JACKI LYDEN, host:
Welcome back to All Things Considered. I'm Jacki Lyden. Jose Ramirez was taken to the hospital in a hearse. The year was 1968. He was 20 years old and just diagnosed with leprosy. He would spend the next four years at the leprosarium, a hospital in Carville, Louisiana.
Ramirez has written about his experiences in the new memoir, "Squint: My Journey with Leprosy." He joins me now from member station KUHF in Houston, Texas. Jose Ramirez, welcome to the program.
Mr. JOSE RAMIREZ (Author, "Squint: My Journey with Leprosy"): Thank you. I'm glad to be here.
LYDEN: You begin your book with a definition of the word squint, which I had never heard before. Could you explain how you're using this term?
Mr. RAMIREZ: Well, squint actually is an architectural feature that was used back in the Middle Ages to signify an opening in the back of a church. And it was specifically set up for persons who were considered to have leprosy.
Whenever anybody was deemed to have leprosy, they were given the last rites, banished from the community and then forced to come back on Sundays for service. But they could only participate through looking at - through this architectural feature called squint.
LYDEN: And squint also refers to your journey to the leprosarium which was unusual, to say the least.
Mr. RAMIREZ: Actually, yes. I was required to go there according to the Health Department in Texas at the time. And the reason I was taken in a hearse was because of the fact that according to the people who owned the ambulances in Laredo, Texas, indicated that the ambulances were for the living and hearses for the dead.
So, as we traveled from Laredo, Texas, all the way to Carville, Louisiana, I would notice people as we stopped to gas up, that they would squint trying to look inside.
LYDEN: We should say that you don't like the "L" word, leper. You prefer to call this disease HD, for Hansen's disease. It's caused by a bacterium. Would you please describe some of the symptoms you experienced as a teenager?
Mr. RAMIREZ: Well, many of the symptoms would come and go. For example, I would have high fevers. I started to notice that I didn't have any sensation in my hands and my forearms. And I would actually show my siblings that I could get a pin and insert it into my forearm and not feel any pain.
I would have sores that would take a long time to heal. All of that was explained to me much later, and it has to do with the fact that it was poor circulation.
LYDEN: So, you're going on for years as a teenager and your parents don't know what's going on, and they take you to many doctors in Laredo, Texas, where you were living, and to a healer in Mexico, a traditional healer. What's the term you use for it?
Mr. RAMIREZ: It's a curandero. Curar is to cure. So, it's a person who cures, and it's a revered person in Mexico.
LYDEN: Mm-hmm. And this person actually did have some insight into what was afflicting you.
Mr. RAMIREZ: He actually did. At the time, I had multiple sores and again the fevers that would not go away. And as soon I walked into this shack, really, the gentleman looked at me, looked at my sores and said, you have a disease of the Bible. You need to see a doctor.
And to us at that time, it was like a riddle. We did not understand what he meant until, of course, I received my formal diagnosis.
LYDEN: Mm-hmm. You were 20 when you were finally diagnosed with Hansen's disease. This really disrupted your personal life, and you had a girlfriend named Magdalena.
I'd like you to read a passage from your book about one of your first memories at Carville, and that takes place in the foot clinic.
Mr. RAMIREZ: The treatment at the foot clinic was remarkably simple. Everyone's legs were placed in a large bucket filled with warm water and Alpha Keri lotion for approximately 15 minutes. Then, the legs were lightly patted dry and petroleum jelly generously applied to them.
As I stared deeply into the buckets, I wondered if my ability to walk would become a part of the past. I looked in amazement at hands damaged by the disease, and suddenly pondered if I would lose the ability to hold Magdalena's hand by interlocking our pinky fingers.
I looked at the many in the room whose noses had collapsed and tried to imagine looking at myself in the mirror to see what seemed like a partial face.
LYDEN: Was that a terrifying feeling for you at that time?
Mr. RAMIREZ: I could not find the words to describe what I was feeling because after meeting so many of the residents there and them telling me the stories about lost love and lost families and lost hope, that I would eventually would lose hope, as well and lose contact with my own family.
LYDEN: Your portrait of the second family that you are kind of adopted by at Carville is really vivid. There are hundreds of people there and you have everything, a post office, a cemetery, even a Lions' Club.
Mr. RAMIREZ: The community definitely was self-sustaining, and they are the ones who helped me to overcome that feeling of hopelessness. They - I think they saw something in me that they did not want to be repeated. I was the youngest person at that time, and even now when I go and visit, they all call me son.
LYDEN: You were allowed to go back and visit the family in Texas, and you have a painful story about how you tried to mark your utensils at home so that your siblings wouldn't use them. You're one of 13.
Mr. RAMIREZ: I realized that the disease is mildly communicable. It's not hereditary, and once you are on the treatment, the likelihood of passing it on to somebody else is very, very slim.
Yet, on my first visit back to Laredo, I feared that everything that I had seen and everything that I was experiencing at the hospital would be repeated through my siblings and in my parents. And I felt so guilty of even the thought that they would become ill.
So the first morning that I was there, I took out some tape and I was marking the glasses and the plates that I was going to use, utensils. My mother saw me and became extremely insulted, was very angry. This was very early in the morning, and she was making tortillas, and she came over to me, and (crying) she broke the plates on the ground and told me to please never do that again.
LYDEN: Yeah. She was asking you not to insult her like that and broke the plates, so that you would be no different than any other child and any of her other children.
Mr. RAMIREZ: Yes, I mean, obviously my mother had a profound influence on my life, and it's an unforgettable experience when you're taken away from your family. It's - you don't do it voluntarily. And I felt that I could not do anything.
I could not change what she was feeling and that (unintelligible) is that God was punishing her through me, and because if you look at the Bible and almost every scripture in every faith, it talks about leprosy in a very negative way. Everything is linked back to sin. So my mother thought that she was sinful - epicalora, as is said in Spanish.
LYDEN: Mm-hmm. One of the things that really shines through in your wonderful book is the support that you get from your mother and Magdalena, the woman who was your girlfriend at that time and who you married despite her mother's objections.
Mr. RAMIREZ: You know, Magdalena and I are now convinced in looking back that our love was already bonded before I was diagnosed. But I am - I was afraid that she would end up having to take care of me. Fortunately, she did not have to do that because I arrived at Carville at a very unique time when they were experimenting with quite a bit of medication and as a result, I was able to avoid all of the physical disabilities that normally come with the illness.
As you can tell from my earlier comments, I still have many scars in my soul, but the visible scars right now are from my waist down, primarily on my legs.
LYDEN: Is Carville closed as a residential compound for people with Hansen's disease?
Mr. RAMIREZ: Carville was officially closed in 1999, and the facility returned back to the state of Louisiana. However, part of the agreement with the state was that any resident who wanted to stay could stay there as long as they wanted to, and as of today, there are still 15 residents who reside there.
LYDEN: Do you go back and visit?
Mr. RAMIREZ: I'm actually going back later in February because we're dedicating a monument to those persons who died there and putting their names on there. So, I'll have a chance to revisit with my old friends who are in the cemetery, as well as those who are still alive.
LYDEN: Jose Ramirez, Jr.'s new memoir is called, "Squint: My Journey with Leprosy." Thank you for sharing it with us.
Mr. RAMIREZ: Thank you for the opportunity to be able to educate your audience.
LYDEN: And head to npr.org to read answers to frequently asked questions about Hansen's disease.