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.