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< My Mother's Disease

Transcript

Friday, October 09, 2009

HOST INTRO: It's never easy to watch a family member become ill, especially with a disease that affects the mind. Rookie Reporter Victoria Cruz grew up watching her mother change into a different person because of a rare neurological disorder that's difficult to diagnose. But despite the increasing severity of her mother's symptoms, Vikky couldn't understand what was wrong with her. 17-year-old Vikky reports on how her family copes.

NARRATION: My mother is sick.

VIKKY: Let's go to Wikipedia. Yeah.

NARRATION: She has a disorder I can't even say.

VIKKY: Okay.

NARRATION: Neuroacanthocytosis.

VIKKY: Neuroacanthocythosis. All right, yeah I said it.

NARRATION: Her hands stuck in a fist.

VIKKY: It's a rare movement disorder marked by progressive muscular weakness and involuntary twisting movements of the body.

NARRATION: She can't balance when she walks.

VIKKY: Seizures and changes in personality.

NARRATION: When she's mad she starts throwing things, banging on tables, and doors and walls. And she can't really speak.

MOTHER: Hi Vikky. Hi Vikky Hi Vikky.

NARRATION: She said Hi Vikky like three times. And she asked how I'm doing.

MOTHER: How you doing?

NARRATION: People she meets are usually nice and try to make her feel good because they can see she's sick. It took me 10 years to understand her disease. I've been angry at my mother for so long that it's still hard for me to be nice to her.

VIKKY: Can you just lay down. All right if I didn't feel good I would just lay down and go to sleep, so why you can't do the same thing?

VIKKY: What are some things that you remember about our mother before?

ANGEL: Being nice. Like nice you know like bringing me to the park when I was a little kid. Buying me ice cream and you know like nice motherly and stuff.

NARRATION: Man I remember those days. I have this home video; my mother is holding the camera and talking. She sounds so clear.

MOM: (in Spanish)

NARRATION: I was 8 years old when I first saw her talking really slow and low. I remember the kids around where I used to live said she was "retarded or on drugs," I would tell them she was fine. It wasn't all the time. Sometimes she seemed better. But then she started losing weight and falling a lot. By the time I was 15, I knew something was wrong with her. The hospital even gave her a home attendant. What I didn't know was that she would change into a wild teenager. She wanted the same clothes and music as my friends. When she didn't get what she wanted, she would start crying. And she would say it's our fault that she's sick. So instead of us trying to find out what was wrong with her, everyone in my family just got angry.

NARRATION: Our father left us.

ANGEL: He didn't want to take care of mommy and us.

NARRATION: We moved in with my grandmother. But she gets mad too. My mother is always breaking her stuff around the house.

GRANDMOTHER: (In Spanish)

NARRATION: To me and my brothers - it seems like my mother only cares about herself.

ANGEL: She only cares for herself.

NARRATION: Like when she uses her SSI checks to buy sexy clothes like short skirts or see-through tops.

ANGEL: You should be like spending like life insurance like so when you die your children don't have to pay for your burial.

NARRATION: I know it seems strange, but we just can't stop believing she's doing it all for attention.

VIKKY: This is from the doctor.

NARRATION: Oh my gosh! No Lie! I didn't know what was going on until last summer, 10 years after my mother started acting different!

NARRATION: The doctor said it's genetic.

VIKKY: Hold on.

NARRATION: Damn! All of a sudden I thought I could get it!

VIKKY: It's crazy.

NARRATION: That's when I tried for the first time to find out all the symptoms and treatments! And that's when I learned that the disease changes a person's personality.

VIKKY: So how do you describe my mother?

DEOINE: She's a fun person and stuff.

NARRATION: My girlfriend Deoine calms me down and helps me look at things in a better way.

DEOINE: And I think she's sad cause she can't be the mother she wants to be. And here she comes...

NARRATION: I gave her my old clothes. She was in a mood, a good mood.

DEOINE: Yeah you can't fit those either?

MOM: No.

NARRATION: Sometimes, I do have fun with my mother. The problem is...as soon as I let myself feel happy with her, she goes into one of her bad moods again. And instead of taking 6 pills a day like she's supposed to, she'll take all of her pills at once. Here we go again.

VIKKY: Have you ever tried to kill yourself?

MOTHER: Yes.

VIKKY: Yeah? Why?

MOTHER: Nobody loves me.

VIKKY: 'Cause nobody loves you in here? Why is that?

VIKKY: Why you think nobody loves you?

MOTHER: No one understands me.

VIKKY: Nobody understands you?

VIKKY: So that's why you trying to kill yourself?

NARRATION: At times like these -- I just want to feel empty inside. I want people to think I'm tough, but I do cry.

VIKKY: It's so hard to ignore it.

NARRATION: I go in the bathroom if people are around.

VIKKY: I don't want to change the way I look at her like you know make me look at her like she's a sick person, no. I want to look at her as a mother.

ERIC: Start.

VIKKY: Mphm.

ERIC: My name is Eric I'm 26 years old.

NARRATION: Recently I got to speak with a couple of people who knew exactly what I was going through.

ERIC: It's such a rare disease. You know there's like maybe 200 people in the entire world that have it.

NARRATION: I got Eric Lau's number from his doctor 'cause his father has the same sickness.

VIKKY: Did you ever feel like he was doing it for attention?

ERIC: Yes. I would think that--it was part of his personality his personality changed into like a really bratty kid. Like a very selfish kid, not thinking about anything else. For example I would be sleeping he would call me up at 5 am in the morning until I pick up. It's really frustrating sometimes you know.

VIKKY: Yeah I do know.

ERIC: I'm sure your mom makes you angry sometimes.

VIKKY: Yes, a lot. I'm still trying to forget about that she didn't come to my graduation since she wants to act the way she acts so.

ERIC: Seem kind of messed. If your mom was well of course she would be there--it is just the disease I hope you understand that.

VIKKY: I'm trying to understand it.

VIKKY: Um do you want to introduce yourself?

JOANN: My name is Joann Williams.

NARRATION: Joann is also from the Bronx, not that far from me. She says she was frustrated too before she understood what was wrong with her son.

JOANN: I needed something to put a name on this thing.

NARRATION: It seems like she was glad to talk to me about her son.

JOANN: He ran away on Thanksgiving eve. He said I'm going to play the lotto 'cause he loves the lotto. All of his money is played on the lotto.

VIKKY: Wait! He really does that 'cause I just thought it was my mother. 'Cause my mother she wastes all her money on it too.

JOANN: He does that too.

NARRATION: MAN! They are soo alike! But, Joann never really got angry at her son.

JOANN: 'Cause I still want the best for him and people just didn't understand and I would see the stares. I think what really hurt me was when people would look at him.

NARRATION: When I saw her crying I wanted to get emotional too. I held it back.

VIKKY: Just got home.

VIKKY: The living room is mad quite without my mother yo...Like for real.

NARRATION: When my mother's in the hospital - I can concentrate, do my homework, and watch my favorite TV show One Tree Hill!

NATHAN: Haley look I need to apologize okay.

NARRATION: To be honest, I like it when she's gone. But I do miss her. I think about her weird gifts like when she bought this toy bird that chirps--it's annoying and strange, aww but it's sweet.

NATHAN: Being around you I just I don't want to be that guy anymore.

HAYLEE: Well who do you want to be Nathan?

NARRATION: I tried to explain to my brothers and grandmother about what I learned from Eric and Joann.

ERIC: Yeah, whenever you're in trouble or frustrated. Just give me a call. Stay strong. Surround yourself with positive things.

VIKKY: Thank you so much. The only reason I'm laughing.

ERIC: Why?

VIKKY: It's not cause I'm laughing, it's 'cause (awkwardness) I don't know it's just how I am.

ERICK: I know exactly what you're saying. You're saying it's really hard to talk about it because you kept it so long to yourself. And you don't know how to react to it.

VIKKY: Yeah.

NARRATION: I'm also trying to be more helpful when my mother is home. I make sure she takes the right pills and not all of them at the same time.

VIKKY: These are the one you take in the morning?

MOTHER: Mmhpmh.

VIKKY: Let me see these big ones.

NARRATION: I want to show her more love, maybe she'll stop trying to kill herself - but it's going to be really hard 'cause I don't know how.

FOR WNYC, I'm Rookie Reporter Victoria Cruz.

Produced by:

Sanda Htyte

Editors:

Marianne McCune

Contributors:

Victoria "Vikky" Cruz