An Interview With 'Alicia'

Is it ok to take your picture?

No. Even the poorest of people can get a computer and see it. People are still very unaware of the disease. What's important is that they hear our stories.

Can you tell me about your life with Hansen's disease?

I was 35 when I first had the symptoms, and said ‘oh mother me, what is wrong?' I started losing sensitivity in my hands and I could pick up hot plates and a boiling pot and not feel anything. Then I went to a doctor and they made me take a lot of exams for everything. The tests came back and they were negative for everything and the doctor didn't know what to tell me. I had to go back to my normal life and work because I had to uphold my family and take care of them.

Four years went by and my body started to hurt when I woke up in the morning. My feet started to swell up and I thought it was my kidneys. The first real symptom I had was ball on my leg that was hard and black. Since I worked at a lady's house and worked washing clothing and I thought a bug had bit me. So I took a razor and sliced it open to see what it was. Now looking back, I thank God for having mercy on my life for it not getting infected. I would go to my friends house and they would say ‘you have such ugly feet' because the skin started to split and I couldn't wear sandals anymore because my feet were swollen and it was painful. I kept working and would get really high fevers and chills and the temperature went up. I hope no one ever has to feel that pain.

(Crying) Two years passed and I kept getting boils on my legs and the doctors kept giving me pills to make it go away and nothing helped. One day I was at my friend's house grinding and roasting cocoa beans and chocolate all day and when I got home I had burned my entire knee off and didn't notice. The anxiety was killing me that no one could tell me what was wrong with me because it had been going on for so many years. The wound wouldn't heal and I kept going for a year and a half more. I couldn't afford not to work and the laundry detergent would sting my leg and would not allow it to heal. The only thing that got me through it was God and my children. My friends suggested [an ointment] to me; in the jungle there is a tree that releases milk, and I started putting it on and it cured my knee. I couldn't afford to go to doctors anymore and even when I went they still hadn't diagnosed me with the disease.

I came to Damien House when I was 45, and until that age I was working and working and working, and over time, I slowly lost my appetite because of the fever. One day I went to work and my cousin who worked across the street took me to the doctor and I went into a coma. The bumps that were on my legs had spread all over my body.

How long were you in a coma?

About a day. When I woke, I couldn't breathe because the bumps were inside my nose and ears. I had to stop working because I had no energy to work anymore and I couldn't wear clothing because it was so painful and I didn't know how to pay my bills.

There was a doctor from Guyaquil who finally diagnosed me with the disease. They told me that I had to go to Damien House. The day I came here, there was a strike in front of the ward and they wouldn't let me through. I was in so much pain that I yelled at them that they were inhuman. I was so close to being here and they wouldn't let me through.

How did you get inside?

I was desperate. I laid down on a bench outside and one of the sisters from inside saw me and said “You're supposed to be in here with us,” and brought me inside.

What is life like at Damien House?

This place is a blessing from God because here I found my health, a new family, support and I found love. Here, I found a new life. I appreciate everything that Sister Annie has done. I thank everyone who has ever helped Damien House.