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Squint: My Journey with Leprosy

José P. Ramirez
Foreword by James Carville
Copyright Date: 2009
Pages: 240
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  • Book Info
    Book Description:

    Lying in a hospital bed, José P. Ramirez, Jr. (b. 1948) almost lost everything because of a misunderstood disease. When the health department doctor gave him the Handbook for Persons with Leprosy, Ramirez learned his fate. Such a diagnosis in 1968 meant exile and hospitalization in the only leprosarium in the continental United States--Carville, Louisiana, 750 miles from his home in Laredo, Texas.

    In Squint: My Journey with Leprosy, Ramirez recalls being taken from his family in a hearse and thrown into a world filled with fear. He and his loved ones struggled against the stigma associated with the term "leper" and against beliefs that the disease was a punishment from God, that his illness was highly communicable, and that persons with Hansen's disease had to be banished from their communities.

    His disease not only meant separation from the girlfriend who would later become his wife, but also a derailment of all life's goals. In his struggle Ramirez overcame barriers both real and imagined and eventually became an international advocate on behalf of persons with disabilities. In Squint, titled for the sliver of a window through which persons with leprosy in medieval times were allowed to view Mass but not participate, Ramirez tells a story of love and perseverance over incredible odds.

    José P. Ramirez, Jr., is a social worker in Houston, Texas. He has written articles about Hansen's disease for the Houston Chronicle, the Star Magazine, the National Association of Social Workers Newsletter, and other publications.

    eISBN: 978-1-60473-339-6
    Subjects: History

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
    (pp. ix-x)
    James Carville

    The story you’re about to read from José Ramirez places him firmly in the Carville Hall of Fame. The combination of José’s innate sense of optimism and goodness and his compelling narrative make him a model, not just for people with Hansen’s disease, but for anyone who is facing challenges in his or her own life. This book represents a significant contribution to the remarkable literary tradition that is an integral part of that magnificent story which, as they say, is “known to the rest of the world simply as Carville.”

    Carville has seen truly magnificent scientific and human achievements....

    (pp. xi-xiv)
  5. CHAPTER 1 No One Told You?
    (pp. 1-26)

    “You mean to tell me that no one has told you that you have leprosy?” With this awkward question, Dr. Dickerson from the Texas Department of Health informed me of my diagnosis. His wide-open eyes made his face look circular and forced me to focus on the center of his face, at a spot right above his lips. He slowly looked to his left and then to his right, staring in amazement at the people encircling my bed—parents, siblings, Sisters of Mercy, nurses, and some people I had never seen before. But no local doctor was present.

    Realizing that...

  6. CHAPTER 2 The Journey
    (pp. 27-37)

    One of the first things that I found out about this strange and biblical disease was that what is described in the Old Testament—“T’sarath”—meant that people were “stricken by God.” Translations of the Bible from Hebrew to Greek have caused much confusion throughout the ages and continue to fuel the myths about leprosy. This fear has transcended all religious faiths, possibly because it is the disease mentioned most often in the Bible.¹ The fear and resulting ostracism cross all cultures worldwide.

    Leprosy is mistakenly referred to as the “oldest of diseases.” This is possibly due to its association...

  7. CHAPTER 3 Treatment at Last
    (pp. 38-47)

    Before daylight the next day, Big John came by to empty the bedpan and check my vital signs. He again introduced himself, perhaps sensing that I had been disoriented upon my arrival in the middle of the night.

    The light, illuminating his white shirt from the back, made him look saintly. His soothing voice and reassurance that I would be “okay” enhanced that perception in my mind. Unfortunately, because he worked the graveyard shift, 11 p.m.–7 a.m., I wasn’t able to speak to him during the daylight hours, nor did I get to enjoy his company outside of the...

  8. CHAPTER 4 Learning about Carville
    (pp. 48-54)

    I recall being in a sugar beet field outside Helena, Montana, in the summer of 1964. Some of the family had traveled north—al norte—to do migrant work. The moment in 1964 was so crisp in my mind because of my recollection of silence, silence so great that the crawl of a caterpillar on a dry leaf would have gotten my attention. I remember looking at the sun’s rays as it rapidly sank beyond the mountains that surround Helena. I remember that the wind, usually blowing lightly and keeping it cool during the late afternoon, was now nonexistent. I...

  9. CHAPTER 5 Life at Carville
    (pp. 55-68)

    The hospital grounds at Carville were divided into two worlds. One was to the left of the main entrance past the administration building, “the Big House,” and staff dining room. This area, which had over twenty buildings, mostly cottages for public health service staff and visitors, was off limits to us residents of the “other” world. I was able to meet only a few of the children who lived on the station, but I always wondered what their thoughts were about growing up in Louisiana where segregation by race was a common practice, and then residing on the hospital grounds...

  10. CHAPTER 6 Four Months and Counting
    (pp. 69-87)

    Carville had a great diversity of cultures from all over the world. However, the residents had much in common, including awareness of the fear that society had of leprosy, the label imposed on us which stigmatized us as “worthless” and resulted in many having a strong urge to keep our diagnosis a secret.

    The fear of leprosy goes back at least to the time of Ramses II (1250 bc), who allegedly ordered that eighty thousand persons suspected of having leprosy be arrested and “resettled” at the edge of the Sahara Desert.¹ As recently as 1978, many state health departments were...

  11. CHAPTER 7 First Visit to Laredo
    (pp. 88-99)

    Upon my return to Carville, I found several appointment slips under my door. This was not out of the ordinary, but what appeared odd was the notice to see Dr. Hull at 8:00 a.m. the next day. I sensed something wrong, as I had seen him for a scheduled appointment four days earlier, and he usually made rounds during the mornings. My hope was that I was being granted a pass to visit my family in Laredo. I asked Juan S., my neighbor in room #102, to please wake me up early the next day.

    Promptly at 8:00 a.m. on...

  12. CHAPTER 8 Manhood and Beyond
    (pp. 100-127)

    The year 1969 started rather gloomily for me. I was away from family during a time when I felt manhood was just around the corner, as I was turning twenty-one in February. The gray time of the New Year turned very bright during the first week in January when Dr. Hull and Mr. Bahlinger surprised me with a two-week medical pass to visit Laredo. Mr. Bahlinger had even prearranged with the Mexican Club to pay for a round-trip bus ticket. He had also called my parents, which gave me little time to contemplate making a decision about the trip. So,...

  13. CHAPTER 9 The Magic of Dreaming
    (pp. 128-137)

    During my early adolescent years, I would respond to stress by limiting my verbal communication and internalizing the stress, which resulted in dreams that had me falling from an airplane. I would always wake up before I hit the ground. The instant I awoke, I felt the sensation of desperation and terror mixed with cold sweat, pulsating heartbeat, and dark silence.

    The stress I felt in January of 1970 came from the realization that my return to Carville meant more time away from family, girlfriend and familiar surroundings. Each return trip to Carville resurrected my self-doubts about being a worthy...

  14. CHAPTER 10 The Power of Motherly Love
    (pp. 138-155)

    “What short intervals we’ve spent together,” wrote Magdalena after the holidays. “Let’s highlight the happy moments over the sad ones.” The “sad ones” related to still another confrontation with her mother about our relationship. Her mom had complained about being ill all through the holidays, but her one visit to a physician ruled out any type of illness that would require medication. Magdalena’s aunt from Monterrey, Tía Maria, described her sister’s illness to Magdalena as “una enfermedad de ser madre, con dolor en el corazón,” an illness related to being a mother, a pain of the heart. Other aunts would...

  15. CHAPTER 11 Life after Death
    (pp. 156-163)

    As we exited the church, hand in hand, an army of family members was waiting to greet us. Even those who were only attending Mass and not part of the wedding party greeted us warmly, sensing something special and saying, “felicidades,” congratulations. Our parents and siblings were crying. It was difficult to see the crowd because our eyes were swelled with tears too. Many individuals whom we did not recognize came to us and said, “Amazing, we thought you were dead, qué milagro,” what a miracle.

    Yes, it was a miracle for us. After so many obstacles, we had finally...

  16. CHAPTER 12 The Road to Advocacy
    (pp. 164-177)

    In 1981, an effort was initiated to decrease the population at Carville, due, in large part, to the success of multiple drug therapy (MDT). Even though many of the younger residents had previously been strongly encouraged to return to their respective communities, few were convinced that treatment without fear on the part of the medical profession would be available. The federal government took some important steps in order to lessen those fears by creating ten outpatient clinics. In the beginning the clinics were fully staffed, but lacked the presence of a social worker to address the psychosocial issues associated with...

  17. CHAPTER 13 Change Is Good
    (pp. 178-192)

    The success of the opening of the exhibit produced an exhilaration that was in contrast to our sadness at the death of two world-known advocates for people with leprosy. The tragic deaths of Princess Diana and Mother Teresa, within months of each other, generated much publicity on the living conditions of many individuals with leprosy, along with the disabilities that can occur after years of misdiagnosis and/or inappropriate treatment. Regrettably, their deaths also resurrected the use of the “l” word and its alleged association with sin and unclean souls. Many of us in IDEA mailed dozens of letters to the...

  18. CHAPTER 14 Living with a Clean Soul
    (pp. 193-206)

    Within one month after my reunion with Mom, I felt a new level of energy as I embarked on another journey of discovery. Many of the emotions I felt while at Carville and the physical pain I endured had become somewhat easier to describe to others. My view of life was definitely not colored gray, as when I was initially diagnosed with HD.

    By recalling many intimate meetings with the leprosy bacillus, I was able to develop a presentation titled “The Power of Ignorance.” This topic was a tool I could use to describe the manner in which injustices, stigma,...

  19. CHAPTER 15 Commonly Asked Questions
    (pp. 207-214)

    As I have expanded my horizons by traveling, I have met many individuals who have questions about Hansen’s disease. I now feel comfortable enough with the history and treatment of the disease that I can provide ready responses. However, the responses do not always answer the questions. For example, whoever comes up with the correct answer to the question “How is HD transmitted?” will probably receive the Nobel Prize for Medicine. There are theories, but no concrete evidence on how HD is transmitted. Poor hygiene, as with other diseases, may be a factor in transmittal.

    My response to inquiries about...

  20. NOTES
    (pp. 215-218)
    (pp. 219-220)