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.       

Tuesday, April 17, 2018

The World of Working Bodies

          Before heading off to bed on Sunday night, my mom and I were standing in our kitchen, discussing my uncooperative, melodramatic lungs, which seem to have decided that if there is a single particle of pollen in the air the only appropriate response is to cease all breathing operations. "It's fine," I said a few times, probably trying to convince myself more than I was trying to convince my mom. We exchanged thoughts about medications and the season of spring and my lung function (or lack thereof).

          "It's fine, it's just... It's so annoying that no one else is dying," I blurted out. I instantly felt bad and followed it with, "I don't want anyone else to suffer, but it's annoying."

          This was definitely an atrocious, no good, all-around cruel thing to say, but it was true, and my mom was so quick to agree with me and to empathize that I felt a little bit less like an unforgivable monster after she enveloped me in a hug. I am genuinely confused when I walk through campus and see people soaking up the sun outstretched on grassy quads, breathing in pollen as carelessly as they want. I am equally bewildered by the I-can-take-a-Claritin-in-the-morning-and-be-mostly-okay population. I can barely scurry from one building to another without losing function in my smaller airways, and if I have to be outside for any longer I have to build in time for a nebulizer treatment. I do not understand how other people's bodies allow them to live so freely. I do not understand why mine has to react as though the world is ending just because it is springtime.

          Of course, I understand that there are many things more dreadful than wavering physical health, and I recognize how egocentric and ridiculous my remark was. There are countless tragedies that hold much deeper sorrow than the inflammation in my body. I know that almost everyone is hurting, and that emotional pain is often much worse than physical pain. But when you are struggling for breath and the other people in the room are clearly not, it is difficult to remember these fundamental connections to broader suffering and to avoid feeling isolated. When you are in a codependent relationship with albuterol and Zofran and Benadryl, it is almost impossible not to wonder how everyone else seems to be existing in bodies that are not constantly trying to shut down.

          Yesterday went progressively downhill from a health standpoint. By the evening, I was not feeling like myself at all. When I looked around at my classmates and friends, I found myself once again annoyed that they were not in my world. Or perhaps that I did not have the option of entering theirs. Or perhaps that no one else seemed quite as concerned about how quickly they could exit the room if nausea overtook them, or had their hair braided back because they were worried about throwing up, or could not breathe deeply no matter how hard they tried, or felt every aching bone in their body.

          When I returned to my room for the night, after what felt like a marathon but was really just a busy Monday, I took a Come-to-Jesus Shower. I like to think we all take these at times, but if you have not, it is basically when shampooing your hair coincides with realizing what an awful person you are, and by the time you are conditioning the ends you find yourself creating a mental list of all of the amends you need to make in order to be a less terrible human being. Last night's Come-to-Jesus Shower, which was unexpected but not unlikely given the circumstances of yesterday, was entirely too long and overly emotional. The only redeeming part was that because I am on a maximum dose of Benadryl every four hours, I have no tears in me, and we thank God for that, because I do not think my lungs could have handled a breakdown.

          Warm water loosened my joints and soothed my muscles and, despite my stubborn resistance, softened my heart. Gradually, I found myself no longer quite as annoyed that no one else seemed to be dying. I was simply grateful for everyone who reached out despite my self-centeredness and absorption in my own pain. I realized that literally all day people had been trying to enter into my world, and I was pushing them away and then blaming fate or God or some other responsible force for the enormous space between us, when in reality I was the one drawing all of the boundaries. Perhaps I was afraid of trying to connect my world with the world of someone healthier and failing. Perhaps I feared that failing would make the gap seem unbearably wide. Regardless, I was not brave enough to try, and so I cut off concern and pushed away compassion and convinced myself that there was absolutely no way that I could have a meaningful conversation with anyone who did not feel like their body was decaying from the inside out. Perhaps this is where my lungs get their drama from. When my Come-to-Jesus Shower concluded and I returned to my room, I sat at my desk in my favorite pajamas, feeling defeated and mushy and wrong and grateful all at once, and typed out simple apologies to a couple of people who received way too much harshness and way too little gratitude from me. Water droplets from the tips of my hair crashed onto my phone, clouding the screen, and as I wiped them away with the sleeves of my pajamas I found myself with extra time to hope that if friends and family knew that I was well-aware of what a jerk I was, they might at least be a bit less hurt by my lack of kindness.

Level of annoyance with my lungs
when this picture was taken: 9/10
          Sometimes I feel like there are all of these people who are great at being sick, who are making the most of difficult circumstances and are learning and growing and thriving, and then there are those of us who are just trying to make it from one point to another without everything falling apart. Way too often, I seem to fall in the latter category, wondering why everyone else's bodies seem to respect their right to exist while mine attacks itself for no discernable reason. It is not a fair question to ask, but it is a difficult question to push away. It is not a matter of wondering, Why me? but rather revolves around a more external question, Why not all of you, too? My favorite Tulane nurse taught me to check my nails when I am struggling to breathe, instructing me to nebulize without waiting for a convenient time if they appear bluish in color. Sometimes when I see other people look down at their nails I wonder how their blood oxygen is, and then I remember that this is not what most people are thinking about and I begin to feel like I am existing in a reality that bears less resemblance than I would like to the realities of those around me.

          I have been thinking quite a bit about what my reality is lately, especially since I am sort of in an odd middleground state with my health. I have found entering the hospital attached to my college campus to be a strange experience. As I walk through an unmarked side door for appointments or scans, I cross over from "student" to "patient," and I always wonder which is the truth. When I step onto the speckled tiles that make up the gridded hospital floor and breathe in the air that smells so different from the fresh air of the college campus, I find myself simultaneously horrified and relieved. I wish I could exist solely in the "student" space; the hospital makes me feel icky and scrutinized. At the same time, when I am whisked into this community of patients, I think, Oh, thank God, these are my people. I don't have to have it all together here. I feel blessed camaraderie with the other children and teenagers in the pediatric specialty waiting room, as we collectively try our very best to exist among the World of Working Bodies yet repeatedly find ourselves in the sterile and invasive World of Stethoscopes and Needles.

          So this is the truth of my being chronically ill: sometimes I find myself inexplicably annoyed by the comparatively good health of others, which is most likely the mark of a horrible person. I am sure there are many who are much sicker than I am who feel the same way about me. There is some comfort in knowing that whether you are healthier than me or sicker than me, you will leave this post certain that I often fail to be a good human, daughter, and friend. I am not the hero of this story, despite how frequently I wish I could be. This does not mean that I punish myself indefinitely whenever I think or say or do something that is unkind, but it does mean that I take Come-to-Jesus Showers, and I convince myself of the existence of imagined boundaries to spare myself the pain of discovering any real ones, and in my head I criticize the World of Working Bodies to make myself feel better about my exclusion from it, and I learn again and again to apologize even when admitting my unimpressive response to the cruelties of my illness is humiliating.

          I am not the hero of this story. And we thank God for that.

Thursday, April 12, 2018

How Sexism Ruined My Jaw

          "Is there something else going on... outside of all of this?"

          This is the question my jaw surgeon tenderly asked me a little over a week ago when I only made it one sentence into explaining why I was there, laying in a well-cushioned hospital chair with six lights shining directly onto my face, before dissolving into sobs. Not crying. Sobs.

          Of course, I was horribly embarrassed. And I was at the appointment by myself. And I was desperately trying to pull it together. And I knew that if I did not give him at least a bit of explanation regarding my seemingly endless tears, he might be genuinely concerned that I was losing my mind.

          "I'm worried about damage," I said, summing up my concerns into a short phrase that did not describe the magnitude of my sorrow but was not a lie. He did his best to reassure me. We discussed further imaging and medications and surgeries. He was gentle and encouraging. I pulled myself together not because I was no longer upset, but because the very reason that I was dictated how I must act in this scenario.

          I am a fairly well-educated person, with a parent who works in the medical field, stable health insurance, and excellent medical resources. I have educational background in public health and the health humanities, and I am reasonably medically literate for an undergraduate. Still, when it comes to the case of my jaw, I cannot help but feel like for years on end I slipped through the medical cracks and gradually became a victim of a sexist healthcare system. Some people are uncomfortable with the use of the word "victim" in situations like these, and I respect that completely. I would never refer to someone as a victim without knowing that that was their preferred term. But please hear this: I am a victim of medical sexism. I hope this word makes you uncomfortable. I hope the brief excerpt of this story that I have published below does as well.

          Last January, I saw my New Orleans rheumatologist due to increased joint pain, particularly in my jaw but in other joints as well. I shed a few tears when he asked me to describe my fatigue and physical limitations; after all, Mardi Gras was coming up, and I was keenly aware that I was not going to be able to participate based on all of the health problems and chronic infections I was experiencing. During a brief physical exam that left me feeling more like a piece of meat than I ever have before (and that is saying a lot), he observed inflammation in some of my other joints, but never even examined or measured my jaw. Instead, he barked for a nurse to come in and administer a steroid shot to try to control the flare, and then, without ever saying one word about it or asking a single question, dropped "anxiety" into my EMR and left the room. I was livid. And teary and upset and emotional. If I am too honest about how arthritis affects me and I display any sort of emotion as a result, my symptoms are disregarded or assumed to be psychological in nature. If I am too stoic, my symptoms and their effect on my quality of life are underestimated and I am undertreated as a result. There is no way to win this game. Sometimes it feels as though there is no way to be a woman in a hospital gown and to be believed.

          By the time other medical professionals, none of whom are actually responsible for the care of my jaw but who look out for me with all of the expertise and concern in the world, alerted me to the severity of my jaw problems (read this post for more background on how this happened), it was, in some sense, too late. An MRI showed permanent damage. I had a minor procedure in the fall to try to prevent even more damage and to clear out some of the "debris," which, by the way, is never a word you want to use in reference to your own body. I probably would have been more infuriated by the necessity of surgery had I not been so consumed with an unidentified rheumatologic illness that was destroying my body. Just a few minutes before its scheduled time, the procedure was almost cancelled due to a heart abnormality that had been discovered when I ended up in the ER for chest pain the previous week. Even on jaw surgery day, my jaw was the last thing on my mind.

          We were about to start a handbell rehearsal a few weeks ago at my church when I opened my jaw, probably to yawn or to say something, and I realized that it was loud. My mom could clearly hear the joint moving while standing next to me. And it hurt. I slipped off a handbell glove and sent a message to my surgeon while everyone else was organizing their sheet music. I knew just by how it felt and sounded that it was not going to be good. I became furious all over again at my New Orleans rheumatologist. I thought of the almost ten months of active damage that potentially could have been prevented if he had trusted me enough even just to place a hand on the side of my face and ask me to open my mouth. That three-second process was all it took for my more empathic doctors and dentists to realize that I needed to see a surgeon and return to my rheumatologist as soon as possible.

          Despite referring to myself as a victim of medical sexism, I still blame myself for several aspects of the damage my jaw has incurred over the years. I could have been more compliant with my medications as a young teenager. At one point an MRI of my jaw was ordered when I complained of discomfort at an appointment, but I chose not to go through with it because it would have required the removal of my dental braces. If I had been informed by my doctors at the time that juvenile arthritis patients often underestimate the damage done to their jaw when attempting to evaluate this damage through pain levels alone, I probably would have gone through with the MRI, despite the inconvenience of having my braces removed and placed back on within the span of just a few hours. But I did not know. And no one told me.

          More importantly, I wish I had stuck up for myself more. I wish before surrendering to yet another steroid shot I had walked to the nurses station and demanded a new appointment with a different rheumatologist. I wish I had sent in complaints to the hospital. I wish I had looked that rheumatologist in the eye and said, "I am not leaving until you examine my jaw," or even "The way you are treating me is inappropriate, and I do not think you would be dismissing a male patient in the same way." I wish I had asked my primary care doctor to set me up with a new specialist. I wish I had paid more attention to my jaw when I was so focused on tidying up the other crumbly parts of my body. I wish I had been braver and bolder and firmer.

          I also wish he had listened. I wish he had taken me seriously. I know what he saw. I was a seventeen-year-old girl who was thirteen hours from home in her freshman year of college. I am not upset that mental illness was a part of his thought process; for any good clinician, it should be. The problem is when assumptions are made based on my age, gender, and presentation that do not reflect my medical reality because it is easier to blame stereotypes than to confront a challenging medical case. The problem is that he was wrong, and had he been a better (or even just more thorough) doctor he would have quickly realized that he was wrong, and I suffered as a result. This is not an isolated case or story. That part hurts too. I wish this experience were rare. I wish that no one could relate. Instead, I feel like a statistic of something that is horrible, inadequately addressed, and frequent.

          Recently, I was completing an academic paper in which I focused on variations in syntax between women and men.* I am always hearing messages that are intended to be empowering regarding the ways in which women speak, such as, "Don't add qualifiers," or "Be confident in what you say," or "Be assertive." These demands attempt to break women out of cycles of uncertainty. Just read this article as an example.

          But here's the thing: I do not want to be more certain. I want men to be more uncertain. I do not want to be asked to change my speech patterns in order to conform to a greater degree of certainty that is supposed to convey authority, expertise, and the overall worthiness of my thoughts and opinions. I want to keep admitting all of the things I do not know, and I want to keep apologizing readily and frequently, and I want people to stop telling me that I should be speaking more assertively. I do not want to have to mirror speech patterns associated with masculinity for my voice to be valued. I want my qualifying statements to be respected and viewed as a means through which to express self-awareness and to invite other ideas into the conversation. I want uncertainty to be celebrated as a tool for growing and learning and collaboration. I want to say, "I don't know," and ask, "What do you think?" more than I say, "I am sure." I want to preface many of my opinions (though not all - there are obviously some things I am certain about) with "It seems," or "Perhaps" or "Maybe it is possible." I do not want to have to change in order for men to respect me. I do not want this awful, controlling version of masculinity to be the ideal that women must strive to reach, and I do not want to sacrifice my more feminine speech patterns in order to make myself worthy of being listened to. Why do we never ask men to make their speech more feminine? Why do men get to set this standard for how we should express ourselves?

          In doctor's offices, I find myself constantly monitoring my behavior and language, to figure out if I am coming across as too emotional or suspiciously uncertain about my own pain and body. The reason I dissolved into sobs in a hospital room with one of the most compassionate, intelligent, and trustworthy surgeons I have ever met was because I firmly believe that the damage done to my jaw was avoidable. I believe sexism played a critical role in the dismissal of my symptoms and the lack of proper and prompt imaging and treatment I received. I think that I should have stuck up for myself more. It hurts to think this. Every time I feel pain in my jaw, due to what my surgeon informed me at the appointment is "bone-on-bone" friction, I worry that at least in this part of my body, sexism has won and I have lost. We will never be able to restore my jaw to what it once was. There will likely be more procedures, perhaps even in the next month or so. I will likely shed many more tears over this. I cannot undo the damage that was permitted by sexist physicians practicing within a sexist healthcare system.

          What I can do is tell you that if you are uncertain about your own uncertainty, I am with you. If you feel written off by incorrect diagnoses with sexist origins, not dissimilar to the labels of "hysteria" that plagued women before us, I have been there too. If you need someone to tell you how real you are and how valid you are and how brave you can be, I will remind you without any hesitation. If you feel suffocated by the voices of domineering men in white coats who walk through hospitals on endless power trips at your expense, I will demand that you be heard.

*I refer only to women and men in this discussion, because I do not have knowledge about research in this area that extends past the binary. If you have information, articles, literature, or just thoughts in general on this broader topic, please email me!

Saturday, March 24, 2018

Who to Call Next

          If you have never had the experience of calling a specialty pharmacy to beg for your grossly overpriced medication to be shipped your way in an oversized styrofoam box surrounded by ice compresses and warning labels and wasteful packaging, consider yourself pharmaceutically blessed.

           My mom passed this responsibility onto me in December, when she helped me get my first three months of Humira ordered. I cannot explain in words how draining I found the whole over-the-phone process to be. My dogs were barking, my family was chatting, I was repeating my birthday and address a million times, everything seemed to require an extended period of being placed on hold, and there were objectively way too many steps to go through. I generally consider myself to be a fairly patient person when it comes to detached interpersonal interactions of this sort; the closest thing I ever have to road rage is widening my eyes and saying "Um," when another driver merges dangerously or flies through a red light. But it was not the pharmaceutical representative on the other end of the line bothering me so much as the screwed up system that dictates that I spend a solid chunk of precious time doing this on a regular basis. I cannot believe that my mother has had to put up with this for approximately seven years. Please observe a moment of silence for the many hours of life she has had to miss just to ensure that I have a chance at semi-normal joints.

Shout out to my wonderful friend Alana! She is a blackberry
skeptic but otherwise a 10/10 friend. A couple of days ago I was
running on only 3 hours of sleep, and struggling to hold down/refusing
any food due to hip pain and nausea. By evening these problems
caught up to me and I was borderline delirious. Right before this
picture was taken, she leaned over and casually but seriously asked me,
"How are you doing? How are you really? Tell me the truth."

          This process needs Jesus, I thought only half-jokingly when considering the many tribulations required just to obtain a medication that I am not convinced is doing anything for me. When I found myself with an extra hour before a meeting about a week ago, on a good day in which I was feeling unusually confident in my ability to function as a human being, I knew it was the most ideal time to get around to ordering my next doses. I thought of the perfect place to make the dreaded call: a church.  

          I expected the phone call to take approximately ten minutes, and I brought all of my homework into the chapel with me because I anticipated having empty time in between ordering my medication and heading off to my next meeting. The phone call(s!) ended up taking an hour, which included moments of tearing up about an enormous copay, the amount of which I was not prepared to hear revealed so casually and bluntly over the phone, tearing up about administrative mistakes, which I did not feel equipped to directly confront, and tearing up about a prescription which, for a hot minute, was completely untraceable in the company's database. There is no need to go into more detail - you get the point here.

          My saving grace was Amanda*, a pharmaceutical representative who committed herself to figuring out all of the obstacles we encountered while acknowledging how overwhelmed I was and encouraging me along the way. Her voice was chipper but it was easy to tell that she was genuine, and she allowed for long pauses in between my statements and hers, making space for the heaviness of the conversation as it bore down on me even in the comfort of the chapel. "Rachel, we'll figure this out," she kindly reassured me as she tried new ways of searching through the system, "I promise." I thought of how few people in the health care systems brave those final words, of how even friends are sometimes hesitant to step into a territory of promises that can feel binding and constrictive. Amanda was courageous. I liked her already.

          Still, I was not prepared to place all of my trust in her, and towards the beginning of our conversation I feared that she might say that she was very sorry but she had done everything she could and it was just not working. Please don't hang up on me, I prayed. My dignity is the most frequent casualty of my chronic illness, and I was expecting to have to sacrifice all of it by admitting to Amanda, I don't know who to call next. In all honesty, I probably would have just called my mom, who is a pharmacist and is quite good at finding solutions to these sorts of frustrating predicaments when my desperation eventually rises above my idolization of independence. Or perhaps I would have called a New Orleans friend and fellow public health major, to vent for a moment about how capitalistic and unjust our entire health care system is and how much I want to be a part of changing it but how very tired I am. Maybe I would have just kept hugging my knees to my chest, sitting in the exact position that my physical therapist has told me is the worst for the arthritis in my hips, waiting to see if my phone would ring and someone on the other end would excitedly reveal, "You won't believe it! We found the prescription and the order and your Humira is on its way to you!" 

          I don’t know who to call next. This sentence fluttered around my mind while I repeated helplessly to Amanda, “No, I’m sorry, I don’t know,” as she continued her persistent investigation of why shipping a refill to me was becoming such an impossible process, asking specific questions based on information I did not have access to and could not easily obtain. 

          As I was sitting in the chapel, praying that Amanda would stay committed to problem-solving despite my lack of suggestions regarding what she should try next, I thought of all of my friends who have been put in her exact same position, minus the professional customer service component, during my health struggles. It is so hard to ask for help, and sometimes when my friends offer to be of assistance or ask me how I am doing I find myself saying to them the exact same phrases I was repeating to Amanda: "No, I'm sorry, I don't know." Sometimes these phrases spill out in rhythmic sequence and sometimes I disconnect them from one another. I thought of how many of my friends have swooped in and stayed with me despite my own lack of helpfulness, and despite not being compensated or professionally rewarded in any way for their loving concern. I thought of poor Amanda, who probably just wanted an easy Thursday afternoon with simple customers and simple cases and simple refills and definitely no tears. Amanda probably did not imagine her evening being occupied by a weepy soul with a 1999 birth year who was shakily reading off payment numbers while making the largest purchase of her life thus far.

          I feel like a thunderstorm of complicated hovers above me, showering down on unsuspecting friends and medical professionals, some of whom are not carrying umbrellas with them and many of whom have never even seen the forecast. My closest friends and family recognize particularly stormy days through the tiniest of observations; it is actually quite impressive, even though it sometimes startles me a bit. They notice details such as the paleness of my skin, or how much I am bundling up, or how I am walking or sitting or holding objects, while strangers and acquaintances simply see a healthy girl living a healthy life. In some ways, the invisibility of my thunderstorm is protective and allows me to live a sort of double-life that I admittedly capitalize on when and where I can. Sometimes, the invisibility of the havoc of my life makes it the most isolated storm on the weather radar. I am always grateful for people like Amanda who are willing to wiggle into worn-out rainboots and splash right in, with or without advance notice.

          I don't know who to call next. I am lucky that I almost always have a person to call next, but I do not always know who that person is. I find myself, in my most vulnerable moments, trying to identify who might be able to help or who might be willing to just be. I try to remember who has made me promise to reach out to them if I need something. I try to make quick judgments regarding the practical sincerity of those comments. I try to predict whether my falling apart will cause unbearable discomfort for whomever I burden with the request to bear witness to my storm. I try to determine if I will be granted permission to allow my generally happy soul to slip down into somber communion with my generally aching body for just a moment, and whether the person I call will be willing to sink down into that unsheltered place with me or will instead choose to demand false positivity from me.

          Trying to make predictions during high-pain moments drains a lot of my very limited energy supply. The process of deciding who to reach out to next requires a lot of thought. Sometimes, when I really cannot do something alone despite repeated attempts to pull myself together, I am left with no choice but to make a choice. I have found that the more I let go of the ridiculous notion that I can always rely on myself, the more people I find to trust. They show up every time I need them, bringing with them hilarious anecdotes and the best gossip and inappropriate jokes and outstretched arms and their own tragedies weighing heavily on their hearts and hands willing to hold mine and say, "You are not alone. I promise."

          These swooping, staying saints come in the form of professors who create subtle hand signals with you so that you can let them know if you are urgently unwell or need help, and they show up in friendly dogs that wander around campus with slobbery smiles and the warmest of hearts, and they present themselves as cashiers who say, "I hope tomorrow is better," when they hand you a bottle of Tylenol and give you the discount for a membership you do not have. They make themselves known as church members who call "just to check in" even though they saw you merely one day ago because they remember that your Mondays are horrible, and they appear in college students who email you class notes and offer to replicate the lecture in their best professor voice, and they emerge as phlebotomists who walk all over the clinic to find the pink tape to wrap over your punctured vein just so it will match your outfit.

          I don’t know who to call next. As I clutched the phone, clinging onto Amanda's promise, this sentence broke my heart, a stark contrast against the peppy tune of the hold music blasting through the speaker. I was already in tears at this point (if you heard the copay amount, you would be, too), but I knew that if I was forced by Amanda's giving up on me to say this delicate sentence out loud I would lose my composure entirely. Her voice was full of unwavering compassion, which made the process so much easier but also so much more difficult. If Amanda gave up I could not blame the failure on her inability or lack of tenacity. If she gave up, then what? 

          After the problem was finally identified and solved, Amanda and I cry-laughed together about a more minor detail, the fact that November only has thirty days instead of thirty one (in my experience, anything is funny once you are sad enough), and I offered my sincerest thanks before hanging up the phone. I normally try to tone down my unreasonable level of mushiness a bit, because I am keenly aware that the rest of the world does not always exist in my same state of sappy fragility and I try not to be too imposing, but I am pretty sure that I offered Amanda a full sixty seconds of unreserved compliments. After you spend an hour trying to figure out a pharmaceutical shipment, you realize that life really is too short and you might as well say whatever it is that may pull someone through another minute, day, or month.

          Once I hung up, the chatter and horrid hold music that had been pressed up against my ear disappeared, and I noticed that most of my phone battery had vanished in the process as well. I was relieved that Amanda had finally figured out the company's error. I was horrified by the process. I was exasperated from nervous tension. I was thankful to be in a chapel. 

          I wiped a couple of tears away and pulled myself together. I heard muffled voices through the windows and the comforting yet somewhat disconcerting hum that all old buildings share, the burdensome song of aged wood and stone that have borne witness to weddings, memorial services, and teenagers crying during phone calls with their specialty pharmacies. I only had ten minutes before my next meeting. My hour of productivity had turned into an hour of trying to figure out how I would convince Amanda that I was worth just one more try. “I’m an undergrad,” I admitted at one point, beginning to explain why I needed a New Orleans address linked to my account to be permanently removed. What I secretly hoped she heard was, I am young. I am trying. I am learning to be a productive member of society. I can't do this by myself. I wish none of us ever had to wonder if we are worth the time of a pharmaceutical representative, or of God, or of a friend. But there I was, trying to increase my own human value by proving that I was still malleable, reasoning that if she thought that I was still soft enough to be built up or destroyed by the world then she might be a little less likely to abruptly end an unresolved call or to withdraw from the crucial role she was playing during this hour of my life. You may remember my recent post "Very Funny, God" in which I described going through a similar process with a different pharmaceutical company and another complex prescription.

          I don’t know who to call next. Perhaps none of us do. But sometimes we dial the number or send the text or type out the email anyway. Sometimes we do not even know what we are asking for, or we do not know why we need what we need. I think those are some of our bravest moments, even when they feel humiliating or uncomfortable or terrifying or all of the above. "It feels like we are finally meeting," I remember admitting to a friend a few years ago when she opened up to me about a difficult topic after many months of close friendship. I could tell that she was cautiously permitting me to dip my toe into a puddle that had been pooling up for years under her own thunderstorm, and I was thankful for her small but courageous allowance. Everything was different after that. Everything was better. 

          Considering that the dramatic pharmaceutical company phone call took place in a chapel, I felt slightly obligated to address God for a moment before heading out. “Thank you for Amanda,” I prayed, staring into yellow walls that somehow always manage to make me feel like I am being simultaneously stalked by a thunderstorm and chased by brighter days. “Please let good things happen to her.” I scolded myself even before I finished my request. I do not believe in God the fairy godmother (although I am all for God having a wand and a pink satin bow). I tried to think of better theology to accompany my gratitude and well wishes, but then I gave up. I like to think that God does not expect too much of people with tear-stained foundation, five percent phone battery, and runny noses. “Good things for Amanda,” I prayed once again, a little more assertively due to my own acceptance of what a mess I was. I paused and became a bit gentler, embracing the steadiness of my thunderstorm's rain rather than the shock value of its lightning, “And perhaps that she might have a person to call next when the bad things happen anyway.” 

*Name has been changed for privacy, but I did email in compliments to this employee's company using her real name.