Thursday, January 25, 2018

Space for Suffering

          It has not been a bad week. I am not feeling sicker than usual, but I am feeling sicker than usual of having a chronic illness. I cannot seem to pinpoint how well I am on the whole, because I do not know how high I should be setting my expectations of my health. I think I will err on the side of being okay.

          Sunday was fantastic, and then I started Monday morning by throwing up in front of my entire class and professor (good times), so now I am that girl. Tuesday was excellent, and then Wednesday brought yet another post-operative appointment. Last night I could not fall asleep without practically freezing my shoulder off, and today I am certain that there is some serious inflammation taking place all across my shoulders and neck, but there is nothing I want less than to go to the doctor right now, plus I had four hours straight of classes and multiple accommodations meetings so there was no time for that. I walked out of the building where my last class was at the end of the afternoon, just as the evening breeze was beginning to set in, and thanked the high heavens when I spotted my friend in the library, a midway point between my classroom and my dorm room, because I quite literally was too fatigued to make it all the way back to my room. I stopped for a twenty minute nap under a table, hearing the clicking of all of the laptops around me, each sequence of taps representing my studious peers who do not need to nap in the most inconvenient places and at the most inconvenient times. I stood up, walked calmly to the restroom, threw up, walked to a different building, called my mom, and then met up with a friend for dinner.

  Thankfully, I am still fully functioning and am able to think clearly. Tomorrow afternoon will bring my third Humira injection, which I am bound to end up doing in a parking lot somewhere because I have to get that evil little syringe as far from a refrigerator as possible to convince myself to shove it through my skin instead of postponing it. I am under the impression that distracting myself might help, so if you have any links to funny videos please send them my way.

  If there is one non-anatomical way that my most recent surgery has changed me, it is that it has transformed me into a firm believer that "vacuum" is a term intended for carpets and not for faces. At this point, my surgeon knows that I handle foreign objects being stuffed up my sinuses very poorly, and he laughs at me while I make all sorts of hilarious remarks in an attempt to verbally express my discomfort, which somehow makes the whole process more bearable. I flinch every time he sanitizes a new instrument, and when I ask if it will hurt, he first dryly responds, "Don't worry, this won't be painful for me," and then is perfectly straightforward, with a casual expertise that I find comforting.

          At the appointment yesterday, my surgeon and I discussed "long-term treatments" that need to be implemented, in part because of my immunosuppression and in part because of how complex my health is in general. From my perspective, the surgery itself was the long-term solution, but apparently things are a bit more complicated, which always seems to be the case. I find it difficult to resist feeling overwhelmed when medications are prescribed indefinitely and the word "years" is thrown around. I find it difficult to spend hours each week playing phone tag with various doctor's offices and listening to the most horrid of hold music. I find it difficult to stab myself with a needle that promises intense pain but is much less faithful when it comes to the question of efficacy. This week, the boring and mundane parts of having a chronic illness seem to have caught up to me.

          My surgeon and I also talked about life in general, and realizing that he sees me as a whole human being and not just a screwed up face was oddly relieving. He repeatedly used the word "happy" to describe our end goal. It was not about an emotional state (I am already happy, even though my body seems to be engaging in continual self-sabotage) but rather about the space between the tip of my nose and the middle of my forehead, where my recent surgery was performed, becoming a place in which my health excels, not a place of swelling and discomfort. I thought his use of "happy" was brilliant. I felt understood, and I felt like his post-operative expectations were as high as mine are, and there are few feelings better than the feeling of being on the same page with someone. By using this word and talking to me like a fellow human being rather than a surgical case, he created space for suffering, acknowledging my hopes and fears and potential. Many times when doctors look at me I feel like all they see is a lack of potential. I am thankful for the exceptions.

          The best part of the week has been spending quality time with dozens of friends, new and old. I struck up a conversation in my surgeon's office with an elderly woman in the restroom, and we chatted for ten minutes at the sink about her earrings, which somehow led to a conversation about religion, which almost made me late to my appointment just a few doors down. I spent all day on Tuesday with various members of my church, learning and laughing with people I adore. I had several conversations with professors about how my health affects my academics, and all of them were more accommodating and understanding than the law mandates. I received unexpected cards, emails, phone calls, and messages from some of the kindest people in the world, even during this week in which nothing particularly exciting is happening with my health. My friends and I checked in, made plans, and just generally cared for one another, which I think is what we are all supposed to do at the end of the day. I am feeling immeasurably grateful.

My friend Kayla hanging out with me after a surgery. You can't
see it here, but Christian Mingle is pulled up on Netflix in the
background, which is how you can confirm that she is a true friend.

"Friendship." This is a word I have been considering quite a bit lately. All throughout elementary school my teachers reminded us, sometimes cheerfully and sometimes aggravatedly, to be friends with one another. No one said, "You're going to get so sick that at times you will literally depend on these people to stay in school, to eat, to keep your spirits up post-operatively, to make space for your suffering, to exist." Yet somehow they must have etched this message into the crevices of my young, impressionable brain, because I have always loved friendship. I think it takes a lot of practice, a lot of time, and a lot of intentionality. I often fail, but I like to think that I am getting better at being a friend.

Kayla, post-banana purchase,
undoubtedly living her best life
  Sometimes I feel like I have experienced the height of what friendship is, like I have been to the very top of the mountain, undeservedly chosen as the recipient of kindness too beautiful to write about. I believe in holy moments, ones that should stay secret and sacred and should not be made public on a blog. I draw lines of privacy around my health and life in general with much greater frequency than I think many readers might expect, yet I also believe in occasionally breaching these boundaries, in due time and with the permission of those involved, because there are lessons worth sharing embedded within them.

  When I think of friendship, and more specifically of making space for suffering, I think of my friend Kayla, who came to my room a couple of months ago to assist me with some practical health necessities, including opening my prescription bottles so that I could take my nighttime medications. Child-proof pill bottles tend to be arthritis-proof, which is quite unfortunate because asking for easy-open caps is not the most embarrassing thing in the world but it is certainly not the least embarrassing, either. Kayla delicately pushed open my door and I climbed out of my bed, barefoot on the cold tile floor of my dorm room, pain rushing through my body with every movement and every pause, my immune system offering no reprieve whatsoever. My face was puffy from repeated rounds of steroids and from an evening of crying on the phone with my parents and my doctors. All of my muscles hurt so badly that I could not think any further into the future than a couple of hours. My constantly changing cocktail of medications had my brain and body all messed up. I was relieved to see Kayla, but nervous about her seeing me.

          I set out all of the medications I needed help opening, feeling horribly embarrassed and small and sick and messy. I had recently started a muscle relaxer, and I felt sleepy and crumbly and fragile and not at all like myself. It seemed as though the smallest gust of wind could knock me over, physically and emotionally. Kayla carefully opened each bottle with her much more capable fingers, with an ease that I could only dream of, and we exchanged a few words acknowledging the enormous size of the antibiotic pills, neither of us venturing into humor. Perhaps it would have been brave for one of us to make a joke, but I thought it was brave of her to speak up about her observation without retreating into the lighter space of laughter. She looked horrified when she saw the giant white ovals, and for the first time I felt like maybe my struggle in swallowing them and my twice daily fits of gagging and trying not to vomit were legitimate challenges.

Kayla placed the bottles on my desk with their respective caps laid next to them, and then she stood across from me, looked me in the eye, and gently said, "I love you, Rachel," her voice full of empathy and exasperation, tenderly acknowledging the difficulty and longevity of my illness. It was the tone of someone who was intentionally making space for a person she knew was a disaster, inviting me from the dark corners of illness out to someplace I could not identify but was sure had a lot of light.

  I hugged her and I hope I told her that I loved her too, although looking back at it I am embarrassed to share that I may have been too self-absorbed and upset in that moment to reciprocate. I am pretty sure I said a few things, with my arms wrapped around her and my face illuminated by the brighter light of the hallway shining through the open door of my dorm room. I think she said a few things too, but I do not remember any of them; perhaps she does. I wept with my chin on her shoulder, knowing that this was the purest form of friendship out there, the purest form of love, the purest form of empathy, and still wondering if it would be enough to get me through the worst of times. I sobbed for what had been and for what was and for what I feared would be. I worried that I would never be able to stop. Kayla did not rush this uncomfortable moment, choosing instead to exist within it alongside me and to bear witness to suffering in its most broken-down form.

Luckily, it did not take long before I became concerned about the possibility of my snot transferring to her sleeve, which thankfully ended my tears, and we laughed a bit as I apologized and found some Kleenex. I achingly climbed back into my bed, and she very generously walked to a pharmacy to buy a special ice pack that I needed for the tight, inflamed muscles in my neck and brought it all the way back to my dorm room.

          The truth is, Kayla has made space for my suffering many times before, and sometimes I take her up on these offers and sometimes I reject them and choose to put up walls instead. Sometimes I reject spaces for suffering because I simply do not need them (much of the time I am genuinely doing well), and sometimes I reject them because I am not trusting or transparent enough. Yet even though she and I are both well aware of these indirect refusals that happen with more frequency than I would like to admit, she continues offering space for suffering and the implicit promise of her presence, and although I never say it nearly as often as I should, I am grateful every time.  

          Opening up space for suffering is a practice that I think the majority of us are very uncomfortable with. We want pretty endings, we want people to laugh, we want people to prove to us that they are "overcoming" their burdens. We want to know that other people are doing well despite their challenges, and by doing so we hope to prove to ourselves that we are invincible. We want to know that there is some sort of meaning behind pain, whether divine or philosophical, so that we can push away the reality that horrible, horrible things can happen to anyone at any time for no reason or purpose at all. We close up spaces of suffering when we find them open and raw in front of us. We pull out phrases that we think will stitch the people we love together, assuming that when people express their agony they are seeking a cure, or perhaps just trying to stop the screaming because the dissonance is too uncomfortable. 

  I often find it difficult to create space for suffering and to be a good friend. It can feel invasive, and it can feel unhelpful, and it can feel awkward. I firmly believe that it is worth all of these costs.

  While I stood hugging Kayla in my dorm room, with tears rolling down my cheeks, sucking in sharp breaths that hurt my chest and pained my spirit, I had no idea whether or not even the pinnacle of friendship was enough for my broken body and weary soul. But with distance comes clarity, and with time comes understanding.

  It was enough.


  1. Thanks for sharing your experiences so honestly with us, your readers. I'm so glad that you have such a wonderful friend in Kayla who knows how to make space for you, that you have a surgeon who not only knows how to make your sinuses "happy" but also knows how to relate to you like a whole person, and most of all, that you found out you have enough. Hugs to you!

    1. Thank you for this sweet comment, Whit. I am certainly thankful for Kayla, my surgeon, and friends like you! All my love <3


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