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.