Wednesday, September 20, 2017

Trying to Recover

     So here goes a long story with way too many details. Sometimes I feel like this blog could be titled, "Times I Cried," but if there is one thing we should be using the Internet for it is empathy, or at least that is what I am telling myself to convince myself that it is okay to write down and publish this.

Shout out to my parents for taking care of me tonight!
      I went to bed on Saturday not feeling well at all, and by Sunday my teeth were chattering as I piled myself under 3 blankets and curled up on the couch next to my mom, feeling unbelievably cold. My fever rose up to about 102, which is quite high for an immunosuppressed girl who usually hangs out somewhere between 96-97.

      On Monday, I went in with my mom to work because I had a morning appointment with an oral surgeon. Even though I was feeling absolutely awful (read: sore throat, congestion, head and neck hurting, nausea, fever, body aches) I was not about to reschedule this appointment.

      I have been issued some repeated warnings throughout the past year about the rheumatoid arthritis and damage in my jaw. When I saw an ENT in New Orleans for an unrelated problem, he pressed his hands on the sides of my face and asked me to open my jaw and said, "If I wasn't looking at you, I would think you were 90 years old. This sounds like the jaw of an elderly person." Ya girl was 73 years away from 90 at the time, so this was very concerning, but there were so many crazy health circumstances stemming from the Strep Throat Crisis of Fall 2016 and the Allergy/Asthma/Sinusitis Crisis of Spring 2017 that I had to make choices about which issues to aggressively address. The ENT had me put my hands on the sides of his face while he opened and closed his jaw so that I could hear and feel the difference and compare it to my own. "You have a nice jaw," I said sadly, and we both laughed even though it was not funny.

     I informed my home rheumatologist of the ENT's comments over spring break, and he ordered an MRI that showed torn cartilage and eroded bone on both sides, as well as a tear on one of the discs. At the JA Conference in August, I learned that the pain of TMJ arthritis is often not as severe as the damage being done, and this certainly rung true for me. I have pain in my jaw, but I did not think it was as damaging as the scans showed.

     When I went to see my dentist/orthodontist this summer for a routine cleaning, I was surprised to hear that seeing an oral surgeon needed to be a priority, and cried as I laid in the chair, confessing to my orthodontist, "I'm just overwhelmed," with the sort of honesty that only comes when it is completely unplanned. The idea of surgery felt crushing and unexpected, and so I did what any responsible person would do in this situation: I sobbed to my parents over the phone, drove to my friend Faith's house, and convinced her to watch "Christian Mingle" on Netflix with me. The day is a bit blurry (literally, from my tears) looking back, but I think at some point I fell asleep on Faith's couch from emotional exhaustion. My dad took the next day off to go with me to an appointment, and afterward we went out to eat Lebanese food for lunch and then we went to see "The Big Sick" at a movie theater with the hope of cheering me up and distracting me from what we knew would be a scary journey ahead with my jaw. We did not realize that this movie would be about a young woman with autoimmune arthritis, but hey, we did our best.

      At the oral surgery appointment, we decided to do some bilateral flushing out of debris (sounds lovely, I know) and intra-articular (straight into the joint) steroid injections, a procedure which will be done under general anesthesia on the first morning of fall break. If you are looking for fun fall break ideas and would like to watch a movie and drink smoothies with me while I recover, please hit me up. I tend to be very emotional after anesthesia/when on painkillers, so if you ever need someone to cry while watching "America's Next Top Model" with you, I'm your girl.

     So anyways, in the car on Monday morning we realized that I high-key needed to see a primary care doctor because I was so weak and completely not myself. Thankfully, we were able to get in quickly, but we had to leave before I could have my bloodwork done to go to the oral surgeon appointment (feeling #blessed that campus health is connected to UNC Hospitals), where I couldn't be examined because of my acute illness. No one really wants to get near your jaw when all of your lymph nodes are enormous and you're wearing a medical mask.

     I went straight back over the bridge to student health, where I waited for my blood to be drawn. Normally, I try to make friends, be cheery, smile at people, etc. when I am in waiting rooms, but let me assure you that yesterday I was doing the impossible: making that waiting area in the hallway an even bleaker place to be. I was too weak to even sit up, so I was sort of halfway laying down in this chair, with my heavy head resting on my hand and a white disposable mask covering the majority of my face (we switched them out so I could have jaw x-rays taken). The phlebotomist kept assuring me that they would be ready for me soon, and when I was finally called back he immediately leaned the chair all the way back because he could tell I was not feeling well and certainly did not need me passing out.
    After the blood draw, I immediately returned to student health, and this is the point of the story where I really started to lose my mind. The mono test was negative (thank the Lord, because I have no idea how I would have dealt with mono fatigue and JRA fatigue together), my white blood cell counts were all messed up, and we knew there was a sinus infection but we were unsure of what else was going on. More blood tests were ordered, as well as chest x-rays to rule out pneumonia. The word "inpatient" sent me into a spiral of tears, and when my doctor and I returned to my dad in the waiting room (my parents swapped on/off throughout the day) my white paper face mask was damp. The idea of being admitted is frankly very frightening when literally all you are trying to do is go to class and hang out with your friends, but luckily I was allowed to go home. This is the side of juvenile arthritis that it seems like no one outside of the disease understands: the severity, the fear, the pain. I have been swimming in this ocean for a while now, but the currents are still just as unforgiving.

    The blood tests ordered were to test for an infection in my bloodstream, which, as you can guess, is not an ideal situation. It turns out that the blood draw process is a little bit different when you are testing for sepsis. Instead of an alcohol swab, they have to use the orange antiseptic that is used for surgical procedures to clean the area, and they have to draw from two different locations, because "blood circulates" (that is the elaborate explanation I was given by my second phlebotomist of the day). After having the chest x-rays done and putting my name in again in the labs area, I was feeling very nervous. I had already had blood drawn that day from my right arm, where my only good vein is. This right arm vein is reliable, easy to find, and generally easy to puncture. I love it, phlebotomists love it, and phlebotomists love that I point it out for them. Overall, this vein and I have a great relationship.

    I assumed that the first of the next two locations would be my left arm, but it was the second of these locations that was causing me stress. I absolutely hate needles going into the backs of my hands (when I had my tonsillectomy in December I insisted that they put the IV in the good vein on my right arm), and I wasn't sure where else they might try. I tried to imagine all of the veins in which they might stick a needle, and there wasn't one place that sounded particularly comfortable.

    When I was called back, the phlebotomist offered to use the same puncture site as my blood draw from earlier that day as one of the two locations. To be honest, I had no idea if this was a good idea, but she suggested it and it did not involve some strange vein in my foot or stomach or anything so I was all for it. Plus, at this point I had realized how serious the infection was and was determined to get some answers, and I was already crying so I basically had nothing to lose. I was so sick, and all I wanted to do was go home.

     She scrubbed the orange antiseptic on my arms and promised me that it would wash off, although I still have rings of orange around my inner elbows today even after the most vigorous shower scrubbing my weak body could manage, so I will have to get back to you all on the validity of this claim. She stuck me twice, which unfortunately included one stick in which I involuntarily flinched so she had to move the needle around in my arm to search for the vein, and my blood went into some weird containers that already contained some other liquids. I finally left the student health center/hospital after almost five hours, equipped with instructions to rest, drink lots of liquids, take a strong new antibiotic, and drive straight to the ER if anything got any worse.

Antibiotics 2.0
    Luckily, I think I am on the mend, but it has been a bit up-and-down as far as my symptoms, and I am still in a lot of pain and feeling extremely weak. We are still waiting on some of the bloodwork to come back, but we are treating in the meantime. My parents have been very accommodating and helpful, and I am lucky to be in such good hands. When my sister Hannah came home on Monday and asked me for a rap I used to memorize the amendments to the Constitution, I joked in a painful whisper, "I would help, but I might be septic." Yesterday my mom stayed home with me and we watched "The Sound of Music," which I am convinced has more healing properties than antibiotics. My dad drove me into school today, and I was able to go to my two Wednesday classes, which was a relief. I was planning on staying the night in the dorm, but after being on campus for six hours I realized that I needed to come home and try my best to continue recovering.

    In the two-hour lunch gap between my classes today, I went back to my dorm room and laid down on my bed, covered by my favorite white blanket. I was planning on reading or going through email on my phone, but instead I just laid down and set an alarm. I was sleepy but couldn't fall asleep. I thought about what a social worker and patient at the JA Conference taught the young adult group, about feeling the pain instead of trying to block it out all of the time. And so I felt it, in my ankles and my knees and my hips and my wrists and my throat and my jaw and my neck and my head. I felt partially dead, like I was only half as alive as the people whose footsteps I heard in the hallway.

    I am trying my best to recover. I don't know why it is so hard, or why my body can't just fight better. I still see all of the beauty in the world and am not feeling particularly sad, just frightened and disconnected from a campus that I am just now starting to call home. I wonder when this infection will be gone. I can't believe that I am on my thirteenth day of antibiotics and still have seven more days to go. Today I found myself caught up considering what my senior year self would think if she saw me. She would probably be frightened. My eyes are a bit sunken in and my lymph nodes are all swollen and I look sort of washed out. My whole body hurts and I do not feel like a college student, but rather like someone who is in a world none of my college friends have had a glimpse of, where the phone calls I receive are from nurses and I check my patient portal like it's Twitter.

     I don't have any particular desire to have kids in the future, but if I do, I will tell them these stories of being sick in college. I will tell them how hard it was and how nice people are and how many tears I cried in front of medical professionals and family members and even strangers. I will tell them that even if they are passed out in the car with gauze bandaged around both arms and a wrist brace and a medical mask, they can still be strong and tough and fierce. I will tell them to compliment their phlebotomists, even if the pokes hurt, because they don't get nearly enough compliments. I will tell them to imagine themselves twirling in the Alps one day, having an unapologetic Julie Andrews moment, when their world seems to be disintegrating. I can feel myself growing wiser, in the strangest of ways, yet this feeling has come married with an unwanted awareness of my own mortality, and a deep understanding of how fragile our bodies really are.

     Mostly, I just miss my friends, in the simplest of ways. I want to hear about their days and hang out with them and laugh with them. I live so close to campus but I feel like I am falling behind in making connections, considering that I have to cancel every other commitment due to an infection. When I am around them I feel quiet and limited, because I don't know how to explain how broken I have been these past few days, or if that is even a narrative they are interested in hearing in its entirety. Juvenile arthritis is a cruel disease, painful in every sense of the word.

    I am lucky to have people to miss.

Monday, September 11, 2017

Longing

      The world is not ending. This is the sentence I repeat to myself when I catch the albuterol (a medication that reduces inflammation in my lungs) making me uncontrollably nervous and shaky. I push panic back, reminding myself that it is just the medicine making me feel this way, and try my best to think rationally and calmly.

Hawaii 2016

     My world is not ending, but it is spinning a little chaotically right now. I made it to September 6th before catching my first college infection, and quite frankly I was hoping to make it much further. I went home for the weekend to rest and heal, clearcutting my entire schedule, destroying my social life in the name of recovery. It was an agonizing decision, as small as one weekend may seem. The first few weekends of the semester are so important in terms of establishing friendships and getting to know people. I decided that going home was necessary given my level of pain, but I still felt horrible sending all of the cancellation messages to people who had already carved out time in their busy schedules.

     It's a drizzly Monday afternoon now, and my stomach is recovering from a night of nausea (thanks to the antibiotic I am on) while my joints are struggling to function given the chilly weather and the havoc the rest of my body is going through. I woke up feeling very weak, like if someone nudged me lightly or handed me a textbook I might collapse. Breathing is requiring an incredible amount of energy and effort. My immune system has zero fight left in it. Showering this morning brought tears to my eyes, although I am not sure what percentage of my distress is attributable to pain and weakness directly and what percentage is reflective of my frustration. I am working on a plan to reduce my exposure to germs that goes beyond the obvious measures like hand washing and avoiding sick people, but the logistics of this plan are unappealing and overwhelming.

     My dad kindly drove me home after my last class earlier today, so that I can rest and then return to campus for my classes tomorrow. It is such a relief to have home so close by, but I am definitely feeling the isolation that comes with being seriously ill in college.

Canada 2012
     I am meeting with two surgeons in the next week and will finish what I hope is my only round of antibiotics over the weekend. I feel frightened and too weak to withstand even the best of outcomes. I cannot help but feel like my health and college are not a good match. I cannot help but feel disappointed, in myself and in my treatment and in bacteria and in my hopefulness.

    Whenever I am feeling particularly physically weak, I always have a powerful urge to go to the mountains or the beach. I imagine myself stretched out on a mossy rock, overlooking the Amalfi Coast, my hair curly and tangled from the salty mist. I long to draw crisp Appalachian air into tired lungs, curled up on a bench with a blanket, layered under sweatshirts two sizes too big. Sometimes I long for people, sometimes I long for solitude, and sometimes I long to watch people from a distance. I never long for success in these moments, I only long for peace. I long for spaces where I can breathe and soak in beauty. I long for places without any knowledge of the medical field, where words like "immunosuppression" are foreign and funny. I long to feel connected with the world I am trying so desperately to function within.

Saturday, September 2, 2017

Rain

      Yesterday was one of those gloomy days, when the sky was dark and the world was wet. As many of you all know, stormy weather tends to cause arthritis flares/additional stiffness and pain, and this was certainly true for me yesterday. In the middle of my final recitation of the day, I realized that I could not make a fist without experiencing pain so excruciating that my whole face would have crinkled up uncomfortably. Walking caused me to wince. Clenching my jaw in response to the pain only made the arthritis in my jaw hurt worse. It was one of those days.

    Of course, the intense rain also reminds me of New Orleans. There is nothing that I would love to do more right now than wade through foot-deep puddles on my way to the French Quarter Market, befriending a moderately intoxicated bachelorette party on the streetcar along the way. I missed my Tulane friends with heightened intensity; it was like the clouds were dumping alcohol into my open wound. When I silenced my mind and concentrated solely on the rain, I felt like I was back in New Orleans.

Polk Place - photo from www.unc.edu
     I am determined not to allow arthritis to dampen my life activities, and so I was still excited to go grocery shopping with a friend yesterday afternoon and explore more of the area surrounding campus. When we stepped onto the first bus, I felt a wave of fear. It is difficult to be in large vehicles that start and stop abruptly and rattle up my bones. It is almost impossible to stay balanced when your knees bend backwards and your hips are unsteady and your fingers cannot grip tightly enough for railings to be of any use.

     As I was making my way towards the back, I saw my sweet friend Annabelle. In our short conversation, she imparted that she knew the weather was hard on my joints and asked how I was feeling. I had not confessed the pain to a single soul. I felt like it was completely invisible, a boring topic that none of my friends would want to discuss. It was by no means some of the worst pain I have experienced, but it was uncomfortable and distracting. "Let me know if you need help with anything," Annabelle offered with utmost sincerity, and I knew she meant it.

     My first two-ish weeks at UNC have been wonderful. I have had the opportunity to reconnect with so many friends and my classes are phenomenal. I definitely picture the next three years here as happy ones. I have found organizations and people that I love. But none of this cures arthritis, and so I am learning to cope in a new setting, with new friends and professors and places.

     Thankfully, I went to bed last night not feeling too ill. A hot shower helped to reheat my joints and loosen them up. I drifted off to sleep feeling warm and cozy. More importantly, thanks to Annabelle, I drifted off to sleep feeling supported, validated, and loved.

     I wonder if I will ever feel raindrops splash against my skin without thinking of New Orleans. I wonder if I will ever step into a bus without fear. I wonder if the people around me have any inkling of the pain associated with my illness. I wonder how much to tell them. Mostly, I wonder how I am lucky enough to know people like Annabelle.

Monday, August 21, 2017

College Take 2

       Tomorrow will be my first day of classes at UNC, and I am excited to dive into things academically, even though I am not particularly excited for all of the stresses of the semester.

       To write down how I am feeling about everything would be extensive, complex, and impossible. It is always changing. It never changes. I do not know how to put it into words. I suppose I am not that skilled of a writer.

Hoping for a year with less lung problems
(for starters), but I will definitely miss the
hilarious medical cards from my parents.

      Over the past few days, I have been particularly grateful for all of the familiar faces I see on campus, from high school friends to childhood friends to Governor's School friends. I have been stopped by so many people who have said, "Hey! I have been following your blog this year. Welcome to UNC - let's get together soon. Here's my number." I cannot express enough what a comfort this has been (and I will be taking all of you up on your offers!) Not only are all of these familiar faces helping to make the transition less lonely, but they are reminding me of how wonderful the people around me truly are.

     I always hate it when people tell me, "Everything will be alright," or "You are going to be okay." It seems so easy to say, so cheap. But this week, these phrases have been exactly what my soul has been longing to hear. Thank you all for telling me that things will get better, and that happier days are ahead. Thank you for cheering me on, and for reminding me that I am stronger than JA. Thank you for including me in your everyday UNC activities, and for taking the time to check in on me. Thank you for your invitations to lunch or to coffee or to walks around campus, and for introducing me to your friends. Thank you for your willingness to listen, and for explaining all of the "Carolingo" to me (word cred to Tyler Eaton & Faith Jones). Thank you for your hugs and for starting conversations. Thank you for accompanying me to events and for teaching me all of the campus shortcuts. Thank you for addressing what I know is not the simplest of subjects with so much grace and understanding. Thank you for promising me that I am not alone. Most importantly, thank you for being here.

    I am giving my goal of a positive, relatively healthy college experience another chance. I am thankful for all of the support along the way, especially from my UNC friends during this transitional time. Take two.

Sunday, August 13, 2017

Juvenile Arthritis Conference Reflection

      The 2017 National Juvenile Arthritis Conference in Indianapolis is officially over, and I am waiting for a plane home to return to my normal life.

      I have always felt embarrassed talking to my healthy friends at home about my arthritis, even the ones I am the closest to. But when we went around in a circle introducting ourselves and revealing our diagnoses in the Young Adult group at the conference, I did not hesitate before sharing the fifteen-syllable illness that has so drastically altered the course my life. There were several other young adults in the group who were also diagnosed with polyarticular JRA around the age of 11 or 12, and I could very easily relate to their experiences. Last night, I was considered why that oh-so-familiar sense of embarrassment never even popped into my mind. The easy answer is that there were other people around me who "got it." The more honest answer, however, came to me as I walked through the breezy Indianapolis downtown area to pick up dinner, smiling at all of my instant friends who were also wearing their JA Warriors shirts: I am not ashamed of my illness. I am afraid of how I will be treated because of it.

Most of the Young Adults group this morning
      I have always thought that shame and embarrassment were what stopped me from always being forthcoming about my disease, but I am not ashamed of having juvenile rheumatoid arthritis. This disease is not my fault. This disease is not your fault. I know that I try my very best, that I use up all of the courage I have every day, and that I have worked as hard as I possibly could have to end up where I am today. I am so proud of all of the other kids and young adults I met at the JA Conference. They are wonderful friends, to me and to each other. They should never have to be ashamed of their illness, and neither should I. None of us asked for this. The vast majority of us had no idea what it was until all of the sudden our joints were painful and our worlds were upside down.

       What does often worry me is how people will react to knowing about my diagnosis, or to knowing the details of my illness. Will they push me away? Will they cut me out? Will they think that I am being melodramatic? Will they feel uncomfortable? Will they accuse me of lying? Will they insist that young people cannot have arthritis? Will they gossip about my illness to their friends? Will they assume that I cannot do things that normal teenagers can? Will they talk down to me?

      All of these reactions are possible. There is no denying that. But I have decided that I would rather use the energy I spend trying to hide my illness from people to spread awareness and educate others on how people with chronic illnesses and disabilities should be treated. It seems clear post-conference that the only option is to use pain to create a more accepting, knowledgable, and compassionate world. It is possible to push for both acceptance of people with chronic illnesses and the development of a cure at the same time, and I intend on doing so.

Paula (a fellow JA warrior),  Dr. Chira (a pediatric
rheumatologist) & I told our stories to and answered
questions from parents of kids with JA regarding
medical transitions and growing up.
       I found myself in a considerable amount of pain several times during the conference. One night my ankles, knees, and hips hit me with a tsunami of aches, one morning I coped with nausea as I participated on a panel for a parents session, and during our self-love mindfulness practice I could not rip my mind away from my throbbing jaw. Normally, this type of pain would make me quite fearful and panicked. But at the JA Conference, despite hurting, I was not at all upset. What upsets me at this point in my illness is not having arthritis, it is the way I am sometimes treated because of my arthritis. I think that in many ways, this realization offers me new opportunities. If I improve my communication skills surrounding my health, perhaps I can positively affect the responses I receive. If I intentionally surround myself with only kind and empathic people, perhaps I can reduce my arthritis-related stress. If I educate my friends on how to best support me, perhaps I can ease my own painful experience of living with arthritis.

     Coming to the JA Conference, I knew that I would be surrounded by people who understood. But what I did not expect was how similar our concerns and experiences would be. All of these feelings that I ignorantly thought were my own are shared by the hundreds of other JA warriors I spent time with this weekend. We all fear that our friends and family think we are being dramatic about our diseases or exaggerating our pain. We all fear sounding whiny when what we really want is to be understood. We all went through a teenage phase of not taking our medications. We all hate methotrexate with a burning passion, even if it works for us. None of us are quite sure if we talk about our illnesses too much or not enough. Most importantly, none of us want to face juvenile arthritis on our own. We are not the same, of course; we all have our individual experiences and struggles, and we disagree on matters related to our illnesses. But we all "get it," even if we experienced or responded to various challenges much differently.



       On top of the other young adults with juvenile arthritis, I also met several of the conference leaders and Arthritis Foundation staff members who were helping to organize and plan it. There are too many of them to name in a blog post, but I would like to especially thank Arthritis Foundation CEO Ann Palmer, for her presence at the conference, for the attention she offers juvenile arthritis, and for the encouraging conversations I was able to have with her. She inspires me to be both kind and powerful, bold and gentle. Every day, millions of women go to work to save the world, and she is one of them.


      What happens now? That is the question I am faced with as I head back home, to a place where not everyone understands what "polyarticular" means or how difficult living with a chronic illness at age 18 really is. In the name of a focused start, I have made three commitments as a result of the conference, the first of many more to come:
1. To choose honesty, community, friendship, and compassion in the face of my illness.
2. To gather a larger team and raise more money for the 2017 Arthritis Foundation Jingle Bell Run than I have for any previous event.
3. To build stronger relationships with individuals and families in my home community of North Carolina dealing with juvenile arthritis. 

Left to right: Katharine, Emma, Erin & me with pandas generously given
to us by Alpha Omicron Pi!
      I invite you to join me in my mission to achieve these goals, whether you have JA or not! I promise it will be worth your time. To all the friends I met at the Juvenile Arthritis Conference, and to all those I have yet to meet, thank you. Thank you for your company, laughter, and openness. Thank you for reminding me that what I am dealing with medically is truly wild, but is not unheard of. Thank you for your perfectly-timed arthritis jokes and hashtags that would be completely inappropriate if anyone else said them.

      Finally, I am forever indebted to the Arthritis Foundation for organizing such a well-planned and transformative Juvenile Arthritis Conference, and for offering me a scholarship that made attending possible. I hope to attend next year, and I hope that those of you who are affected by juvenile arthritis will be there as well. Feel free to reach out with any questions you might have! We are stronger than juvenile arthritis. I promise. 


Wednesday, August 9, 2017

The National Juvenile Arthritis Conference (Indianapolis)

      Hi friends!



      As many of you already know, April was a hard month for me. I officially decided to transfer from Tulane University to UNC Chapel Hill, the result of severe medical challenges I experienced during my year in New Orleans. I then had to deal with revealing that decision to, well, everyone. At the same time, I was trying to finish up my first year of college, prepare for exams, love my friends as well as possible, and attend countless medical appointments.

      Despite all of the rough waters April threw me into, I also received wonderful news that I have not yet publicly shared on my blog: I was offered a scholarship from the Arthritis Foundation to attend the National Juvenile Arthritis Conference in Indianapolis!

       I have attended the conference twice before, once in St. Louis, Missouri and once in Anaheim, California, but it has been several years since I last went and this will be my first time being in the Young Adult group. Tomorrow, I will be traveling to Indiana to meet hundreds of people with similar health challenges and experiences. I am so, SO excited to be in the company of people who "get it," especially after having such a difficult year, and I am looking forward to all of the friendships that I know will stem out of the conference.

       Almost all of my friends at home are healthy and able-bodied, so hanging out with other people who live with chronic pain and know the rheumatology lingo seems like such a comfort at the moment, especially since the last year has forced me to make difficult decisions surrounding my health and, frankly, my life. I cannot express enough how lucky I feel to have the opportunity to make friends who can say, "I understand completely," and mean it.


     I am very grateful to the Arthritis Foundation for covering my flights, hotel, and registration fee, and for their willingness to organize programs like these that bring people together and make living with arthritis as a kid a little bit easier. I am genuinely looking forward to connecting with everyone else who will be there. If you are attending the Indianapolis conference, make sure to send me a message so we can meet up sometime. I would love to hang out with you and hear your story!

     Here is to a weekend of friendship, health, motivation, advocacy, honesty, and understanding. Thank you all for your support!

Saturday, July 22, 2017

How Nausea Teaches Humility

      Somewhere between one and four times a week, depending on the week, I wake up between 3 and 6 in the morning with extreme nausea and am up for at least an hour before it subsides enough or my stomach empties enough for me to go back to sleep. I do not appreciate anything about these horrid hours, but I have recognized lately that nausea has taught me humility more than any other aspect of my disease. 

       It is impossible to feel superior to anyone when you spend multiple hours a week throwing up and wondering when this cycle might end. Did someone get 2+2 wrong? I can laugh at them all I want, but at 4 a.m. that person is likely snuggled up in their bed while I am struggling to hold down sips of water. There is nothing "strong" or "brave" about it. These are some of the most hopeless of moments, when the whole world feels like it might crumble around me and I wonder how it is even possible that the sun will rise again and life will carry on. It is one of the loneliest experiences of living with a chronic illness, yet unlike at other times of intense pain, I never wish that anyone was there with me. Nausea feels like a storm I must weather on my own. It is my personal fight, where my army of family members, friends, and doctors have all retreated to get some rest and I must go back out to brave a beast that wakes up before anyone else. I receive so much help with almost everything else that I feel like nausea is my own battle, and so I give myself the pep talks and make the medical decisions and allow Zofran to dissolve on my tongue without anyone to cheer me on. 

      In high school, on some of the days when I could barely walk as a result of the arthritis in my lower limbs, my friends or teachers would often accompany me on the short walks between my classes, most importantly because I could not handle any administrator or other teacher accusing me of sluggishness or trying to help but accidentally overwhelming me. Even though I should have just used the wheelchair (story of my life, honestly) there was something triumphant about reaching my destination. Even calling it a "destination" really brings to light how screwed up this mentality was; for everyone else, it was just their "next class." When I would hobble into a classroom, exasperated, people would comment on how proud of me they were or how much they could see that I was trying. While this often felt condescending and inappropriate (look up inspiration porn if you are unfamiliar with the term/concept), it was still better than them thinking I was lazy or apathetic. If I stayed home sick or used the wheelchair, would they still think I was strong? Would they think I had given up? Was I ready to give up?



     The thing with nausea is that there is no triumphant moment or destination. There is only a moment of feeling well enough to curl up in the fetal position, unable to distinguish which tears in my eyes are from throwing up and which are from crying, and squeezing my eyes shut with the hope of sleep. I do not feel like a warrior, I feel frail and broken and small. I do not feel like fighting or wielding a sword. I feel like crying. No one will ever know how much strength I do or do not display during each night of sickness, and so I am only as strong as I want to be. "Hold it together," I think, but this time for my own sake rather than for the sake of someone else. I'm never trying to prove my courage when I weakly leap up from my bed, twist my tangled hair up with a clip as fast as my fingers can manage, and grasp porcelain with cold palms, unable to hold my head up otherwise since I am dizzy from having rushed out of bed. But I do have to be strong, so that I will get through the episode efficiently without completely losing my mind. "It'll be okay," I tell myself, resting my head against my cabinet and closing weary eyes, "it'll be okay." I only believe myself half of the time. 

     This is not a pretty or poetic post. I am keenly aware of that. These are the unfortunate details of chronic illness that are painful to write but that I believe are important to share, because I am trying to portray chronic illness and the ways in which it affects me on an individual basis accurately, authentically, and thoroughly. I have not written about nausea much mostly because the timing of my nausea makes it easy to hide. I hope that exposing my very regular struggle with nausea today does not scare anyone, but if it does scare you, know that you are not alone, because it scares me too. 

      I would never wish this disease or any of its symptoms on anyone. One time during middle school I prayed for someone to understand what it was like and then demanded that God shred my request a few weeks later, afraid that my prayer would be used to justify giving some other little girl arthritis. I thought about this hypothetical girl often and became panicky whenever anyone around me complained of a sore wrist or a stomach virus or a minor autoimmune issue. Was this the person I had doomed to a life a rheumatology appointments, home injections, and joint swelling with my selfish prayer? This was terrible theology and looking back I know that my prayer was free of malicious intent, but I felt guilty about it for years. I hope that you never experience a serious health issue, but I also hope that you have something that makes you feel completely inferior to everyone around you. As terrible as the feeling is, it sure does make you care a lot. And it sure does put things in perspective for you, even if you would rather that perspective not come in the form of a torn up stomach in the wee hours of the morning. I hope you will use feeling small to give a lot of love to the people around you. I hope you realize that sometimes the smaller you feel the bigger your heart is. 

Sunday, July 16, 2017

How to Be a Friend to Your Sick Friend

      While participating in #CreakyChats a few days ago, we were invited to dish out some of our best chronic illness pro-tips. Normally I think very carefully about my responses before tweeting, or I just listen to most of the #CreakyChats conversation, but when asked for a tip this one immediately came to mind:

       When I first Googled my illness after being diagnosed, I remember reading from multiple bloggers that my disease would help me to "know who my real friends are," and that my social life would sort of flip upside down. I was pretty skeptical of this. I knew I would probably grow apart from my friends - I spent most of my afternoons at physical therapy during the first few years of my illness, not hanging out with my peers after school, and it became somewhat impossible to relate to other pre-teens who were not constantly thinking about the amount of fluid in their joints or their next rheumatology appointment. What I did not expect was that all of those bloggers were right. People you are not even that close to become the most reliable friends in the world, and the people you used to cling to often prove to be unequipped and sometimes unwilling to offer support. Of course, there are people I don't know well that are not kind at all when confronting chronic illness, and there are people who I know well who are absolutely lovely when dealing with what can be a sensitive subject. All I am saying is that you cannot predict these things ahead of time, no matter how well you think you know someone.

       The good news is that having a chronic illness often allows me to see the best in people, whether they are a close friend or a stranger helping me to reach something in a grocery store when my elbows will not fully straighten. More importantly, I have been surrounded by friends who love me and care for me even when I feel more like arthritis than like me.

Sisters are the best friends of all!
      Since that #CreakyChats, I have received a few requests via Twitter DM for a blog post about the best way to be a friend to someone who is sick. Even just receiving requests like these gives me so much hope for the future. People want to help, and that is a reality too wonderful to be taken lightly. I have been working on developing a little list that I hope is not too overwhelming. As always, I advocate for speaking with heart over saying the "right" things, so do not fear if you find yourself existing in a space outside of these suggestions.

1. Ask what your friend needs, or offer specific suggestions. 

       While "I'm always here for you," and "Let me know if you need anything," are meaningful displays of love, they can also feel a bit obligatory and it can be difficult to discern who is being sincere by saying this. It is better to ask a specific question when possible. "Would you like me to go with you to an appointment?" or "Would an ice pack help?" or "Do you need someone to keep you company right now?" all come across as more genuine and less ambiguous. If you can't find an appropriate question that is that specific, you can ask, "What can I do to support you right now?" or "What can I do to help?" Both of these are better than "Let me know how I can help," and open up a conversation rather than closing one down.

2. If you're not sure, it's okay to ask. 

      I think one of the biggest obstacles that prevents people from being a friend to people who are sick is uncertainty. Will talking about your friend's illness be helpful to them or a source of frustration? Does your friend want to go on a hike or is she too unwell to go? Would bringing a homemade treat be appreciated or is your friend feeling too nauseous to eat? I have great news for you: you do not have to (and should not) figure these things out on your own. You can literally just ask, and 99% of the time it is not awkward at all, it is only appreciated. For example, asking, "Would a hug help or would it hurt?" is better than not offering a hug at all, and asking "Would you like to go ice skating? I'm not sure how painful it would or wouldn't be," is better than not inviting your sick friend. Plus, by admitting that you are unsure of the right course of action to take, you offer power to your friend and acknowledge her illness in a direct and confident manner. All good things.

3. Learn about your friend's illness. 

      Google exists so at this point there is really no excuse for not reading up a least a bit on your friend's illness and how it affects her. If you are not sure where to start, or if you want to strategically avoid misleading or inaccurate websites, you can even shoot your friend a text like, "I'd love to read up on [juvenile arthritis] to be a little more informed about it. Are there any websites you recommend?" This is both thoughtful and direct. The more you know, the more you will be able to offer, from both a practical and emotional standpoint.

4. Offer alternatives when illness stops plans from happening. 

     Something that most of my friends with chronic illnesses agree on is that canceling plans with friends due to illness is one of the absolute worst feelings in the world. I remember being so excited to go shoe shopping at the mall with a friend once during my freshman year of high school, only to wake up feeling like trash. "Let's watch a movie instead," my friend texted back, and so we watched something on Netflix that was probably of even lower quality than my joints, but regardless of the merit of the movie, her offer to do something less physically daunting prevented me from isolating myself and kept me distracted from the pain. If your friend needs to cancel plans because of her illness, respect that, and try to work with her to come up with something different to do. I know it must be confusing to see someone bouncing around town one morning and too sick to move much that afternoon, but confusion about it does not change the reality of it. Chronic illness can go from being a candle in the background to a house fire in a matter of minutes.

5. Check in during the okay times. 

     It might be tempting only to check in with a sick person when they seem to be having a particularly tough time with their health, but checking in regularly is important in order to establish a real relationship. If you only check in during the bad times, and your friend has to respond with "I feel terrible," every time, all they are really texting you about is how terrible they feel, and never how unexpectedly good they might feel one day, and that can be a real downer. Plus, even when everything looks to be okay from the outside, they could be dealing with something really difficult healthwise and might just be keeping it under wraps. Checking in at random times might seem intrusive, but really it is very helpful. Even just saying, "Hey, how have things been with your health lately?" or "Hi friend, how have you been feeling recently?" can be a great way to check up on someone that involves very little stress and a whole lot of love.

6. Maintain expectations of your friend. 

      Does it hurt your feelings when your friend sugarcoats how she is feeling, since you expect honesty from her? Tell her. Is it frustrating if your friend is always canceling but never attempting to reschedule? Tell her. Do you feel like you're the only one putting effort into the friendship? Tell her. Do you feel like you are always checking up on her but she is never checking up on you? Tell her. So many problems are solved just through open conversations. You should maintain expectations from a friend who is dealing with a serious illness just like you would for your healthy friends, while understanding that at times a sick friend may not be able to do the same exact things a healthy friend can.

7. You are not a doctor. You are not a therapist. You are a friend. 

      Being honest with a healthy friend about how you are feeling and having that honesty met with, "Have you tried going [insert food group here]-free?" (I will probably publish a whole separate post on unsolicited medical advice soon, but consider this the condensed version) is both disappointing and distancing. Even though you may have a million suggestions or ideas about what could help your friend, I guarantee you that your friend has enough doctors already and is not yearning for you to become another one. If your friend wants medical advice, she will ask. Similarly, your friend is not looking for you to analyze all of her feelings or try to make her think differently. You are a friend, so try your best to stick with empathy. Chronic illness patients have enough people trying to figure them out and telling them what to do, so it is more helpful if you can focus on being on "their side" whenever possible.

8. Be there.

      This is by far the most important tip I have to offer. Just be present, whether things are good or bad, whether you feel equipped to help or daunted by the prospect. If you have no idea what to do, just show up. They say showing up is half of the battle, but in reality it is more like 90% of the battle.


    Shout out to all of you who made it to the end of this, and thank you for your friendship! A special thanks to Spencer, Taylor, Annabelle, and Allison, who have all been particularly wonderful in my everyday fight for good health and who immediately came to mind when I made this short Twitter thread. I love you all so much! I hope this post is helpful and that we will all be kinder and gentler to our friends today than we were yesterday.

Tuesday, June 27, 2017

Yogurt Cups

     Some days I feel very put together and on top of my life, and on other days I am just absolutely bewildered by all that has happened over the past year. Around this time last year, I was on a trip to England with a small group of students from my high school. I have written about it on this blog before (see "English Sheep" or "Problem Child") - it was a phenomenal experience. Last summer was full of firsts and lasts. I was excitedly preparing for the next four years at Tulane, packing up the items that made the cut to come with me to New Orleans. My friends and teachers all knew how excited I was for the undergraduate public health program, Mardi Gras, new friends, and carefree days spent allowing the breeze of the streetcar to tangle my hair.
Photo Credit: Faith Jones
     What happened in between that trip to England and now is enough to write an entire book on. Between the countless strep throat diagnoses, a tonsillectomy, MRIs, X-rays, a CT scan, First Bite Syndrome, way too many rounds of steroids, Uber trips to the hospital, my dad driving down to New Orleans, flying home early for spring break, significantly diminished lung function, mornings spent vomiting and receiving albuterol in the Student Health Center, nurses who went through flashcards with me before I was cleared to leave after treatments, getting my own nebulizer, that night I bawled in my dorm room, severe seasonal allergies, laryngitis that lasted almost two weeks, and being asked by my professors if I was surviving, it was a tough year. Looking back, I am genuinely not sure how I made it. But then again, when I looked back at my senior year of high school I am genuinely not sure how I made it through AP BC calculus every single day from 7:30-9:00 in the morning, so I guess we all do things we might not think we are capable of.

     As much as I try to maintain a "moving forward" type of attitude these days, some moments just punch me in the gut and leave me gasping for my next breath. It seems as though New Orleans is everywhere. Seriously, it's in the name of a yogurt flavor at Target. I don't even eat supermarket yogurt since I am a vegan, and yet the Big Easy is still inescapable, appearing even when I am just trying to check for the hundredth time if Target has finally decided to stock cashew milk yogurt (I am convinced that the day is coming, but so far I have only been disappointed). My New Orleans-radar is at an all-time high since I am missing it so much, so when its frequent appearances and my hyper-awareness of these appearances combine, it feels a little bit like I am drowning in the Mississippi under the musical canopy of a jazz funeral and the dim shade of second line umbrellas.

      A year ago, seeing the name of such a magical city on a yogurt cup would have excited me to no end. Today, the very same city brings back deeply painful memories along with all of the fun ones. Memories of a Mardi Gras spent mostly in my bed, praying for the energy to eat lunch. Memories of sweet hugs from my favorite Tulane nurse that only made me cry harder as I wished for a sense of peace and stability with my health that was not as fleeting as someone wrapping their arms around me. Memories of sitting down on the landing of the staircase that led up to my history class because my body was too achy and my lungs were too weak to walk up all of the stairs at once.

     Of course, not all of my memories are so dramatic or heartbreaking, but if I went through all of the good ones or thanked everyone who made my time in New Orleans so wonderful I would never finish this post. There are definitely more good memories than bad ones. There are more that make me laugh than that make my cry.

     I wish that I could just let go of the year I had in New Orleans. I wish I could love all of my friends there without missing them, and that I could forget about the tears welled up in my eyes the last time I rode the streetcar, and that I could stop longing for the succinct and clear explanations of one of my professors every time a new health care bill is put forward. I wish I could be completely at peace with it. I wish I could stop thinking about it and stop writing about it and stop bringing it up. I do not consider myself to be a person who lives in the past, the present, or the future. I find myself always living in all three, unable to ever separate myself from any one component. Is this a healthy balance, or some sort of self-inflicted punishment?

     I want to experience New Orleans in more than a yogurt cup way. I want to live there, just like I did for the past year. The reality is that that is not going to happen, at least not for the rest of my undergraduate education. I am slowly getting used to that idea. Getting used to it is nothing impressive and is not symbolic of some type of emotional "coming to terms" that I feel slightly expected/pressured to have, but is rather a reflection of the power of time to stop the bleeding. It is not the end of the world, and I am not constantly thinking about it by any means, but it sort of sweeps me up and carries me away for brief periods of time before putting me back down on my feet again, safe from the storm yet rattled by the wind. I suppose we all have little things like that.

My sweet friend Michelle!
      Miley Cyrus recently released a song called "Malibu." You might feel any number of ways about Miley Cyrus, but the point of the song is that she is living her best life right now and is just generally in a good place, and I'm here for it. In one of the verses she sings, "I never would've believed you if three years ago you told me I'd be here writing this song," and the first time I heard it, the lyrics punched me in the gut the same way New Orleans yogurt cups do. It is hard to imagine graduating from UNC in three years, and it's even harder to imagine not missing the New Orleans-style ceremony the entire time. If asked to picture commencement, the first thing that pops into my head is second lining out of the Superdome in a black graduation gown with a green tassel. But perhaps in three years I will be thinking the same thing Miley is in that verse. Perhaps I will be even happier than I can even imagine. Perhaps the pain that I am feeling during this transitional period will seem distant or even unrecognizable. I will get back to you all in the summer of 2020 with an update. At the end of the day, "Malibu" is just another pop song, but I am on a constant quest for hope given my current circumstances and I will shamelessly admit that Miley offered me a big chunk of it by reminding me of how quickly life can change for the better.

Faith taking pictures in the rose garden
       At the UNC Transfer Orientation I attended, I met a friendly transfer student named Michelle. My friend Faith (from high school, who also goes to UNC) and I met up with her yesterday for lunch and for some well-spent time in a rose garden. Michelle is such a gorgeous person, inside and out, and is remarkably easy to talk to. I am so glad to have someone to navigate Carolina with next year when all of the other sophomores and juniors around us will already know the ropes. I am also enormously grateful for Faith, who is always down for any adventure and never hesitates to belt out songs in the car with me. I do feel like there is a part of me deep, deep down (we're talking Mariana Trench here) that knows that everything will be okay in the end. I cannot always see it, but I try to at least remember that it is there. Every time I meet people like Michelle, that part of me rises a few feet toward the surface. I don't know how it is all going to end up okay, but I do know that people like Michelle and Faith exist, and roses exist, and long car rides with the Wicked soundtrack exist, and these are all good things, even if they must coexist with things like New Orleans yogurt cups and polyarticular juvenile rheumatoid arthritis.

Monday, June 5, 2017

To Feel Loved

      Recently, my mom and I were discussing that often when something tragic happens to someone or a difficult situation is forced upon them, we cannot make them feel better, we can only make them feel loved.

Enjoying a vegan cupcake with one of my best friends from
Governor's School! Shout out to Hannah for driving 1.5
hours just to make it to brunch. So much love for this girl!
      I have been considering this notion a lot lately. Often our tendency is to try to fix people, when in reality all we should be trying to do is love them. I do not think the tendency to want to "fix" people is inherently a bad thing. When I see someone in pain, especially if their pain is medically related or similar to mine in some way, I immediately want to take away that suffering by any means possible. I think most of us do. I think that desire in and of itself is a form of love.

      When fixing a situation is possible, it is by all means the way to go. When I could not open my sandwich bags at lunchtime because my hands hurt so badly, my friends fixed the situation by opening them for me. But we are not divine, and often "fixing" someone is impossible. Nothing that I do or that anyone else does is going to stop the arthritis that tears apart my joints or the pain that often swarms over me. Even the best friend in the world could not remove the fluid from my joints.

      Despite almost never having the power to turn a situation around, we always have the power to make someone feel loved. When I think about the dozens of people who have helped me to cope with such a cruel illness over the past seven or eight years, they all proved to be such valuable members of my support system not because they tried to shove a bunch of "magical cures" in my face, but because they made me feel loved even when I felt like a rotting corpse (just being honest here). They asked uncomfortable questions and waited patiently as I stumbled for words. They told me I was beautiful when I hated a body that was destroying itself. They gave me hugs and tissues when I cried. Many of them cried alongside me.

     Truthfully, I also remember people who became frustrated as my disease stopped me from doing the things I wanted to do and from being the person that I wanted to be. I remember friends who were less patient and less forgiving and who became annoyed when my coping was less than perfect. I am pointing this out not because I harbor any resentment, but simply because if you are suffering it is important for you to remember that even if the vast majority of people choose unrelenting love, the fact that others do not does not reflect poorly on you.

     Last Monday was my eighteenth birthday. Normally I do not plan large gatherings, but this year I decided to hold a birthday brunch with some of my friends. I went to bed that Sunday excited to wake up and spend a lovely day with so many people that I care so deeply about. My body jolted me awake at 5:53 a.m. that morning, and I threw up almost immediately. It's my birthday, I thought, feeling a pang of self-pity that I try not to allow myself too often, Can't I get a break? I instinctively looked in the mirror while washing my hands. My eyes were bloodshot from throwing up. I was still nauseous. I can't go to my party looking like this, I thought.

My dear friend Alana!
     My first moment of adulthood was spent throwing up and staring at my own bright red eyes. I hope this doesn't sound too sad. I was sad that morning, for sure. But I had a lovely brunch with my friends and my eyes returned to their normal white and blue state before it began. Looking back on that morning now, I think in many ways it is so representative of the complexity of illness in my life. While I certainly felt weak in the midst of it, upon reflecting on it some more I feel strong. There have been thousands of tears along the way and more pain than I ever thought I could bear, but making it to eighteen is an accomplishment. I have been to more physical therapy appointments than anyone should have to attend in a lifetime, but I fought through them and regained range of motion in my joints. My elbows and knees straighten now. I run 3.6 miles almost every day. I can wake up and throw up and blood can rush to my eyes, and then a few hours later I can spend quality time with people I love, showing no signs of illness. That is something to be proud of, even if it is not ideal.

     Realistically, I know that my story with juvenile arthritis is not over, even though I am an adult now. Wouldn't it be nice if it just went away when a person turned eighteen? I think I would have thrown a brunch for the whole town. But I have been fighting for seven years now, and although I am hoping that I have way more than seven years to go, I think I can do it. We don't need perfection. We just need to feel loved.

      The past week has been filled with many ups and downs as far as the nausea situation, including a period of time in which I was unable to hold anything but small amounts of water down. Wednesday was a lonely day. I was alone for eleven hours due to some atypical circumstances, and all I could do was throw up and watch "America's Next Top Model" with glazy eyes. There are only so many hours a person's body can handle this before you just start to lose your mind and cry when Tiffany's photoshoot doesn't go well.

A photo I took with my dad following my
senior year acceptance into UNC Chapel Hill.
It is suddenly very relevant!
     On Friday I attended college orientation. During one of the presentations, the woman leading it asked the large group of transfer students, "If you see someone who needs help, and you help them, what would that be called?" She waited for us to shout out the answer.

     Apparently the actual answer was "active bystander." But a few rows down from me, one of my new peers loudly called out, "Decency." I could not help but agree. Why do we consider helping someone to be an extraordinary act of kindness, when really it is just human decency? We have to look out for each other, even if it takes up our own time or energy. We have to ask each other how we are doing, and to mean it. There are no other options. There is no other decent way to live.

      I can name dozens of incidents in which I wish I had loved people more than I did, although the actual number of times I have failed to live up to the love shown to me is countless. I like to think that I am getting better at loving people. It is probably way simpler than I am always trying to make it. So far I know that it involves a lot of hugs, a lot of time, a lot of hard conversations, a lot of listening, and occasional cards and notes and letters and gifts. Maybe we can all make it a goal to love people today just a little more than we did yesterday. Maybe we can apply that goal to every day of our lives.

Wednesday, May 24, 2017

Raincoats

     I needed to choose a raincoat to wear to an outdoor event I attended last night. I have two different ones: a Tulane raincoat and a UNC raincoat. I pulled on leggings, rain boots, and a shirt without second thought. But when it came time to pick which raincoat to wear, I felt my heart being dragged in so many different directions. I took each of them on and off at least five times. I stared at myself in the mirror. Why was this decision so hard? And why couldn't I just pick a raincoat?

     I finally settled on the UNC raincoat, justifying my decision by admitting to myself that it was a better match for my light blue rain boots. But all night, I felt like an imposter. Like I was wearing something that was not really mine. Like a fake Carolina student. I saw other people wearing UNC gear and many of them smiled at me in a friendly Tar Heel manner, but I missed the immediate high-fives and toothy smiles that come when someone with connections to New Orleans realizes that I go to Tulane. I experienced a brief moment of panic when we were paired up with strangers at the event, fearing that my partner might ask me about college. Should I only mention Tulane? Should I only mention UNC? Should I mention both? Do people even care that I spent a fourth of my undergraduate education in New Orleans? I certainly care. Thankfully, the man paired up with me did not ask. I was spared a pinch of heartache.

      Upon noticing that I was transferring from Tulane, an academic adviser at UNC admitted, "I went down to visit once, and I almost didn't come back." Me either, I thought, wishing that I was still tiptoeing around stinging caterpillars in a magical land full of jazzy second lines and majestic oak trees.

      Don't get me wrong; North Carolina is lovely. One of my teaching assistants during the spring semester, who spent a lot of her educational experience at UNC, was thrilled that I was going to spend the next three years of undergrad at such a wonderful place. "There is something in the water there," she said, beaming with a love for Chapel Hill that must have been coursing through Carolina blue blood.

Photo of Audubon Park from www.experienceneworleans.com
     Don't over-romanticize New Orleans, I kept telling myself at the event, tugging on the sleeves of a jacket that felt like the wrong color. The truth is, there is no way to over-romanticize such an incredible city. It is as mysterious and fun and beautiful as everyone says. The reality of it exceeds expectations of it, and the expectations of it are already very high. One of my friends recently commented, "You come to New Orleans expecting that it won't actually be like 'The Princess and the Frog.' But then you get here and it is exactly like that."

      What I do fear that I may be romanticizing is my own experience over the past year in New Orleans. If all of my positive memories, the ones that are constantly replaying in my head as I agonize over leaving a place I love, represented my reality, then I would have never left. But I spent more time in the Student Health Center than I did in all of the gorgeous crevices of the city, and my desire to sit and read under those giant oak trees was completely obliterated by the inability of my lungs to handle their pollen. I was so sick that I was only able to attend one Mardi Gras parade, and some of my professors expressed surprise that I could even finish the spring semester. Despite all of the good things, it has been a year marked by sickness and pain, and I have to remind myself of that in order to feel even the slightest bit okay about my decision to leave.

One of my favorite places to walk
through at Loyola University
     Since coming home, I have dealt with varying degrees of almost constant nausea, which has been enormously frustrating. The first weekend that I was home, I became very sick and had to cancel all of my plans with friends. While I was able to reschedule with almost everyone, I was disappointed that my body was forcing me to spend such a difficult weekend in isolation. Things improved throughout the week, but I am still overwhelmed by the unpredictability of my illnesses. On Saturday night I was only able to eat a single orange slice before throwing up. I spend a good part of each day feeling defeated. Fatigue has been a very real challenge for me over the past several months, and I am disappointed that it is still an issue now that I am home, although I know I need to give myself adequate time to rest, recover, and improve. I did have an encouraging appointment with a surgeon who applauded my decision to transfer and told me that a potential upcoming procedure could be greatly delayed or even completely cancelled thanks to that decision. It was an affirming medical appointment, and considering that these rarely exist and that I am struggling so much with switching schools it was well-timed and desperately needed.

     You know how after you don't see someone for a long time it becomes more difficult to picture their face in your mind? I am afraid of having that happen to me with New Orleans, Tulane University, and my college friends. I am afraid of beginning to forget such an important year of my life. I am afraid of watching the details fade into the background of my mind. I may have worn the UNC raincoat tonight, but I will not be throwing out the Tulane raincoat or shoving it in the back of my closet to wither away. At the end of the day, the rain will come no matter what color I choose to wear. Both are valid. Both are good. Both are worthy. I am learning how to love both.

Sunday, May 7, 2017

A Streetcar Saint

     Since I will not be returning to Tulane in the fall, I am trying to explore New Orleans as much as possible, do all of my favorite things, and cram in time with friends before I leave. On Friday night, my lovely roommate Allison organized a little going away dinner for me with several of my Tulane friends, and it was such a treat to have so many people that I love all at the same table. I am lucky to have such a fantastic roommate, and I am grateful to have so many generous friends.

      Only a few days after I decided to enroll at Carolina, I went home briefly for Easter break. I was glad to go home and visit with family and friends, but overall it was an incredibly difficult period of time. I was struggling with my UNC registration and struggling to see myself there. I kept walking around campus, trying to feel at home, when all I really wanted to do was run back to the Tulane bead tree and watch the colorful blur of shotgun houses out the window of a university shuttle. I was doing my very best to get excited about all the opportunities Carolina has in store for me and I did not want anyone around me to have to deal with anything but optimism, so I raved about the positive aspects of UNC and was careful to follow up every one of my own complaints about transferring with "but I'm sure it will be fine once I get here."

      My parents were as sweet as could be. They picked me up from the airport around midnight when my plane reached North Carolina, and before I even went upstairs to go to bed I broke down and sobbed about the whole thing. When I finally went upstairs to my room, I saw a perfectly made bed with a brand new Carolina pillow neatly situated across it, along with a paper UNC pharmacy bag filled with prescriptions, and it just felt so appropriate given my situation. We went out to a celebratory dinner the next night, because I am still determined to make this sad occasion into a joyous one, and they very generously gave me another little gift bag filled with UNC items. That night, I found myself actually excited to start something new, but I would be lying if I didn't acknowledge that the feeling was fleeting.

       I think one of the reasons that Easter break was so hard on me was that it finally occurred to me that even though I have friends at Carolina, I have missed an entire year of memories and laughter and learning with them. I barely understand how to access my university portal, so to say that I am behind would be quite the understatement. Lingo and inside jokes were casually tossed around and I missed the comfort of my own university, where I am "in the know" about these things (for the most part, at least). I feel like I could spend an entire year trying to catch up and still not get there. It seems like everyone has grown closer together while I have put down roots elsewhere, but now I am being freshly uprooted and I do not really belong anywhere anymore. How do you recover a lost year? And what do you do when you really want to be 850 miles away?

      I know the next few days will be full of heartache and, quite honestly, full of regret. Friends I should have spent more time with. Places I should have visited more often. People I should have loved more fully and more gently. A city I should have explored more thoroughly. I am hoping to become consistently excited about Carolina over the summer. Hopefully I can create some positive memories on campus and make some friends before the school year starts. Hopefully it will feel like home by August.

      Today I had the opportunity to go to my New Orleans church one final Sunday, and, as always, it was such a wonderful place to be. I am going to miss the rector, the sweet couple that takes me there, and the congregation, but I feel lucky to have met such amazing people and to be loved in two churches in two different cities. I learned so much in my New Orleans church and participated in so many joyous songs and prayers. What more could a girl ask for than to be widely loved and to be able to love widely?

     Yesterday, I decided to spend some time traipsing around the French Quarter, stopping to listen to every street performer and making an effort to be as gracious as possible to everyone around me. I want to leave this city with as much love as it has given me, and though I know it is impossible, I figure that I might as well try. Over the past week I told myself that I was handling the whole transferring thing well, given the circumstances. But as I walked into the St. Louis Cathedral just to see it one last time, I found a tear or two welling up in my eyes. I sat in a wooden pew, ignored all of the tourists around me, and found myself wondering why in the world my own body is forcing me to leave a place I have fallen so madly in love with. I did not receive any clarity or answers, but I am glad that there was a quiet place to sit with my sorrow for a minute before I reentered the lively streets of New Orleans.

      After shopping around a bit, watching a movie about Hurricane Katrina, and buying a NOLA snowball (which I ended up mostly throwing away because I just always feel like the flavor to ice ratio is way too heavy on the flavor), I boarded the streetcar again to head to an arts market a few miles away. The streetcar is always packed coming back from the French Quarter, especially on the weekends and when the weather is nice, and because I am a tiny human it is essentially guaranteed that someone will join me on whichever little bench I choose.

      A woman only a four or five years my senior sat down next to me right as the streetcar began to move. My eyes were locked on Canal Street as I vowed to remember the scene and smell and magic feeling in the air that makes New Orleans the mysterious city that it is. I did not intend on conversing with this woman, but we were wearing the same ring, so she struck up a conversation with me. Assuming that I was a tourist because of some New Orleans apparel I had purchased that day and was carrying with me, she asked me where I was from. I explained that I was a Tulane student from North Carolina, but that I was returning home soon. "Why?" she asked, frowning. She was a brave soul to venture into this territory.

     "I was really sick this year, and I need to be closer to home. But I wanted to get some things to remember New Orleans by and spend one last day in the French Quarter. I really love it here." Despite the absence of details, I was surprised at how forthcoming I was about the whole thing. I am usually pretty good at providing extremely vague answers whenever a stranger asks me anything that might relate to my health, so this was at least an improvement, even if it was still a bit ambiguous. She seemed to understand and went on to tell me all about her travels, as a student from Spain who studied abroad in Canada and has seen many corners of the earth. I was impressed by how outgoing she was and I quickly became engrossed in both her stories of underground malls in Toronto and fascination with daiquiris.

Photo from www.neworleanscondos.net

     A few blocks before her stop, she looked me straight in the eye and said, "I hope your health improves. Remember, there are always more degrees. There is only one of you." With that, we said goodbye, and unfortunately I do not expect to ever be able to see her again. It was a strangely encouraging encounter. There was something so powerful about being able to share such a delicate situation with someone who did not even know my name.
 
     Perhaps it is naΓ―ve of me, but I think I will always remember the saint I encountered on the streetcar yesterday. Plenty of people have said plenty of nice things to me regarding my decision to transfer, but she just seemed so at ease with the whole thing. There was no awkward scramble for words or fear of sounding condescending. It was one of the most authentically human moments I have experienced in a long time. I did not find clarity or peace in the cathedral yesterday. But maybe God can use streetcars as churches. After all, even saints use public transportation.