A Portrait of Leprosy and Stigma

Hearse to the Hospital

On the morning of February 19, 1968, the pathologist at Mercy Hospital in Laredo, Texas Dr. Joaquin Cigarroa and Dr.
Ricardo Vela, attending physicians on my care, quietly walked into the office of the Director of Laboratory. They left after meeting with lab director Sister De Lilis, supervisor of my sister Raquel.

The sister showed Raquel the report from the Center for Disease Control (CDC) indicating that the patient José Ramirez, Jr. had been confirmed to have Hansen’s disease, more commonly known as leprosy. As my sister Raquel looked up from the report, she noticed Sister De Lilis crying, a look she had never seen as the sister was known for her composure in the most extreme of circumstances.

My sister, speechless, also started to cry and both embraced. Sister De Lilis gathered the other staff in the lab, shared with them my newly discovered diagnosis and asked the group to pray in unison for my recovery.After the solemn prayer, Sister De Lilis calmly told the group, “we must keep this a secret until the doctors and the Ramirez family are informed.”

Word about my diagnosis spread quickly. The Charge Nurse for the fifth floor where I was ordered that all patients and staff be transferred to other floors and issued a directive that anyone entering my room wear a cap, gown, gloves and mask. My family refused to accept this directive of shrouding. All of this activity was occurring during the morning “visiting hours” and thus my mother and girlfriend arrived at the hospital. Both were quietly ushered into a side room and informed of my diagnosis and of the requirement to send me to the national leprosarium in Carville, Louisiana.

My mother did not understand the medical ramifications but she did believe that it was a “punishment from God.” While taking a breath during her crying she confessed to all that this illness was her fault for all the sins she had committed in her life. She lived with this pain for 36 years until I shared with her that Pope John Paul II said, “All persons with leprosy are my brothers and sisters.” Her response was, “Now I can die with a clean soul.”

I was admitted to Mercy Hospital after one week of high fevers, severe nerve pain, and an increasing number of sores and nodules sprouting throughout my body. The short trip to the hospital was preceded by a lengthy journey of being examined by multiple doctors, experiencing tear producing pain and seen by persons practicing alternative medicine.

One of the individuals practicing alternative medicine was a “curandero” who, after seeing my sores, said, “You have an illness of the Bible” and asked us to leave. Not knowing the significance of his comments my parents did not relate the curandero’s dreary observation until the report from the CDC arrived.

On the afternoon of my diagnosis the Director of the Texas Health Department arrived in my room and handed me a pamphlet that read “Handbook for Patients with Leprosy.” That was my introduction to this grossly misunderstood disease. He added that the next day I would be transported to a “leper hospital” in Louisiana, starting the label I have dreaded since my diagnosis.

That evening my parents came into my room at separate times to ask for forgiveness for their sins, still believing that the disease was a punishment from God. They cried, and I cried along with them, not understanding that the sight of their son in a room insulated from the world caused them incredible pain. That night I was administered pain medication by injection and as I dozed off my eyes filled with tears for causing my parents so much grief, and cursed at God for the darkness he had brought to them, my 12 siblings, and girlfriend. This curse would not be taken back for decades.

The next morning I was awoken by my mother at approximately 4am to begin my 750 mile journey that eventually turned into seven years at the United States Public Health Service Hospital more commonly known as the “leper hospital.” A nurse followed my mom to give me another injection of morphine as my dad, sisters Yolanda, Raquel and Diana, and girlfriend Magdalena encircled my bed. A priest then came in to administer the last rites.

The trip to the national leprosarium lasted 18 hours and it was done in a hearse “because ambulances are for the living and hearses are for the dead.” For those present on that cold morning in 1968, the symbolism of the last rites and travel by hearse meant that I was a member of the “living dead.” The millions that came before and the millions that have followed since have experienced a level of stigma not known by any other disease.

An American Holocaust

The national leprosarium was opened in 1894 and was a self-contained community embraced by the Mississippi River that meanders around the 300 acre facility and a swamp area filled with snakes and alligators. The facility had its own water treatment plant and huge electric plant. The infrastructure had an infirmary and a surgical room, training and treatment branches, two chapels, school, library, social clubs, dormitories, homes for staff and nuns (Daughters of Charity who served as nurses), recreation area, post office, security guards, cemetery, and jail. The area was surrounded by a high cyclone fence with barbed wire and two watch towers and exiting was possible only with written permission and passing through a security gate. Patients who left without written permission were typically arrested and returned to the facility.

The hospital also was also considered the most advanced research and treatment center in the world. It had many unwritten rules such as not passing an imaginary line that separated staff from patients, including imaginary lines at the cafeteria and chapels. The separation caused me much personal grief and resulted in consequences when I violated these rules. Some of these consequences included being threatened with “jail time” and experiencing months of silence from both staff and patients.

However I was fortunate to have arrived at this one-of-a-kind facility in the United States when the introduction of experimental medication had just begun. These medications did not prevent the resurrection of the bacilli during 17 different times while institutionalized, but they did help me in preventing visible disabilities.

Many of the 400 patients at the hospital during my seven years at Carville had been there a lifetime. A large number changed their names in order to protect their families and most had been sent there in shackles and in trains reminiscent of the holocaust. Their families had abandoned them and divorce had quickly followed for many married patients. Also similar to the holocaust we were assigned identifying numbers, though not tattooed, My number was 2855.

Laws that allowed such mistreatment and violations of basic human rights were initiated at the state or local level. The federal government simply turned a blind eye to the abuse. Patient rights slowly surfaced and unwritten rules stopped being enforced. Being denied basic human rights, respect and dignity is the simplest way to become an advocate. However, being a witness to the practice of blatant and covert stigma of so many is the overpowering element needed to commence the journey to international advocacy. As a result the scars buried in my soul, witnessing my mother’s tears, and listening to the painful memories of my “brothers and sisters” at Carville gave me the boost to attack stigma, which I define as “an act of labeling, rejection or unexplained fear of a person.”

The national leprosarium stopped accepting new cases in 1999 and President Clinton signed an Executive Order to pay a lifetime stipend for those still hospitalized at the time. This order did not allow for any type of compensation for others that had been forced into institutionalization prior to 1999.

Currently the United States operates the National Hansen’s Disease Program that administers 13 outpatient clinics throughout the country. Persons newly diagnosed usually do not require hospitalization as treatment can stop the growth of the bacilli within a 24 hour period. Different levels of disability continue to exist but one type of disability rarely addressed is the one related to emotional trauma that is closely linked to stigma. Intervention by professionally trained counselors is severely lacking.

The number of new cases in the United States is very small in comparison to the total population. However, the numbers, unlike other parts of the world, are slowly increasing. So as the numbers world-wide decline, the effects of stigma are not lessening.

There is documented evidence that the leprosy bacilli has existed for 4,000 years, and stigma has been it co-dependent sibling. Research might eventually lead to a treatment protocol that could lessen or stabilize the number of new cases; however, stigma has not, and likely will not be impacted by research. So the portrait of leprosy and stigma must be painted on a different kind of fabric.

For José Ramirez, Jr., the journey with leprosy has been extremely painful, physically, emotionally and spiritually. With the love and support of his parents, six sisters, and six brothers I have been able to suppress that pain. As a licensed clinical social worker specializing in crisis care, married, one son with a degree in Informational Security and a daughter with a law degree, the future is about the battle to destroy the walls of stigma that prevent persons affected by leprosy from enjoying the same basic human rights, dignity and respect expected by those not affected by leprosy.

Regrettably historically the blood of persons affected by leprosy has been seen in a different color by the general populace. Now is the time to reverse the ravages history has inflicted and acknowledge that we are all human beings with the same color blood running through our veins.