An Interview With Trinidad

What was life like when you first started having symptoms?

The first symptom was a blister on my leg around 1953 or so. Then it got better but the same thing happened on my arm, blisters and then they got better but I got numb on my arm. Then later I stepped on a nail and it got infected and I got a fever and it wasn't getting better. The doctor said that there's nothing that can be done and we need to amputate. My brother said not to amputate and they didn't. They took me home, and it was still really swollen. Everything was infected. With that, I was sick for 7 years in my house. I couldn't even get up.

How did you come to Damien House?

I was 38 years old when I came here. A Columbian doctor came to my house because I was pretty much bedridden. He diagnosed the Hansen's and said I needed to come here. I have a brother named Pedro who had been here in this hospital since 1946, and he's still here. He's blind now. He went blind from reading the bible at night.

I came from my town to here and I came walking from the bus station and I can't tell you how painful it was. It was almost unbearable. I've been here for almost 40 years.

What was life like then as opposed to now?

Sister Annie was not here then. It was a hospital that didn't have good conditions. There wasn't medicine or clothing for the patients. Before, everything had to be bought with Ecuadorian money. The patients had to find the money for all those things, for the hospital and for ourselves. There wasn't any money to pay for basic supplies and medicines.

This area that we are sitting in was a garbage area with rats and water. Things changed quite a bit since Sister Annie. They made some improvements over time, but nothing like what Sister Annie has done. She came to do all of these [improvements]. Before we didn't have any clothes, and now she gets them donated for us. We feel that cleaning up the hospital has made us all feel so much better, but she still needs a lot to continue the operation. For example, we need sheets and bedding and nightgowns and pajamas. Sometimes, there's not enough money to buy all of the food she needs to buy.

How did your family take the news that you had Hansen's?

No change. They helped me too much. They loved me just as much. They took as good care of me as they could.

When you first came here, did they have medicine for Hansen's?

They were just learning how to cure it. The doctor was coming to my home and bringing me the medicine but my foot was so bad that they told me I had to come here. They tried various treatments of my foot but finally in 1988, they amputated it. I was ok with my other leg, but then I started to get problems, and it got worse and I had a big huge hole on the bottom of my foot and you could see the bone. I took care of it, I didn't want them to cut it off. But there are some days when I couldn't get up, I'd stand up and fall back because I just couldn't stand the weight on my foot. They told me that it was going to be a lower amputation, but when they did the x-rays, they said “that won't help you” and it was in the bone and they needed to do a higher amputation. That was 3 years ago. Since then, I am healthy, thank God. But look, now I can stand. The day they inaugurated this building, they had a prayer and all the patients were here, and I don't know why, but I just had the urge to stand up so I grabbed my chair and I stood up and when Sister Annie noticed I was standing up, she was so proud.

If you could tell people anything about Hansen's, what would you tell them?

That the first thing is that they should not be afraid of the disease because if a person is diagnosed and treated early with the medicines, and if they come to a place like this and are given proper nutrition, they are readily cured. But if they don't make it to a place where they can receive treatment and nutrition, their case will become a tragedy. A tragedy like mine. I told Teresita “if you don't get the surgery now, you will gradually get worse and worse, and you'll end up at a point where they can't do as much for you.” So what you should do is turn your life over to God and the doctors and pray to God that he will guide the hands of the surgeons and you will be fine. She had a chance for a normal life and she had to fight for that for her child.

And you were right.

Yes, and now she's going to have another baby and she's happy… the truth is I love her a whole lot and I think of her as my niece. She is an exemplary girl.

It gives me such pity to see people who come here and don't get the surgery because there is so much that can be done for them.