HOUSE OF PAIN | Vilmarie Sanchez-Rothkegel
Some things lend themselves easily to language, like a breathtaking sunrise. The sky, streaked with shades of pink on a partially cloudy morning, enhances the dramatic rise of the sun above the ocean. I marvel at the natural palette, appreciating nature’s bounty of colors marking another dawn, as well as the bounty of expressions I feel to describe such wonder.
On the other hand, multiple sclerosis pain challenges my attempts to express it. When my arm burns and I cannot lift it or extend it, the pain overwhelms my desire to find the language. At best, I lean slightly forward and rock myself back and forth. But being unable to position my arm to alleviate the pain, I pray for someone to chop it off. I feel feral. I convince myself I suffer from a memory lapse of having received hundreds of injections of a burning poison in my arm. I want to show you the constant sensation that is sensitive to any touch. But I cannot. Pain is invisible. It wins again as the cruel presence within my body and on my emotional state.
Trying to express multiple sclerosis pain is akin to looking down a long corridor intertwined with numerous other corridors. The how, if, where and when my pain will happen remains largely absent. I cautiously open some passageway doors where everyday words might take on different meanings. Metaphors offer intriguing ways to describe my illness, but I hesitate to use them. Some strike me as aggressive and others as dismissive of my pain symptoms. Metaphors belong to creative minds. Or perhaps by avoiding metaphor, I attempt to mute the strong emotions accompanying pain rather than spending time here on the page unraveling the ‘knot’ of resistance that arises when thinking about pain (Schneider, 36).
In the early stages of my journey with MS, I experienced odd sensations, yet I remained undiagnosed for several years. Not so when I fractured my ankle due to a nasty slip on the ice—the cause of the pain was clear. The orthopedist, Dr. Fritz, named it — a bimalleolar fracture, three areas of broken bone on the ends of the fibula and tibia. X-ray images vividly displayed the wire, plate and five screws he placed to stabilize the bones and aid in the healing process. Every time I shifted my leg, encased in a below-the-knee cast, I mentally braced myself for the inevitable pain I would feel when moving it from its extended and elevated position to bear weight on my one good leg. A furious force inflamed an already traumatized area in my grotesquely swollen foot.
“People don’t realize how vascular bones are,” Dr. Fritz, shared with me at my post-op visit.
The fact that blood flowed inside hard bones surprised and amazed me. Bone marrow, the soft spongy center, functions as an incredible factory of cell production for nourishment, oxygen and antibodies to the body's tissues. The broken bones activated my pain system through axons, or cables, carrying the signal to my brain as to where the location of my injury was identified. My brain then directed the interconnected circulatory and immune systems for the critical work of blood clotting, removing damaged cells and repairing tissue. Pain served as a signal from my brain—to not place pressure on a body part needing to heal. The house of pain is also the house of healing.
* * *
Several months after my ankle healed, I scheduled surgery for the removal of the hardware. I updated Dr. Fritz about recurrent falls that happened without an obvious reason, from walking in my obstacle-free kitchen to missing the first step when descending the stairs and landing at the bottom in a heap of bruised body limbs.
“I am in the process of being evaluated for suspected multiple sclerosis,” I share with him. My online searches had turned up MS as an autoimmune disease, a term that confused me. I understood the immune system, one that identifies harmful intruders like bacteria and viruses to keep us healthy but felt baffled by one that may mistakenly direct an “attack” on its own healthy tissue.
"I'm sorry to hear that." Dr. Fritz nodded his head slowly in understanding, with a kindness in his eyes. After my slip on the ice, he had wondered if my fall was an isolated event, but the bloodwork and osteoporosis tests he ordered came back with normal results.
Dealing with chronic pain that is not attributed to a physical injury presents a significant challenge when determining its origins. Even after receiving a diagnosis of MS, there are times when well-meaning friends search for other explanations. If I am unable to bear weight on my foot due to a sudden sharp pain, they inquire, "Are you sure you didn't trip or fall?" If I experience painful muscle stiffness in my shoulder, they question whether my dog Kevin pulls too hard on his leash. I try to convey that MS is an infuriating disease in which invisible pain arises from the damaged brain tissue. I emphasize how the pain will vanish within hours or days, only to resurface elsewhere in my body without warning. It seems impossible to speak about the pain that is concealed from view.
The amount of time consumed to consider all other possibilities for my symptoms, while necessary, drains me physically and emotionally. It involves eliminating all other reasons, much like the time I experienced a painful band-like muscle spasm around my chest and back. I remember how I woke up feeling surprisingly rested and ready to meet some friends for coffee. But then, I was thrown off course by a sharp pain every time I took a breath that squeezed out the possibility to enjoy my day. When I visited the ER, the doctor ran various tests over several hours to rule out a heart attack or blood clot. After a follow-up appointment with my primary care physician who removed the possibility of gastrointestinal issues, the spasm was determined by the neurologist as an MS “hug.” While I remain on alert for triggers, it turns out the painful spasms return just as easily with extreme weather changes as they do during a stretch of perfectly dry, warm and bright sunny days. Later after an episode, I think about how I rarely think about breathing—how our brains instruct our bodies to breathe as an involuntary function.
I am inclined to accept the truth of the statement made by the English diarist, W.N.P. Barbellion, who died at 30 years of age from MS: Life is pain. But if one’s life is full of pain, why is it so difficult to find, capture, preserve and retrieve the language to express it? The disbelief surrounding the sensations I endure makes me question whether I imagine these moments. The assurance hides in a corner and remains concealed within thoughts that my mind invented the period of exhausting pain. After the pain subsides, I struggle with making sense of the distressing episode that lasted several hours or days. The conspiring whispers of disbelief and pain dominate all the space. They challenge me to emerge from hiding. If I allow myself to loosen the grip on feeling anxious about when the pain will return, I am stunned by how fast and furious a new wave of pain consumes me. This merciless cycle leaves me unsure of how to navigate my days.
And yet, it is necessary I describe the sensations to the neurologist who must interpret my symptoms along with objective evaluations, such as MRI scans of my brain and spinal cord. The lesions in my brain correspond to the damaged protective covering, the myelin, which insulates the nerve fibers. Without the insulation, the pain pathways become damaged, so that communication between my brain and other body parts is disrupted. The interruptions result in abnormal sensations. The house of pain is also the house of dysfunction.
* * *
When Barbellion shares his MS symptoms in his journal entries, he describes his hand, arm and shoulder as permanently cold. Similarly, I am struck by the McGill pain questionnaire developed in 1971 by the psychologist Ronald Melzack, whose pain research includes studying how patients described their pain. The words "cool, cold and freezing" are all too familiar to me. In time, I am encouraged to try Sonya Huber’s writing exercise on metaphors about pain, which starts with “It sort of feels like...”
…having frozen popsicles for arms. Attached to them are icy hands and fingers with fingerless gloves that feel like plastic popsicle bags, impeding the use of my fingers.
My persistent interest in language expressions also leads me to Biro’s study of metaphors for pain. He presents the idea that because pain is not connected to an object in our shared world, it resists language. My pain is not an object others can observe, as they are able to do so with the sunrise or an x-ray of a fractured ankle. His analysis in the Language of Pain incorporates Virginia Woolf’s ‘poverty of language’ for describing illness and Emily Dickinson’s ‘element of blank for pain’, yet he also moves my mind toward the idea that metaphors open the door to the possibility to express pain. We borrow from the shared world of objects to talk about what we do not understand, by using words of what we do understand. I have shared with my neurologist that pain in the back of my head feels like being stabbed with an icepick or that my fatigue feels like being run over by a truck. My imagination allows me to share my inward experience. Analogy invites me to dwell in this space to find the language where I can also embrace the emotions of isolation and loneliness that often accompany pain, approaching the experience with a gentle tenderness.¬ I am inspired to consider language that helps me describe my experiences, even as I acknowledge that some parts of my pain may forever remain ineffable.
Just like how no two snowflakes are alike, referring to MS as a "snowflake” disease is a metaphor that I find fitting as it illustrates the variation of MS from one patient to another. However, I find the expression of the MS hug problematic. According to the etymology on-line dictionary, the word metaphor has its roots in the Latin and Greek word "metaphora," which means "a transfer" where a word can convey different meaning, even in a strange sense. Applying the word hug to describe painful muscle spasms indeed presents a peculiar usage of the word. It hides a significant part of my experience. While I appreciate how the metaphor helps explain the pain that wraps itself around my ribcage like a hug, it cannot communicate my agony when I take shallow breaths to minimize the pain that consumes my every thought and action. The agony remains concealed by a term that conveys care, as in an embrace. And in returning to the snowflake metaphor, there is variation in how the MS hug sensation, severity and duration varies from patient to patient.
I realize that no single metaphor can fully encompass the cause, variation and pain sensations of MS. Even with such limitations, I lean in and then lean back to consider metaphors more thoughtfully. Metaphorical language appeals to our senses and helps make clearer parts of a complex and oftentimes invisible disease. These insights gradually reveal themselves to me in a slow burn. I remind myself that originality is not a requirement. Just as some medical language may help me to better comprehend MS, existing metaphors too can expand my understanding, provide a sense of calm and bring out my voice. The tight knot loosens. As long as there is language in all its various forms, I have a medium for comprehending and sharing my experience. The house of pain is also the house of creative expression.
References
Barbellion, W. N. P. The Journal of a Disappointed Man: An Intimate Edwardian Diary. E-book, Victorian London Ebooks, 1919.
Biro, David. The Language of Pain: Finding Words, Compassion, and Relief. New York, W. W. Norton & Company, 2010.
Bhattacharjee, Yudhijit. A World of Pain: Learning More about how Pain is Transmitted. National Geographic. January 2020, pp. 46-69.
Huber, Sonya. Writing about Pain. YouTube, uploaded by U.S. Pain Foundation Inc., December 13, 2019, Writing about Pain: A Workshop with Book Author Sonya Huber (youtube.com)
Melzack, Ronald. “The McGill Pain Questionnaire: From Description to Measurement.” Anesthesiology, vol. 103, no. 1, July 2005, pp. 199-201. https://doi.org/10.1097/00000542-200507000-00028.
Schneider, Pat. Writing Alone and with Others. E-Book edition. New York, Oxford University Press, 2003.
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.