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Manuela Ortega Molina
Fontilles, Spain


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Manuela Ortega Molina at home in Fontilles. Photo by Magdalena Ramirez

When I came here I was told that I would be staying 15 days, but the 15 days went by and I was still here. After 1½ months, the fevers subsided, and after 4 months I went home for a month.  That’s how it was.  I don’t know how many years I had been positive before that.

I did not cry.  I didn’t think about my future. You can’t cry in this place, people would say “Don’t cry, don’t think, don’t do anything, just be patient. Everything will come to pass. You will see . . .”  My husband would come to see me whenever he could, if not every month, every other month.  We have been married 47 years.  He never said to me “I don’t love you, I don’t want you, I will leave you.”  He never said that. Never . . . .

I was 35 or 36 (goodness I am forgetting how old I was!) years old and had all of my five children at the time. Two of my children died before that.  My husband could not bring them to visit because there was no money. When I was discharged he brought them to see me.  When I went home, I did not know that my children were alone, my husband did not tell me, as he did not want to hurt me.  I saw my house so empty, so dirty, so unkempt, and so sad.  My children were in misery, dirty, malnourished (undernourished) their heads infested with lice.  When I saw all this, my heart sank and I then decided to do my best to get well.  The treatment had been successful, so that I could go home every weekI had never known anyone else with this disease. There was no one on my father’s side and no one on my mother’s side with this disease.  If there was or was not, I have no knowledge of anyone in the family.

[When did you start making friends here?] Immediately.  That first day when I arrived my room was filled with women and men and we all became good friends.  There were some older, and there were younger women than I, but very few.  There were some who were 15 and 16 years old, but very few.  All of the women were my friends, they were all my best friends.  Everyone loves me, and I love everyone.  I lived in the first building where you are staying now the first night I was here, the second night in the infirmary.  The women were in one building and men in another.  Married couples were also separated.  Men upstairs and women downstairs.

There were other sad times yes, but as far as I was concerned I was not sad. I saw myself well, I looked around me and saw that I had no reactions, that the medication was working and saw no reason to be sad so, no I was not sad.  I have never stopped laughing.  I always laughed, always.  I will not show sadness because I feel that no one is to blame for what happens to me, so there is no reason to show sadness.  My faith keeps me going.  Of course I have never seen God, but I know that he exists.  I married in the church, in my religion, so I believe, I believe.

[Looking back, how would you describe your life?] Bad, very sad.  My life was sad because I had to leave my children. That is the hardest thing for a mother to do, to leave her children.  Not to have anyone to trust and to leave behind five children on a farm, far away from everything and so alone. Not even a neighbor.  I don’t blame myself.  I did not ask for this.  I knew that I was sick.  I saw the discoloration and patches on my arm, and I knew that was not my fault.  I had five children all around my bed saying, “I’m hungry.” Who was going to feed them and tend to them?  Who is to blame for that?  No one.

My children remember and they say, “Forget that mother, that’s in the past, it doesn’t matter.  It’s water under the bridge.”  My eldest is 46 years old, my other boy 44, another 43 and the other 42, and my girl is 35.  They know that I was a good mother and whatever happened was not my fault.  In fact when they visit me for the holidays they always say, “No one cooks like our mother.”

[Are you planning on staying here for the rest of your life?] Yes, I think so, I have everything here, I have a home, I have food and I have friends.  Besides, what would I do outside?  This is my home.  I have been [living in this apartment] here 14-15 years.  I still have my house in Majorca.  My children take care of it

[When the time comes for your soul to leave this world, where would you like your body to be put to rest?]  Here, in Fontilles.  I was very, very sick when I came here.  I was treated with kindness and understanding.  I was given so much love, and respect.

[If you were to meet a young girl who has just recently been diagnosed with HD. Based on your experience, what advice would you give her?] I would say to her to be very patient, very patient, not to stress, not to worry, not to cry because everything will soon pass.

[Do you ever think of your brothers and sisters around the world? Those men and women whom we consider our brothers and sisters because they have the same disease. What message would you send to those brothers and sisters?]

If I could, I would tell them to be patient, everything comes to an end, everything passes.

 -- Interview by Jose Ramirez, Jr. and Magdalena Ramirez, December, 2003.  Translated from Spanish by Ymelda Beauchamp.  Copyright 2003 Manuela Ortega Molina and IDEA.