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 façade, 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.

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