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.