Sunday, January 22, 2017

Girl Power

The Women's March on Washington, with Sister Marches Around the World
January 21st, 2017

Nasty N'awlins Women gearing up in Washington Square Park
      Women from all across the globe rose up yesterday to protest the continual oppression of women and demand our rights, and I was proud to be one of them. Originally I was planning to go to D.C. for the Women's March through the Newcomb-College Institute (basically a mini women's college within Tulane), but after several discussions with my parents and a brief conversation with one of my doctors, we determined that this was not a viable option for me. Sitting through two 17-hour bus rides in the span of two days and marching in between would have been brutal on my joints, and I was reminded by my surgeon that I am "still very much in recovery." However, I am incredibly proud of the amazing Tulane women who did make the journey up to D.C.! My roommate Allison and friends Ella, Juliana, and Sarah marched with over half a million women in our nation's capital. I was thankful to be able to participate in one of the Sister Marches here in New Orleans, Louisiana.

Left to right: Allison, Ella, Juliana, and Sarah
Thank you for marching!
     The lead-up to the march was stressful - Friday night was rough for me. As I am learning more and more about the healthcare system here in the United States through my "Foundations of Healthcare Systems" public health course and readings, I am becoming increasingly concerned about the major impact the repeal of the Affordable Care Act will have on my life. My biologic medication for the month of January cost almost $2,000 with insurance. While it will not be this high every month, I really cannot find the words to convey just how absolutely ridiculous that is. This medication is the difference in me being in a wheelchair and being able to go on runs in the park. It is the difference in feeling wrapped up in the chains of chronic illness and feeling free. My health is way less than ideal even with it, and I do not want to think about what might happen if it is taken away from me by greedy corporate powers. Our healthcare system is broken and flawed even with the Affordable Care Act, and without it things are only going to get worse. Repealing the ACA removes patient protection from health insurance discrimination against people with pre-existing conditions. Here's a shocker: I have a lot of these "pre-existing conditions," all of which are pretty expensive to treat and put me in high-risk categories that no one would feel comfortable gambling on. I am also extremely concerned about the reduction of birth control coverage. I started birth control in an attempt to deal with anemia of chronic disease, a complication that affects many kids with juvenile rheumatoid arthritis and causes upsetting symptoms such as hair loss and fatigue. Of course, my biologic and birth control are only a few of several medications I rely on to live a life that is as normal as possible. How in the world am I going to get quality health insurance with a diagnosis like juvenile rheumatoid arthritis? How am I going to maintain my high quality of life?

Three incredible women I had
the pleasure of meeting yesterday.
 I would like to be able to look in the eyes of everyone who voted for the current and incoming administration and ask them why they voted to refuse healthcare to people like me. I would like to know why they would prefer that I spend my days locked up in my room with swollen joints than out trying to experience all that life has to offer. I would like to know why they approve of a few milliliters of liquid costing thousands of dollars a month. I would like to know why they voted for someone who very publicly and unashamedly mocked a journalist with a disability that affects his joints to be the President of the United States. So if you are one of these people and would like to answer my questions, be my guest. But please remember and consider that whatever reason you give for the way you voted is more important to you than my ability to function and live a happy and healthy life. Certainly there are many things that are way bigger and more important than just me, but just as a not-so-friendly reminder, emails are not one of them.

Representing with my Planned Parenthood shirt
and Angel of Grace arthritis awareness bracelet.
    I went to bed on Friday night absolutely terrified, envisioning myself learning in the near future that my biologic, the only medication that has a significant positive impact on both my short-term and long-term health, is no longer an option. So when I woke up not feeling well on Saturday, I knew that I had no choice - I knew I must go and march with all of my sisters around the world who are experiencing similar and even much different fears on the basis of their gender, sexual orientation, race, immigration status, disability, and/or religion. I packed a bottle of ibuprofen, my inhaler, my pink medical mask, and a couple of Zofran in my bag, slapped on my arthritis awareness bracelet, tossed my beloved Planned Parenthood shirt over my head, and boarded a packed streetcar full of other nasty women who refuse to normalize this crap. If you would like to learn more about the specific connections between feminism and my health, or if you are curious about the intersection between the Women's March and chronic illness, please check out my post from just over a year ago, "Why My Chronic Illness Demands Feminism," which features me wearing this exact same Planned Parenthood shirt.

     All of the nasty women in New Orleans gathered in Washington Square Park, a green space on the edge of the French Quarter, prior to the march, where we listened to a variety of speakers while greeting each other and bonding over our shared love of human rights (something I suspect men never really do). I adore situations like these, because even though I am pretty introverted I love meeting people, especially people older than I am, and soaking up all of their wisdom. There are so many smart, courageous, passionate, and relentless women in this world, and meeting even just one of them is a blessing beyond compare, so being surrounded by thousands of them at the New Orleans Women's March was just too much for my mushy heart to handle. I went into yesterday's march needing to find the good in the world, and let me tell you, it was there.

     The actual marching process was when I began to realize what a terrible situation this was for my joints. To use one of my most common phrases, I was in a pickle. I had already walked over a mile from the streetcar to the starting site of the march and stood for a long time listening to all of the speakers and cheering on powerful women, so by the time we were actual moving down the streets of the French Quarter toward the Central Business District even the distracting nature of the march could not pull my attention away from my aching hips for more than a few seconds at a time. I was clenching and unclenching my fists and rotating my wrists in hopes of retaining as much range of motion as possible in my upper extremities since I could feel them swelling up, but this became exhausting and I finally gave up about halfway through. I stayed close to the sidewalk, afraid that my nausea would get the best of me. I bit my lower lip and scrunched my forehead in a last-ditch attempt to hold back tears while every step I took caused excruciating pain to slam against my ankles, knees, and hips.


    Perhaps some of you are reading this and thinking, "Hey, Rach, maybe going to that march wasn't the best idea, it seems like maybe it didn't go so well for your body."

     You're right. I am too sick to be doing something like this. I am too sick to be marching through the French Quarter in a germy crowd of people on a warm, rainy NOLA Saturday. I am too sick to be risking by ability to attend class this week simply by putting one foot in front of another and coming into close contact with other human beings. You're right. But guess what? I have to do this, because marching will be much less detrimental to my health than having my treatment revoked because some rich and healthy people who unfortunately hold a lot of power in this world have decided that stripping me of medically necessary injections that reduce my pain to mostly bearable levels is a good and moral idea. So yeah, I marched. Yeah, my arthritis pain level right now is probably the highest it has been since I started college. Yeah, getting out of bed today felt like running a marathon. Yeah, I skipped breakfast this morning because my hips hurt too much to walk to the dining hall. Yeah, I'm salty about it, because I should not have to march for such basic human rights. But there I was, and here I am. If you want me to feel better, stop suggesting that I take some extra time to rest and start calling your congressional representatives, advocating for people with disabilities, supporting funding for medical research, and voting for politicians who actually care about whether or not I can access my medications and the specialists who prescribe them.

     The primary reason that I write this blog is because I believe in the power of storytelling. I believe that sharing our experiences makes our local and global communities stronger. Publishing posts that detail the many difficult moments of spending my life from age eleven onward fighting against rheumatoid arthritis is not typically cathartic or therapeutic for me. I do not make money off of this blog and I often feel overwhelmed by the prospective of sharing so much of my life with whoever feels compelled to click on this link. But stories are powerful. That is a fact, and that is what I repeatedly remind myself when I feel reluctant to share parts of my own story. I wish I had realized this early. I wish I had realized it a few years ago when friends, family members, and teachers were begging me to let them into my world, one that felt like a black hole to me at the time. I wish I had allowed them to view my story and demanded substantive change in the way people with chronic illnesses are treated in this world. If you have a story to tell, if you have a reason why this administration is so concerning to you, please share that story, at your own pace and when you are ready. There will be thousands of nasty women like me here to listen and respond. And if my story has ever meant something to you, I am pleading with you to channel whatever it is that this blog has given you at some point over the last year - hope, despair, joy, or concern - into concrete actions aimed at protecting healthcare and advocating for women with disabilities.

     There were a bazillion children at the New Orleans Women's March, and I always have such admiration for parents who bring their kids to these sort of events, because toting kids around can be logistically difficult and protests can be chaotic. The NOLA march kicked off with a jazz funeral for Lady Liberty (have I mentioned how much I love this crazy city?), and as we found ourselves in a gridlock-induced standstill while waiting for marchers to begin filing out of the park gates, I listened to a young mother explain to her three- or four-year-old son who Lady Liberty is and the symbolism of having a jazz funeral for her. I do not know who that mother is and I do not know who that child is, but in that moment the future looked so spectacularly bright. Later in the march, I found myself walking next to a set of parents who were pushing a very young child in a stroller while their six-year-old daughter danced through the streets of the French Quarter, clearly feeling strong and empowered by the presence of so many other dedicated women. Every few minutes, she would lift up her chin and scream at the top of her lungs, "Girl power!" and the rest of us would scream it back in solidarity. Leading all of us made her feel so special, impactful, and important. I wish that she, and every other little girl, could feel that way for the rest of her life. Girl power gives me hope in a world in which boy power has consistently failed. Girl power gives me a reason to dream. Girl power makes me want to have a daughter one day just so that I can remind her of her worth and value in this world. Girl power means that I can tackle even the most overwhelming of setbacks. Girl power meant that my shaking limbs but loud voice could make it through that march.

     After the march reached City Hall, I stayed for a bit to cherish the time with so many amazing (nasty) women and listen to more speakers. I had the privilege of meeting other women for whom the repeal of the Affordable Care Act is a very real and pertinent medical concern, and we shared our fears with each other and promised to keep on fighting, no matter what happens. We discussed how far our country has to go on compassionate policy toward people with illnesses and disabilities, even if by some miracle the ACA is allowed to stay intact. There are millions of Americans who will experience the tragic effects of an ACA repeal in even more drastic and negative ways than I will, and I am advocating for them just as much as (if not more than) I am advocating for my own health. I am privileged to have two rheumatologists, live in areas with excellent healthcare, and have a pharmacist mother who understands the system. I have a loving family that is willing and able to make sacrifices for my health and friends who stick with me even when times are tough. No one should lose their life to policy. Congress should not be allowed to order the deaths of thousands of people who just want to feel better. What can save us from this hopelessness? Girl power.

      After exchanging some email addresses and phone numbers with likeminded marchers, I made my way back to the streetcar, accompanied by an afternoon New Orleans drizzle that luckily did not turn into downpour until after I was onboard. Usually during peak hours the streetcar is a real struggle for me, because if I take a seat people shoot me sharp glares suggesting that I should leave them for people "who really need them." Having an invisible illness means lots of judgment but very little ability or desire to explain myself, and even though I know that I should probably not give in to this lack of empathy, I usually just stand because the glares stick with me for longer than the joint pain. I am convinced, however, that God was on my side yesterday, because I managed to spot an available seat next to two compassionate women on each of my trips, even though the streetcars were packed and most people were standing. I like to think that Jesus agrees with my conviction that if people are going to rip my health insurance out from under me at some point, the least they can do is save a seat for my aching bones.

     When I returned to campus after the march and after standing/walking for upwards of six hours, I limped to the dining hall, ate a banana and some cantaloupe (you really just have to go with whatever your stomach wants when you're nauseous), took a cold shower in the hopes of calming my fiery, swollen joints, and collapsed in my bed. I sent emails cancelling all of my activities for Sunday (today), and even though I feel horrible about it, I know that I am doing the right thing by focusing on rest and recovery. I am going to do my very best to attend all of my classes tomorrow, but we will just have to see how that goes. As I mentioned in my most recent blog post, sometimes I have to stay back for a little while, and I am slowly learning that that is okay, too.

      The road ahead is downright terrifying. To my many sisters out there who are scared of the changes (or lack thereof) to come, I have your back. And to everyone reading this, I hope that we will move forward by taking each others' hands, calling our representatives, sharing our stories, seeking out the stories of people leading much different lives than we are, and becoming safe spaces for hurting people.

The future is female. 
Women's rights are human rights.
My liberation is bound up with yours.
We are stronger together. 

Friday, January 20, 2017

Syllabus Week: Arthritis & Education

     Syllabus week is a time of fresh starts, renewed academic excitement, and a whole lot of potential. It is always incredibly busy, since we are all trying to figure out our new courses and schedules, make friends, decipher how difficult each class is going to be, predict our GPAs, and become involved in new student organizations and community activities while simultaneously settling back into life in a wild city.

      With rheumatoid arthritis, syllabus week is a bit different. It consists of all of the above activities and celebrations and stressors, but on top of that is the necessity of explaining rheumatoid arthritis to every professor I have. I am only four days into the semester, but I have already spent upwards of two hours scheduling appointments with all of my professors, submitting accommodations requests, and actually sitting down with my instructors and going over all of the ways in which my body is failing me while simultaneously attempting to assure them that I am a competent student and hard worker.

       The only silver lining to all of this is that I often see a gentler side of all of my professors before the rest of my peers do. While my professors are still focused on maintaining the appearance of strict classroom environment and rigid course structure, my conversations often bring out of hiding a very different side of them, a side full of empathy and compassion. Ninety-five percent of all of the teachers and professors I have taken classes with in middle school, high school, and college have been nothing less than completely accommodating and supportive. Teachers have often been my saving grace when the capacity of my peers to understand chronic illness and all of its complexities has been understandably limited. As my mother reminded me in high school, accommodating my medical needs is "not a matter of being nice, it's following the law," yet we always remark on how so many of my teachers went way above and beyond these simple legal requirements and made school a place that I wanted to be even when my body did not want to be there. I genuinely do not know how I would have made it through middle school without the help of four excellent sixth grade teachers (all powerful, influential women that I am lucky to have encountered) who refused to let me slip through the cracks and supported me even before my condition had a name and before all of my 504 paperwork was processed.

      It feels as though I have explained juvenile rheumatoid arthritis to my teachers and professors a billion times already, so the logistics of it are much easier now than they were at the start of my illness, but it is also a much more self-directed process now than it used to be. During middle school communication flowed primarily between my parents, guidance counselors, and teachers, especially before I was given a concrete diagnosis, and even in the ninth grade a lot of the communication was between my parents, a guidance counselor, and a core team of teachers. I am still getting used to revealing what feels like very personal medical information to people I have never even seen on campus before. The first thing my teachers know about me is something that is wrong with me.

Tulane University
PC: http://www2.tulane.edu/armyrotc/index.cfm

       There is always that persistent, irrational bone in my body that warns me that coming clean about my health might result in someone not wanting me in their class. After all, I realize that my accommodations are not exactly convenient for people. The process of filling out Scantrons, which requires finger dexterity that most people take for granted, precise control over a small piece of graphite, and the ability to apply sustained pressure between the pencil and the paper, results in immense pain for me. I was keenly aware throughout high school that my teachers were not being compensated for the additional time they spent bubbling answer sheets for me, even if it was the law.

       I try to showcase a bit of responsibility in these matters by addressing my medical accommodations with my professors early on. I always appreciate watching my them stumble to find some sort of connection they can share with me over my illness, a promising display of empathy. I appreciate when they ask questions, because I know how awkward it can be to inquire about someone's medical issues, and it means a lot to me that they have decided that braving that stormy territory is worth the risk. I also appreciate meetings I have had with instructors during which it has become evident to me that they have already embarked upon some preliminary research on my JRA prior to our conversation. Most of the teachers who have done this in the past have not intentionally revealed their Google searches to me, but when they earnestly ask, "Would it be helpful for me to have you pass out papers so that you can move around during class?" or "Are the mornings usually worse?" I immediately know that they have examined the ever-popular Arthritis Foundation Juvenile Arthritis Teacher's Guide, and it is a relief to realize that I am speaking with someone who has some background knowledge, however minimal it may be.

      I still do not know how to convey to professors, or really to anyone, how wide-reaching arthritis is and how much it shapes my everyday life. The most honest thing would be to tell them that arthritis is, in some ways, a misnomer. Sure, there is joint pain and swelling, but at the end of the day arthritis is so much more than that. Arthritis is spending hours crying over hair loss that may or may not be visible to your friends. It is living in a world that seems to be created for everyone except you. It is wondering if you talk about it too much or not enough. It is being on medications that lead to having strep throat for a month straight. It is making desperate phone calls to rheumatologists in hopes of securing an appointment any sooner than six months out. It is asking academic advisers if any of your dreams are actually realistic. It is arguing with your mother over your use of chemotherapy drugs. It is wondering whether teachers dread having you in their classes. It is panicking every time you feel a pinch of intense pain and worrying that it might be the start of a flare.  It is having to ask your classmates to push your wheelchair. It is tearing up outside an academic building while receiving a phone call about the cost of your medication. It is throwing up repeatedly in the middle of the night and then attending school the next day as if nothing ever happened. It is sleeping for nine hours a night and taking naps during the day and still being utterly exhausted. It is saying "no," to traveling to D.C. for the Women's March, even though there is nothing you want more. It is panic attacks in the middle of the night when the pain prohibits sleep. These experiences are common within communities of people living with rheumatoid arthritis, but impossible to convey to the outside world in a manner that does not seem whiny or exaggerated.

     I walk around feeling like a pro on arthritis sometimes - after all, how could I not? I have dealt with it every single day for over six years. That should be enough to qualify me as an expert. I have read the studies, read the blogs, and attended the events. Yet in navigating my education as a student with arthritis, I have often been left feeling as though everyone else is way more prepared than I am to manage this disease. I came to school one day during my senior year on a particularly rough morning, eager to turn in a research paper I had worked very hard on but also bent over with pain and fatigue and exhaustion. I turned it in immediately upon arriving at school, before classes even started, and I was way too weak to hide any of my pain. "Rachel, go home," my teacher urged me after accepting my paper. Because I am the way I am (obnoxious, I know), I refused. After a bit of discussion about the content of my paper that left my eyes full of tears and my hands gripping a table for support (my energy level was zero at the time and standing to talk caused ridiculous pain), he promised, "No one is going to think any less of you if you go home right now."

     For the first time in possibly ever, I dragged my broken body back to my car in the student parking lot and drove home before the first bell rang. The assistant principal whose duty it was to stop students trying to leave before class literally cheered me on and congratulated me on my decision to take the day off. I suppose being applauded for leaving school by an administrator is a pretty good indicator that you are too sick to be there. I like to think that my attendance is still excellent when compared against the state of my medical condition, but my teacher's promise has stuck with me, and I have since realized that attending class on severe flare days can actually be counterproductive. I have also accepted that I should at least sometimes heed the advice of people I trust, even if those people have never dealt with rheumatoid arthritis, because there are many people in the world with much more wisdom who are willing and able to guide me through these difficult decisions.

      Taking days off, especially when I am dealing with a severe flare, is absolutely crucial. As I have slowly come to learn, it does not make me a slacker or a poor student. Yet the mysterious algorithm directing when I should and should not be at school or in class still seems very unclear to me. In a way, being at school can help; I get to try to concentrate on topics other than my joints, and I get to feel like a real person capable of doing real things. The loneliness of staying home is immense; not only do I miss out on important social events and interactions, but I also feel isolated on the basis of an illness that none of my local friends share. Additionally, if I stay home on every day that I do not feel well, I would literally never go to school, and that is not a realistic option.

      Fortunately, I have good friends who have helped to relieve the burden of staying behind for me. For example, Kayla came to my house for lunch once on a day when I stayed home from school, and another time she came over and watched "Ratatouille" with me, because what else would one want to do on a sick day besides watch an animated movie about a cooking Parisian rodent? My dear friend Amelia came over a few times during lunch as well, delivering homework and laughter and updates the happenings at our high school. There is nothing more uplifting on such humbling and upsetting days than to see close friends and be reminded that life goes on.

      Perhaps this is too anecdotal to create a generalization out of, but I like to think that there will always be good people in the world, no matter where you go or what situation you find yourself in. Even if you are being harassed for not walking fast enough in the hallway, there will be teachers who kindly allow you to take reading quizzes verbally to spare your aching hands. Even if you are being questioned by a classmate on the legitimacy of your need to type out your notes despite years of medical documentation, there will be teachers who toss heat packs in their personal microwaves and wrap your hands up for you. Even if you are feeling defeated by the prospect of writing out math problems, there will be teachers who will walk you to your classes on flare days, sitting on disgusting high school floors to take breaks with you along the way. Even if you are feeling all alone in your fight, there will be teachers who check in on you even when they know you will barely answer. Even if you are being criticized for your constant tiredness by more energetic students, there will be teachers who allow you to nap in their offices. Even if you become horribly overwhelmed and the world seems to be playing a cruel trick on you, there will be teachers who gather up all of your make-up work from each of your classes. Even if you are nervous about the long walk from one class to another, there will be professors who decide just to move the entire class to a more convenient building. Even if you are hurt by the ill-placed comments of people you consider friends, there will be teachers and professors who make you feel valuable and capable and good at something.

      Being a student and being a patient do not always fit together smoothly. Trying to fill both roles sometimes leaves me feeling like a puzzle piece from the wrong box or a Scrabble "word" that may or may not be in the dictionary, but I truly believe that these experiences bring out the best in each other. I hate being the "sick" student. I like to think that my friends and teachers and administrators from middle and high school remember me more for the person I am than the condition I have, but it seems that there is no good way to determine what the reality of other people's perceptions really is, especially on a scale as small and insignificant as this one. Perhaps I will have to come to terms with never knowing.

     For now, I am going to continue being a student, and Lord knows I am going to continue being a patient. It is a painful but immensely effective learning experience that I simply must embrace.

Saturday, January 14, 2017

(Not So) Funny Girl

     My favorite chronic illness blogs are the ones that seem brutally honest and unapologetically real, the ones that force me to confront things about myself that I never previously gave thought to, and the ones that make me feel fully human. I wish I could always write like that. I wish I could be that open, but the truth is that I am not, not even in my everyday life with my closest friends. One day last year I was talking with a dear friend the day after a not-so-great rheumatology appointment. After recounting what had happened and the changes that took place, I smiled, stared out the window of my car, and said, "But it's really alright," laughing lightly and desperately hoping to spare her the discomfort that comes with knowing that someone you love is struggling. Of course, at the time I thought I was making a lot of progress by telling her this and was proud of myself for even bringing it up (however nominal that may seem), because normally I just would not say anything. I suppose it was a good start toward transparency, but frankly it was not enough, and I think we both knew that. Joking about whatever I am experiencing with my health is something I do quite often, and it has certainly harmed me at times. I once wrote out an in-class essay during my junior year that I should have typed, promising the teacher that I was fine and laughing off the painful symptoms I knew writing would cause until she essentially threatened to confiscate my pencil after witnessing what I thought was a discreet attempt to hide a few runaway tears. It turns out, I am not quite as funny as I sometimes think. My insistence on the hilarity of my medical situation is not always shared by those who know me well.

One of my favorite activities:
hanging out with my mom
     Last year when I assured my friend that I was alright after dumping out half of what happened at that appointment, she refused to laugh along with me at how crazy my life can be. Instead, she bravely said, "That's actually really sad." I was caught off guard and struggling to find an appropriate response. Could I maintain my giggly fa├žade, or would I be forced to crash and burn? After a few seconds of reflective silence my friend gently but emphatically assured me, "You know, you don't have to laugh about it."

      I am all for using humor to cope with illnesses, and I understand that different people cope in different ways, but the reality is that often when I use humor I am using it as a way to escape having a genuine conversation about a topic that greatly upsets me, flashing up jokes and false lightheartedness as a shimmery distraction against something much more dark and secretive. I pretend to think (and even convince myself) that the insane things that happen to my body are hilarious so that I never have to confront how sad they make me. I laugh about having a tonsillectomy, swollen joints, eye concerns, severe jaw pain, and anxiety regarding my health because I am so uncomfortable with the idea and process of actually describing to someone the negative effects of these challenges on me as a person, not just me as a patient. While I certainly clam up and go silent much less than I used to, I am now realizing that in many ways I have just used laughter as a new-and-improved protective shell around myself that really does not protect me from much at all. Perhaps it is a better coping strategy, or perhaps it is just part of a larger struggle to connect with people who do not share my health experiences. Perhaps it is both. People tend to mimic whatever emotion the person they are talking with displays, and so I attempt to display laughter in hopes of making people feel happy even when discussing something that typically makes people sad and squirmy. I am thankful for friends who call me out on this and see through my somewhat dishonest take on what I am dealing with, even though it sometimes makes for a moment or two of tension.

      To be clear, my health issues are sometimes absolutely hilarious, and I am a very lucky person in that I spend a great deal of my time smiling and laughing and thinking about how much I love the universe. Yesterday I had to explain to my ENT surgeon that despite the way I was describing my latest jaw issues, I actually do eat a wider variety of food than just blueberries and blackberries. At appointments, my rheumatologist and I frequently discuss Bourbon Street, ignoring the eye rolls of all of the nurses who would much rather be focused on the amount of fluid in my joints. During my junior year of high school, I had a huge arthritis scare with my ankle during an important district-wide performance that sent me into a horrible panic attack, which led me to an incredibly awkward conversation with a priest in Chipotle (while wearing a stage dress and full makeup, mind you) while we waited for the bathrooms. During the sixth grade, my social studies teacher helped me duct tape heat packs around my knees when we could not figure out how I could possibly walk with them on. The peculiar situations my arthritis has put me in have often left me dying of laughter, and there is nothing wrong with that.

      The past few weeks, however, have included way more forced laughter than genuine amusement with how my health is progressing. Do not fear - I have been dancing around in the kitchen, rocking out to Hannah Montana in my car with the windows down, and hanging out with friends and family. I have been playing board games, drinking vegan mango kale smoothies, and snuggling with my pets over endless episodes of HGTV in hopes of allowing my throat to heal. Yet at the same time, I have become keenly aware of how long it has been since I have interacted in-person with someone my age living with juvenile arthritis. I have felt very "other." I have spent a lot of time thinking about how my arthritis is going to affect my life in the long-term. I have spent a lot of time wondering who I would be without it and wishing that I could see a glimpse of that nonexistent girl, even though I realize that my imaginings have no significance or purpose. I have shed a few tears wondering what lies ahead and I have been disappointed in myself and I have gone to bed hugging painful, tender elbows and wrists around painful, tender knees. I am not thrilled about how much a disease like arthritis, that sounds to any reasonable person like it would be localized to my joints, has ravaged my entire body. When I woke up yesterday morning after a nightmare, I felt like curling up on the wooden floor in silence for a few years in hopes of repairing my broken body and relieving my endless fatigue, but instead I had to muster up the motivation to go to a doctor's appointment. I ended up having a good and highly productive day, but getting to that point was not a walk in the park.

      I think one of the reasons I do not always share as much as I probably should on this blog (although I realize to some of you it may already seem like a lot to put all over the Internet) is that I desperately want to give you all a happy ending. I want you to walk away from my posts feeling fulfilled. For those of you who have been so instrumental and encouraging in my struggle with this lifelong disease, I want to make you proud. I do not want you to worry about me. Perhaps that reflects a degree of self-centeredness, thinking that if you know something is wrong you might spend valuable brain energy and time considering my wellbeing. But I am not oblivious to the stress my health sometimes causes the people closest to me, and I do not want to let anyone down or make anyone feel like they have failed at providing comfort or support. I have no desire to let myself down either, and feeling anything sad seems so much more real when it is written down and published, so perhaps I just do not want to confront that on a personal level.

Assembling my surgery squad
prior to my tonsillectomy.
     The truth is, my story does not have a happy ending or a sad ending. It is not good or bad, a comedy or a tragedy. It is just my life. It is constantly flowing and changing, rushing down quick, flowery waterfalls and wading in slow, muddy rivers. I am only 17. There is no end to my story in clear sight. Why am I so afraid of documenting the middle? The middle of life is where all of the interesting stuff happens. The middle of life is where we are human, and I firmly believe that humanity is an experience to be shared.

     I like to think that I am becoming a little bit better in regards to vulnerable blogging and living. "I Will Follow You Into the Dark" is probably one of the most honest posts I have ever written. For the most part, I no longer answer legitimate inquiries into how I am feeling with a dismissive "I'm fine," although that is still often how my response begins. I recognize mistakes I have made in communicating about my illness in the past. I seek balance even though I always tend to gravitate toward extremities. I try to focus less on what people will think of me and more on being a compassionate, relatable human being. I do my best to remind people that they are not alone in their frightening thoughts or the heavy feeling on their chest.

     As my tonsillectomy recovery process was improving, I finally got to spend some quality, pain medication-free time with my friend Faith, who, as many of you know, is one of my very favorite humans. After a fun night of Netflix and pasta-making and apple slicing (side note: absolutely nothing in this world makes me happier than slicing an apple) and discussing the strange experience that is American college life and just generally doing normal teenage things, I confessed to her, "I feel like a piece of meat," and I was far too exhausted to even try to turn it into a joke. After being cut into, examined, sedated, prodded with needles, and discussed as a file at rheumatological hospital meetings for six years, it is easy to feel more like a piece of flesh than a person. I spend a larger-than-average amount of time thinking about all of the physical aspects of who I am as a person, and while I like to think that I can be introspective as well, I feel like my physical health drains so much of my energy and time that I am reduced to simply a clump of cells trying to stumble through life in as little pain as possible. Perhaps that is why spending time with people has meant so much to my hurting heart lately - I simply need to be reminded that I am more than meat.

     I absolutely adore laughter. I love laughing, I love seeing people laugh, I love hearing people laugh, and I love making people laugh. There is nothing better than laughing with someone and feeling all of your worries and cares float away for a moment. But a love for laughter cannot always be used as a Band-Aid for painful situations. It does not mean that I have to laugh any less, but it does mean that I have to work harder at being honest when things get rough and when my body feels like meat and when I want to curl up on the floor. The most beautiful moments I have ever experienced are those in which a fellow human shares something deeply personal and relatable. I have been given so many of those moments, by friends, teachers, family members, and strangers. Today at a craft store during a brief exchange with another customer, he revealed to me that today is the "best of day of [his] life." It is time that I give more moments back to the people I encounter as I go about trying to thrive in a world and body that are constantly changing, both joyful and mournful, and I cannot do that if I am smothering all of the very real, painful, and vulnerable moments of my life with laughter. Maybe it's time to stop smothering, stop pretending, and start living.