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

       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.

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