Vilmarie Sanchez-Rothkegel, PhD resides in southern New Hampshire. For the last several years she has delved into creative writing with an interest in personal narratives. Of particular interest to her is the meaning-making process of the language of multiple sclerosis. She enjoys photography, reading, and the cherished moments with family, friends, and her dog Kevin. Sanchez-Rothkegel’s essay, “House of Pain,” appears in the Fall 2024 Intima.
In my non-fiction essay "House of Pain" essay (Fall 2024 Intima), I discuss the problematic MS Hug metaphor, used for unpredictable and distressing chest spasms that can make breathing feel impossible. Hugs are a form of affection, except this one is not. I remember being caught off guard by the intensity of the pain. Words in Logan Shannon’s non-fiction essay “The Gold Standard” (Fall 2019 Intima) resonate profoundly: “It’s the pain that comes from nowhere, the surprise, that throws me.”
As a living-donor, Shannon will donate 60 percent of her liver to her husband to save his life. When she asks her medical team what the impending abdominal post-surgery pain will feel like, she is dissatisfied with the metaphor they offer: “You will feel like you've been hit by a truck.” All too familiar with this expression, I often imagine that a truck collision explains my crushing MS fatigue. But in wanting to prepare for future pain, Shannon’s predictive mind wishes to draw from experience, not from what can be imagined.
The post-surgery pain will become Shannon’s gold standard, her reference point for managing future pain. My own perception of MS pain is influenced by each prior experience, shifting over time. Every surprising occurrence reshapes my sense of what I think I can endure so that the MS hug feels more tolerable than the excruciating burning sensation in my arm that overwhelms rational thought.
During recovery, Shannon struggles with the severe pain that is compounded by the side effects of prescribed opioids. There is a moment when her surgeon observes her reach for a pail. He asks Shannon if she is in pain and if she feels sick. When Shannon nods yes, he also asks what she thinks might work to treat the pain, to which she answers: Ibuprofen. His observation followed by attentive listening helps come to life the metaphor of the warm compress of compassion in neurologist Martha Nance’s essay, “Why Compassion?” (Fall 2018 Intima). Nance dissects the term with com- signifies working together with patients in finding relief, while -passion represents care that transcends prescriptions.
How Nance describes her compassionate care for patients with incurable neurological diseases like Huntington’s and Parkinson’s holds deep meaning for me. I have always believed the ultimate gift my neurologist offers is listening to my MS medical challenges and valuing my creative interests. To the extent that metaphors offer a lens through which to examine pain experiences, they too provide a way to examine the role of compassion in how doctors work with patients to navigate the complex landscape of medical care.—Vilmarie Sanchez-Rothkegel
Vilmarie Sanchez-Rothkegel, PhD resides in southern New Hampshire. For the last several years she has delved into creative writing with an interest in personal narratives. Of particular interest to her is the meaning-making process of the language of multiple sclerosis. She enjoys photography, reading, and the cherished moments with family, friends, and her dog Kevin.