Carville: Remembering Leprosy in America

2. “An Exile in My Own Country”: The Unspeakable Trauma of Entering Carville

{ 25 } “An Exile in My Own Country” THE UNSPEAKABLE TRAUMA OF ENTERING CARVILLE At ten o’clock on that Sunday morning, March 1, 1931, I became an exile in my own country. —Stanley Stein Alone No Longer A diagnosis of leprosy was inevitably traumatic. Such a diagnosis was usually totally unexpected as well. Even when the diagnosis was not a complete surprise (because of the knowledge that other family members had the disease), it was still devastating. In such cases, the patients had already witnessed the trauma, knew something of what awaited them, and may have lived in dread of their own diagnosis. In addition, the diagnosis { 2 } { 26 } “An Exile in My Own Country” was usually followed either by an attempt to conceal the nature of the disease if possible or the necessity for virtual “exile” to Carville. New patients at Carville not only took on sudden stigmatization but also were likely to lose much of their former identities, including their names. Patients being admitted to Carville were encouraged to hide their true identities. Often not even the staff knew their real names. No identification papers were necessary to enter, and even the hometown was kept secret so the shame and ostracism would not extend to their families. As Gussow and Tracy point out, “Diagnosis of leprosy with or without concomitant hospitalization , signals a sudden, radical, undesired, and unanticipated transformation of the patient’s life program ” (1968: 319). For all Hansen’s disease patients, there was an initial, devastating trauma—being told that they had leprosy and would be quarantined at Carville. In order to have some control over their own existence, they first had to come to terms with what it meant to suffer from Hansen’s disease in the twentieth century. Some had to overcome their own self-aversion as “lepers” and to arrive at some understanding of how this most meaningladen of diseases differed from other diseases because of the historical stigma of leprosy rooted in the Bible. For many former Carville patients, their memories were (and are) what Roberta Culbertson calls “embodied memory”—memory that is bodily, a sense memory (1995: 174–75).1 In leprosy or any trauma that manifests itself daily in scars or bodily signs, the inability to conceal the bodily memory is likely to complicate traditional survival strategies and add social traumas to the medical trauma. Weaving the traumatic threads into a cohesive narrative is a way of dealing with the trauma, particularly in a disease where the social construction or common (albeit erroneous) understanding is one of the body literally falling apart. For those who left Carville for a time, their very survival on the outside depended upon their not giving voice to those memories. In assuming a new identity, they had to subvert the need to speak, to give narrative form to the trauma of being diagnosed with leprosy, torn from family and friends, sent to Carville, and advised to change their names—to protect their families . In order to “pass” as “healthy” or normal on the outside they had to hide their illness from employers, friends, and sometimes even their own children. They not only had to hide their diagnosis and their time spent at Carville but often had to silence memories of the initial trauma as well as lost years of their lives. This chapter will focus on how former patients at Carville remember the trauma of being diagnosed with leprosy, how they chose to voice those memories in personal narrative, and how they were able to reconstruct “An Exile in My Own Country” { 27 } their own identities through knowledge, understanding, and the assertion of personal agency. Having survived an unspeakable trauma, they were empowered to give voice to their memories. The personal narratives and life writings of former Carville patients reflect this trauma and devastation. Stanley Stein describes his admittance to Carville in his 1963 autobiography, Alone No Longer: “I had arrived at U.S. Marine Hospital No. 66, Carville, Louisiana, then as now, the only institution in the continental United States devoted exclusively to the treatment of leprosy. At ten o’clock on that Sunday morning, March 1, 1931, I became an exile in my own country” (4). Stein came to Carville from Boerne, Texas, where he was a pharmacist . His family was German and Jewish, and they knew of no one else in the family who had the disease. He...