Support us with Kachingle!
January 23, 2014 | 12:00 a.m. CST
You might not notice Madelyn Munsell, if you weren’t looking for her, as she walks on stage at the Missouri Theatre with the rest of the Show-Me Opera chorus and starts to sing. Her outfit is polite, conservative, and like those of her stage-mates, more costume than choice. Long, light-brown hair flows past her shoulders, tinting red under the hot stage lights. Fellow singers surround her on all sides.
Munsell’s voice meshes with the others as the chorus belts out the finale to Candide, a Voltaire-based opera, and the audience’s focus widens to appreciate the piece for its whole rather than its parts. That’s fine with Munsell. It’s not all the time she gets to blend in.
The song ends to applause and the performers retreat behind the curtain. Shortly after, perhaps when Munsell gets in her car, perhaps when she arrives home, she will release the silicone straps attaching that long, light-brown hair to her head. She will spend the rest of the day the way she’s spent most of her life — without hair.
“I have six,” Munsell says, tilting her head to show the thick strands of dark-brown hair cascading down the side of her neck. “This one is by far the most expensive.”
The wig is full, and it sweeps across her forehead and past her shoulders, a total of 14 inches. It cost $4,000 and conceals the evidence of her alopecia areata universalis, her completely hairless body. Several forms of alopecia have been identified by medical professionals, ranging from male-pattern baldness to Munsell’s condition, which involves total hair loss.
Male-pattern baldness affects two-thirds of American men by age 35. More extreme types of alopecia affect more than 4.7 million people in the United States alone, according to the National Alopecia Areata Foundation. Munsell’s type programs white blood cells to rapidly attack and kill all the hair on the body. Treatment can be painful and inconsistent, and onset most often begins in childhood, which can be psychologically devastating. No cure is known.
“We didn’t know what was going on,” says her father, Mark Munsell. “For us it was just really confusing. Suddenly we thought we were doing something wrong.”
Was the hair loss a reaction to something they fed her? Was it something more serious? Extreme hair loss can be a symptom of various diseases. Lupus crossed their minds.
“We took her to a doctor, and he was sort of perplexed,” her father remembers. “But he recommended a dermatologist.”
Within a minute of their first meeting with the dermatologist, she pointed to the toddler and said, “I know exactly what she has.”
Six weeks after that first clump fell out, Munsell lost all her hair. Her parents made sure to store one of the last locks as a keepsake. They rarely look at it.
“If there’s something you know is going to be gone forever, you archive it,” her father says. “She doesn’t associate with it, only we do.”
When Munsell was 3, she underwent a treatment in which acid was poured on her head. The thinking was that the white blood cells would attack the burns and ignore her hair cells. It worked to some extent; her hair grew back in patches.
The body is a fast learner, but it isn’t easily tricked into masking searing pain. When the acid hit her scalp, Munsell cried so much her parents abandoned the treatment.
School brought more tears. Munsell was bullied from the day she entered kindergarten until sixth grade. The little boys in her class called her “baldie” — to this day, that’s her least favorite word. Even worse, “bald bitch” was the moniker her older classmates used. Sometimes she would snap back. Once, in kindergarten, she stood up to one of her bullies, and he pushed her down. Her head was severely cut when it hit the floor. Soon, emergency room doctors were stitching her up.
“Every couple of years something like that happened,” Mark Munsell says.
She found her confidence at home in Waterloo, Illinois, from her parent’s encouragement (“You don’t need to impress anyone,” Mark would say. “You be you. If somebody has a problem with it, sucks for them.”) and in music. The daughter of a part-time rock band member and a choir director, Munsell memorized the songs to the movie Pocahontas at age 2, and after performing them in the living room, never stopped searching for a stage.
“Some little kids dance and sing, but some do it incessantly and exaggeratedly,” her father says.
Munsell sang; she joined her high school drum line; she learned guitar. When a 2012 tornado devastated the hometown of her friends in Harrisburg, Ill., she wrote a song called “Water Street” and performed it on KSDK Channel 5 News in St. Louis.
“She is a very gifted singer,” says Christine Seitz, an associate professor of music at MU who also serves as the Show-Me Opera director and Munsell’s private voice instructor. “She has a very lovely voice.”
She rarely wears hair now.
The last time she wore it consistently was her first year of high school. Her father was overseas in Iraq on government assignment. As the school year trekked on, Munsell’s friends began pairing up with boyfriends and wearing hair extensions. What’s wrong with me, she thought. Why don’t I have that going on? And if you’re not comfortable with the hair on your hair, how am I supposed to feel?
It was the hardest of her 20 years. Although her Christian faith had always been important, Munsell felt distanced from God. Her father’s temporary absence was hard on both Munsell and her mother, Carrie. On top of that, Munsell was dealing with the normal stresses of adolescence.
“I was just a little rebellious teenager that was trying to find myself, and my mom was struggling with not only a teen but also not having her husband around,” Munsell says. During the stressful time, she wore hair every day for three months.
When Mark Munsell returned, the family prayed together. “We prayed that since my dad was home, things would all come back together,” Munsell says.
She awoke the next morning to a text message from her best friend. It read the passage of John 16:33: “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
Inspired, Munsell began praying. Her shoulders hunched less and she found her love of music again. In May of that year, she stopped wearing hair.
“It was a parasite on my head that took all my confidence away from me,” Munsell says.
Two years later, she was voted prom queen.
“She prefers not to have hair,” her father says. “That’s who she is.”
Munsell still gets sympathy from strangers who think she’s sick. She still gets dirty looks from older people at the supermarket. She still gets the occasional child at the store, the ones with no filter, who will come up to her and ask, “Are you a girl or a boy?”
Her hair will not grow back, and if it does, it will soon fall out again. She has come to terms with this. Instead, she chooses to dwell on her work, her music, her life — approaching it all with grace. She is in her sophomore year of Missouri’s vocal performance program, a rigorous curriculum designed to prepare her as a solo classical singer. She plans to combine this training with a passion for writing and producing, and dreams of being the first female producer to win a Grammy. Her self-produced debut album, Laylah, was released in 2013 and featured original songs titled “The Beginning,” “Simplicity” and “Sunburn.”
Munsell and her mom bond over their passion for classical music. “We can sit down and talk about classical or old jazz or old blues music,” her mother says. “That’s the thread that runs through our relationship.” Her father says, “It was always our dream that our kids out do us — go a little bit farther, do a little bit better.”
This past spring a woman named Amanda Hicks found Munsell on Facebook and reached out to her. Hicks had recently moved her 12-year-old daughter with alopecia areata universalis, Alexis, to a new school, and her classmates weren’t exactly adapting well to the new bald girl in class. The wigs were uncomfortable, and she was tired of hiding.
Munsell and Alexis talked on the phone for an hour every night for two weeks, and Munsell wrote to her on Facebook.
“Hair is an accessory,” read one message. “It is just like wearing earrings or any other thing that makes you feel good ... We are a special, beautiful kind of girl.”
After a short while, Alexis found the courage to get up in front of her class and take off her wig.
“She was like an angel,” Amanda Hicks says of Madelyn. “She came down and helped Alexis in ways that I couldn’t. She shows people who she is and shows that being different is not bad.” The helplessness Munsell once felt about her condition has evolved into a sense of control. She will probably go to her next private lesson with Seitz as she usually does, without a wig. If one day she feels like blending in, or she’s part of an on-stage chorus, she’ll put one on. The lengths and colors can change by the hour, the day, and are dependent solely on her mood.
Only one thing is guaranteed: Whether on stage or in the studio or just the shower, she will sing.