Interview with LeslieAnn Butler Today, Tyler R. Tichelaar of Reader Views is pleased to interview LeslieAnn Butler, who is here to talk about her new book, “If Your Hair Falls Out, Keep Dancing! How to Cope with Alopecia Areata in a Hair-Obsessed World.” LeslieAnn has been involved in art, writing and other creative endeavors since childhood. She graduated from the University of Oregon with a bachelor’s degree in Theater Arts and a minor in Fine Arts. LeslieAnn has written and published poetry, articles and two books. Her first book, “The Dream Road,” won the National Visionary Award in 1998. In addition, she is a talented artist. Her paintings are held in public, private, and corporate collections around the United States and Europe, including in the collections of Michael Jackson and George Bush. She has been featured in numerous solo and group art exhibitions, and she is a member in several art organizations. She is here today to talk about her second book, “If Your Hair Falls Out, Keep Dancing!,” which features not only her writing but also her art work. Tyler: Welcome, LeslieAnn. Boy, do I need to talk to you. My hair is falling out! I understand, however, that your book is for women specifically, so will you start by defining for us just what alopecia areata is?
Alopecia areata is the umbrella term used to describe patchy hair loss, total scalp hair loss (alopecia totalis), and complete scalp, facial and body hair loss (alopecia universalis). It occurs in males and females of all ages, but onset most often begins in childhood. It’s fairly common. Did you know that nearly five million people in the United States have alopecia areata? That’s about the same number of people as have psoriasis and while you hear about psoriasis a lot, you don’t often hear much about alopecia areata. Tyler: LeslieAnn, what is the cause of alopecia areata and how does it differ from male pattern baldness? LeslieAnn: Unlike male pattern baldness, “aa” is an auto-immune disorder—like arthritis, eczema, or asthma. The body’s T-cells identify hair follicle cells as invaders and attack them. (How come our immune system is so dumb?) Normal scalp hair processes through three phases: growth, degeneration, and resting (when the hair falls out). This process is staggered on the scalp. With alopecia areata, all the hair in one section will enter the degeneration phase at the same time, resulting in patchy bald spots or total baldness. The follicles are not destroyed—just dormant. Typically, the first symptom is a little round bald spot, about the size of a quarter. Most of the time, it grows back. If you’re lucky, that’s the end of it! Since I’ve had this, I’m amazed at the large number of women I know who have had alopecia temporarily—after a few weeks it goes away, never to bother them again. Others have patchy spots that come and go. For me and a number of other women, alopecia areata has progressed over the years. At first it was just a small spot, which went away. Later the spots became bigger. Some stayed and some filled in. About fourteen years after my first episode with this condition, all my hair fell out, including eyelashes and eyebrows. As far as the cause, it’s not known why alopecia starts, or whether it comes from an external source, like a virus, or internally. Stress does not cause alopecia areata; research points to genetics. In one out of five cases of alopecia, someone else in the family has it. Tyler: Are there any actions women can take to prevent or slow down their hair loss? LeslieAnn: Yes, there are some things that can help. In my book I go into detail about the medical treatments that are available today. One thing I didn’t include, because it’s so new and research is still being done, is Lumigan, which is used to treat glaucoma. Doctors discovered that the drops encouraged the growth of eyelashes. It seems to help people with alopecia keep the eyelashes they have, and restore bald spots in their lashes. Results aren’t too encouraging for people like me who have had universalis for so many years. Lumigan seems to work best on people who still have some eyelashes. Tyler: Your book does not detail how to cure alopecia areata, but it is written more as a survivors’ guide for women. What are some of the tips you provide to help women look their best? LeslieAnn: The reason I didn’t write about a cure is because there is none at this time; however, research is being done as we speak! So we have to make the best of our situation until that time arrives. Hair has always been a symbol of femininity, beauty and sexuality. You can’t pick up a women’s magazine without seeing dozens of ads for hair products, and articles that talk about how to make your hair more beautiful, what hair styles and colors the stars are wearing, on and on. So when a woman loses her hair, it can be the most devastating time in her life. I give advice about how to find good wigs, how to use hair extensions, how to use makeup and other helpful products so it looks like you have eyebrows and eyelashes. And it’s very helpful because these women need to know what resources they have. But the most important part of my book is attitude. Hair is only an external symbol. When a woman feels good about herself, when she is confident and knows she is sexy, the hair part doesn’t matter. Tyler: Tell us about that attitude. You have a very positive one and use humor a lot. How does one maintain a positive or mirthful attitude while suffering from hair loss, and as you said, possibly a sort of feminine identity crisis? LeslieAnn: As far as attitude goes, the most important message in my book is this: Don’t let hair loss keep you from living! Keep dancing! Keep doing your sports, go out with your friends, play your music, paint your pictures, love those closest to you or find someone whom you can give your love to. Enjoy your life. It’s normal to grieve, but you can emerge from that process a stronger person. You may find you have received some wonderful gifts from your experience, gifts that you can share with others. You might even be the one to find a cure. And remember that you’re not alone. Reach out to the many, many resources out there! When it comes to humor, at the time you are diagnosed, it’s certainly not very funny. But as you navigate the waters of this condition, it helps to look at things differently. One thing that keeps a lot of aa women from going off the deep end, is that “things could be a whole lot worse.” It isn’t a disease, and it won’t hurt you or kill you (physically, anyway). And your emotional outlook is something you can choose. Besides the difficulties, what I wanted to do in this book is show the lighter side of hair loss. Heaven knows, we can all use a laugh! This is one of the things that makes “If Your Hair Falls Out, Keep Dancing!” different from any other book out there. Tyler: What are some of the emotional resources and suggestions you provide to women suffering hair loss? LeslieAnn: As I mentioned earlier, there are wonderful resources out there today. Places to go, people to talk to, and things to do that I didn’t have when my alopecia started. The first thing I tell women to do is to go to the National Alopecia Areata website, www.naaf.org. There’s information, a list of support groups, a newsletter signup, and so much more. They have a conference each year that is attended by hundreds and hundreds of “alopecians” and their families. Another resource that I have recently discovered is a social networking web site called “Alopecia World.” It’s like Facebook or Myspace, but for people with alopecia. And “If Your Hair Falls Out, Keep Dancing!” was written to be a source of support. I wish I had been able to find a book like this when I was going through various hair loss crises. There were only dry medical books. “Keep Dancing!” is like a good friend who wants to, and can, help – and who’s funny! One of my readers said people were staring at her as she read the book while waiting for an appointment, because she was giggling so much. Tyler: LeslieAnn, would you share with us some of that humor or a funny story from the book? LeslieAnn: Okay. Here are a couple of incidents: A guy I had dated a couple of times was getting close to the point of touching the back of my neck—and would soon be running his fingers through my fake hair. So very matter-of-factly, I told him about the alopecia areata. He stood there in a state of shock. His eyes were huge. You’d think I’d told him I had typhoid. Then he began to stutter “uh, uh, uh, uh,” as he backed up. Unfortunately, behind him was a short flight of stairs. He emitted one last “UH!” as he dropped. I am not sure if he hurt himself or not, because I think that even with a broken leg, he would have found a way to make it out the door. Then there was the woman who was mowing her lawn. As she guided the mower under a tree, one of the branches caught her hair. There she was, au naturel, her hair hanging from the tree. She let out a yelp and released the lawnmower, which continued on its own, heading straight toward a guy walking down the street. She didn’t know which to go after, her wig or the lawnmower. Fortunately, the guy grabbed the mower, and she grabbed her hair. Tyler: Who, besides women who are losing their hair, would benefit from reading this book? For example, I imagine people who lose their hair due to cancer treatments might find it useful. LeslieAnn: Yes! And lots more. Women with male pattern baldness, women who are undergoing chemotherapy (there’s an entire chapter on that), women who have traction alopecia and women with Trichotillomania, (a compulsive pulling out of your own hair). It’s also full of great information for girls with “aa” and their parents. Often, it’s harder for the parents than it is for the kids! As well, the book is great for other family members of people with aa, like, grandparents, aunts and uncles, siblings, and friends, too. Anyone who wants to give support and desires a better understanding of the condition. Tyler: So, if a woman wants a good wig, what should she do? LeslieAnn: There are a lot of resources for wigs now. So much more than when I had to start looking. You can order wigs online—there are hundreds of styles in synthetic (a good, inexpensive choice if you have temporary hair loss from chemotherapy). If you want a human hair wig, you can also get those online. But for a custom fit, it’s best to go to a professional who can measure your head precisely. In my book I have a lot of information about wigs: what to look for, the different types, how to care for them, even how to alter them if you need to. I also give contact information for several reputable companies and individuals who handle wigs. Tyler: I’m curious about trichotillomania—can you tell us a little bit more about it? LeslieAnn: Trichotillomania (pronounced trick-o-till-o-mania) is a psychological disorder characterized by an inability to resist the impulse to pull out your hair. The condition often begins in childhood, but can continue for decades—sometimes for a lifetime. Some people with trichotillomania pull out just their eyelashes or eyebrows; others focus on removing the hairs of their head, beard, pubic area, or arms and legs. Some pull out hair from all parts of their body. Between six and eight million people have this condition. Tyler: LeslieAnn, was there a specific incident or moment that made you decide to write “If Your Hair Falls Out, Keep Dancing!”? LeslieAnn: A few years ago I became a national spokesperson for the National Alopecia Areata Foundation. At that time I had just finished creating a 36” x 48” painting entitled “Bald Boogie” that I donated to the NAAF, and which resides in their headquarters in San Rafael, California. From that painting, prints were made, and people can purchase them on the NAAF web site for a minimum $100 donation. From that exposure, a lot of women began asking my advice about many hair-loss related subjects. As I offered many “words of wisdom” that I had been amassing from over 30 years of having aa, I began to see how beneficial it would be if I wrote a book so that ALL the women who needed help could get it. And at the same time, give support and encouragement, too. Tyler: LeslieAnn, I mentioned in your introduction that you are also a talented painter. You included several expressive paintings in “If Your Hair Falls Out, Keep Dancing.” Will you tell us a little about the paintings for this book and why you chose to include paintings? LeslieAnn: I put a lot of love into this book. My goal is to have it get into the hands of every single person who needs support, and who needs to hear the message that you can live with “aa” and celebrate your life, go for your dreams, marry, have children, be successful and happy. I wanted “If Your Hair Falls Out, Keep Dancing!” to be a book that people would enjoy reading, not be afraid to have on their coffee table, give as a gift, use in a support group, read on an airplane. So I made sure it was a bright, lively and uplifting, book, both in the way it was written and the colors and emotions of the paintings. Tyler: You have been a writer and a painter for many years. Could you tell us a little about what you enjoy about each medium, and do you find similarities between them? Do you prefer one to the other? LeslieAnn: Hmm! Okay. The first thing that comes to mind is that writing and painting use different parts of your brain. Which is a good thing! Hopefully my brain cells will keep on chugging for a long, long time if I keep this up! One similarity is that they both come from inspiration and the desire to reach out to others and present them with the gift of what you have created. For example, I didn’t have a choice about writing this book. It was something that I was “told” to do in no uncertain terms! I guess you could say I was divinely inspired. And when the book was ready (which took a few years), everything fell into place for it to go out in the world. Painting is something I find extremely relaxing. It’s like I slip into another dimension. It is certainly more messy (you should see my studio!) (and my clothes!), but working with the colors, the textures, and the images that come to life are fascinating. Another similarity is that I get very excited anticipating what the finished product is going to look like! I never know until the end. And I never know when the end will come! I create as I go, and am wonderfully surprised to find myself with a piece of art or writing that I say, “It’s done.” Tyler: LeslieAnn, would you tell us a little about your first book “The Dream Road” and also whether you have plans to write any more books? LeslieAnn: “The Dream Road” is a beautiful and amazing book. It didn’t start out to be a book at all. A friend of mine, artist Robert Bissell, wanted me to do some descriptions of his paintings for a special show that was coming up. I looked at the twelve pieces he wanted me to describe, and as I started to write, stories started flooding my head. I couldn’t stop writing. I talked to Robert and suggested we make a book, showing him what I had done. “The Dream Road” was born. Unfortunately, I had to edit down my stories quite a bit to fit the book’s size restriction, but they still hold their own. “The Dream Road” is for children five and up. The paintings are beautiful, and it’s hard cover. There are twelve tales of questing, loss, and reconciliation with a spiritual bent. For example, a baby bear embarks on an ethereal “Dream Road” and circumvents a series of illusory obstacles; feuding Black and Purple ants make peace over an apple; a badger discovers that a “Demon Crow” may not be so demonic after all. I think each story has a moral, similar to the children’s stories I grew up with and loved. There are a few still available from me ($14.95 plus shipping, go on my commissions web site at www.leslieannbutler.com, or email me at labartist@aol.com), or go to Robert Bissell’s web site, www.robertbissell.com. As far as writing any more books, I don’t have any plans to do that right now; but I am sure that if a book wants to be written by me, it will let me know! Tyler: Thank you, LeslieAnn, for joining me today. Before we go would you tell us about your website and what additional information our readers can find there about “If Your Hair Falls Out, Keep Dancing! How to Cope with Alopecia Areata in a Hair-Obsessed World”? LeslieAnn: I have three web sites! The one for “If Your Hair Falls Out, Keep Dancing!” is www.leslieannbutler.npauthors.com, and right now you can order the book from that site at a 30% discount. It will also tell you a little bit about why I wrote the book, and some of my history with alopecia areata. Then, I have two painting web sites, one for my gallery work (www.LAButlerArtist.com), which showcases several of my series, and includes some of the paintings that are in “If Your Hair Falls Out, Keep Dancing!”; then I have a web site for my commissions work (www.leslieannbutler.com). And by the way, Tyler, I think your hair looks great! TTyler: Thanks, LeslieAnn. You’re the expert so I’ll be sure to let people know you think so. Thank you so much for joining me today. I hope you keep dancing and inspiring people with both your writing and painting. LeslieAnn: Thank you! Listen to Interview on Inside Scoop Live
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