Health

Alzheimer’s:
Every Minute Counts

 

Alzheimer’s disease is one of the most critical public health crises facing America. This program illuminates the social and economic consequences for the country unless a medical breakthrough is discovered for this currently incurable disease.

 

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LONG STORY SHORT WITH LESLIE WILCOX
Kalaupapa Memories

Program

 

In this special edition of Long Story Short, we recall our 2009 stay in the Kalaupapa community on Moloka‘i. Members of the dwindling population of former Hawai‘i Hansen’s Disease patients shared what it was like, many years ago, to leave their homes and families. Norbert Kaiama Palea, Elroy Makia Malo, Meli Watanuki and Clarence “Boogie” Kalihihiwa speak of isolation, loss, community, hope and renewal.

 

This program will be rebroadcast on Sunday, Dec. 2, at 4:00 pm and 11:30 pm.

 

Previews

 

Clarence “Boogie” Kalihihiwa

 

Elroy Makia Malo

 

Norbert Kaiama Palea

 

Kalaupapa Memories Audio

 

Download the Transcript

 

Transcript

 

Meli Watanuki:

 

I pray a lot when I came here.  I pray so much, you know, for sad of me, and take away all that sad to me.  Yeah.

 

Because you had so much sadness, and you needed it to be gone.  And? Did the sadness go away?

 

Yes. Now, I’m happy right now.

 

Elroy Makia Malo:

 

This young boy asked me: Why you wearing dark glasses?  I said: What?  Why you wearing dark glasses?  I didn’t know what to say.  I said: Oh … you wouldn’t want to know.

 

Clarence “Boogie” Kahilihiwa:

 

I met some good people; good people.  I mean, they’re all gone, and you know, we have to carry on what their dreams.  That’s what I feel today.

 

Norbert Kaiama Palea:

 

Look around you; look what God gave.  Look around. You know, lots to appreciate for about. You know, I still have a good mind. Thank God for that.  You know what I mean?  It’s the way you think; the way you think, the way you perceive things.

 

These are four of the last individuals from the dwindling population of Hansen’s Disease patients in the Kalaupapa community on Moloka‘i.  We’ll hear more of their memories, and find out how each found a sense of peace after much sickness and sorrow, coming up next, on a special edition of Long Story Short.

 

One-on-one engaging conversations with some of Hawai‘i’s most intriguing people: Long Story Short with Leslie Wilcox.

 

Aloha mai kākou. I’m Leslie Wilcox.  On this edition of Long Story Short, we’re recalling our 2009 trip to the remote Kalaupapa Peninsula on the north shore of Moloka‘i, where we talked story with some of the last remaining patients there. Kalaupapa is a place of great natural beauty, and yet, it will always be linked to the once dreaded disease leprosy, also called Hansen’s Disease.  Starting in 1866, thousands of Hawai‘i residents diagnosed with this disease were ripped from their families, and quarantined in Kalaupapa.  When I spoke with these four residents in 2009, they were preparing to travel to Rome for the sainthood ceremony for Father Damien. He was their hero, who cared for patients in Kalaupapa, and ultimately died of leprosy.  First, we visit with Norbert Kaiama Palea, who was just a keiki when he was taken to the old Kalihi Hospital detention center.  His next stop was Kalaupapa, where his father had already been forced to go.

 

My name Kaiama.  When I was a child, maybe about a year old, my grandfolks told my mom I’m gonna be taken away from her.  Just like that.  So, they said: We going give you the name Kaiama; it means strong.

 

Like the ama in the ocean, of the canoe.

 

You’re not gonna fall to the side, and all that.  So, I believed that, you know, the name.

 

So, when you received the name Kaiama, and they knew you had to be strong, and they said you’d be taken away, what was that all about?

 

I know my name is Norbert, but all my brothers and sisters, my family, they don’t call me Norbert.  Only the family call me that name.  So, all my brothers and sisters began to call me that every time they come.  You know, so I become it.  I don’t know, but they start calling me that name.

 

Do you think it was destiny that you came here, fate, or was that just a lucky guess that somebody thought you were gonna be taken away?

 

It was destiny.  And I have no regrets about it; none whatsoever.  I feel this way: that, you know, when something sad happens to you, you know, you grow from that.  Sadness is a good thing, you know.  Lot of people say: Oh?  Sadness changes your whole outlook in life.  So, my mother said: Don’t turn around.  So, when we got on the plane—I remember that, just before coming—everybody was crying, you know, and I was singing.  Just like their wails, their crying was above my voice.  So, I remember, I just looked back.  And then, I still remember their faces, my mother and my … in fact, before, they was crying, my mother said: Remember now, Kaiama, don’t cry, now.  I said: Ma, how come they’re crying?  But nobody’s crying; I don’t see no tears, but I can feel it.  And she said: Oh, because they love you.  You know, my mother had all the answers for everything. She was a wizard.

 

Here’s a mom who lost her husband, and the eleventh child.

 

Yeah; my mother was a very strong lady.  She believed in God and everything, you know.  So, she instilled in me something that no professors of mine that I’ve had over the years can ever give you that kind of value.

 

Your mom, you say, was very strong.  And of course, she had other children; you were the eleventh.  But I can’t believe she would have been that strong for so long, not being with her little boy.

 

Every time when I used to go home for funerals—and I just went to two recently. Every year, I’m going down for funerals. There’s so many of us; there’s hundreds of us.  So, I go to the funeral, and then my grandnieces, my great-grandnieces, they always say to me: You know, Uncle, every time Grandma used say she’d cry every single day, even ‘til now.  You know.  My mother used to say: They cheat me of you; they robbed me.  You know, the relationship between us.  And my brothers and sisters, too.  And when I talk about this place, and I want to come back, my brothers and sisters would cry.  My mother said: You didn’t have the sick, you know; remember that, you did not have the sick. You know, you didn’t do anything wrong.

 

There’s such loneliness here, and yet, such a sense of community, too.

 

I don’t feel.  And you know something?

 

You never felt lonely?

 

Never, ever.  It’s like this; I’m home here in my house.  Now, I know a lot of people that’s here, I’m younger than them; right? So, I look up to them, I respect them. Not because I have a better education, that I’m better than them.  No, I’m not. I’m below them.  So, if I know they’re sick or something, I go and take something to them, or give up some time and go there.  We don’t have time to worry about getting sad.  To me, you know, when you help other people, you’re actually helping yourself.

 

You know, it sounds like you’ve made the very best of this, and you have appreciation of abundance, not scarcity. But what about some of the folks who were here at the same time?  I mean, that can’t be that common a reaction, just acceptance.  You must have seen a lot of defiance and—

 

Oh, I’ve seen a lot of—oh, it’s heartbreaking.  I’ve seen it.  But then, as the years go by, because we have all these great leaders here, you know, one word from them, they can calm everybody down.  A‘ole!, they would say.  Don’t think, and don’t feel that way.  This is just a new beginning.  That is a beginning.  And why we’re here, we are not to question God; why you’re here.  It’s not for or me to say: Oh, why did you give me this sick? You know, the thing is to accept it, and make the best out of it.  And then, appreciate everything that’s around you, and then one day, you’re gonna see the beauty.  You see? Even if he sent us here, but look around.  You know what I mean?  Look, he gave us the most beautiful woman in the world.  That’s the icing on the cake.

 

Thanks to the discovery of effective treatment in the late 1940s, Norbert Kaiama Palea was eventually able to leave Kalaupapa to attend college, and pursue a successful career in fashion design.  He traveled widely, and returned.  He told me several times during our conversation that he was kolohe, or a rascal; not a typical patient.  Not long after we spoke near the large breadfruit trees in his yard in Kalaupapa, he was arrested.  The Feds took him into custody on suspicion of possession of meth amphetamine, with intent to distribute it.  He pleaded guilty in August of 2010, and served almost five years before his release in 2015.

 

Next, we chat with Clarence Kahilihiwa, better known by his nickname, Boogie.  Just a bit older than Norbert, he was diagnosed two years later, and by then, many patients were being treated at the Hale Mohalu facility in Central O‘ahu. Still, that meant uprooting the eight-year-old boy from his home in Kalapana on the Big Island.  Boogie had already said goodbye to three siblings, and eventually, he would follow them to Kalaupapa.

 

Why do they call you Boogie?

 

The real story.

 

Long story short; long story short.  Okay.  World War II … I think I was about three years old.  You know, we come from Kalapana, and we had the old type gas masks. And going school, even kindergarten, we still had to carry our gas mask.  But my sister them used to, you know, scare me, and then they call me Boogieman, Boogieman.  That’s how I got the name.

 

Did you actually get diagnosed?

 

Yes, I did.  Yeah.

 

And how old were you?

 

I was about nine.  Yeah. Or maybe I was eight in ’49, you know.

 

Was there a lot of worry on your part, on your family’s part, that you were going away to be checked out for a blemish, and when your sister and brother went, they didn’t come back.

 

I think it was more on my mom’s side.  In fact, in a way, I was kinda happy that I was in Honolulu, because you know, Honolulu was a different island to me.  And it didn’t bother me, really, that I was separated at that time, until maybe about two, three days.  Then my mom them left me there, and then they came back a short while afterwards. Maybe about a month, they came back to Honolulu.  And that’s when I really … I saw my mother crying.

 

And you were the third child she had lost to isolation.

 

I was the fourth.

 

Fourth child.

 

Fourth; yeah.

 

So, at that point, you were living in Hale Mohalu in Pearl City.  Didn’t they have a fence around it?

 

Oh, shucks.   To me, looked like one prison.  You remember the picture, Stalag 17, I think it was.  You know, they got the fence up like this, and they got the barbed wire this way.

 

Were there other kids your age, nine years old?

 

Norbert came in not too long afterwards.  Then, another week, a few more came in.  In fact, when I went to Hale Mohalu, looked like they just moved into Mohalu not too long ago.  After a while, I came up here.

 

Did anybody tell you you’re going there, and it’s in effect a death sentence, there is no cure, people get terribly sick?

 

No, not when I was young.

 

And you’ll never come back.

 

No, no; not when I was young.  Because I knew I was coming here to see my sister and my brother.  And I knew I was going back.

 

How many people were here when you came?

 

When I came, well, the first time I came here, I would say about over five hundred.

 

Patients?

Patients.

 

And now, fewer than twenty, this day in 2009.

 

I would say over.  But those days, people was dying too, see?  You know.  When you hear the bell, you know who’s that.

 

What was it like living here?  When were you a kid, what was it like?

 

It’s all right.  You know. Nobody tells me what for do.  We go down the beach, no fences around.  Only thing, we have to be home at a certain time, you know.  There was a little control on the staying up late, we need our nap in the afternoon. You know.  Was good.  I liked it. I met a lot of good people.

 

Was there a lot of sickness?

 

Yeah; there were a lot of people.  I mean, a lot of them at that time had kidney problems, heart failure.  Yeah.  A lot of them was blind; we had a lot of blind people, blind patients.

 

Did that make you afraid of what was ahead for you?

 

No; I didn’t think that way.  In fact, some of them became very good friends, and you know, they began to tell us stories about their time.

 

You’ve been to a lot of funerals in your life.

 

Oh, yes.

 

More so than the average person who does not live in Kalaupapa.

 

I think so too.  You gotta go, because that’s the last time you going see him, whether he’s lying in the coffin or what.  People have this thing about they don’t want to see a dead man.  I know that, but it’s the same when you have a photo.  You wish you could have said something, or you know.

 

So, you go, even though it takes it out of you.

 

Yeah; yeah.  You have to go.

 

In the fall of 2018, Boogie Kahilihiwa remains active in the Kalaupapa community.  He still runs the bookstore, and is president of Ka ‘Ohana O Kalaupapa, a nonprofit organization advocating on a variety of issues, developing a new memorial for patients, and perpetuating Hawaiian culture in the community.

 

Next, we meet a man who arrived in Kalaupapa the same year as Norbert Palea in 1947, and lived there for almost twenty-five years before returning to Honolulu.  You may recognize Elroy Makia Malo as a noted Hawaiian storyteller.  And many of the stories he’s told relate to coming of age in Kalaupapa.  Makia lived with his large family on Hawaiian homestead land in Papakolea until the age of twelve, when symptoms of Hansen’s Disease appeared, and he followed two siblings to Kalaupapa.  Once there, his symptoms got worse.

 

Is going blind a common effect of Hansen’s Disease?

 

For many, yeah.  Yeah. Was one of the things.  Not everybody became blind, but many.

 

When you felt yourself going blind, and knowing that others at the settlement tended to be shut-ins once they were blind, did you tell anyone?

 

No; not even the doctor.

 

You were trying to keep it a secret, so that you could be out and about?

 

I didn’t know I was blind.  So, the doctor asked me how I was doing.  I said, okay. A whole week, I couldn’t see.  But like I say, my mind was, it was temporary. So, I’d find my way to the bathroom by just hanging onto the wall, and crossing the floor by counting the doors where another bathroom is.  So, that evening, I got up, and I’m looking around—listening, rather.  Nobody in the hallway.  I walk out down the hallway, come to the nurse’s station, and nobody in there.  Right across the nurse’s station, right alongside the continuing hallway down the outside is this pillar.  I can see the light inside the telephone booth.  I walk straight to the light.  I said: Oh, Mama, Mama, this is Makia.  Mama, can you and Daddy come down tomorrow?  Yeah, okay, son.  They came down, and Daddy ended up sitting at the end of the bed, Mama sits on my right. And Mama always did this; she sit by me, and she grab my arm, she rubs my arm, rubs my arm.  And then I say: Mama, Mama … I have something to say. And Mama says: Yes, son.  Mama … Mama, I’m blind.  Yes, son.  She keeps on rubbing.  Mama, you heard me?  She says: Yes, son.  She continues rubbing, and each time it’s getting harder, and harder.  Mama, Mama, I’m burning.  And I could hear her sobbing as she’s rubbing harder, and harder. And my dad, I can tell when he’s crying; he starts sniffling.  You know.

 

M-hm.

 

And that was how I told my parents I was blind.

 

Makia Malo did much more than survive.  In 1971, he moved back to Honolulu and earned a degree in Hawaiian studies from the University of Hawai‘i.  Makia’s talent for storytelling caught the attention of master storyteller Jeff Gere, who presented Makia to audiences.  And then, Makia met and married Ann Grant, who provided the vision to bring his stories to school children.

 

Suddenly, I see a face, an almost featureless face, a face whose eyes show the discoloration of one blind, a face whose nose has been ravaged, flattened, and the skin mottled with so many scars.

 

Who made the first move?

 

Oh, her.

 

She wanted to take me to her apartment.  And I was thinking: Oh, jeez, how I going get home?  It was from that day on, she comes see me.  You know, we just kept in touch.  I just couldn’t see what this Haole girl from the mainland coming after me.  I thought she’s crazy.

 

I’m blind, I’m all jammed up.  I have an embarrassing history.  Didn’t matter to her.  But I felt bad for her.  Wow.

 

Sounds like she didn’t complain, her whole long marriage with you.

 

No, she didn’t complain.  She got angry often, and now and then, I would get angry too.  But she was my angel, man.  Oh, god.  What a life she helped me into.

 

In the fall of 2018, Makia Malo was living in Honolulu receiving special care.  His engaging storytelling helped to share the Kalaupapa experience with young people, and preserve it for future generations.

 

At this time in 2018, Meli Watanuki works in the Kalaupapa General Store. Back in 1952, she was diagnosed with Hansen’s Disease in American Samoa, and left her home and family for treatment in Western Samoa.  Later, she came to Hawai‘i.

 

So, how did you get to Honolulu?

 

Okay. So, when I paroled, you know—

 

They called it a parole?

 

Yeah, parole, just like you’re discharged from the sickness.  Yeah; the Hansen’s Disease.  So, my stepsister was here, and my stepmother.  They know that I was discharged from October 19, 1958. So, you know, they told me to come here in Hawai‘i.  And I said: Well, I’m not too sure.  But they said: You come, come; you just come out from the hospital.  Yeah; so that’s why I came Hawai‘i.  And then, I married, and then I moved out.  So …

 

You thought all your troubles were behind you; you got married.

 

Yes.

 

Did you have a baby?

 

Yeah. I have one child; it’s a boy.  So, 1964, I just see, because I know when I come Samoa, you know, I don’t know where to go pick up my medicine.  So, I thought it’s finished already.  And you know, they said: You’re supposed to go take your medicine.  I said: No, I did not, because I don’t know the hospital.  So, I went go take test, and just few weeks, and then they called me and said: Yeah, you set up something with your baby and your husband, and then you gotta go Hale Mohalu.  I said: Oh, fine.  And I feel that I better not stay there, because with my baby, I don’t want my baby to get sick.  Because he’s too young, I think only three years old.  So, I set up things, and I talked to my husband.  And my husband think, you know, just like you go hospital, you know, and few days come back.  But end up that was not.  Then, he came visit me with my son, and they see all the fence around.  But get plenty other Filipino there too at Hale Mohalu, so they was talking.  And he said: They talk Filipino.  And then, end up that was the last day I see him and my son.  They never come back.

 

So, you didn’t see your son from the time he was three, to the time he was in college?

 

No.

 

You seem so matter-of-fact when you talk about it. How much does it still hurt?  I know you’ve talked about it, you’ve had time to deal with it, but how are you with it?

 

I feel hurt.  It’s hard for me, trying to go help him and tell him, you know, your mom love you.

 

And now, nothing?

 

Nothing.  They never come back, they never call, no write.  So, I just let it go.

 

Why did you come to Kalaupapa?  You weren’t banished, you didn’t have to live here.

 

I feel happy.  Because when I came here, they was really good.  You know, and they tell me: Anytime, you can go Honolulu, you can go Las Vegas, you can go anyplace, but this is your home.  So oh, okay.  And I’m really, really happy, you know, to stay here.

 

And how’s your health?

 

My health is okay.  Only, I have asthma.  So, it’s taken care, you know, every time I go see the doctor.  Yes.

 

So, the Hansen’s Disease is not a problem?

 

No, it’s finished already.  Yeah.

 

So, you’ve had so much loss in your life.  Is that how you see it?

 

I really feel, what’s happened with all this thing they went do, I pray a lot when I came here.  I pray so much, you know, for sad of me, and take away all that sad to me.

 

Because you had so much sadness, and you needed it to be gone.  And did the sadness go away?

 

Yes. Now, I’m happy right now.  Plus, my husband, they are so nice to me.

 

Meli Watanuki chose Kalaupapa as her home.  In 2018, she’s lived in Kalaupapa for almost fifty years with her second husband, who passed away, and later her third husband, Randall Watanuki.

 

About eight thousand patients came to Kalaupapa, and most never left.  In the fall of 2018, we’re told only about nine patients remain in Kalaupapa out of the dozen still living.  It was a pleasure and an honor for our PBS Hawai‘i team to spend time with the residents. For Long Story Short and PBS Hawai‘i, I’m Leslie Wilcox.  Aloha nui.

 

For audio and written transcripts of all episodes of Long Story Short with Leslie Wilcox, visit PBSHawaii.org.  To download free podcasts of Long Story Short with Leslie Wilcox, go to the Apple iTunes Store or visit PBSHawaii.org.

 

So, when did romance blossom?

 

Oh, Leslie.  That was, you know, ’82 to 1995.  Then, that’s why, you know.  And I told him: Okay, you know what?  Time for me. Either you marry me or not, and you stay; you go, you move out, and I stay my house.  So, 1995, the first week of April, I told him: Okay, today is the day; either you move out, or we marry.  If we not marry, you move out.  If we marry, then you stay.  That’s all. You know, I cannot do this, no communion, I only go church and pray.  And then, he said: I want to marry you.  No kidding; are you sure?

 

And he wasn’t kidding.

 

He was not kidding.

 

 

TOO SOON TO FORGET:
The Journey of Younger Onset Alzheimer’s Disease

TOO SOON TO FORGET: The Journey of Younger Onset Alzheimer's Disease

 

Many people think Alzheimer’s is a disease that only affects older adults, but that’s not always true. When this disease strikes before the age of 65, it’s considered “younger onset” Alzheimer’s. This film takes an in-depth look at the particulars of this disease, and features nine families from a variety of backgrounds who share their stories and common experiences.

 

 

The Gene Doctors

The Gene Doctors

 

Every year, a million babies are born worldwide with hereditary diseases. Physicians once had little to offer. But now a new breed of gene doctors is on the case. Devising treatments that target the root causes, they are transforming patients’ lives.

 

 

GROWING BOLDER
Every Day Be a Victory

GROWING BOLDER: Every Day Be a Victory

 

In this episode of Growing Bolder TV: life will present every one of us with challenges, but we can overcome any obstacle when we start Growing Bolder. Meet ordinary people who are extraordinary role models.

 

Tony Handler was living a great life. He was married to the woman of his dreams, raising a family and enjoying every single day. But in an instant, everything changed. Doctors not only told him that he had pancreatic cancer, but they broke the news that he likely only had a few years to live. That was decades ago. And Tony has never given up hope. Despite grueling treatments, experimental drug protocols, surgeries and later, battles with liver, prostate and skin cancer, Tony kept moving. He started to run and that led to competing in triathlons. Tony says that every time he crosses a finish line, he’s beaten Mr. Cancer, and now he’s taking that positive attitude and paying it forward.

 

Other featured stories:

• Doug Ulman: Set Unachievable Goals
• Every Day is a Victory
• The Art of Rebellion
• The Takeaway: Don’t Procrastinate

 

 

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