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." 

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