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Life & Times Transcript
2/23/07 Val Zavala>> Tonight on Life and Times -- Her skin feels like it's crawling and she has open sores. Why don't doctors believe she's sick? Gail Anderson>> And I'm not delusional or paranoid and I know there is because it itches and it hurts. It hurts so bad. Dr. David Sawcer>> And you do nothing but keep scratching the bumps. Whether you do or you don't have an infestation, you do or you don't have a symptom, it will just keep going all by itself. Val Zavala>> And then, he was at the peak of his career when everything changed. How did he turn an AIDS diagnosis into a message of hope? It's all straight ahead on tonight's Life and Times. Announcer>> Life and Times is made possible through the generous support of the L.K. Whittier Foundation dedicated to improving the quality of life by supporting innovative endeavors in the fields of medicine, health, science and education. And by a generous grant from Jim and Anne Rothenberg. Val Zavala>> It's a medical mystery that has sparked an intense controversy among doctors, researchers and patients. It's called Morgellon's Disease and the symptoms are not pretty. Patients report skin lesions that won't heal along with biting and stinging sensations. But many of the patients also suffer from mental disorders and that has caused many doctors to believe that Morgellon's is all in their heads. Sam Louie takes a closer look at this medical mystery. A word of warning. The following story contains some graphic images. Sam Louie>> What is it? Gail Anderson>> This is part of a fiber. Sam Louie>> It's a life of constant scrutiny, suffering and confusion. Gail Anderson of Orange County is among more than six thousand people nationwide purportedly suffering from a controversial health condition known as Morgellon's. The symptoms vary, everything from fibers growing out of their bodies -- Gail Anderson>> I have blue fibers. If you look closely at these, there are blue fibers right around here. Sam Louie>> -- to mashed-up fingernails -- Gail Anderson>> There have been some red fibers coming from each finger from the cuticle on in and then splitting the nail open at the bottom. Sam Louie>> -- to a crawling sensation caused by an internal parasite. Gail Anderson>> This is my belly button. It used to be an innie and, as you can see, it's protruding out. It's just growing and growing. Sam Louie>> Doctors consider this a herniated navel, but Gail believes this, along with all of her other symptoms, point to the mysterious Morgellon's Disease. Gail Anderson>> It hurts. I don't know what it is, but I know it has something to do with Morgellon's. It has to. Sam Louie>> Gail believes it all started six years ago when thick patches of hair began growing on her arms and back. Gail Anderson>> It was almost like being a Sasquatch. I felt absolutely like I was a freak. I was becoming a freak. I didn't know what was going on with me. Sam Louie>> Lesions and sores are other common physical symptoms. For Gail, the lesions on her face made life a living hell. Gail Anderson>> My whole left side of my face has started with two red dots, red, red, red, red, until they opened up into these blotchy, huge, open wounds. It was at a point that I was afraid to stand in line at a grocery store. I didn't want to go out in public. I became a recluse. I thought I was going to infect everybody. I didn't know if it was contagious, if it was infectious. Sam Louie>> Although Gail swears she has Morgellon's, others are skeptical. In fact, there's a major debate between patients and doctors on whether Morgellon's is a physical affliction or a psychological disorder. Dr. David Sawcer is among those who believe it's psychosomatic. Dr. David Sawcer>> So if you think of all of the people who might come to see me with those clusters of symptoms, pretty much everyone has a psychological component. Sam Louie>> Sawcer is an Assistant Professor of Dermatology at USC. He believes this new disease is actually an age-old problem. Dr. David Sawcer>> I don't actually think that this is a disease as much as a mystery. The idea of this cluster of symptoms associated with a particular problem is actually quite an old and well-documented one. Sam Louie>> The reason for the recent upsurge? The internet. It's become an online gathering place for victims to share their stories. Dr. David Sawcer>> These people with the problem have gained a voice. They've gained a voice, they've gained attention and, on the whole, that's been the internet so that they've found a way to vent their feelings about this association amongst people with a similar situation to bear. Sam Louie>> Sawcer doesn't call the condition Morgellon's. He and many others call it delusional parasitosis. In plain english, it's a form of psychosis where sufferers have delusions that they're infested with parasites. Gail Anderson>> And I'm not delusional or paranoid. I know there is because it itches and it hurts. It hurts so bad. Sam Louie>> Back in Orange County, Gail Anderson is all too familiar with how the naysayers explain her symptoms. Gail Anderson>> They're created in your mind like the self-mutilation type of theory. You know, these are only appearing because you want them to or, you know, you're making this up or we don't know what you do at night. You probably crawl around on the floor. I've known my body ever since I was born and they just cannot tell me that it's any other way than what it is, and what it is is Morgellon's. Sam Louie>> Doctors who believed her condition was psychological prescribed antidepressants and antipsychotic medications. Gail has been taking them for the past year, but says they have little effect on her physical ailments. Gail, how do you feel when the medical community rejects Morgellon's? Gail Anderson>> Betrayed, betrayed by everyone. Humiliated. I walked around that hospital thinking, you know, with a stigma. Okay, in my head, like "Oh, here comes that. . . Here she comes. Where's the security guard?" I felt that it was that bad. Sam Louie>> So how do you explain all the strange physical symptoms found on these bodies? Dr. David Sawcer>> That condition has a name. It's called nodular prurigo and it means itchy bumps. The bumps are itchy, so you scratch them and that makes the bumps, so you've got yourself a nice little circle which is self-perpetuating. You need do nothing but keep scratching those bumps. Whether you do or you don't have an infestation, whether you do or you don't have a symptom, it will just keep going all by itself. Sam Louie>> And how will this controversy be resolved? Dr. Jonathan Fielding is the Director of Public Health for Los Angeles County. Dr. Jonathan Fielding>> There's no evidence that I've seen in the limited literature that's available that this is a contagious disease. You don't have outbreaks of everybody in the school classroom or everybody in the office or everybody in the family. We don't have the signs that would lead you to suspect this is a contagious disease. Sam Louie>> But the debate itself is enough of a concern that the Centers for Disease Control is stepping in. Dr. Jonathan Fielding>> Whenever you have a group of people that are really having severe symptoms that are affecting their lives, it's important to try and understand what this is. Is it a single disease? Is it a group of diseases? Is it simply a set of symptoms of a variety of diseases? We really don't know the answer to that. So I think anytime there's a problem that we can better understand, we want to do that. Sam Louie>> Fielding says the CDC will bring in a host of specialists to Los Angeles sometime next year to fully investigate Morgellon's. Los Angeles was selected because southern California has a large number of people claiming to have Morgellon's. Dr. Jonathan Fielding>> So they have pathologists on the team, infectious disease experts, mental health professionals, environmental health experts, anesthetists, other physicians, so they're really taking a very comprehensive view and I think that's very heartening because that's really what needs to be done here to better understand it. Sam Louie>> For Gail Anderson, her feeling of betrayal has now turned to vindication, knowing the CDC will be doing a full investigation. Gail Anderson>> Oh, it's absolutely fantastic because somebody that important, part of the government, I mean, obviously they realize that there is something really going on here. Sam Louie>> Gail would like to get better so she can live a more normal life and, at the very least, a life where she doesn't feel like an outcast and where her plight is taken seriously. I'm Sam Louie for Life and Times. Announcer>> Kcet.org is the place to look for the very latest on Life and Times. You'll find previews of upcoming stories, plus transcripts and audio of past episodes and links to some of our most interesting features. Just go to kcet.org, scroll down the page and click on "Life and Times". Val Zavala>> This year, nearly three million people worldwide will die of AIDS. That's the highest number yet in any year. And another forty million are living with the virus. But those numbers don't tell the story of AIDS like one individual can. In this case, Dalee Henderson, a successful and popular Hollywood hairdresser who lived with the virus for eighteen years. Dalee Henderson>> "It's been difficult, not spiritually, but sometimes it's been hard to be alone." Val Zavala>> Now a documentary about Dalee Henderson has been released. It's called "White Shadows". It was a labor of love by the crew and the director. I spoke with its director, Mialyn Hanna. How did you meet him? Mialyn Hanna>> You know, I met him actually walking down on a walker down his driveway to a meeting, to a gathering around like a special teacher who's also an AIDS activist. He just walked towards me on his walker and I just fell in love with him immediately. I felt like I'd known him forever. Val Zavala>> Dalee Henderson grew up in a big conservative family in the south. His sister discovered he was gay and revealed it to the entire family during a Thanksgiving dinner. Dalee Henderson>> "Announced to my family that I was a homosexual. A fagot is how she put it. My dad told me to get up from the table, that he did not wish to eat with me nor spend another night with me in his house and that he really didn't care what happened to me, but that I was no longer his son." Mialyn Hanna>> Eventually, his sister came back from California and told him to come to California. She said, you know, that's the place for you to go. So he came and he started beauty school and very quickly became known as being a genius hair stylist as well, actually. So eventually, he was doing the hair of Diana Ross, of Stevie Wonder, of Denzel Washington, Pauletta Washington, of the whole array of celebrities. In 1986, he was working at his hair salon and he got a call from the Oprah Show. Dalee Henderson>> "I picked the phone up and I said hello. They said, "Yes, this is so and so from the Oprah Winfrey Show" and I said, "You know what? Stop playing with me" and hung up the phone. Then they called back, the front desk, and said, "No, Dalee, this is the Oprah Winfrey Show on the phone" and I said, "You know what? I'm tired of this." I picked up the phone and said, "Yeah, yeah, yeah" and hung up the phone again. They called back and they said, "Listen, we really are from the Oprah Winfrey Show" and I said, "Oh, yeah, right." So I hung up again. About the fourth time the phone rang, the voice on the end of the phone, I said "Yes?" The voice said, "This is Oprah. This is not the Oprah Winfrey Show. This is Oprah and don't hang up this phone." I said, "Oh, okay." She said, "I hear that your God and that you do all this hair." Oprah Winfrey>> "Our next guest has done Diana Ross and Billy Dee Williams and everybody who's black and famous except me (laughter). I'm only kidding. Please welcome Dalee Henderson to the show. Always welcome." Mialyn Hanna>> There was a time when he felt really strange in his body. What he said, again, is that he felt this earthquake in his body and all these people around him died, so he felt that it was time for him to get this AIDS test, even though he was sure he wasn't going to get AIDS ever. Dalee Henderson>> "Me and my arrogance, thinking in my heart that I'm such a good person. I'm God's child and such a happy person that this cannot and will not happen to me. Then the doctor came in and said, "Well, Dalee, what are we going to do with you?" I said, "Well, let me go home." He said, "Well, you have the virus." Mialyn Hanna>> At the time when he got AIDS, the only drug that was there was ADT. Doctors didn't know about ADT, how much to give them. It just came from the big companies and they just gave them ADT. Pretty shortly thereafter, they feel worse and die actually. So at the time when he was diagnosed with AIDS, he decided not to take the drugs for that reason. Dr. Dale Propukek>> "You know, it was very challenging to me because, when I first met him, my first response was, well, get on the medications, idiot. You know, like hello, you know. I mean, as I listened to him, I began to understand that that just was not what was right for him. Dalee Henderson>> "And he actually sat me down and sat down with me and asked me what did I want to do? No doctor had ever asked me that before. He asked me how I wanted to do this and I told him that I didn't want to take so many drugs. To be honest with you, I want to take as few drugs as possible and get the most out of it. I want you to know that I want my spirit to be recognized. I want my desire to live, my connection, my spirit, my connection with God to be recognized and I want it to be recognized that I am not coming here looking for a miracle. The miracle is already -- I am the miracle." Mialyn Hanna>> You know, he would get up and, if I wasn't there, he would call me up or he would call his friends up and just tell them, "My God, I just heard these birds. They were just amazing, like a tabernacle choir. Did you hear them? I just want to tell you life's incredible, wonderful. Enjoy it." I can't do it like he does. Val Zavala>> In the fall of 2005 after living with AIDS for eighteen years, Dalee Henderson died. Mialyn Hanna>> I think the biggest part for the gay community is to be the inspiration of being who you are, no matter what. Be proud of who you are and enjoy all of life. If you're gay, you're gay. If you're straight, if you have a disease, don't become the disease. Be the person that you are and enjoy life. Dalee Henderson>> "I literally feel -- on my skin, I feel like bubbles popping. You know, like bubbles of light popping against my skin. For me, those are angels kissing me." Announcer>> To send a comment or a question to our program, you can reach us by mail at this address: Life and Times 4401 Sunset Blvd. Los Angeles, California 90027 You can also call our viewer comment line (323) 953-5555) or contact us the fast way by e-mail at kcet.org. Val Zavala>> It was a painful chapter in African-American history. Turn-of-the-century minstrel shows where whites in blackface would portray blacks in a less than positive light. Well, now two young playwrights are giving us a different take on these minstrel shows. Meet Aaron White and Jason White. They're not related, but they share an intense interest in how black stereotypes developed. [Film Clip] Jason White>> This piece is a satire. What this piece seeks to do is, it's a minstrel show that's teaching you the history of minstrelsy, but as a minstrel show. [Film Clip] Val Zavala>> After several years of research, Jason wrote a play, a condensed history of blackface minstrelsy. Jason White>> We're actually cataloging a hundred fifty years of minstrelsy in one hour. [Film Clip] Aaron White>> You see dance a lot. You see dance in the scene and then it goes from the dance into the two characters, Sambo and Zipcoon. So you'll see an actual conversation with actual minstrel characters. [Film Clip] Aaron White>> At first, it was made just for white audiences to laugh at the imitation of black people. So we want that to come across. We want you to laugh. We want you to experience it like they experienced it in the 1800s. [Film Clip] Val Zavala>> These two CalArts graduates realized that reviving a controversial form of entertainment may not sit well with some audiences. Aaron White>> Once again, we're doing a minstrel show which is how they did it in the 1800s and how it was done before when people put on burnt cork and actually performed, imitating black culture. So we're actually doing that, but we're teaching you about minstrelsy at the same time, meaning that's what makes it so interesting while I see people watching it because we want them to get a feel of how it was in the day. For us to do it as this, our faces now, it's sort of like you don't get the full impact of how it was then when it was just for white audiences. Jason White>> When you put on blackface, there's a lot that goes with that. It's something that is not to be played with. [Film Clip] Val Zavala>> The play draws from actual minstrel show skits, but it goes further, drawing connections between turn-of-the-century stereotypes like The Mammy -- [Film Clip] Val Zavala>> Uncle Tom -- [Film Clip] Val Zavala>> Sambo -- [Film Clip] Val Zavala>> And makes connections, say, between the group then and today's black gangstas. [Film Clip] Jason White>> Now we see these. We see variations of this every single day, particularly within music and in entertainment and on television and even on billboards and in videogames and such. But once again, it's that connection. I believe that, somewhere along the line, we lost that connection of where that image has come from, so this piece, "The Dance", seeks to tell that story. [Film Clip] Val Zavala>> So how have audiences, especially young people, reacted to these blackface characters? Aaron White>> It's a hilarious show. It is a funny show, but it's not funny at the end of the day. There's a point where the laughter stops and you hear it in the show which is amazing. It's a point where all the -- oh, wow. Val Zavala>> The title, "The Dance", refers to something much more than fancy footwork. It refers to something we must all ask ourselves. Aaron White>> It takes off the blackface makeup and it puts on what you wake up in the morning and put on. When you go to work, are you going to work for yourself or are you going to work because it's something you just have to do? At the end of the day, it brings up the question of who are you dancing for? You can go sixty years of your life dancing for someone else, meaning performing for someone else, meaning trying to impress someone else, but at the end of the day, who are you truly dancing for? [Film Clip] Jason White>> You walk away changed individually because you're able to see the truth behind the image and compare that to your own dance. Aaron White>> Own dance. Jason White>> My dance is not yours and my dance is not his. He has his own. You know what I mean? Aaron White>> That's right. Jason White>> So it's an awakening of what the dance is for you. [Film Clip] Aaron White>> If you don't know the past, it's one of those situations where you keep going around in a circle. I know, for the younger generations, we've seen these images. We've seen these images in certain cartoon shows and things like that in growing up. But you look at the youth today who have no idea that this even existed, so it's like bringing the old ghosts and old demons to the present and witnessing it for what it is. And through that, you just have an awareness. I'm not saying it is the answer. Blackface is not the answer to go back into that or anything. That is not the answer, but to be aware that it happened. Jason White>> That's right. Aaron White>> To accept that it has happened and to use that as a vehicle to push forward. [Film Clip] Val Zavala>> And that's our program. I'm Val Zavala. For everyone at Life and Times, thanks for watching. We'll see you next time. Announcer>> Life and Times was made possible through the generous support of the L.K. Whittier Foundation dedicated to improving the quality of life by supporting innovative endeavors in the fields of medicine, health, science and education. And by a generous grant from Jim and Anne Rothenberg. Sponsored in part by:  | |
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