I have had a long and successful career as a burlesque performer, producer and instructor. (You may know me as “Butthoven” from my viral video where I bounce my butt cheeks to Beethoven’s Fifth Symphony. The response to that video was a surprise. Who knew people liked butts in bowties so much?)
In the business, my tagline is “The Most Naked Woman.” This definitely refers to my state of undress, but it also has a deeper meaning. I have always strived to put my true self on the stage.
Whether my acts are comical, graceful, serious or sexually charged, I am presenting a side of myself. To me, being “the most naked” means exposing my vulnerabilities and pushing myself to go beyond my fear.
In living up to my tagline, I recently “came out” in a video that I posted to YouTube about my struggle with alopecia areata, an autoimmune disease where the body attacks hair follicles.
In the past year and a half, I’d taken to wearing wigs on stage and wraps and turbans off stage. I didn’t want anyone to see what I was going through. I kept my disease and hair loss from friends and some family ― and I definitely kept it from fans. When I was backstage with a cast, I would go into another room to put on my wig because I just couldn’t show them what I really looked like. It was hard for me to be the girl who was losing her hair and also a glamour girl of burlesque.
Ultimately, I decided that I couldn’t live this lie anymore. I had to be honest with myself and trust that my fans would be there no matter what.
Alopecia areata can attack the hair on your head, eyebrows, eyelashes and body. For me, it attacks the hair on my head, brows and lashes. Rest assured, though, I have always had full hair on my upper lip. Can we not be selective about this hair loss?
I have had this disease since I was 6 years old. No one knows why this happens. Autoimmunity is still a mystery to doctors, but we do know there are triggers, like traumatic events, stress, compromised gut health, allergies, mold, etc. I was so young when it started, I mostly remember my mom being upset and counting the hairs on my pillow every morning.
Going into first grade, I was fitted for a wig. I don’t know what it cost, but I’m sure it was substantial. I wore it on the first day of school when we played a rousing game of “duck, duck, goose.” As I was running and giggling, my wig flew off and all the kids laughed at me. I came home that day and told my mom that I would never wear a wig again.
I went to school from that day forward without a wig. Some kids were great, but others were really hurtful. They made fun of me or took the bows off my head that I deliberately put there to cover a spot. Unfortunately, those are the things that stick with you.
From there, my hair grew back. It was long, black and gorgeous! I had fun crimping it and braiding it and spraying the hell out of it so I could get the perfect bangs. You know the ones I’m talking about. But then, in 7th grade, it all happened again. This time, I was VERY self aware. I went through my formative years with just a few patches of hair and missing brows and lashes. To say it was hard is an understatement.
There were some days where I wouldn’t leave the house because I couldn’t comb my hair just right. Swim class was panic-inducing in high school, because getting my hair wet would cause it to separate, and everyone would see my bald spots. I would also try to sit in the back of the class so no one could look at the back of my head. Yes, the pain runs deep.
In those years, I became obsessed with beauty. What made someone beautiful? Was I beautiful? Could I be beautiful? I would pose in front of the mirror and try to do things I thought were beautiful. I would sit very close to the mirror and look in my eyes and try to make sexy faces. I wanted to be beautiful, and I wanted other people to think I was, too.
I had friends. Good friends. But boys were not in the picture. I mean, what 14-year-old boy wants to have a bald girlfriend? I thought to myself that if they just looked twice, they wouldn’t look away. That motto is something I still hold close to my heart.
Then, I started dancing. This is where I found my beauty. I took my first class at 15. Dancing was my everything. It still is. It is where I feel my most comfortable and my most authentic self. With dancing, I blossomed.
I continued on to college with a nice head of hair and a very sassy cut. I was feeling myself, and boys were in the picture! After college (I have a degree in finance), I began my burlesque career. THAT was where I really bloomed. I had found it! All the years of posing in front of the mirror and making sexy faces had a point! See ya, finance!
Throughout my burlesque career, I’ve had issues with bald spots here and there. I would go in twice a year and get them treated with a painful steroid injection in the scalp. Seriously, no fun.
The whole time, I was still hiding. I would style my hair in ways where you couldn’t see the spots, and I would color in my scalp with eye shadow when I would perform. I was still nervous that someone would find out. Would my career be ruined? What would happen if people knew?
Well, now you know. In the past three and a half years, I have battled this most recent round as a successful burlesque star, and it has been devastating. To see my hair in the sink, in the drain, in the trash, in the comb was crippling. I would cry and cry, and then I would have to put on makeup and do a show. The conflict was debilitating.
I lost more than my hair. I lost myself. My husband lost his wife. I was a shell of the person I was supposed to be. No one could help me. I was getting shots in my scalp every month for two years. It just got worse. I decided to pursue alternative treatments like yoga, acupuncture and the AIP diet (autoimmune paleo protocol). The diet change was so hard, especially with all the travel I do, and my love for all things cheesy, starchy and bourbon-y.
Eventually, everything I did was about my hair. How could I get it to stop falling out? How much fall-out was there today? Was it less than yesterday? Showering was a make-or-break experience, as I counted the hairs going down the drain. It was day after day of dashed hopes.
Hiding the real you is very painful, and I know many people can understand that. I decided to embrace it and shave my head. I began walking around without a wrap or turban on my head. And then, I felt it was time to really share my story with the world. I know I’m not the only one struggling in life, and it’s good to know from time to time that you are not alone.
Alopecia has shaped me and my beliefs. Everything that I teach in my burlesque classes comes from this place of understanding. I think women are beautiful, and it is my job to help them see that. I want to empower women and empower my audience. But in empowering others, I forgot to empower myself. I had to dig deep and practice what I preach. I had to see the beauty in myself. I had to look twice.
I feel vulnerable sharing this with the world, but it’s also exhilarating! I can finally be me again. I am finding strength in my vulnerability, and that is powerful.
I believe that beauty is truth. Beauty is not makeup or hair or clothes. Those are skills. Beauty is real, vulnerable and honest. I am not saying that this is easy. I will never say that. It is hard, and you should respect the process. What I will say is that the risks are worth the reward.
We each have our own truth, and I want to encourage you to live yours today. You are not alone.