Yesterday was Remicade day. Remicade day comes once per month. Every four weeks I sit in a recliner in the hospital’s chemotherapy suite while the fluorescent lights overhead shine through a $10K bag of anti-TNF that flows down through plastic tubing and into the catheter that the nurse has inserted into one of my veins. I always make sure to remind whatever nurse is attending to not forget the lidocaine–feeling the pull and tug of the procedure is bad enough; I don’t need to feel the pinch and burn of it, too.
Despite the pre-meds I receive (650 of Tylenol and 50 of Benadryl), I haven’t slept during the infusion lately. My head bobs a-plenty and my eyes roll a bit as the antihistamine takes effect, but I’m too busy watching. Things have changed in the suite in recent months. Gone are the familiar, friendly faces that used to greet me, the trusted hands that I could always count on. Yesterday was no different. The suite was quiet, but for the first time, the head nurse, a man that none of the others cared for (this much I gleaned in prior observations), is the one taking care of me.
He takes my vital signs just fine and has no trouble putting the tablets and capsules into a little plastic cup for me to swallow. But he gives up after his first unsuccessful try at inserting the IV and asks (more like implicitly orders) another nurse to do it. She succeeds on the first try. When the pharmacy finally delivers the Remicade, he attaches the bag to the IV pole, programs the pump and away it goes. I start reading my book, but soon my arm with the IV feels wet, and I look down to see that the tubing from the bag has been attached crookedly to the catheter in my arm. He did that. “Something is dripping here,” I said. And she comes over to fix it. I like her. He pretends to help, but the truth is that he just isn’t good at the mechanics of the job. Perhaps he’s been in admin too long and has fallen behind on practice. Isn’t that always what happens the further one goes up in any job?
I’m always in the suite for 3 hours, and during that time I’m quite self-sufficient. I know how to unplug the pump if I have to go to the bathroom. I will often write. Depending on how horrible I feel, I also sleep–especially when I’m wrapped up in a double layer of blankets straight from the blanket warmer. I’m not needy like a lot of the others that pass through, not as old. I don’t have cancer, although one woman who clearly did have it probably thought I did too when she said to me as she was leaving: “Get better soon…you’re too young to be in here.” And she’s right. I am too young to be in that suite, that chair.
I don’t have cancer. I have ankylosing spondylitis. It looks different in every person that has it. Some relatively unscathed, with only minor discomfort. Others are quite disabled. It took me so long to get diagnosed that I am not one of the lucky ones per se, although I am also not as bad off as some either. Nevertheless, when I was diagnosed 5 years ago, my life changed in ways I never anticipated, in ways that I still haven’t truly accepted.
As much as this blog is about sharing all things creative that I love and that I am moved by, it’s also a place where I can perhaps begin to set down not just thoughts on my own illness and what it means for me specifically to live with it, but…how is illness in portrayed or expressed in various art forms, what is the value of doing so, and by god taking all the institutions of medicine to task on how they treat. I’m currently working on my MA thesis, my own illness narrative, and simultaneously planning for PhD research which will encompass creative work and practical application supported by robust investigation. In this regard, I’ve just begun a fascinating work by Stella Bolaki at the University of Kent, Illness as Many Narratives: Arts, Medicine and Culture. The following bits from the introduction are rattling around in my mind:
“as scholars in literary studies and across disciplines have shown, illness stories often challenge chronological causality and unity”(6)
“Cheryl Mattingly coins the term ‘emergent narratives’ to describe those stories (in her case within the clinical encounter) that, though still dependent on existing cultural resources, are ‘embodied’ and ‘improvised’ rather than told. Emergent narratives are ‘clearly allied to performative views of narrative and action’ and are not characterised by coherence but rather ‘narrative drama’.”(6)
“When approached as a communicative act and as essential to the process of meaning-making, narrative is not tied to a single medium.”(7)
“The problem with conceptualising the field in an ‘instrumental way’ is that we prevent it from gaining sufficient distance from medicine to take a radically critical view.”(8)
What’s being argued for is “a shift from the practitioner pedagogy and training (or an ‘additive view) towards a more ‘integrated’ view whereby the nature, goals and knowledge base of clinical medicine might be ‘challenged and reshaped’ rather than simply ‘softened’ by its encounter with the humanities.”(8)