Though our political and social attitudes could not have been more different, my paternal grandfather and I shared an intense emotional connection. During the last years of his life we talked on the phone almost every evening and I visited him several times a year. Most often, our conversations focused on the minutiae of daily life, but not infrequently my grandfather lamented the physical distance between us and wished aloud that my father, my sister, and I lived closer to him. At those moments, he shared memories of his childhood, which was populated by extended family living within blocks of one another in downtown St. Louis. During one of our visits, we talked as he leafed through a box of family snapshots. I looked casually at the pictures he passed over to me; eventually, I commented that I had always been puzzled by the fact that I am heavy while everyone else in my father’s family is small. His response was to produce several pictures of his grandmother (Mary Blackburn). Every one of those pictures shows a rotund woman wedged into a corseted dress, her ribs bound tight while her breasts stand at attention above and her belly expands below. In one of those pictures she sits on a bench next to her husband; he is dressed casually (for the time) and appears relaxed and comfortable next to his rigid, restrictively clad wife.
At the end of that visit, my grandfather handed me the photo so that I might keep it as a reminder that my body has a “history” in our family. I have since that time kept the picture of my great great grandparents framed and displayed where I see it often. Lately, I have found myself thinking more and more about the woman I see when I look at Mary—the one whose body seems to resist both the form and fabric of her dress, the one who in my imagination struggled always against clothing designed to cinch her middle and reshape her recalcitrant body. Though I long ago gave up uncomfortable clothing whose tightness promised to “slim” my belly and hips or create the illusion of a small waist, the recent progression of my MS symptoms has reminded me of the discomfort (and even pain) that restrictive clothing imposes on women’s bodies. By the time Mary worked herself into that dress, the style of its bodice was all that was left of a long history of women’s attempts reshape their bodies using corsets to reduce their waist size and create the desired “hourglass figure.” As a matter of fact, some women went so far as to practice “tight-lacing,” which involved pulling the corset so tight that it actually modified the body, displacing organs and in some cases making the torso so weak that a woman could not stand erect without the support of her corset.
I have for the past couple of months felt a kinship with Mary Blackburn and her corseted predecessors. Slowly but perceptively, my ribs have begun to tighten the way corsets once tightened their torsos. My breathing has become more and more labored, I work to take in enough breath to fill my lungs, and my diaphragm resists my efforts to will it into motion. Like the women whose ability to stand came to depend on their corsets, my midsection has weakened and I am no longer able to stand erect for more than a minute or so. The tightness in my ribs is related to a not uncommon symptom of MS that its sufferers often call “the Hug” or “girdle banding.” This symptom is thought to occur when lesions in the thoracic portion of the spine cause the intercostal muscles between the ribs to spasm. As is true with most MS symptoms, these spasms manifest themselves differently depending on the person experiencing them. In my case, I feel a kind of “banding” in my back and intermittent pain under my shoulder blades, but the real pain is concentrated in my rib cage. When the pain started, I tried to ignore it because I was certain that it was MS related and that it surely had to do with the general progression of symptoms I have experienced since my diagnosis. As the pain intensified, though, I began to have more and more trouble breathing. I could take shallow breaths, but deep breaths were impossible most of the time. Eventually, I begged my neurologist for some kind of relief.
Always careful to avoid the pitfall of attributing all of a patient’s symptoms to MS, thus leaving other illnesses undiagnosed, my neurologist admitted me to the hospital and did a battery of tests to rule out other causes for the problems I was experiencing. Not surprisingly, the tests showed that aside from having a progressive form of MS, I am quite healthy. According to my neurologist, the spasms in my rib cage, like so many of my MS symptoms, can be attributed to spinal cord lesions that have “aged.” My lay person’s understanding of the situation is that in the earlier stages of the disease the body develops “work arounds” to compensate for nerve damage caused by MS lesions. As the disease progresses, the body is less and less able to compensate for the lesions’ damage and there is a steady progression of symptoms.
Over the years since my diagnosis I have come to a real understanding of the old adage “Hindsight is 20/20.” As is common with people who are diagnosed after they have progressed from Relapsing Remitting MS to Secondary Progressive MS, I can often look into my past and identify a history of particular symptoms worsening and then dissipating and sometimes even disappearing entirely. The spasms and tightness in my rib cage that I am presently experiencing have been intermittent visitors in my life for decades. I have no idea why, but I can actually pinpoint the first time I experienced them; I was an undergraduate at Salisbury University on the Eastern Shore of Maryland. At the time, a wildfowl art museum was housed in one of SU’s campus buildings. Though I had no particular interest in wildfowl art, one day I decided that, like seeing The World’s Largest Ball of Twine, visiting that museum was one of those quirky experiences I would be foolish to pass up. As I walked through the exhibit, I became aware of a tightness that seemed to move in waves across my rib cage. After chastising myself for giving a few moments’ worry to the idea that I might be having a heart attack, I chalked the feeling up to stress over impending exams and took it as a clear sign that I had seen enough of the museum and should return to my studies. Over the years, that tightness returned from time to time, but as it had that day in the museum, it eventually subsided so I continued to attributed it to stress.
As I suspect was true for women who wore tightly laced corsets day after day, I am not able to identify the first time I experienced the breathlessness and weakening in my torso. I know that climbing stairs and other forms of physical exertion winded me long before they seemed to affect others around me, but that experience is as likely to be related to the body type that Mary and I share as it is to be caused by MS. Until recently, it never dawned on me that breathlessness and weakness might actually have a physiological explanation; as I am sure was true for women bound by their corsets and for Mary stitched into her dress, I have always embraced the idea that breathlessness and weakness were due to some fault in my character that kept me from exercising hard enough or moving more gracefully.
I can only imagine how Mary Blackburn felt in her dress or what women felt when they wore corsets, or more dramatically, modified their bodies through the practice of tight-lacing. The discomfort of corsets and the deformities created when a woman practiced tight lacing, though, seem to me not unlike the MS symptoms I am currently experiencing. The shortness of breath, the tightness and pain in my torso, the weakness in my midsection—these constrain me in much the same way that corsets constrained the women who wore them. In their cases, their marriageability (and thus their livelihoods) depended upon their ability to make their bodies look and behave in ways that were at the time considered desirable; their lack of strength, breathlessness, and weakness were all considered characteristics of upper class femininity. Though more than a century separates me from women who donned corsets in order to modify their bodies’ form and function, I have come to understand something about the sacrifices they felt forced to make. The constant constriction of my ribs, my difficulty breathing, and my increasing difficulty standing erect are constant distractions from the joys of daily life and dramatically decrease the number of functional hours I have each day.