like vapor and stones, but this never seems to bother the cloud. I then feel the whole bed lightly placed into one of these gorgeous sanctuaries that I have been offered the privilege of entering into. The powerful pipes of an organ that has weathered everything from wars to weddings fill my body with melodies so loud that they rattle out all that is hurting in me and fill the empty space with hymns. The saints depicted in the paintings, stained glass, and mosaics slowly reach out a hand, stretching through centuries-old stillness to offer comfort and peace and everything that illness steals. 

Cathedral of St. Peter and St. Paul
St. Petersburg, Russia

          In visiting all of these churches, I have found being in sanctuaries in the absence of scheduled services to be unexpectedly refreshing. I flared horribly during the month of July, and was accompanied by the pervasive yet unspecific sense that I was disappointing God. It gnawed at me even before I could name it and lingered past my understanding that it was unhelpful. Luckily, being in buildings in which so many people have worshipped over centuries reminded me how egotistical and ridiculous this notion was.

          It became clear to me from the moment I became ill at the age of eleven that whatever was ripping my body apart was going to drastically alter my experience of church. I sobbed while everyone greeted me after the service in which I came forward to be baptized, and while some people assumed that I was just really feeling the Spirit, I was actually in excruciating pain thanks to an inflamed elbow and the beginning of my autoimmune disease. "You have rivers, and we want valleys," the pediatric rheumatologist who diagnosed me explained, describing the fluid he felt in my elbows. The rivers in my elbow made me cry as I wrapped my aching arms around people I barely knew, and convinced my congregation that I was an ultra-religious eleven-year-old. It was not ideal, but perhaps this misconception became a self-fulfilling prophecy, because now I try to go into every church I pass by, perhaps hoping that I will find God somewhere along the way, perhaps appreciating the architecture, or perhaps admiring all the people I find there, who worship earnestly and humbly. I want to be like them when I grow up.

At the top of St. Olaf's Church
Tallinn, Estonia

          I find my religion to have quite high expectations for sick people. Pain is supposed to bring me nearer to God and others, but usually it just makes me want to rip my hair out and melt into the tiles of my bathroom floor. My repeated failure at fitting into the narrative of the sick person who uses her pain to glorify God (what does that even mean?) has led me to believe that a theology that insists that God uses our pain and suffering to improve us as people, or even to enable us to reach out to others, cheapens the love of God, making it a means to an end rather than an end itself. I believe that God loves me even when pain worsens me. I don't really believe that. I try to. I am trying to spend fewer hours accompanied by the assumption that God considers me a failed human. It does not seem like a good use of time.

          No wonder I am still in pain, I sometimes think when I catch myself being unsympathetic toward the pain of another, Clearly I have learned nothing. Intellectually, I do not believe that God is waiting for me to smarten up. But in the moment, there is some comfort in thinking that perhaps I am doing something wrong, perhaps the equation is simple, perhaps I can figure out how to break out of my cycle of flares if I just become spiritual enough. Sometimes it is harder to remember that God is just present, and there is no equation, and no amount of praying or going to church functions as a cure, but I am attempting to operate on the premise that what is harder will be better in the long run.

          I do not have solutions for the expectations placed on sick people by Christian communities, but I do wish that we explained divine love to one another in a way that emphasizes depth rather than solely relying on repetition to drill in such a delicate and gentle concept. I wish we recognized that "God loves you" can also be worded as, "God is not disappointed in you when you disappoint yourself," or "God is not torturing you into wisdom." Defining the love we often speak casually and vaguely about is as important as calling it "love." When we leave love murky, nothing else matches up. 
          The uncomfortable part of defining this love is that it forces us to reconsider, and in many instances, outright reject, our social systems and norms. We cannot claim that God loves the sick just as much as the healthy when we only build our churches for the latter. We turn our eyes from the cruelties of physical suffering when the only health-related narratives we offer are those of healed lepers, leaving everyone to wonder what the unhealed have done so terribly wrong to be excluded from this mercy. We celebrate and commend those who overexert themselves and roll our eyes at those who keep the Sabbath. We insist that God loves us because we exist rather than as a result of our productivity, yet we accept the status quo of capitalism and praise the work people do rather than who they are.

          On Thursday morning, before I moved into my apartment to start my junior year of college, a dear friend of mine from church, Whit, sent me the sweetest text, which read (in part), "You are loved and lovable without doing a thing." Her kindness provided a perfect moment to pause and remember that productivity and love are separate entities. My heart fills with gratitude when I think about Whit and so many others who are patiently teaching me, at the most fundamental yet profound level, that divine love is not a capitalistic exchange.

Living my best life at "ABBA the Museum"
in Stockholm! Post-flare, post-surgery, pre-infection.
Thankful for Whit and all of my other friends who
understand what an important moment this was for me.
A truly religious experience, I'd say.

          We always hear that people turn to religion for comfort, and I think there is some truth to that. After all, I transform into an adamant advocate for escapist theology each time my pain exceeds past its typical daily fluctuation, and I cringe when I hear theologies of survival criticized in the name of proper doctrine. Still, I find our tendency to assume that hurting people view religion as a source of comfort risky, because it prevents us from considering that perhaps we are not quite as good at responding to that pain as we might think. During my lowest points with illness, my friends have taught me that so much of loving people is living in tension with them. Disappointingly, so much of church seems to be breaking tension. When we permit admissions of suffering only when they can be followed by a prayer, to discard our discomfort and relieve ourselves of the responsibility to live in tension, we attempt to confine hurt to an area we can control, leaving those who are suffering to fend for themselves until the next designated opportunity to voice their reality. 

          I have always been terrible at praying. My prayer last Sunday night was, "I am so over this," because it seems that my body only teases me with breaks from the intolerability of my illness before shoving my head underwater again. It was not that there was nothing to be grateful for on Sunday night; in fact, there was too much to be grateful for. I was simply exhausted. I am all for prayer, but I am never for silencing suffering people. I am all for being honest with God, even when it makes me feel unsophisticated. Especially when it makes me feel unsophisticated. I pray the Hail Mary, too, but not to relieve the tension. I think God can handle the tension of my frustration and the fluctuating permanence of my pain.

          Perhaps love is living in the tension. That is what I see in Jesus weeping over Lazarus and dying on a cross. That is what I see in my friends who show up when nothing is going right with zero advice or attempts at comfort but loads of empathy and hugs. That is what I see in the artists who depicted suffering on the walls of sanctuaries they painted so many centuries ago, pain that is permanently unrelieved, a chord that is never resolved, asking churchgoers to literally exist in the center of depictions of discomfort every time they worship.

          I love the Church with my whole heart, way more than I would like to. I love the intricacy of Russian Orthodox iconostases and the simplicity of Mennonite sanctuaries. I love chaplains and ministers and nuns. I love all of the ways the Church includes and invites hurting people into sacred spaces. I worry that because we view ourselves as comforting, we may miss ways in which we exclude the hurting. I hope that by drawing ourselves closer to the pain of others, we may draw one another nearer to God. 

          Perhaps religion can sometimes function not as an escape, but as the opposite. Perhaps religion is permission to live in the tension. Perhaps, at least from the perspective I have adopted, which is full of flaws, religion is permission to find love there. To find God there.

          A small note: This post reflects and addresses only my limited personal experience with my own belief system and religious communities, and is not a commentary on the broad, widespread harm that is and has been done by the Church.

Wednesday, July 18, 2018

Miracle Workers

          The last few weeks have been painful.

Flaring is no fun, but the flight to San
Francisco was beautiful!
          I went into a flare right during/after my return from Seattle, and it hit me hard. I know how to explain all of the chaos that pain causes, but I have no idea how to explain pain itself. It just hurts. In my English classes, we sometimes discuss the idea of pain as the absence of language. There is no way to let other people in or to get out. Here is what I can tell you: I slept for 17 hours per day for three days in a row. I was unable to go to work. I cried at the dinner table. It was horrible. 

          Thankfully, I went to my weekly physical therapy appointment for my jaw a few days after the flare started. My physical therapist noticed immediately how terrible I looked, and instead of asking me, "How have you been this week?" like she normally does, she went straight to, "Oh dear, tell me what's going on." I cried and cried as I described the flare, and she listened empathically the entire time, her hand rested gently on my aching knee, without saying a word.

          At the end of my rambling and repeated, frantic confessions of, "I have no idea what to do," she convinced me to email my rheumatologist. My rheumatologist, who is attentive and responsive and smart and everything you want a rheumatologist to be, emailed me back just a couple of hours later and sent in an urgent, fast-acting prescription for me, which I started just a few hours after her email. By the next day, I was already starting to feel a bit better. 

          When I first started jaw physical therapy, I thought I was only going to between four and six appointments total. I brought a different friend to each of them and did not make much of an effort to get to know my physical therapist or the technicians (to be fair, I was also having needles stuck into my face repeatedly, so I was not in top friend-making mode). Once I realized that these appointments were going to be happening weekly for an indefinite amount of time, I ditched my strategy of having to organize someone to go with me every week (too exhausting) and decided that I was going to have to be a little friendlier. 

          Now that I have become a bit more invested in not being miserable at the appointments, considering that they are a weekly part of my life, I feel so grateful for my physical therapist. She has quickly become one of my favorite members of my medical team. She talks to me about Paris and New York City and Seattle to distract me from discomfort. She invites me to imagine all that I might be able to see and do in the world, even with arthritis. She listens carefully and never rushes or interrupts me, even when I am losing it a bit, and that is rare for a medical professional. She is gentle even when her therapies are invasive and painful. She is kind and empathic and she communicates effectively with the rest of my medical team (at this point, my jaw has a sub-team within my larger medical team, which is as ridiculous as it sounds). 

          I am equally grateful for my rheumatologist, who acted quickly after I emailed her, and who has been following up with me ever since. She communicated with my jaw surgeon and helped me with a medication plan just in case things get worse while I travel over the next couple of weeks. 

          At an appointment on Monday, I confessed to my jaw surgeon that I had been hoping to have my October 2017 surgery repeated before I spend two weeks abroad, but that I knew that it was too late now. He truly listened as I explained how much I wanted to chew without pain, enjoy the trip, etc., and rather than brushing these things off as minor inconveniences or viewing my concerns as unimportant, he asked, "What about Thursday?" We talked about the risks of having a surgery exactly one week before getting on a plane. It does not feel great to be at a point where that sounds like a risk worth taking, but here I am. I have no idea how I got here, but I am grateful for miracle workers. Within the span of just a few hours, I had an x-ray of my jaw, a consultation, a surgery scheduled, impressions of my teeth made, a chat with a financial counselor, approval from my insurance company, a health history taken, a consent form signed, vitals taken, and a pre-op appointment in a different part of the hospital. 

          So there is a third incredible member of my medical team. I am grateful for my jaw surgeon for being willing to make something that seemed impossible happen in a matter of days. 

          Perhaps most importantly, I am grateful for my friends. When I told them I was having unexpected but long hoped-for surgery, they immediately wrapped me up in words of encouragement and in positive vibes and in love and in the promise of their presence. Without missing a beat, they jumped to, "Okay, we're ready. How can we help?" They automatically began inquiring about my smoothie orders and asking which days they could come over. There is exactly one week between my surgery and my flight to go out of the country for a couple of weeks, and the few friends I have told about the surgery have offered company and rides and promises to check in with me, even after I insisted that the operation is minor. One friend promised to talk about nuns with me, while another suggested driving me around with the windows rolled down if I feel stuck at home. One suggested a spontaneous trip to Target, where we bought face masks in preparation for a bit of post-op pampering. My friends teach me so much about what it means to draw people closer when they are suffering rather than shut them out. If a miracle is something inexplicable and divine, their reactions prove that they are miracle workers. And local friends, if you're looking for anyone to go get manicures/eat ice cream/watch Netflix/cry over minor problems with over the next week, I'm your girl. 

          Just getting booked for this surgery was a miracle, and because I have had it before, it does not seem justified to feel nervous. I was totally in my "yes, let's go, let's get it done, hooray" mode on Monday, but I have found myself more anxious last night and today, I think in part because it feels like everything is happening so quickly and I have not had adequate time to digest that I have to go through the whole hospital/anesthesia process tomorrow. Today I feel fearful and hopeful. I feel excited and desperate. I feel worried and empowered. I feel relieved and nervous. 

A post shared by Rachel Sauls (@rachelksauls) on

          Maybe it is okay to be enormously grateful, overwhelmed by the kindness of my medical team and friends, and a bit scared all at once. I am writing my surgeon a thank you note in advance since I am worried that I will forget to pause and truly express my gratitude when he comes in to check on me before the surgery. I do not feel like I will ever be able to return all of the kindness that people have so freely offered me. It seems like the least I can do is make sure to say "thank you."

          Despite all of this chaos, I really am doing my best to recognize and be involved in Juvenile Arthritis Awareness Month. This Sunday at 9 p.m. EST, I'll be going live on Facebook (send me a friend request!) and Instagram (rachelksauls) simultaneously with my best friend Faith to do my Humira and methotrexate injections. Weekly injections are part of life for a lot of JA kids, so I hope that you will consider tuning in to see what this process is like and to ask any questions you might have about injections or JA in general! I will also give a little update on jaw surgery recovery.

          If any of you have suggestions for reducing pre-operative anxiety, I would very much appreciate them. Also, if you have ideas about what I can do to entertain/calm myself in the two hours between arriving at the hospital and being fully anesthetized, I would appreciate those as well! Many thanks to all of you. It is exciting to think that the next time I post on this blog I may be in much less pain. It feels worth the risk.  

Tuesday, July 3, 2018

What Arthritis Looks Like

          Arthritis can look like all sorts of things. It can look like a friend of mine who struggled to breathe as an infant. It can look like a ninety-five-year-old with no cartilage left. In light of Juvenile Arthritis Awareness Month, the examples below describe some of the ways arthritis has looked for me over the past few days, in the midst of travel, work, and a flare. This is not what arthritis looks like for everyone, but I hope it serves as a reminder that this illness is way more expansive than our predominant cultural narrative of it. 

          Arthritis looks like a teenager lying in the fetal position with tears in her eyes for three hours on the scratchy, gray carpet of the San Francisco airport. 

If one is going to be miserable in an airport, one might as well
be miserable while watching planes take off.

          Arthritis looks like mindlessly watching "Say Yes to the Dress" and cringing, because even just watching the excruciatingly painful movements required to try on dresses hurts.  

          Arthritis looks like slowly attempting to move each joint one by one before getting out of bed in order to reduce the ridiculous amount of morning stiffness despite spending the entire night under a heated blanket. 

          Arthritis looks like an undergrad who appears to be perfectly healthy injecting a syringe full of toxic yellow liquid into her stomach, which will undoubtedly make her nauseous and tired, before heading into work. 

          Arthritis looks like a vegan who loves to cook preparing a fresh, delicious lunch, only to eat a couple of bites before placing the rest in Tupperware and blending a smoothie instead because her jaw hurts too badly.  

          Arthritis looks like an intern lying in her bed in her professional clothes, with her backpack on her shoulders and tears sliding off her cheeks, because getting ready for the day took up 100% of her energy and now she is unable to actually go to work. 

          Arthritis looks like thrashing uncomfortably in a half-asleep state, unable to find a position that does not produce intolerable pain. 

Thankfully, arthritis can also look like happier moments,
such as going out for ice cream with my sister before a
jaw physical therapy appointment a few weeks ago,
to balance some of the harsher realities :)

          Arthritis looks like standing shakily in the back of a plane only one hour into a five hour flight, begging the flight attendant for ice to put on swollen joints and intentionally using the phrase "musculoskeletal disease" because having to explain in the midst of a flare that kids get arthritis, too, would require too much energy.

          Arthritis looks like staring blankly at the draft of a time-sensitive email for forty-five minutes, because joint pain can make concentrating on a simple task nearly impossible. 

          Arthritis looks like a daughter texting her mom, "I am so frustrated" in reference to her flare and fatigue, and then screening her mom's subsequent phone call because she does not have the energy to speak. 

          Arthritis looks like a hastily scribbled note of doctors that need to be called, appointments that need to be made, and questions that need to be asked. 

          Arthritis looks like a sick person writing publicly about awful days, not because it is rewarding or cathartic in any way, but because she needs better resources, more treatment options, an expansion of current medical research, progressive healthcare legislation, an improved understanding of autoimmune illness, and a cure. 

Wednesday, June 27, 2018

My People

          I am going to see my people tomorrow!

          In just a few hours, I will be flying to Seattle for my fourth National Juvenile Arthritis Conference, an annual meeting held in two different locations every summer by the Arthritis Foundation. I am so excited! 

          Over the past few months, I have found myself flat-out exhausted after extensive interaction with healthy people. There are no words I have ever spoken or written that have made me think that I could help someone living without a chronic illness to "get it." I admire the friends who try anyway, because the trying truly does help. Still, there is nothing like sitting in a room full of people who experience the same things you do, who cry the same tears in their surgeon's office and laugh the same laugh when the needle pops off their syringe, who have the same life-sucking conversations with pharmaceutical companies and sweet chats with nurses who go above and beyond. I am grateful for a community of people who require no explanation, who pass no judgment, who hide no harsh realities. It is the only time of the year in which I do not feel innately problematic. I look across the mass of people and see hundreds of kids with arthritis. Without even thinking, I love them all more than I could ever explain. It is crystal clear to me that each one of them is whole and complete and wonderful and capable and hilarious and hardworking and clever and kind. If I can look at everyone else with such admiration and compassion, I reason that perhaps it would not be so ridiculous to extend a bit of that to myself during the many moments in which I feel like having arthritis makes me a bad person.  

          While my friends with arthritis play irreplaceable roles in my life, I am thankful for all of my local friends who have become "my people," even when they do not understand what it is like to live with juvenile arthritis or with a chronic illness. Three separate times over the past couple of weeks, people have directly asked me if I might allow them to listen. One friend even pulled up a chair next to me when I had clearly been crying, and did not seem at all phased by the absurd amount of tissues it took for me to get through the conversation. When I promised her that I would pull it together, her immediate response was, "You don't have to." The kindness of my friends has caused me to reflect on how infrequently I ask to listen, and how often I try to steer conversations with my own questions and assumptions instead of being fully open to receiving whatever needs to be received. I am grateful not only for how much my friends care for me, but also for all that they teach me about compassion and about how to better love others. Being someone's "person," even just for five minutes, is much more difficult when you do not understand what a person is going through than when you do, and the bravery that it takes for my local, mostly healthy friends to step into this area of discomfort and of the unknown is not lost on me. I am thankful for their bravery, for their willingness to take risks, for their presence, and for their persistence.

My amazing friend Georgia, who I had the pleasure of hanging out with
today! Every conversation we have is so healing to my soul, and I am
grateful for her gentle passion and her magical ability to understand
what I am trying to say about my experience of chronic illness even
when it is totally disorganized in my own head. She is on her way to
becoming a fabulous nurse, and I am so lucky to call her my friend!
         Last year, on the evening I returned from the conference, I went out for late-night ice cream downtown with a beloved friend from home. This friend deserves all my gratitude, because she allowed me to talk and talk and talk about all of the wonderful things I experienced at the conference. I went on for what felt like forever about all of the knowledge I soaked in during my time in Indianapolis, and about how deeply human I felt. I was empowered in a way I had not been in years. I was slipping out of the notion that everything that happened to me in terms of my health was my own fault. I was blessed with a newfound awareness that I was not alone in any of the struggles I was facing. I was speaking about my illness openly and confidently, and I was talking about parts of it that I had never before discussed with "healthy friends." For the first time since my diagnosis, I did not feel an ounce of embarrassment while talking about my disease. My friend expressed how different things seemed, and we were both so grateful for that difference. 

A lovely dinner with my sister, Hannah, before she takes
me to the airport in the morning.
          While I write a public blog centered around my illness, I hope to never present the false narrative that I am consistently unashamed of my diagnosis or handling it with bravery and resilience. There is nothing wrong with being unashamed, brave, or resilient, but that is just not who I am at this point in my life. I hate that my illness makes life physically painful. I hate that my illness makes people uncomfortable around me or unsure of how to approach me. I hate that my illness makes creating plans with me complicated for other people. I hate all of these things, and if I could wish or pray arthritis away, I would do it in a heartbeat. This spring, I had the opportunity to attend a religious conference without letting anyone know that I had an illness, and it was a revolutionary experience. I loved it. I felt like people were seeing me as Rachel, and it was a desperately-needed opportunity. And yet, I still never felt as whole as I do at the JA Conference, where everyone knows my diagnosis by the color of the bead on my nametag. I walk around with my most painful struggle broadcasted to every new friend I meet, and yet I feel more loved and understood than I do anywhere else. 

          I am thankful for opportunities to go and be surrounded by my people. I am thankful for my people here at home. I am thankful for my local friends with autoimmune illnesses, who offer me an invaluable support system, and for friends far away who stay in touch and check in frequently. I am thankful for everyone who chooses to make the world a little easier for people with life-altering illnesses. I am thankful for friends who listen, and friends who deliver smoothies, and friends who are thoughtful about the ways in which my illness affects me, and friends who ask questions, and friends who wrap me up in hugs, and friends who promise me that tomorrow will be better even when they have no idea if it will be or not. I have so many people to be thankful for. 

          Thank you for being my people. 

Sunday, June 17, 2018

This Part of It

          Living with a chronic illness is hard. Living with a body that hurts is hard. This is hard, and what I am writing about below is a small component of what makes it hard.

          I never realized how much of my self-identity was wrapped up in what I was capable of until I first got sick in middle school, and then it became very clear very quickly how self-centered I was, even when I thought I was putting others first. While this is a flaw that I take responsibility for, it is also a harmful and damaging reflection of the ableism and individualism that is rampant in our culture, economic system, and religious institutions.

Taken on a beautiful drive right outside of the North Carolina
mountains while I went to visit my wonderful grandparents a
couple of weekends ago.
          Over the past few weeks, I have been overwhelmed by appointments and treatments and medical recommendations that will drastically alter my already limited lifestyle and decisions that need to be made. I have ached unbearably from medications and treatments that are tough on my body and from an illness that is even tougher. I have wondered if my body will ever allow me to do as much as I want to do, or even just as much as a healthy person can do. This question has resulted in a bit of heartbreak, considering that my somewhat tumultuous medical history points to the answer "probably not." I am worried about what that answer will mean for my career, for my friendships, for my faith, and for the years ahead. How do I think about a career when my body is unreliable? How will I sustain friendships when my health is a hot mess? What is the appropriate way to relate to God when everything hurts? How do I plan for the future when I am not certain what state my body will be in tomorrow?

          I have not been able to do as much as I want to. I have not been able to work as many hours as I want to, and I have not been able to love people as well as I want to, and I have not responded to as many emails as I want to, and I have not filled up my schedule as much as I want to. I have not been a very good friend or daughter or sister or church member or even puppy snuggler. I have cried to my mom, feeling like a failure, too many times. I want to feel whole and capable again. I feel like a reduced, weakened, and unimpressive version of me.

          When my mom casually mentioned a few nights ago that she was proud of me, and that I was doing a good job and doing a lot, I burst into tears. I am a bit weepy these days, especially when my pain levels are high. When a Target employee complimented my eyeliner, I sarcastically joked that it was the only thing that I had done well that day, but my sarcasm was rooted in trying to be funny rather than in disbelieving my own words. My self-esteem is not thriving, but overall I am still doing okay. I have spent healing time laughing in the car with my friends, bonding with strangers in the grocery store, celebrating with people I care about, watching Queer Eye, and listening to people I love tell the very best of stories. 

          I would like to be able to tell you all that I am on the other side of this period of low self-esteem, but that would not be the truth. I believe in honest conversations about chronic illness, even when they are difficult and even when my belief is reluctant. Chronic illness is hard to live with, and even though I am trying, and even though I am surrounded by good people, it is still hard.

Our little dog, Lexi, who I do not feature enough on this blog
          Sometimes I do not feel so great about myself, particularly in ways that relate to and are affected by my illness, and I think that is okay. It is uncomfortable, but it is okay. I know that there are other ways to form an identity, ways that are more sustainable and less egocentric and more in line with my values. While I would much rather be healthy and capable of doing all that I want to do, today I am choosing to be at least a bit grateful for the failure that is forced upon me, not because I am superhuman and capable of praising awful things in some sickening way, but because this seems like the best option for existing today. Perhaps there is something holy about realizing that my body is fragile. There is certainly something holy about the friends and family members who have swooped in with encouragement and kind words and selfless acts, reminding me that I am deeply and undeservedly loved even when I am nauseous and fatigued, and even when the majority of my joints hurt and I am not as functional as I would like to be, and even when I am weepy and frightened. I like to think that there is something holy about honesty and about writing out this experience of feeling like the worst, even though I do not particularly feel like publishing or sharing this post.

          Chronic illness is not all IVs, MRI machines, X-rays, appointments, injections, and physical pain, although all of those things can certainly be a part of it. The pain of knowing that you would be a different person without so much pain is present as well. Thank you for listening to this part of it today. Thank you for trying to understand. If you do not have to imagine your life with constant physical pain, if this life is already your reality, then thank you so much for being here. 

Friday, May 25, 2018

Pink Pomegranate Shampoo

Today involved getting paid to talk about all of the
things that make me happy, peaceful walks through
 campus on a sunny Carolina day, and much-needed time
spent with delightful friends like Alana!
          I will be a bit sad to let eighteen go next week and to move onto nineteen. I love eighteen. I love being a teenager. Nineteen feels too close to my twenties. I would like to stay right where I am; I have decided that eighteen is the perfect age. People are okay with me not knowing anything at all, I get to ask anything I want and people are willing to help, it is considered acceptable for me to request advice from every single person I encounter, and I am granted the privilege of soaking in the wisdom and experiences of those around me. I am allowed to abruptly admit, "I don't know," as much as I want without anyone scolding me. It seems as though being eighteen has granted me a special sort of permission to ask questions and to be wrong that will not last forever. I wish it could.

          Per usual, the universe has offered me many lovely little luxuries to celebrate and to be grateful for over the past week. Pink pomegranate shampoo. Time spent with friends whom I could not possibly love more. Iced coffee. Summer work that I adore. Bright sundresses. Thunderstorms that seem to shake the whole world. Laughter. Free birthday month gifts from cosmetic stores. Changing fruit seasons. No surgeries on my calendar. These are all things that I love, love, love.

          I am scheduled to increase my methotrexate dose tomorrow night. I tolerated the third dose perfectly, a welcome and shocking discrepancy from the overwhelming fatigue the first two doses caused, and my fourth dose (last week) resulted in only mild nausea. Please pray that this trend of not-dying-on-Sundays-post-MTX continues, because I could really get used to a lifestyle that helps my joints without requiring me to sacrifice a day that is so important to me each week. With the permission of my rheumatologist, I skipped this week's bloodwork and am holding off on upping my dose as scheduled. I know we will have to do so shortly, but I decided that I want to keep feeling eighteen this weekend, and I am grateful for a physician who understands and respects this. I am prioritizing the lovely little luxuries over the big picture this weekend, and my medical team is not making me feel like a terrible person for it, and that is no small miracle.

          My health seems to be on a good path at the moment with this new treatment plan, and while there is still certainly room for improvement, I am grateful to be out of crisis-mode and to feel like I am capable of most of the things I want to do. When I am being honest with myself, I know that this will not last forever. Part of me feels like I am always preparing for the next flare.

          And when the next health crisis barges into my ordinary, relatively healthy life as an uninvited guest? I will hate it and I will be disappointed and I will feel trapped inside of this body of mine. And still, at the very same time, I will have pink pomegranate shampoo, even when using it brings me to tears over joint pain and hair loss. I will have friends who invite me over and accompany me to appointments and call on tough days and cry with me, ensuring that I feel loved even when my body is destroying itself and I feel all alone. I will have tasks that I am capable of completing even when I feel incomplete. I will have thunderstorms that slam against my bedroom windows to remind me that the world is out there and out of my control and so are the cells in my body sometimes.

         I want good health. I need good health to be who I want to be. And when it slips through my fingers, I hope I will remember all of the lovely little luxuries that have made eighteen such an extraordinary year even in the midst of deep fear and sorrow.

A beautiful beach on the Outer Banks, where I spent this past weekend with my gracious and hilarious friend Amelia! Amelia and I have been friends since before I was even diagnosed with juvenile arthritis. She has chosen to stick with me through the very worst moments of it, from painful days of not being able to walk down the school hallway in the sixth grade to scary systemic symptoms that began in the fall and continue to hover over me now. I could never thank her enough for her kindness, and I am eternally grateful for our shared love of all things British monarchy-related. 

          I spent several months of eighteen feeling like I had no age at all, like I was just a sick body without any true properties, floating between cold, metal stethoscopes, overwhelmed by pain in a way no human being should ever experience, whether eight months old or eighty years old. Honestly, during a few particularly dire moments in the fall, I worried that perhaps I had already seen most of my birthdays. No medical team could seem to pinpoint why my health was collapsing so quickly and mysteriously. I chose not to verbalize this fear. I did not want anyone to worry. I was afraid that my fear was an overreaction. I only disclosed my heartache to one friend, on a particularly desperate day after another alarming but uninformative medical appointment. I sat on my bed with a box of Kleenex and puffy eyes and admitted through my sobs, "I am afraid of dying. I am so afraid of dying."

          When I look back on all of the ways that my friends swarmed in with immeasurable support and comfort in the fall, I realize that it was silly of me to think that I would have had to explicitly define this hovering sense of existential threat to them. They already knew, and so they rushed in with everything they had to offer to a sick eighteen-year-old. I will forever be indebted to them for that.

          I will miss eighteen dearly, but I am optimistic that nineteen will be much less turbulent from a medical standpoint (this is the point of the post at which Alana would physically pick up my hand and knock it on wood). I like to think that grand gestures of generosity and lovely little luxuries work in tandem to get all of us through each year, whether we are experiencing the worst or the best or both. Perhaps sometimes we need the bold, caring words of friends to lift us up, and at other times a pump of pink pomegranate shampoo will do the trick. What a funny life. What an absurd age to be. What a good one.

Wednesday, May 2, 2018

The List of Humanizing Things

          I cannot drive with my car windows down because of all of the pollen in the air. While this is admittedly a minor inconvenience, especially considering all of the much more major medical events of the week, from restarting a low-dose chemotherapy drug in the form of weekly methotrexate injections to receiving MRI results to scheduling a bunch of appointments for once I am done with exams to waking up with intense stiffness and pain in my lower limbs and fingers every morning so far, I am still mourning the loss of the ability to blast Lorde while feeling the sharp wind of the highway tangle my hair, in a way that completely blows this everyday joy out of proportion.

          On Friday night, with a vial of methotrexate sitting on the desk beside my bed, alcohol swabs on my pillow, and a packaged syringe and needle in my lap, I pulled out my Spanish notebook and wrote what I later deemed to be The List of Humanizing Things, knowing that I might need it the next day. I was about to inject my first dose of the drug since I stopped it several years ago, citing a strong dislike of feeling like I had the flu once per week, which resulted in noncompliance which resulted in inefficacy which meant that we should try something else. My new rheumatologist knew within my first appointment with her how much I hate this drug, and so when she brought it up at my most recent appointment, her question was, “How would you feel about methotrexate?” with a cautious hesitance that I interpreted as sensitivity to my rough past experiences with it. I did not jump onboard, but when I found myself in Atlanta the next weekend surrounded by other young adults who are empowering and hilarious and strong, I typed out a message to my rheumatologist from my hotel room, expressing a newfound willingness to try methotrexate again during a fleeting moment of bravery. I am tired of my joints hurting and of other random systemic symptoms. I like to think that I am stronger and more capable of managing side effects than I was as a young teenager, but this is perhaps wishful thinking.

          The List of Humanizing Things included quite the variety of activities. An excerpt is below. While this list was a spur-of-the-moment decision, I would encourage you to try it if you ever find yourself in situations in which you do not feel like a human being.
  • Watching Keeping Up with the Kardashians while covered in blankets and writing college papers 
  • Wandering around Target in the least methodical way possible with my friends on rainy afternoons
  • Laying on the floor with my dogs and telling them about the other dogs I have recently met
  • Driving with loud music and my windows rolled down 
  • Babysitting, and hanging out with kids in general 
  • Going to the mall when with my sister, Hannah, especially when I should definitely be doing homework 
  • Friendly conversations about makeup application with strangers in grocery stores
  • Going on excessively long runs in Audubon Park in the early evening hours
  • Spontaneous late night trips to the movies with friends on weekdays
  • Cooking overly complex vegan recipes and making an enormous mess in my kitchen

          Saturday, my first post-MTX day in several years, was full of caring friends. At this point, I probably should not be surprised by how kind and selfless people are, but every single day I find myself stunned by unimaginable generosity. My first conversation of the day was with a friend who gently reminded me that resting is not a sin, and I genuinely do not know how I would have made it through the day without that. I held up better than I thought I would, considering that I definitely felt like I had the flu and was achy and feverish, but the day involved a lot of naps. I sat on a bench to call my mom and text a friend, and all of the sudden I woke up coughing, with inflamed lungs (apparently laying under a tree is not ideal if you have severe seasonal allergies, but I blame this on methotrexate-induced brain fog) and realized that I had slept through the start of lunch. Then I was sleeping in my room. Then I convinced myself to go to the beach - after all, if one is going to feel the inevitable side effects of powerful drugs, one might as well do so staring into the ocean, being reminded of a world that is much bigger than a small vial. I started out studying, and then found myself texting a friend (who also has autoimmune arthritis and takes methotrexate) with a great deal of urgency to ask if it was normal that I felt like I needed to lay down immediately, and while he was still typing his response I fell asleep. Then I was blinking in a half-awake state trying to figure out why everything seemed so intensely blue. I thought I had slept for ten minutes but it had been hours, and my body felt like it had been hit by a bus.

The prettiest, most peaceful way to start an MTX hangover day.

          I did not realize that I had burned my face until my friends expressed concern. I initially attributed my skin feeling hot to feeling like I had a fever, especially considering that we were entering the time of day in which my body temperature likes to pop up for no reason whatsoever. When I finally looked in the mirror, I realized that I had made quite the mistake by falling asleep in the sun. The real saviors of the day were three elementary schoolers who ate dinner with me and entertained me with their antics, conjuring up amusing questions about “being a grown-up” and about seagulls, all of which I was completely unequipped to answer. As I found myself sweeping crumbs off of the table and promising that I would match my ice cream toppings with theirs later that evening, I realized how indescribably grateful I was for each of them. It would have been challenging to eat dinner with adults that night, and as I watched their three faces explode with laughter again and again, all I could think was, This day is so worth it.

          After dinner, my mom imparted beautiful and brief wisdom regarding self-compassion when I called her crying because I felt so dumb and careless for falling asleep on the beach after taking a medication that makes me extra sensitive to the sun. A few minutes later, I received a text from my dad which was so empathic that I cried once again. I do not know why I expected everyone to say, “Rach, that was such a bad idea. You know methotrexate makes you tired and sensitive to the sun, why would you go out there?” because I am the only one who ever says those things to myself. But I did expect those words, and I was prepared to agree with them. Hearing the opposite, “I am so glad you got to go to the beach, and you are doing your best today,” sent me straight to tears of gratitude for all of these wonderful people who surround me with love even when I am not doing the same for myself.

          When it was time for me to try to sleep through the symptoms for the night, I found myself a bit unable to pull it together. I called a dear friend, who let me get roughly two sentences into the methotrexate sunburn story before adamantly interjecting with, “I am not letting you feel bad about this.” A conversation that I had expected to be weepy turned into one that was only a bit teary and involved quite a lot of laughter and, thankfully, some practical sunburn care and cover-up strategies. 

A tip for placing a pre-filled syringe with thousands of
dollars worth of Humira into a communal refrigerator:
borderline aggressive sticky notes.
          In summary, my first post-methotrexate day in several years started with a gracious conversation with a friend, followed by reassuring conversations with each of my parents, and ended with a phone call with a friend who made me laugh and refused to allow me to seep into the guilt that comes with making medical decisions and trying to live a life at the same time. None of that even includes all of the friends who helped me in various, tangible ways despite not knowing that it was a particularly difficult day for me on all sorts of levels. None of that includes the kids that treated me exactly the same as they did on Friday and on Sunday, when I had much more energy and less pain. “It was such a good day,” I told the friend I called from the beach over dinner last night. It was not a statement I ever thought I would be able to make about my first post-methotrexate day in a long time. It was a beautiful day. I felt horrible. I felt so loved and so lucky. I quite like this life I am living.

          The day after I returned from the beach, I weaved my way through the hospital for an appointment in which the attending and chief resident verbally went through my entire case, test results, and recommendations/treatment plan in my patient room. They faced a screen, talking only to each other with their backs turned towards me, never acknowledging my presence. Once their conversation was over, the chief resident turned towards me, introduced himself, and proceeded to repeat this information in a condescending clinical tone, as if I had not heard their entire conversation from approximately one foot away.

          I left the appointment wondering if I was real. I pinched my cheek in the hallway of the hospital to make sure I was there. I had not been treated like a real person with ears and emotions and questions and a life. I felt completely dehumanized. I called my mom to tell her how rude they had been and to rant about how screwed up the entire medical system is, as one must do every now and then. She sympathized and reaffirmed my human dignity. Despite her unquestioning support, I have spent much of yesterday and today having to repeatedly remind myself that I am a real person who is here and is present and is deserving of the basic consideration of attendings and interns and everyone in between. I found myself pulling out The List of Humanizing Things yet again, except this time in the context of dehumanizing appointments rather than immunosuppressive drugs. The most appealing option was blasting music and riding with my windows down - this is almost always the most appealing option in my book. 

          So what do you do when the thing that will make you feel the most human is prohibited by lungs that refuse to breathe in the presence of pollen? I do not have that figured out yet. I miss the outside, especially on beautiful days like today. Sometimes I choose quality of life over strictly medical decisions, as I did on Saturday by venturing to the beach instead of resting in my room. I know that if I roll my car windows down, my breathing will impede my quality of life enough to cancel out the psychological benefit. I feel young and unqualified to weigh all of these decisions. I fear that people will either think that I am not resting enough or not doing enough - how will I ever manage to get it right?

          Perhaps I never will. Or perhaps when my frontal lobes are fully developed I will find myself much more confident in my ability to make these decisions. I have no idea. But I know that despite injecting a disgustingly-colored poison into my stomach, and despite feeling overcome by the methotrexate flu, and despite a dehumanizing appointment, and despite not being able to roll down my car windows, I am having a lovely week full of humanizing things. I am hopeful, although admittedly skeptical, that this will not be my life forever. I am hopeful that this immunosuppressant will result in dramatic medical improvements, and I am hopeful that the side effects will lessen as my body adjusts, and I am hopeful that doctors will be more considerate of my humanity, and I am hopeful that we will develop a much better way to treat allergies. Even if none of these hopes are realized, I am glad for weeks like this one, to look back on as a reminder that even though good health would be an excellent addition to my life, good people are enough.

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.