Monday, April 8, 2019

How Love Appears

          Hello, dear friends. It's been a while. I have spent the past couple of months enthralled in all that life has to offer when it is not consumed by illness. I have spent tons of time laughing with friends, going on adventures with other college students, visiting graduate schools, and working on a lot of projects that are important to me. I have loved the opportunity to just be a college student and to shed some of the demands of a sick body.

          My wake-up call of this spring semester, which reminded me that my body is actually sick and pretending that it is completely normal all of the time is a bit impractical, took place a couple of weekends ago on a Saturday afternoon. On a graduate school visit in Chicago, the travel and walking and cold air caught up to me, and as my family walked around the city on Saturday, I found myself in significant pain. Our last walk, which consisted of walking several blocks and crossing the river to get back to our hotel and head to the airport, was brutal. I dragged my feet and moved slowly. Each hip, knee, and ankle felt as if it had been dunked in molasses, duct taped, and frozen, all at the same time.

          Love felt like the laughter that tumbled out of me when my sister stayed back to walk slowly with me on the sidewalk, creating a cute cheer to motivate me to make it to the hotel. "Hooray! Hurrah! The river is not far!" she repeated with an enthusiastic smile. My sister is by far the best at making me laugh when I am hurting. Giggling with her in the midst of pain, while putting one aching foot in front of another on a grey sidewalk, made the whole world feel a bit kinder.

          I made it home from Chicago intact, despite feeling like I was crumbling. I attempted to do the everyday things that one must do. I wrote essays with aching fingers and heavy eyelids. I finished course readings while lying in my bed. I carried on with most of my normal activities despite the uptick in suffering, but I found myself moving through life at a significantly slower pace.

          Love smelled like the constantly changing aroma of the grocery store. When a friend invited me grocery shopping and I confessed that I was not moving as quickly as I normally would, she responded, "More time to spend with you!" instead of retracting her invitation. Her patience never once wavered, even when I was forgetful and fatigued and dragging behind as we navigated each aisle.

          The travel-induced deterioration of my health culminated last Monday night. That morning, my allergies were so disruptive that I was forced to take Benadryl on top of my daily control medicine, which threw me off. I struggled to maintain energy during an afternoon activity, and essentially crashed as soon as I got to my class. I found myself wondering if I could go out in the hallway and just lay down for a while without alarming anyone. The pain was excruciating in almost all of my joints, and I was confident that I was running a fever. My apartment thermometer soon confirmed this fear, and, devastated that adventures in Chicago and time in airports and on airplanes resulted in increased illness, I cancelled most of my plans for Tuesday and fell asleep on a pillow tasked with both supporting my aching neck and soaking up my tears of defeat. Luckily, my fever did not continue into Tuesday.

          Love tasted like tofu at one of my favorite college restaurants, sitting across from a sweet friend. When I confessed to a friend who also lives with chronic illnesses at dinner on Tuesday night that I almost had to cancel our plans due to my Monday night fever, she assured me, "I would've told you to come over and watch a movie instead," reminding me that hanging out while I am sick is still an option and that she completely understands the feeling of wanting to be someplace that my body deems impossible.

          On Thursday night, I was struggling to sleep due to joint pain. I turned my phone off and turned it back on. I opened my window blinds and closed them again. I placed heat on my joints and then switched to cold. After an hour or so, I was losing hope. I sent a text to a trusted friend that simply said, "Hello I am so stressed."

          Love looked like her name popping up on my screen just seconds after I pressed send — she was calling. She did not mind that I was weepy, but my tears were gone within minutes because I was so engaged in conversation about topics that had nothing to do with illness. She talked to me about everything under the sun until midnight. She distracted me from the pain and I was able to fall asleep shortly after getting off the phone.

          I thought my health was improving over the past few days, but this evening has been tough. My fingers hurt and my wrists hurt and my knees hurt and my hips hurt. My hips are the worst, and I wish that I could simply take them out of my body and set them on my desk and reinsert them in the morning. That does not seem to be an option. My neck and spine have also been giving me quite a bit of trouble lately. I finally called my physical therapist. I have not had any appointments in over a month, and I am supposed to go twice per week. I was afraid of being scolded for this, but when I called and confessed that I was having a lot of neck and spine pain, for the first few seconds I heard nothing. It was as if the universe needed to take a breath.

          Love sounded like the pause on the other end of the line after I admitted how much pain I was in. There was a holy moment to wait, to understand, to think, to listen, to process. Before she reacted, she simply let my confession of pain hang between us over the phone, and I found myself profoundly grateful.

          I have no idea if tomorrow will be better or worse. I am unsure of how to predict these sorts of matters. I do not know what I will feel like when I wake up. This is simply the reality of living with an illness that waxes and wanes. Of all of the illness metaphors out there, I quite like thinking of my body as the moon. There is something magical and mystical about it. It encapsulates none of the suffering. And right now that's okay with me, because as much as I value honesty and vulnerability, comparing myself to the moon feels like a sparkling image that can pull me through the night.

          Love smells, feels, tastes, looks, and sounds different each week. I think love exists in ways that are just as pure and astounding outside of the context of illness. I wish I did not have so many problems with my immune system. I wish I was not sick. But I am here, and I am surrounded by people who are so good at loving people. I am grateful for that.

Sunday, January 20, 2019


          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.