Embodiment: Looking Back at My Experiences in London
For most of us with RA, our bodies are a quagmire. They are the primary producers of the pain we feel; they are the record of our experience with RA (joint damage, for instance); and they are the primary manner through which we communicate with the outside world.
And yet we are constantly (and persistently) told that we should love our bodies. Whenever I hear someone say this, I always ask myself: "How am I supposed to love my body when it actively causes me pain every day?"
Embodiment in disability studies
Recently, I was pouring over Keywords for Disability Studies, a resource book published by New York University, and couldn't help but think of how many words in this book exactly related to my experience with RA. Excited with glee at finding a resource that could finally help me explain my troubles with RA, I centered on one word: embodiment.
In disability studies, embodiment refers to:
A way of thinking about bodily experience that is not engaged solely with recovering the historical mistreatment of disabled people. Rather, it includes the pleasures, pain, suffering, sensorial, and sensual engagements with the world, vulnerabilities, capabilities, and constraints as they arise within specific times and places.1
Embodiment as a lived experience
Essentially, embodiment focuses less on the treatment of a disability and more on the lived experience of a disability. In thinking, synthesizing this idea with my own personal experience with RA, I begin to realize how much of my life has changed because of this disease and that my experience of the surrounding world is fundamentally different.
My experiences studying abroad in London one year ago, for instance, would not have been the same if I hadn't been diagnosed with RA, as this disease shaped what I could see in England, where I could go, and what I could do.
Changes in embodiment due to rheumatoid arthritis
Part of me is disheartened to think about how different my embodiment is with RA. There are many moments now when I wish I could have a normal life. Look back, and it is June 2018. I am sitting on a train ride to London, England; I have been in the country for only a few days, conducting research for my bachelor's honors thesis. I look around at the mass of people sitting around me as the train quietly hums through the quaint English countryside. Life, for the first time in so many years, felt good. It felt as if I were free, as if I could accomplish anything I wanted.
Realizing that something had changed in my body
I carried that mindset with me throughout the rest of my time in England until one morning, I wake up and swing my legs around to get out of bed. As soon as I place my feet on the floor and try to stand, I crumple back down into my bed. After three more tries, I finally am stable on my feet, hobbling along to the bathroom and quite alarmed at such a serious and new development.
Something had changed in my embodiment, something had changed physically in my body. My hands fell upon the sink, and I looked into the mirror; I knew something was wrong with me in this moment, as I looked down at my feet and saw cherry tomato red swellings on my toes. The only question I could think to myself was: "What is a body? What is this body?" I am still trying to answer that question to this day.
When was your last flare?