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 naïve 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.

Monday, April 10, 2017

Coming Home to Carolina

     Deep breath. Here we go.

     In mid-February, after a fairly lengthy text message in which I summarized many of the health issues I was experiencing at the time, my dear friend Amelia replied, "I know you were really looking forward to this year and this is making it a whole lot less enjoyable." I instantly connected with that statement, one that I had been previously unable (or perhaps unwilling) to admit to myself. I considered all that I had pictured college to be, and then looked at the reality of what college has been for me given all of my health challenges, and I knew Amelia was right. I have spent so much time trying to convince myself that I can be happy despite my health, when in reality it is very difficult to enjoy things when I am sick most of the time.

     When I called my mom, who works within a university, the next day, she said, "I always tell students that we want them to thrive at college. Rachel, you're doing a really good job, and I am so proud of you, but I just don't think you've been able to thrive." I think this was a hard case to make without seeming accusatory, and I was impressed by my mom's graceful use of words. I have had a great time this year, and I have participated in so many incredible things, but I have not been able to fully live the way I want to. The combination of poor health and being so far from home (and therefore unable to remain with a consistent set of trusted medical providers) has inhibited me from having the college experience I have always hoped for.  

     Beginning in the fall, I will be attending the University of North Carolina at Chapel Hill. I want to be very clear by saying that I have no ill feelings towards Tulane University whatsoever, and I made the right choice coming here for college. I adore Tulane, and transferring to UNC is not my way of correcting a mistake. I have not regretted joining the Green Wave for a single second. My year in New Orleans will always be an important part of the person I am. From oak trees to streetcars to second lines, this city and campus will continue to hold a special place in my heart. But the reality is that I need to be closer to my family and to my NC health care providers in order to maintain an acceptable quality of life. Making the decision to give up everything I have in New Orleans, most notably my dozens of compassionate friends and professors, was agonizing.


     Over the past few weeks, I told many of you that I was not considering transfer and/or that I was definitely staying at Tulane. I apologize for being dishonest. I was keeping this information private because I was not seeking outside opinions and needed to make this decision without a million voices pulling me in different directions. Part of me just wanted to keep it a secret for as long as possible because I was not completely ready to face it myself. This blog post is the first that anyone outside of my immediate family (and a few university faculty members) are hearing of my decision to transfer to UNC. Please know that my secrecy was not intended as an insult.

     When my first rheumatologist spoke the harsh words "juvenile rheumatoid arthritis" into the still air of a tiny hospital exam room, I never imagined that this diagnosis would end up pushing me away from a place I love. The past year has dealt me blow after blow by exposing many of the things that my body simply cannot do, no matter how hard I try, how passionate I am, or how much effort I put in. While I am very optimistic about UNC, this is obviously not an ideal situation.

      Over the past two months, whenever I felt completely broken and unsure what to do, I reminded myself that there were no bad options. UNC and Tulane are both world-renowned universities with excellent academic programs and vibrant social atmospheres. Both are stocked with thousands of brilliant professors and fascinating students. I am so lucky that returning home for me means attending one of the best universities in the country. However, as I am sure you can imagine, knowing this does not make being ripped apart from all of my friends in New Orleans hurt any less. It took many hours of consideration and conversation and tears to reach this decision, and I am asking everyone to please be respectful of the change I am making, keeping in mind that my emotions regarding this decision are very mixed.

      In the span of only a few weeks I went from planning out study abroad courses for my sophomore year in Amsterdam to blinking back tears in my academic adviser's office as we combed over a transfer application that was actively breaking my heart. I am excited to see what the next three years at Carolina will hold, and the opportunity to be a Tar Heel is not something I take for granted by any means, but leaving Tulane is very painful and upsetting. I am walking away from a full scholarship, an entire undergraduate public health program/degree, and my current minor (Homeland Security), among many other things. Your love, support, and understanding are greatly appreciated.

      This blog post represents a condensed version of an incredibly complex two month application process and eight month struggle for health. I realize that it leaves questions unanswered, and rather than speculating on any information that is unclear or absent from this post, I urge you to directly ask me any questions you may have. Text me, call me, comment, shoot me an email, or come knock on my door. I will answer questions candidly. I am going home to North Carolina this Wednesday night for Easter break, but, as my academic advisers heard me say over and over again, I will be finishing the spring semester at Tulane, and I plan on finishing strong.

     This year has been full of doctors, illness, and tears. It has shattered my heart and led me to friends who have gently pieced it back together. I am doing my best to turn this sad thing into a happy thing. Despite my heartache, I am choosing to celebrate all of the laughter, adventure, and (fingers crossed) health that awaits me at Carolina. I hope you will join me. 

Monday, April 3, 2017

10 Days of Freedom

         I flew back to New Orleans last night and will be flying home again next week for Easter break. This means that I am only actually in school for 10 days before I go back home again. Unfortunately, most of my spring break, plus the extra medical week I took beforehand, was packed with doctor's appointments and tests (a blood draw, finger prick, lots of spirometry, two x-rays, a CT scan, and an MRI). I saw three specialists along with my primary care doctor, and in between all of these appointments I was forced to make repeated trips to radiology clinics as my medical team attempted to gather as much information as possible. I need a break.

        Accordingly, my family and I created a goal for these next 10 days that I am in New Orleans: no trips to the Student Health Center (excluding my allergy shots, which I must receive later this week).

A sweet (and beautiful!) welcome home sign that my roommate, Allison, made for me!

         Given the frequency and severity with which I am sick, I genuinely feel that the Student Health Center should be awarding me class credit for the many hours I have spent in there being examined, diagnosed, treated, and monitored. It takes up more of my time that any of my extracurriculars.

Using my new nebulizer while I do homework

        Ten days may not seem like a lot of time, but, if successful, it will be my longest stretch without doctors in months. Luckily, this mission has been made possible by my new nebulizer. Many of the treatments I was having to rush into Student Health for before are now available in my very own dorm room. I am not feeling too good arthritis-wise (my left hip was killing me after my flights yesterday, and today I have some swelling in my right wrist) and because I am on antibiotics right now I am having a considerable amount of nausea, but there is not much that they can do about those things anyway. My rheumatologist, parents and I have decided not to allow me to have any more steroids for the time being, which is a complex decision, but I am hoping that some of my other medications will rise to the occasion and manage all of the inflammation in my body.

       I cancelled my Thursday appointment with my New Orleans rheumatologist, because anyone who writes off my symptoms (see: Three Lessons from a Sick 17-Year-Old) is just not worth my time, and my North Carolina rheumatologist is on top of some of my more immediate arthritis issues at the moment. Sometimes you just have to put your foot down and realize that you deserve better.

       Wish me luck! The 10 day countdown has begun.

Saturday, March 18, 2017

Flying Home Early

     As some of you know from my most recent Facebook post, I made the decision to come home a week early for spring break due to my health, meaning that I am missing a full week of classes. This past week was a very long one, and I thought I would provide some more detail here.

      I have struggled with seasonal allergies for my entire life. At the beginning of my senior year of high school, I began receiving weekly allergy shots in each arm in hopes of reducing my symptoms and reactions. North Carolina pollen can get pretty intense, and so I always kept Zyrtec, Claritin, and my albuterol inhaler nearby as springtime rolled around.

     This spring was my first in Louisiana, and things were much worse than I expected. My eyes were constantly itchy, I used one hundred puffs of albuterol in one week, I would sneeze six or seven times in a row, and my body felt "off." I was waking up many times during the night due to an inability to breathe, and I had to start to sleep sitting up. I also started having random, low-grade fevers at night. On Monday I finally went to the doctor, where I was given a breathing treatment and instructed to use Flonase and Benadryl regularly on top of the Zyrtec, Flovent, eye drops, and albuterol that were already a part of my treatment.

      Unfortunately, I also developed laryngitis on Tuesday, and since then I have only been able to whisper or speak in a very weak and broken manner that is difficult to understand. The pain in my throat was intense, and initially I suspected strep throat, which I was not pleased about. "I am going to punch a surgeon if I have strep," I told my roommates, reflecting upon the tonsillectomy I had in December to end the pattern of strep infections that plagued my fall semester.

      I went into the doctor on Wednesday morning for the laryngitis and a strep rapid test and culture, and was given a sheet full of pain-relieving strategies, which I was very appreciative of. However, I really cannot accurately describe in words how severe the laryngitis pain was. It was ten times worse than any of the strep infections I have had in the past and uncomfortable enough to remind me of my tonsillectomy recovery (not a pleasant experience by any means). Further, the combination of my intense allergies with the laryngitis and joint pain rendered me absolutely miserable. Normally this would have sent me into a spiral of tears, but my throat hurt too badly to cry, and so I texted my dad to discuss the possibility of coming home for spring break early.

Throwback to last summer when I was hanging out with my
family plus Mickey in Hawaii with highly functioning lungs
and a lei around my neck.
     We worked on the details of flying home early for a bit, which involved an email to my academic advisor and a trip over to our campus' disability services office. I walked in with a trembling body (wayyyyyy too much albuterol) and with a horribly rusty, quiet voice explained my situation. Consideration for tardies and absences is part of my accommodations, so I needed to figure out if going home a week early for medical reasons was even a possibility. As I was explaining myself to two women in the office, I broke down into tears, upset by my poor health and disappointed in myself for needing to miss classes. Luckily, some previously unknown saint whisked me into her office, provided an adequate supply of tissues, and listened patiently as I slowly whispered what was going on to her, pausing after every few words to suck in a wheezy breath. She helped me to develop a plan of action and put me in touch with some other people, most importantly a case manager, who could assist with the process. When I left the disability services building, I was planning on walking back to my dorm and studying for a test I had a few hours later. On the walk back, however, I gradually began to feel like I couldn't breathe at all, despite the four puffs of albuterol I had recently inhaled. I changed my path and returned to the student health center, where I had been diagnosed with laryngitis just a few hours earlier.

      By the time I was through the doors of the clinic, I was gasping for breath. Luckily, my favorite nurse was in the front lobby area, and she immediately approached me and could tell that I was unable to breathe. She brought me back to a treatment room right away, without even making me check in due to my urgent condition. My pulse oxygen level was not within an ideal range, and I was seriously panicking. I definitely have a history of panicking during asthma attacks like this one, but I feel no shame regarding this tendency of mine, because not being able to breathe is a legitimate thing to be scared of. Additionally, the amount of albuterol I have been forced to take over the past few weeks comes with symptoms of shakiness and anxiety, so freaking out was really no surprise to anyone. This time, however, the tightening felt like it was in my throat and not in my lungs, and I could barely communicate that due to my inability to speak (thank you laryngitis). A few other nurses started my treatment process.

     After taking two more puffs of albuterol and experiencing no relief or increase in my pulse oxygen levels, I was given an allergy cocktail of Benadryl, Zyrtec, and some other drug that I had never heard of before. Luckily, after some nurse-guided assistance in the "you seriously need to chill out" process and the kicking in of the allergy cocktail, I was able to breathe much better and my pulse oxygen level went back up, although my lungs felt extremely weak, my throat was still sore, and my breathing was labored. My favorite nurse, who was not even assigned to my case at that point, came by just to give me a hug and declared that I was her favorite patient. "How's my little one? I had to come check on her, she's my favorite," she told my nurse. I was given some disgusting sugary orange drink that I swallowed approximately two sips of before giving up and a packet of crackers in an effort to raise my blood sugar, and I was instructed to remain in the room for monitoring for a little while.

    Naturally, I picked up my printed notes and began studying for my health care test, which at this point was in only about two hours. "Uh, no," one of the nurses said with raised eyebrows, "We just gave you Benadryl. It's going to knock you out, you're not going to be able to take your exam today." First of all, I was definitely going to take this exam, because there was absolutely no way that they were going to physically restrain me and I was well prepared and ready for the test. Second of all, Benadryl never makes me sleepy (superpower?) and although I pleaded this case to the nurse, she was highly skeptical.

Shout out to whoever created inhalers,
I appreciate you even if they do come
with some rough side effects.
    About a half hour later, all of the nurses were genuinely confused on how I was still awake while laying down in the treatment room with dimmed lighting and quite a lot of Benadryl in my body, but when my doctor finally gave me the option to leave a little while later, I popped out of the bed and headed straight for my test.

    Naturally, I questioned several times whether or not coming home was the right thing to do, despite knowing in my gut that is was. My dad rebooked my flight for Friday night and my grandfather kindly agreed to take care of me during this upcoming week while my parents will be at work and my sister will be at school. I am too afraid to be left alone for long periods of time at the moment, because my lungs are in a fragile state and I likely will not be able to drive myself to the pediatrician if I need a breathing treatment.

     I forced myself to make it to class on Thursday and Friday (although I could not really participate, because my speaking abilities were quite limited). At the start of my first class on Friday morning, my professor walked into the room, pointed at me, and asked, "You surviving?" which I think is a fairly good indicator that my decision to fly home that night was a good one. Luckily, all of my professors were more than supportive of this decision and made it clear that they agreed with my choice. Sometimes it is surprising to me how poorly my health is perceived by those around me when I think that I am doing a decent job of keeping my issues under wraps.

    Luckily, the strep rapid test and culture both came back negative, but unfortunately I still do not have my voice back, my lungs feel small, exhausted, and constricted, and the arthritis in my hips and jaw is not cutting my any slack. Thankfully my family is taking good care of me and my time outside (and therefore expose to pollen) has been eliminated over the next few days.

    The flight home last night felt miserably long because I could not stop coughing and could barely communicate my need for orange juice to the flight attendant, but I knew my dad would be waiting for me at the airport when I got in and I was excited to go home and recover. Before my final flight, he texted me that he had "just finished making [my] bed with newly washed sheets," which is about the most exciting text a sick person on a plane can receive, and I was especially grateful because I knew that it would help to reduce my allergies through the night. My parents are always so generous and supportive of my medical decisions. "Just wanted to say I love you, I am very proud of you, and I am glad you're coming home this weekend. I think it is the right thing to do," my mother texted me after I declined her phone call on Wednesday night due to my inability to talk.

    When I finally crawled into my North Carolina bed, I told myself that my room would have to stay a pet-free zone. My family has two dogs and two cats, and while I love this little zoo of ours dearly, they are not particularly beneficial to my lungs. Right as I was beginning to fall asleep, I heard my tiniest pet, a small cat named Brooke, scratch at the closed door of my bedroom, begging to be let in. I initially resisted, but then she stuck her teensy black paw through the crack under the door, and my heart completely melted. I have no resistance whatsoever. Which would I regret more, not letting her in and breaking her heart or letting her in and having allergy symptoms? I thought. And so I took two Benadryl and opened the door, just as my friends and family have done for me over the last year as I have dealt with infection after infection and medical challenge after medical challenge. I like to think that we all deserve love, even if it hurts sometimes.

Tuesday, March 7, 2017

The Bare Necessities

     I adored "The Jungle Book" growing up. Watching Mowgli and Baloo dance around and sing "The Bare Necessities" could keep me entertained for hours. Whenever I see anything about "The Jungle Book" I think back to how much I loved that little film, and I still remember the words to all of the songs.

My mother (Amy) & I
     I have said it before, and I will say it again: I will always hate being sick. I will never be grateful for it or think that God ordained this suffering. I will never say that this is the path my life was predestined to take. I don't believe that I should have arthritis. If someone offered me a miracle cure, and if I could erase all of the past years of illness, I would take it without hesitation. This is a painful disease, and it has taken a serious toll on my quality of life. 

     On the other hand, I am grateful for the way arthritis forces me to prioritize the things that are the most important to me. Papers and tests and assignments do not seem nearly as stressful when you are just hoping that your body will let you make it through the day. 

      The reality is that I have been very sick this year, in brutal on-and-off phases over the past several months. I have battled my body in ways that I was unprepared for, and I have found myself meticulously weighing decisions that I never anticipated making. 

     My mom was able to spend a long weekend with me here in New Orleans, and it was so refreshing. We made sure to take lots of time out to rest and even spent a night doing face masks and watching Grey's Anatomy as I allowed my joints to recover from the adventures of the day. We spent a lot of time talking through and figuring out what we need to do to ensure that my college experience is happy and healthy, not spent cooped up in my dorm room with a failing body while making frequent excursions to Walgreens to pick up prescriptions and ibuprofen. We ventured to all of my favorite New Orleans places, from the French Market to my beautiful little Episcopal church to Tulane's campus. I loved showing her around in the city that has quickly claimed such a large space in my heart. My mom helped me think about what is most important to me and how to make medical decisions that take my quality of life into consideration. She is wonderful at balancing rational thinking with going with your gut, and I trust her advice wholeheartedly. While many other people have been trying to convince me that things will get better, my mom admitted, "You're going to get sick again," and helped me to plan accordingly, and I felt like someone finally understood how fragile this damaged immune system of mine really is. I am so lucky to have a mom who looks like a sister and feels like a best friend. She is a beautiful person, inside and out. 

Allie & I
    My friend Allie surprised me on Friday night by driving all the way down from North Carolina to visit! My mom and I were sitting on a bench in the mall, resting my joints in between stores, when out of nowhere I saw Allie coming toward me with her unmistakably gorgeous smile and open arms. Obviously I burst into tears because 1) I always cry and 2) I love this girl. Allie was a babysitter for my family who drove my sister and I home from school every day for several years, but she very quickly became the big sister I always dreamed of having and one of my biggest role models. Her open-mindedness and sense of adventure have inspired me to take risks and be myself. Watching her live such a wonderful and unconventional life has encouraged me to live fully and authentically. Seeing her in that Metairie shopping mall was a huge surprise and a dream come true, especially in the midst of what has been a challenging month or so, and I am so thankful for the time we had together this weekend. My mom and Allie and New Orleans, all at once? I could not have been any happier.

    When I am feeling utterly awful, whether it is 2 a.m. and I am battling severe nausea or it is 9 a.m. and I am sitting on the landing of the stairs up to my classroom because I am so exhausted that I need a break before making it all the way up, I think about the things that matter the most to me. I'd like to go to divinity school one day. I adore my family and I have the sweetest friends. My roommate and suitemates couldn't be better people. All I want is to love as deeply as possible in whatever time I have on this planet.

     And then, of course, are all the tinier things. Maybe these things do not constitute necessities, but they sure do make my quality of life a whole lot better (can you tell that I have been thinking a lot about quality of life lately?) and so I am grateful for them. I love resting my head on my mom's shoulder, and I love when my roommate Allison calls me "Rach," and I love perfecting my eyeliner. I love vegan pancakes, and I love secondhand bookstores, and I love walking through tunnels of Louisiana oak trees. I love riding the St. Charles streetcar, and I love long-sleeved pajamas, and I love surprises.

     When we think about basic things people need to survive, we often mention health. Sure, we need some degree of health for our hearts to keep on beating and our lungs to continue the life-giving pattern of sucking in and releasing air. I am no stranger to the workings of the human body. But when I am ill, health does not feel like one of these bare necessities. Loving people, going to church, crying, and laughing - these all seem like necessities to me. Everything else is just a bonus that I typically take for granted.

    I think if all I get to do in life is love people and share in their joys and sorrows I will be content. Maybe that's not true. I certainly don't feel that way when I am playing the Zofran waiting game or receiving not-so-great news from doctors. I have to have at least some degree of health to love people in the way that I want to. It takes energy to pick up the phone or write out a card or give a hug. Maybe part of coping with this disease is learning how to love even through suffering. I like to think that I am improving at that, but I still have a ways to go.

     There are many things that must be put on hold when I am sick, from attending classes to going on long bike rides, but there are also many things that can survive the turbulent waters of illness. Yesterday evening I called a friend from home who left me a sweet voicemail last week. After returning from my afternoon class, I was feeling nauseous and intense pain had crept into my right knee. I was too exhausted to be frustrated and too miserable to be angry. Yet talking to someone who leads such an extraordinary and meaningful life distracted me enough from my shaking hands and racing heart (too much Albuterol, but what can I say, I have to breathe) to make me feel like maybe people think of me as more than the product of my disease. Yesterday, this phone call was more nourishing and sustaining than any of the pills I took.

"The bare necessities of life will come to you. They'll come to you." 

Wednesday, March 1, 2017

The Last Pain-Free Day

An adorable dorm picnic Isabel and I had last
semester on a rainy day, featuring stolen
dining hall food.
     My dear friend Isabel and I were doing some homework in one of our dorm's common rooms on Monday afternoon for a few hours, and every once in awhile we found ourselves wrapped up in conversation. She is an amazingly easy person to talk to, wise beyond her years, and one of the most genuine people I know. Isabel is endlessly kind and, although I am not quite sure how she does it, she always gives me space to feel whatever it is that I am feeling without any judgment. At one point we found ourselves briefly discussing the process of learning that one has a chronic illness. "I don't remember it that well, since I was only eleven," I confessed to her, "but I still think it's so strange that one day you wake up and feel pain, and then it stays with you for the rest of your life. You never expect that some random day will be your last day without pain."

      I don't remember my own so-called "last day." I have no recollection of the day before my elbow started to hurt. I certainly did not expect that a painful elbow would lead to chronic pain, years of fatigue, long-term immunosuppressant use, battles over a wheelchair, countless hours of physical therapy, my mom injecting poison into my body ever Friday night as I sat on the edge of her bathtub, etc. I have no idea how this all happened so fast.

     Now that I have been living with this disease for seven years, I feel like I am supposed to be an expert. I am supposed to know how to manage my pain, how to concoct the perfect medication regimen, and how to make long-term decisions regarding my illness. Sometimes it feels like I have been living with arthritis my whole life. Sometimes it feels like it has only been a month or two.

      Yesterday we received results back from a brain MRI I had on Sunday morning. I am glad to report that the images were normal, and my ENT expects the cranial nerve issue I am dealing with at the moment, an unusual complication from my tonsillectomy in December, to resolve itself in about six months! Receiving a diagnosis for an issue expected to be temporary is not something I take for granted. Problems that go away are little miracles when most of your pain is chronic.

Colorful artwork in the MRI waiting room
     The truth is, I am scared of the path ahead in terms of my chronic illnesses. I am afraid of the future and I am yearning for the perfect world that I am confident exists outside of this one. The number of tears I have cried over the past week is horribly embarrassing. I have literally had to clean my phone every day just because of the film of tears that has built up on it. It seems that I have reached a breaking point. I know I am not all alone in the world of autoimmune disease, but for some reason knowing that is still not cutting it for me at the moment.

    I hope my last pain-free day was wonderful. I wish I could say that I took a moment to stop and appreciate my health during those final hours of total wellbeing, but I am almost one hundred percent confident that I did not. I suppose not many eleven-year-olds actively appreciate their youthful bones, but I still feel a little sad when I think about how ungrateful I was in a world where so many people are sick and hurting.

    Yesterday my hands were swollen and stiff, and I could feel the fluid in my achy knees. I paced back and forth in the hallway of my dorm talking to my mom on the phone, and the pain in my knees as I paced caused me great anxiety, which only made me pace more, which hurt my knees more... you get the picture. At one point I looked down at my hands in despair. The pointer finger on my left hand was particularly inflamed and red, and it looked so out of place on my normally thin, bony hands. I began to sob all over again, after only a couple of minutes of holding it together. I felt strangely disconnected yet simultaneously trapped within my own body. I felt so powerless.

     I was hoping last night would be better, but unfortunately my stomach was unwilling to allow me a full night of sleep. I woke up around two o'clock in the morning feeling very ill. I took a Zofran and laid back down in my bed. Only thirty minutes until the Zofran kicks in and I stop feeling nauseous, I repeated to myself as I tried to concentrate on the humming of my fan. The time was 2:15. I just had to make it until 2:45. I have played this miserable waiting game many times before, and I was determined to play it again.

     At 2:22, only seven minutes into my thirty minute mission, I realized that I absolutely could not wait out the medication. I threw up the tiny bit of dinner I had been able to eat that night and fell back asleep. My muscles were weak and my lower joints were unstable, and although the goal was to wake up feeling refreshed and back on track, the morning did not cut me any slack. So much for a strict sleeping schedule.

     At seventeen years old, I am supposed to be at the peak of my health. While walking to our campus' Jewish center this morning, I had my music on shuffle and my earbuds in as I soaked in the warm New Orleans sunlight. The ABBA song "Dancing Queen" came on, and while I think I was supposed to feel free and happy, I just felt disappointed in my body. Call it a pity party, call it a smack across the face from reality, call it whatever you please. Some days it is difficult to push aside the desire to be like everyone else. I am seventeen - why am I limping around instead of dancing?

    I wish I spent my last pain-free day being the dancing queen. Unfortunately I have not yet seen a pain-free day at seventeen and likely will not in the three months until my eighteenth birthday, so this is a dream that will have to die. And so I wonder - which of my dreams will wither as my autoimmune disease progresses and looms over me, and which will survive?

Monday, February 27, 2017

English Sheep

      Last June, I was given the extraordinary opportunity to go on a literature-based trip through England with some of my peers and one of my favorite high school teachers. You may recall my post, "Problem Child," in which I wrote about my English adventures and included some photos from the trip.

      The past few weeks (or perhaps months, if we're being honest) have been hard on my body and hard on my mind. This weekend has been one of the longest and scariest that I have experienced since middle school, and unfortunately due to Mardi Gras break it won't even be over until Wednesday. I have called my parents in tears way too many times and the prospect of more medical tests and more specialists makes it feel like someone is pushing my head back underwater every time I try to come up for a gasp of fresh air.

      As I have spent countless hours curled up under my comforter hoping and wishing and praying that the pain would go away, I have found my thoughts drifting back to a single anchor: sheep.

All of the white dots are sheep

     On the literature trip, we were able to spend a good portion of our time in the countryside, traversing through green, picturesque hills and following the comforting babble of quiet streams, trying not to fall as we steadied our boots on slippery black pebbles. On one of our first nights in England, I went with some friends to wander around the countryside in the early evening after we finished dinner. It was chilly outside and I remember having swollen knees and fingers and being tempted to head straight for bed, but I am so glad that I decided to tag along. As we followed the gravel road away from the hotel, we found ourselves captivated by the dozens of sheep that grazed peacefully through the bright green grasses. I was as fascinated by them as everyone else, since stumbling across flocks of sheep never really happens to me in my hometown, but I definitely did not think as much of it then as I do now.

     Everything sort of feels like chaos. My body is a wreck and as a result my mind is a wreck. Mardi Gras has obliterated my normal routines and everyone is loud and all over the place. There are dozens of Walgreens prescription pill bottles scattered on my desk and in my drawers, and I am currently on two medications that I have not yet found the energy to learn how to pronounce. Every time I check the "health issues" section of my hospital's personalized patient portal I find something new. My physicians have entered into the system issues that I did not even realize I have. But in the midst of what has been a chaotic and overwhelming year, my mind settles when I focus on sheep. They are quiet and tranquil animals. They never cause a scene. They are easily frightened but never frightening. They are content with grass, sunlight, hills, and each other.

     I have always loved cities, but whenever I am sick I long for the comforts of a small town. I have never lived in a small town or rural area, so perhaps I am over-romanticizing them, but I like the idea of everyone knowing each other's names and of gazing up at the stars at night. I like the idea of befriending sheep and of looking out of a kitchen window only to find rolling hills that seem to stretch for eternity.

A flock of paper sheep given to me for free in England. Their names are Magenta,
Cilantro, Tangerine, Cerulean, Violet, and Christian. Shout out to my roommate
Allison for assisting in the naming process and accepting them as a part of our room.

    I went to England expecting to love London, with its twinkling city lights and busy energy, but what I ended up loving the most were all of the sheep in the countryside. There is something so enticing about a content and simple life. It seems that sheep have far surpassed me in the whole "figuring out life" process, so perhaps learning from them is not such a peculiar thing. I dug through my disaster of a desk drawer this morning and pulled out the small blue journal I took with me on the trip. Under Day One, I wrote "Sheep!" and under Day Two I wrote, "All the sheeeep." I think I was supposed to get something more academic out of the trip, whether it be insights about Shakespeare or a new perspective on the Brontë sisters, but while I certainly learned quite a lot about English literature, the most impactful lesson that I learned came straight from English sheep.

    Is it weird to miss sheep? Probably. Could I have had this same experience in a rural area of the United States without journeying to an entirely different continent? Perhaps. Regardless, I wish I could spend an hour or two in the English countryside today. I wish I could hang out with some sheep and wander through tall grasses. I wish I could dip my fingertips into the cold, flowing water of small streams and feel a shiver run up my arm, just electrifying enough to remind me of how fully alive I am. I wish I could feel like the world is teensy tiny again instead of huge and overwhelming.

     More than anything, I want peace. I want peace from all of the stress and pain of living with rheumatoid arthritis. I want everything to be spoken in whispers and kindness. I want simplicity and ease. I want spontaneous phone calls with friends and family and laughter that is light and airy. I want to bake with my sister while we discuss everything under the sun. I want to focus only on loving people, on staying with my flock, and on being kind. If sheep can prioritize these things, then so can I.