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.