Tuesday, December 12, 2017

A Semester Behind Me

      I am so, so tired. This semester chewed me up and spit me out. I expected to feel triumphant upon finishing my final exam at 9:45 this morning, but I feel broken and weak and weary. Yet this brokenness is forced to coexist with the fact that I also did something I thought I had no chance of doing just two months ago: I finished a full course load during my first semester at UNC.

      Many people have told me that they are proud of me and/or that I should be proud of myself, but as appreciative as I am, I am struggling to embrace that sentiment. I cannot convince myself that I am proud of the semester, but I am relieved. Maybe relief is the best I can do right now.

Hannah & I - Mortality Beach Day

     On Sunday, particularly in the morning, I dealt with severe nausea, but I was determined to make it to church, because I figured that if I was going to have a completely empty stomach I might as well have a full soul. I stuffed my purse with plastic grocery bags, hoping that I could at least prevent my class and the congregation from hating me if I continued to be ill every 10-15 minutes. I drove to church, allotting myself 20 extra minutes because I was so sick, but was only a pinch away from driving straight to urgent care for IV fluids and injectable anti-nausea medication considering that in the 3 hours prior to when I sat down in my car to start the drive I had already vomited over a dozen times. I stayed in the right lane and became obsessively aware of all the places I could potentially pull over. I ran inside and threw up as soon as I made it to church, stared blurrily at my teary, bloodshot eyes as I washed my stiff, arthritic hands in the sink, and contemplated lying down on the carpet of the classroom for a few minutes before everyone arrived. I decided that even severely nauseous people can be classy, so I sat in a chair with my head rested on a pillow instead. In a true Christmas miracle, I began to feel like my vomiting was over, but I was exhausted and the reduction of the nausea forced me to finally notice the swelling in my hips.

      During communion, I quite literally begged God to help me hold down the blood of Christ. I ate lunch successfully and thought I was completely recovered, and then upon drinking one small cup of water after an evening service I found myself vomiting in the church bathroom yet again. It was a day of desperation and defeat, especially considering that I had two exams yesterday and two today and no desire to study with such a painful stomach.

      I woke up yesterday feeling pure gratitude for my lack of nausea, but in the middle of my first exam my medical blessing was quickly replaced by a fever, sore throat, fatigue, and abdominal pain. I fought through and took another exam yesterday afternoon, submitted a final paper that is technically due on Wednesday last night (I am feeling miserable, but I need to be done), and finished my last final at 9:45 this morning.

      I walked out of the accommodations center this morning with the entire semester behind me yet with so much ahead of me. I was and am so exhausted. I walked down the stairs and out of the building feeling my hips and knees and ankles all too vividly, reflecting on what a difficult semester I have had and wishing that someone could wrap me up in a cloud to allow me to truly rest for a little while. Before  I could even make it outside, I threw up in a restroom, and now, even as I am writing this in a heated space, I am shaking uncontrollably from internal chills.

     Today also marks a week before my next surgery, which will be my third time undergoing anesthesia since mid-October. I am nervous for recovery, nervous about the medications that make me loopy, and nervous about pain. In between now and then, I am visiting New Orleans to catch up with some of the incredible people who have supported me since the very beginning of my college career. Finishing an unbelievably painful semester, visiting a school that I adore but that was snatched from me by my health, and undergoing surgery all in the span of one week is overwhelming. I am hoping that life will be peaceful after this.

    I wish I had some grand lesson that I learned from this semester. To be honest, it just hurt a lot. More than I thought it could. It is not a tragedy, but it would be wrong to try to warp it into some motivational story. I had appointments and underwent procedures with over ten specialists, none of whom have been able to diagnose my current symptoms, and I was instructed by my doctor to wear a mask literally everywhere I went, and I took more than thirty days worth of three different antibiotics, and I brought my nebulizer just to watch Netflix with friends because I was so scared of not being able to breathe, and a mystery autoimmune disease made me feel more alone than I have ever felt, and a boy in my English class told me he would kill himself if he were me, and I underwent a minor jaw surgery, and my beloved dog, who suffered from arthritis just as I do, died, and my chest hurt so badly that I ended up in the emergency room at 2 in the morning, and I cried in the offices of several administrators as they helped me to decide whether or not to withdraw.

   That is one narrative, and it is a crucial one. I am afraid that I will be sugarcoating it by tying it to another narrative, but it feels impossible not to, because these two realities coexist.

    A rheumatologist looked me in the eyes and told me she believed me, and my friends assured me that my medical mask was cute and fancy, and my infectious disease specialist freed me of antibiotics as he released me from his care with an astounding degree of empathy, and a friend took my hand and sat on my bed with me when the nebulizer permitted panic to seep in, and my community rallied together to raise over $2,000 for the Arthritis Foundation, and one of my English professors implored me to just keep breathing, and my mom held me in her arms as I recovered from all of my procedures, and I had the opportunity to see my beloved dog trudge through the sand and stick her paws in the ocean before she died in my arms, and my professors worked with me to accommodate such rapid and mysterious changes in my health, and I was able to keep all of my academic courses without missing a single assignment.

    In some ways, I hope this semester counts as a failure, because I do not want this to be my success. I am still processing all that has happened. I have no idea how to describe it. I know that I am glad I am done. I am glad that these awful three months are behind me. At the same time, I feel unusually lucky. I have had so many people rooting me on and pulling me up from the ground and assuring me that everything will be alright, and I am painfully aware that this support system is not something everyone has the privilege of depending upon. So thank you for believing me, and thank you for staying, and thank you for all of the tears you have cried with me, and thank you for all of the hugs, and thank you for going through this mess of a semester alongside me.
   
    On August 21st, the day before my first day of classes at UNC, I published a post in which I wrote, "I am giving my goal of a positive, relatively healthy college experience another chance." So here I go, giving myself yet another chance to try to experience college at its best in the spring. Don't tell anyone, but I am very, very hopeful.

Saturday, December 9, 2017

Intactness

     What do you do when your illness seems to be stripping away the very essence of who you are? Well, I don't know have the answer, but it is a question I have been repeatedly confronted with over the past couple of days.

      Yesterday, when I left a lovely lunch with a friend and walked back to my car, I felt intensely lightheaded and dizzy, like I was having an asthma attack that was reducing my blood oxygen without actually having lung inflammation. My muscles felt achy and definitely not terrible but definitely "off," my chest was hurting in a way that did not feel like costochondritis, and the nausea that I had assumed that I had knocked out earlier in the morning with Zofran had returned. My first instinct was to go back inside the store/restaurant, because I was about 50% convinced that I was on the verge of passing out and did not necessarily want this taking place while I was isolated in my car, but I also had a strong feeling that I might throw up if I stood up again so I sat in my car for just a moment. I tried to ground myself, leaning my head back with my chin up towards the car ceiling as if I was waiting for healing to drop down from heaven, before I decided that I was definitely okay and safe to drive. Feeling somewhat better, I headed off to my next activity.

     As I was driving, I thought about plane tickets to Paris or Cape Town or Buenos Aires or Seoul. I thought about trapezing through Spain or meeting new friends in India. Whenever I become fixated on flights I know that I am not at all myself, and that I am trying desperately to find something bigger, grander, and greater. At the same time, I want something smaller, cozier, and more intimate. I want conversations about memory in the library at 2 a.m., I want to consistently have the courage to take someone's hand when I know they are hurting, and I want to bake desserts using recipes that are way above my skill level and destined to become sugary disasters. Desires for something grand and for something simple seem to coexist.

Shout out to Ben and Jerry's for their
vegan flavors, and shout out to my
stomach for being able to handle it. 
      Later in the evening, I found my muscles so achy and my body so inexplicably exhausted that I locked my car doors, fell across the center console and the passenger seat, and took a twenty minute nap in a parking deck. I would never do this normally, but I quite literally could not summon the energy to walk to my dorm or to a library or really any other building in which sleep might have been even remotely acceptable. I felt so broken, but did not even have the energy to cry. "I am feeling really not like myself," I texted to a friend, slightly confused about how to order my words, but this explanation seemed to fall short of what I was actually experiencing and so I barely put any effort into further describing the situation. My fingers stumbled clumsily over the keyboard and my phone felt heavy in my hand. With the sense of longevity that sometimes so cruelly accompanies pain, I wondered if I would ever feel like myself again. I pondered this existential question this while slumped across the seats of my car with some of the heaviest fatigue I have ever felt.

    By late last night I was able to laugh about these incidents, the ridiculousness of this entire semester, and the weird health challenges my body is always testing me with. But all of these moments in the car were not funny. They were terrifying. Not feeling like myself is not funny, either. It is equally, if not more concerning than the purely physical symptoms, a direct and explicit threat to my personhood that leaves me feeling completely lost. I feel like everyone is so worried about all of the parts and pieces of me, my lungs, joints, heart, tendons, muscles, esophagus, stomach, lymph nodes, etc. The truth is, in my most desperate moments I pray for intactness, not for each system or bone. I pray to feel like myself and for my sense of identity to be preserved despite all of the medical chaos. Intactness is a difficult element to measure, considering that I cannot peer into another reality and see where I would be without all of my health problems. Perhaps it is a good thing that we do not have the ability to see our best selves.

    Whenever I picture the life of a healthy me and scold myself for not accomplishing all that I imagine her to have achieved, I think of a comment my dear friend Cara left for me about a month ago. "The best of you is just a saying from those who have never experienced chronic disease," she wrote, "you ARE the best you can be every day."

      I also think of a conversation I had with Faith last year when I was in New Orleans. I had called her in the midst of what I now know, looking back, was one of the most desperate and lonely moments of my life so far. "You are doing your absolute best," she assured me, gently but with a tinge of authority that forced me to accept her reminder. Maybe a nap in a parking deck yesterday was my best. I am grateful for these two friends and their healing words.

     When I am really not feeling like myself, I try to be intentional about doing things that restore my sense of identity. Hanging out with old friends, watching Grey's Anatomy, cuddling up with my dogs, writing essays, and doing my makeup all remind me of who I am and what I enjoy. Today, I had the opportunity to spend most of the day shopping with my sister, Hannah. I almost cancelled our outing, because I woke up with painful knees and fingers, but I decided to push through because I knew spending the day resting would be good for my body but not so good for my soul. I looked rough and felt rough, but I enjoyed the snow and enjoyed shopping and enjoyed time with Hannah, and these are the things that will matter even many years from now. So why did I skip studying for finals to go to the mall? Because this is the only way I know how to live in the face of all of these questions about who I am and whether or not I will be okay. Perhaps it is not the best or most sophisticated way, but it is the only way I have figured out.

       I hope to stay intact, especially if the lightheadedness becomes a recurring problem, which I do not anticipate but would not be shocked by given all of my other #MysteryIllnessCrisisOfFall2017 symptoms. I hope to feel like myself, and I must admit that I am pretty anxious about this given that I am having surgery in just ten days, after which I will certainly not feel like myself for a little while during recovery. I am lucky to have wonderful friends, both at UNC and elsewhere, who stick with me even when I don't feel like "me." I cannot imagine how much more painful yesterday would have been without quality time with three different friends, each of whom offered words of encouragement and empathy and understanding. I cannot imagine pushing through today without getting to see Hannah, my hilarious and gorgeous sister who seems to view me the exact same way whether I am bouncing around or warning her that I might throw up at lunch. If they all managed to see a "me" through all of this mess, then maybe I can manage that, too.