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.