Oral History Excerpts

Leonisa “Lily” Robin-Roma
Philippines

Introduction

The Oral History Project

Recovering Voices From
the Distant Past

Oral History Excerpts

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Stigma, Identity and Human Rights
Conference on Robben Island

Oral History Guidelines

Terminology

Books Written by People Who
Have Had Leprosy

Contact Information

April 29, 1939.  The saddest moment in my life, for this was the day when I was confined in Eversley Childs Sanitarium (ECS).  How I cried when my father left me there.  The pain of being separated from my family for the first time was seemingly unbearable, and I was only eleven years old.  However, it was summer and a sports fest was going on.  Games were played and, as I watched them, my sorrows were relieved.

I thought my life in ECS would be totally miserable, but when I learned that there was a school in the hospital compound, I was very happy.  Going to school had always been a great joy and the thought of studying again was enough for me to be hopeful and cheerful in spite of my malady.

In June 1939, I enrolled in Grade VI and made the most of all the school activities and opportunities for me to learn and enjoy.  I participated in all school events.  There was no school program that I didn’t participate in.  I showed talent in singing, dancing and acting.  Surprisingly, I once again became the enthusiastic and lively person that I was before I got sick.

May 12, 1940.  It was Hospital Day.  A politician – Congressman – was the guest speaker.  During the convention program, in his speech he said that ECS is the place of the “living dead”.  It was very hurtful and discouraging.  I cried!  I asked our “Encargada” (person in charge) the truth about it and she pacified me, saying, “Do not put it in your heart; he is just trying to make his speech emotional.

In April, 1941, I finished my elementary studies.  Since there was no high school our Encargada, who was a teacher by profession, gave us classes in Algebra and English.  We were also taught embroidery and crochet.  My skill in these arts developed very well because of the great interest and effort I put into them.  I got orders and started earning from my embroidery.

December 8, 1941.  World War II broke out.  Patients were allowed to go home, and I was one of those who went home.  I was very happy to be reunited with my family again, but that was only short-lived because my father died of malaria after his capture by the Japanese.  I grieved so much at my father’s death.  His death, the bombings, fear of the Japanese soldiers, poor diet and sleepless nights, triggered severe reactions on my face and extremities so that I could not hide my disease anymore from people.  I was reported to the guerillas and they did not allow us to live near them, especially near the river because they thought I might contaminate the water.  So, we were forced to move to a place where we could not have neighbors and that was near the “firing line”.  It was very degrading, but I thank God for my positive attitude plus the support of my family.  I did not wallow in self-pity.  Instead, I accepted the situation calmly and with understanding.

Fortunately, a friend of my father came and offered to guide us back to our home province in Leyte.  We secured a passport, hired a squad of guerrillas and a Muslim guide who was a sniper.  They helped us reach Misamis Occidental where we rented a sailboat that brought us to Leyte.  We stayed in our small farm in our hometown, Merida, where most of our relatives lived.  At first I was happy and thankful that I was now living near my relatives, especially with cousins of my age.  But later on, I sensed that they were withdrawing from me, afraid of my malady.  They no longer came to visit me.  This hurt so much, but then again I did not allow the situation to destroy my dignity as a person.  I remained steadfast in my belief in my worth as an individual.  I did household chores well and took care of my younger brothers and sisters.  But I also prayed hard that the war would be over so I could go back to Cebu Leprosarium.  When I heard that the Japanese surrendered, my soul danced with joy.  There was no transportation yet, but my mother rented a sailboat to bring me to Cebu.  My old friends who did not go home where there to meet me.  I was so happy.  There was no more discrimination.

In June, 1946, high school was opened in ECS.  I was one of those who enrolled first in the First Year.  In April, 1951, we finished the four year high school course but only 17 out of the 36 pioneer First Year enrollees graduated.  The others were not able to tackle the nerve pain, reactions and other sicknesses they encountered.  After my high school graduation, I studied hair dressing and dressmaking through observation and experience.  I did not go to school.  Instead I became a helper/assistant to a hair dresser and a dressmaker.  Eventually I acquired the necessary skills and started earning profitably for I was the only hairdresser in the compound, and the dressmakers were very few.

In 1957, I got married to my classmate and was blessed with eight children, five girls and three boys.  Luckily, through hard work, my husband was able to continue his college studies.  A month after his graduation from Elementary Teachers Course, our first child was born.  Then, he was able to teach but far from us, in Palawan Province

During my married life, there were so many “ups and downs” that we encountered but we were not discouraged.  We considered all those as tests in life on how strong was our faith.  We really put all our trust in the Lord.

In 1963, after teaching in different private schools, my husband was able to teach in the government school, and I decided to go back to school.  I realized that I needed to finish a college degree if I was to help my husband meet the needs of our growing family.  At this time, I was already 34 years old with six children and pregnant with my seventh child.  The fact that I would be integrating with people not affected by Hansen’s Disease did not deter my pursuit for further education, because foremost in my mind was the desire to help my husband, especially in educating our children.

After a year and a half of college studies, I stopped and accepted a job offered to me as a Relief Grantee.  I was assigned to the Social Work Office for six months under Mrs. Leona Abellana.  It was the start of my working with people who were not sick with leprosy.  I did not experience rejection because I made myself truly useful in the office.  My dedication and commitment to my work was evident.  I gave lectures – demonstrations in handicrafts like making wall décor, embroidery, crochet, hairdressing and dressmaking – to the young mothers who came to the office.  Our projects on display attracted customers and started to generate income.

In 1972, my husband died of metastasis of the liver.  How I cried.  It was as if the whole world crumbled down upon my shoulders.  I was left alone to feed, clothe and educate my children.  I was wondering where to work so I could let my children finish their studies and mine too since I had not stopped dreaming of getting my college degree.  Mrs. Abellana helped me to find a good job.  I became a Program Aide in one of the CCF (Christian Children’s Fund) Affiliate projects, the Christian Child Care Program.  The CCF has its main office in Richmond, Virginia, USA.  The field office is in Manila and our project office was at the Mottern Memorial Chapel, inside the Eversley Childs Sanitarium compound in Jagobiao, Mandaue City.

I started my work and continued my studies after office hours.  I took up social work since it was related to my new job and found it very fulfilling.  All of us in the family were studying.  That was rough sailing for me, but I was able to make it through help from Above.

In 1976, I graduated and passed the Board Exam together with my third child, Nancy, who also took up social work.  Consequently, I was promoted as Supervisor in the Christian Child Care Program where I was working.

There was a yearly visitation by all agencies.  During our first visit in one of the agencies my Christian Children’s Fund children were offered drinks, but glasses used by my children were right away put in a can of boiling water.  I had a bad feeling in my heart.

When our agency was visited by other agencies, I told them the history of our agency, and they were surprised to know that our children were all healthy and not patients.  The visiting supervisors thought that they were all patients.  Discussion began and we shared different projects undertaken by the agencies.  I shared our projects in economic advancement like weaving blankets and towels, mosquito net weaving, coconut midrib weaving, making bamboo planters, hair dressing fish vending and our cooperative store.  I stressed to them that parents were provided capital from the Agency’s budget for the economic advancement project.  From these projects, parents were able to earn reasonably.

In 1984, I was forced to retire because of an eye-ailment.  I could not read anymore and could no longer work effectively.  I was half-blind for seven years, but in 1991 had a successful eye operation.  I was not able to go back to work because I was already 63 years old.

In 2002, I was invited to attend a meeting with Mrs. Amanda Limbaga, who suggested the idea of organizing men and women aged 50 and above.  We approved of it and we formulate the goals and objectives.  Election of officers followed and I was elected president of our organization – The Golden Age Organization.  Our members are active in church activities since one of our objectives is to serve the church.

Giving my best in whatever work I do helps me grow as a person capable of moving forward, no matter what difficulty lies ahead.  Dignity, self-respect, my worth as a person will always remain for, after all, I am a child of God, just like the rest of you.  It all depends on me for I can always be worthy to myself and to others if I want to be.  This depends on my attitude and behavior, for example respecting others more than respecting myself and serving them whenever necessary.

Getting involved with sincerity and commitment in any group activities, civic or religious in nature, facilitates my integration with people, even those not affected by Hansen’s Disease. 

Lastly, I say that to be a Hansen’s Disease patient is not a hindrance to success or to having a fruitful life because “in every cloud there is a silver lining”.

-- Speech presented at the First National Empowerment Workshop, March 11-14, 2005, Cebu City, Philippines, which was videotaped as part of the Oral History Project.

Inday Lily, as she is called by her friends.  “Inday” means “beloved child”. Photo Courtesy Nancy Roma-Sabuero