I cannot drive with my car windows down because of all of the pollen in the air. While this is admittedly a minor inconvenience, especially considering all of the much more major medical events of the week, from restarting a low-dose chemotherapy drug in the form of weekly methotrexate injections to receiving MRI results to scheduling a bunch of appointments for once I am done with exams to waking up with intense stiffness and pain in my lower limbs and fingers every morning so far, I am still mourning the loss of the ability to blast Lorde while feeling the sharp wind of the highway tangle my hair, in a way that completely blows this everyday joy out of proportion.
On Friday night, with a vial of methotrexate sitting on the desk beside my bed, alcohol swabs on my pillow, and a packaged syringe and needle in my lap, I pulled out my Spanish notebook and wrote what I later deemed to be The List of Humanizing Things, knowing that I might need it the next day. I was about to inject my first dose of the drug since I stopped it several years ago, citing a strong dislike of feeling like I had the flu once per week, which resulted in noncompliance which resulted in inefficacy which meant that we should try something else. My new rheumatologist knew within my first appointment with her how much I hate this drug, and so when she brought it up at my most recent appointment, her question was, “How would you feel about methotrexate?” with a cautious hesitance that I interpreted as sensitivity to my rough past experiences with it. I did not jump onboard, but when I found myself in Atlanta the next weekend surrounded by other young adults who are empowering and hilarious and strong, I typed out a message to my rheumatologist from my hotel room, expressing a newfound willingness to try methotrexate again during a fleeting moment of bravery. I am tired of my joints hurting and of other random systemic symptoms. I like to think that I am stronger and more capable of managing side effects than I was as a young teenager, but this is perhaps wishful thinking.
The List of Humanizing Things included quite the variety of activities. An excerpt is below. While this list was a spur-of-the-moment decision, I would encourage you to try it if you ever find yourself in situations in which you do not feel like a human being.
- Watching Keeping Up with the Kardashians while covered in blankets and writing college papers
- Wandering around Target in the least methodical way possible with my friends on rainy afternoons
- Laying on the floor with my dogs and telling them about the other dogs I have recently met
- Driving with loud music and my windows rolled down
- Babysitting, and hanging out with kids in general
- Going to the mall when with my sister, Hannah, especially when I should definitely be doing homework
- Friendly conversations about makeup application with strangers in grocery stores
- Going on excessively long runs in Audubon Park in the early evening hours
- Spontaneous late night trips to the movies with friends on weekdays
- Cooking overly complex vegan recipes and making an enormous mess in my kitchen
Saturday, my first post-MTX day in several years, was full of caring friends. At this point, I probably should not be surprised by how kind and selfless people are, but every single day I find myself stunned by unimaginable generosity. My first conversation of the day was with a friend who gently reminded me that resting is not a sin, and I genuinely do not know how I would have made it through the day without that. I held up better than I thought I would, considering that I definitely felt like I had the flu and was achy and feverish, but the day involved a lot of naps. I sat on a bench to call my mom and text a friend, and all of the sudden I woke up coughing, with inflamed lungs (apparently laying under a tree is not ideal if you have severe seasonal allergies, but I blame this on methotrexate-induced brain fog) and realized that I had slept through the start of lunch. Then I was sleeping in my room. Then I convinced myself to go to the beach – after all, if one is going to feel the inevitable side effects of powerful drugs, one might as well do so staring into the ocean, being reminded of a world that is much bigger than a small vial. I started out studying, and then found myself texting a friend (who also has autoimmune arthritis and takes methotrexate) with a great deal of urgency to ask if it was normal that I felt like I needed to lay down immediately, and while he was still typing his response I fell asleep. Then I was blinking in a half-awake state trying to figure out why everything seemed so intensely blue. I thought I had slept for ten minutes but it had been hours, and my body felt like it had been hit by a bus.
|The prettiest, most peaceful way to start an MTX hangover day.|
I did not realize that I had burned my face until my friends expressed concern. I initially attributed my skin feeling hot to feeling like I had a fever, especially considering that we were entering the time of day in which my body temperature likes to pop up for no reason whatsoever. When I finally looked in the mirror, I realized that I had made quite the mistake by falling asleep in the sun. The real saviors of the day were three elementary schoolers who ate dinner with me and entertained me with their antics, conjuring up amusing questions about “being a grown-up” and about seagulls, all of which I was completely unequipped to answer. As I found myself sweeping crumbs off of the table and promising that I would match my ice cream toppings with theirs later that evening, I realized how indescribably grateful I was for each of them. It would have been challenging to eat dinner with adults that night, and as I watched their three faces explode with laughter again and again, all I could think was, This day is so worth it.
When it was time for me to try to sleep through the symptoms for the night, I found myself a bit unable to pull it together. I called a dear friend, who let me get roughly two sentences into the methotrexate sunburn story before adamantly interjecting with, “I am not letting you feel bad about this.” A conversation that I had expected to be weepy turned into one that was only a bit teary and involved quite a lot of laughter and, thankfully, some practical sunburn care and cover-up strategies.
|A tip for placing a pre-filled syringe with thousands of
dollars worth of Humira into a communal refrigerator:
borderline aggressive sticky notes.
The day after I returned from the beach, I weaved my way through the hospital for an appointment in which the attending and chief resident verbally went through my entire case, test results, and recommendations/treatment plan in my patient room. They faced a screen, talking only to each other with their backs turned towards me, never acknowledging my presence. Once their conversation was over, the chief resident turned towards me, introduced himself, and proceeded to repeat this information in a condescending clinical tone, as if I had not heard their entire conversation from approximately one foot away.
I left the appointment wondering if I was real. I pinched my cheek in the hallway of the hospital to make sure I was there. I had not been treated like a real person with ears and emotions and questions and a life. I felt completely dehumanized. I called my mom to tell her how rude they had been and to rant about how screwed up the entire medical system is, as one must do every now and then. She sympathized and reaffirmed my human dignity. Despite her unquestioning support, I have spent much of yesterday and today having to repeatedly remind myself that I am a real person who is here and is present and is deserving of the basic consideration of attendings and interns and everyone in between. I found myself pulling out The List of Humanizing Things yet again, except this time in the context of dehumanizing appointments rather than immunosuppressive drugs. The most appealing option was blasting music and riding with my windows down – this is almost always the most appealing option in my book.
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