Sunday, January 20, 2019

Celebrations

          Friends, I have happy news to share — the fall 2018 semester, my fifth semester of college, was my best one yet! It's been a while since I've posted on this blog, but that's because I've been enjoying all that life has to offer with a disease that has been, for the most part, controlled. Here are some things that I hope you will celebrate with me:

1. In the fall 2018 semester, I had zero infections. 
          My only trip to student health was because of blood in my ear following my July jaw surgery. I was not acutely sick, not even once! If you have been keeping up with my health throughout college, you'll know that this is an absolute miracle, and something that I never foresaw or expected but which I was eager and happy to receive. I am so grateful. No infections meant that I got to spend lots of time with people I love and maintain excellent class attendance.

What do you do when you are infection- and flare-free? Go to dinners and
ballets with sweet friends, of course! Love you, Laura!

2. The new Humira formula makes injection nights almost painless. 
          The shots used to burn very badly, which negatively affected my compliance and sometimes made injection nights a dramatic and tearful event. The new formula does not have the citrate in it, and so it is painless to inject. The only pain is the needle stick, which is very manageable, and would probably be even more manageable if I would rotate injection sites so as not to repeatedly stick a needle into scar tissue... but we're living and we're learning. I am so, so, SO grateful for this new formula, especially since my Humira is now a weekly injection rather than an every two weeks injection. 

This is the iontophoresis device that I hold while
the treatment is happening. The cords are
attached to four pads, which are attached to each
side of my face and each of my shoulders.
3. We finally found an effective treatment for my jaw. 
          Nothing was improving the pain, function, or stiffness in my jaw aside from minor surgeries in which steroids were injected into the joints, until my physical therapist and surgeon collaborated to start iontophoresis. Electric currents send steroids into my jaw through patches placed on my skin, a process which takes about 45 minutes, twice each week. While it is time-consuming, uncomfortable, and exhausting, my jaw feels much better than it has previously. I am doing a lot more singing in the car and experiencing significantly less discomfort, which I am very grateful for. 

4. This winter break was my first winter break of college without surgery. 
          The winter break after my first semester of college I had a tonsillectomy. The winter break after my third semester of college I had a sinus surgery. Both were followed by a painful recovery process. This winter break, I had no medical procedures! I got to spend lots of lovely time with friends. I got to enjoy being 19, and all of the laughter and love that comes along with this age. It was wonderful. 

          Unfortunately, after a semester and winter break of medical relief, I currently have an infection. It is so disappointing to be sick when being sick carries so much weight in my life. When I woke up on Friday morning with an intensely sore throat and stiff joints, I instinctively sighed and reached for my thermometer and opened my laptop, to go through a routine that I've been through so many times before. I emailed my professors to let them know that I would be absent and texted friends to ask for class notes. One of my friends texted me after class, writing, "I don't want to make assumptions, but it seems like this might be frightening given the past couple of years. It's okay to feel scared." Tears welled up in my eyes when I read that, because I was frightened and I was scared and, in fact, I still am. When I had a sore throat at the beginning of last fall, it did not go away until the end of the semester, and turned into a horrible conglomeration of autoimmune systems that turned my life upside down. While I know that getting sick is common among college students, and that my arthritis tends to flare in response to infections, it is hard to stay calm and avoid catastrophizing. I was overwhelmed with gratitude for a friend who could sense fear without imposing it, and who could say out loud something true in such a gentle way. 

          The thought of having to wear a medical mask again makes me shudder. The very last thing I want to do is go to the doctor or start a round of antibiotics or steroids or hear that I should maybe stop existing in social spaces. I am on higher doses of immunosuppressants than I have ever been on before, and my ability to fight off infections is impaired, which leaves me feeling vulnerable and weakened in light of a basic illness. And I am afraid that after this one goes away, there will be more. 

          Then, of course, comes all of the blaming myself.  I should hand sanitize every hour. I should study in my room more, instead of in crowded coffee shops. I should stay further away from people. I should be more careful about sharing food with friends. But this isn't how I want to live my life. 

          I was supposed to spend this weekend on a retreat at the beach, with people whom I love dearly and new friends I was excited to meet. Today, it is difficult to feel my feet in socks, under the covers, shaking from occasional chills but stiff from arthritis, rather than sinking barefoot into the gritty, salty sand. The whirl of my ceiling fan is no substitute for the crashing of ocean waves. I would rather be elsewhere. I am disappointed in my body, and in how my body tethers me to isolated spaces when I am ill instead of permitting me to venture into places in which I feel alive. 

          I desperately want whatever is happening in my body at the moment to be a normal college student illness. I am hopeful that this semester will be healthy, and that this is just a small bump. I am also terrified. So, for now, I'm just living with that fear. I'm grateful to have friends who are willing to live with it alongside me, and who have validated it and acknowledged it. Over the last fews days, through texts and even phone calls where I didn't have to talk, I just had to listen, my friends have taken up space in my life so that there will be less space for fear to take up. My parents and sister and dogs have offered distractions and company. 

I spent lots of time last semester sitting on the steps of
Wilson Library, reading and thinking and writing and
watching. What a lovely place to learn!
          One element of my life has stayed completely consistent between my first three semesters, which were medically miserable, and my most recent semester, which was medically decent — the love of my friends and family. They have swarmed me with support and encouragement in the midst of my suffering. They have laughed with me when I've been feeling well, and maintained a constant presence in my life that is not dependent on how healthy or sick I am. They have opened up candid conversations with me about the realities of living with a serious illness, and they have sensed when I just need to talk about anything else. I am not grateful to be sick, but I am grateful to have gained a deeper sense of the importance of community. I am grateful for my community. 

          While I do feel fearful at the moment about what the future holds in terms of infections, I do not want that fear to take away from my excitement and gratitude about the previous semester. It was such a wonderful opportunity to feel truly free and able to construct my life in a way I wanted rather than in a manner dictated by illness. I like to think that I make the most of life regardless of how I am feeling, but I must admit that it is much easier to enjoy when I am not at the doctor's office every single day. 

          No matter where I look, though, and no matter what state I am in, I see people who love me and people whom I love. And I can't think of anything better. I can't think of anything more valuable to celebrate. Thank you for celebrating with me. 

Thursday, October 11, 2018

One-Third

          On Monday afternoon, I laid in my bed with aching joints. The pain was particularly severe in my fingers, hips, and jaws. I vomited. I moved from my bed to the carpet for a bit because my intestines felt as if they had been put through a meat grinder.

          I felt like meat. 

          I also felt like an intruder on my university's campus, in a world of bright-eyed students who are all seemingly healthy and energetic. I had the eerie sense that I had been one of them just a few days before, but then I felt like I was invading their upbeat space with my limping and fatigue.

          While the onset of this global pain, stiffness, acute nausea, and headache felt sudden to me, I knew it was likely the result of skipping my medications the weekend before, which caused me intermittent problems last week. For example, on Saturday morning, I was at an event in which we had to draw the basic outline of a body, and then answer specific questions that were divided into six categories. The categories represented the head, the heart, each hand, and each foot. I wrote out my answers to the head and the heart, and then I had to stop writing. My hands hurt too much to answer the questions for each hand and each foot. The time for writing was up, and I had spent most of it staring at the little that I had completed and looking around enviously at how full everyone else's page was.

          I scolded myself for being jealous of hands that don't hurt, but the line between jealousy and embarrassment is extraordinarily thin, and so I also found myself instinctively trying to cover up my incomplete sheet with folded hands and a book. I was terrified that someone would see that I had only finished one-third of what was assigned, and would think that I wasn't taking it seriously. I was afraid that perhaps they would think I only cared enough to complete one-third of an activity they designed. I was afraid of being perceived as the nineteen-year-old who thinks she is too good for a task, particularly when quite the opposite was true. I literally was not good enough to write a few more sentences. It was not until that night that I thought about how cruelly appropriate this situation was. I can pull together the head and the heart in the midst of a flare, but the limbs are in jeopardy, and I fear that the failure of the limbs makes people question the head and the heart. 

          On Monday night, during a tearful phone call to my mother, she offered to allow me to dictate to her an essay that was due the next day. I would do the talking, she would do the typing, and I would exit the deal with a completed paper. She is a saint, but I could not take this offer. "My brain doesn't work like that," I insisted, feeling my eyes growing puffier and my cheeks damper, knowing that so much of my process of writing involves reading the sentences over and over again, rearranging them in whatever way is most impactful. For me, being an English major primarily consists of a lot of reading and a lot of staring at words until I figure out how to make them come to life. In the context of literary analysis papers, my brain is no good without my hands.

          My health improved after Monday, and I was progressively feeling less like meat and more like a living, breathing human being. My mom and sister whisked me away from campus on Tuesday night and into a movie theater, which I think gave me some humanity points back. A friend who knew I was struggling called to give an "admittedly dramatic, but listen anyway because this will help both of us" account of her terrible professor. I didn't cancel any plans with friends, even when I didn't feel like hanging out. I felt more and more alive, not only because I was in less pain, but because I was surrounded by people who acknowledged and lived into my wholeness when I could not.

          The stormy weather today, however, did me no favors. On my walk home, wind forced me to clutch my umbrella so tightly with my sore, arthritic fingers that I could have burst into tears at any moment. My hips, knees, and ankles felt like they might execute a coordinated attack to bring me crashing down into the concrete rivers. My jaw and elbows felt puffy. When I finally got back to my room, I peeled off wet clothing, opted for pajamas, and crawled under my heated blanket as quickly as I could. Heat is not a cure, but it has helped. I will take what I can get.

The only thing better than a heated blanket is a heated blanket plus this cutie!

          My hands and feet cannot seem to keep up with my head and heart. I've spent more time that I would like today trying to synchronize all the parts of me. It takes more effort than I can describe. Tonight, I am grateful for people who trust my head and my heart, even when my hands and feet are failing. I am grateful for the team that works to try to get my body to function normally, so that I can live into all that I think and love in practical ways. I am grateful for my mom, who offered to step in in a tangible manner when the dissonance between my brain and hands seemed irresolvable.

          I am unsure whether or not anyone noticed how incomplete my Saturday morning answers were, floating in isolation on a mostly blank sheet. I hope that if they did, they decided to trust my intentions. I hope I remember how much I rely on this grace. I hope I extend it to others.