Molly Hesse was diagnosed in 2014
From Burden to Bravery: Molly's Alopecia Story
Most of us are acutely aware of our own struggles and we are preoccupied with our own problems. We sympathize with ourselves because we see our own difficulties so clearly. But Ian MacLaren noted wisely, “Let us be kind to one another, for most of us are fighting a hard battle.” - Chicago Tribune, 1965
Everything is not okay. We tell stories, ask questions, feel out the situation a little, but it's not okay. We're gathered here for a singular reason, one person has brought us together. We laugh at stories of her, the baby sister of three brothers, trying her best to be the center of attention. A determined little girl dancing her way into her siblings' homemade music video, the memory brings visible pain to the faces of her family. "I looked like Beyoncé," comes a voice trailing from across the room. Laughter evaporates the darkness, and Molly sits down.
Her glasses can't hide the spots where here eyebrows once were, and she isn't wearing her wig tonight. MacLaren's quote compels we be kind, because the majority of humankind's toil and worriment are suffered in private. However, Molly's battle precedes her. She's just 14, a freshman in high school, arguably the most difficult time to be so utterly vulnerable.
I met Molly through a series of random events and was instantly drawn to her. It's clichéd to say, but she has an old soul. Perhaps it's her circumstance, or perhaps she's simply better equipped to deal with this ordeal because of her strength. Whichever is true, it brought her to my attention and I was hooked; I absolutely needed to know more about this girl. So, tonight, flanked by friends and family, she has agreed to be preened, prodded and photographed. Molly is determined to bring awareness to her disease, and inspire the other warriors on her battlefield.
In the eighth grade, Molly Hesse was diagnosed with alopecia areata; approximately 6.5 million Americans share her struggle. This autoimmune disorder is indicated by unpredictable hair loss and is caused by the body's immune system attacking its own hair follicles. The most common pattern of baldness is one or more well-defined spots of hair loss on the scalp; shockingly this occurs over only a few short days. Occasionally, all of the scalp hair is lost, a condition referred to as alopecia totalis. Even less frequently, all body hair is lost, resulting in alopecia universalis. Molly has now run the gamut of all three.
Her friends noticed a bald spot the diameter of a quarter as she pulled her hair into a ponytail during English class. "We were all freaking out," remembers her friend, Maddy. "We had no idea what had happened or where it came from," And they kept coming. Large clumps of hair began falling out daily. "I would walk by her bedroom and she would just be staring in the mirror, brushing her hair and crying," her brother Dillon remembers, as he fights back tears of his own. He looks up to his baby sister, "I worry about her, but she's taught me so much." Dillon came out to his family just two years ago, "I knew that I was gay since before middle school. I was horrified at the thought of people knowing. I thought if people knew about me I would be bullied even more, so I hid this part of myself for a very long time," he explains. "Molly doesn’t get to hide her struggle. Molly wears her struggle with pride and stays true to herself."
“I remember high school,” wrote her brother Collin, “all of the drama … I was scared for Molly.” He wasn’t able to come home to join the family for Molly’s interview, but shared his thoughts and support through a touching letter. “I honestly didn’t know if she could handle it. Starting high school as a 14-year old, finding out who she is as a person, and then take all of her hair away. That’s something no young woman, or any young person for that matter, should have to go through.” But, this ‘inspiring and strange girl,’ as he describes her, did something no one could’ve predicted. She took matters, and clippers, into her own hands. “We shaved my head in stages on New Year’s Eve,” Molly’s entire face smiles as she remembers it, “there was a Three Stooges cut, a sweet bowl cut, a Miley Cyrus cut, a Mohawk … we laughed a lot and my scalp was as white as paper.” Then, wigless and topped with a bandana, she ascended the stairs to her school. “I’m pretty sure my parents were more nervous than I was,” she jokes, “they were taking deep breaths the whole way there. But, it was pretty much a normal school day for me.” Beyond her bravery, beyond our need for a happy ending, her brother’s biggest fears slowly began to come true.
Molly sits perched on a stool, wrapped in a sleeveless, black lace dress, her scalp reflecting the studio lights. Her erect posture and her father’s proud jawline aren’t enough to hold back the tears that begin to stream down her smooth, bare face as she recalls the bullying. “It happened in April. There was one certain girl, at first, she would just stare and whisper. Then, I began to get texts from an Unknown number,” she pauses and steadies her breath. “She would tell me I was worthless. And worse.” In the beginning, Molly didn’t internalize the harassment. She took action; she told her parents and alerted school administration. “I knew the texts were from her, but I couldn’t prove it.” As the weeks turned into months, and the two girls shared classes together, Molly’s resolve began to wear. “It was hard, because she was always there waiting. I didn’t like leaving my house, because I was afraid she could be anywhere, ready to pounce,” she remembers. “I didn’t feel like living was all that great. I hurt myself sometimes, because her words hurt so bad.” It’s as if the air is steadily being sucked from the room, no one is breathing, and everyone feels temporarily transported into Molly’s world. Reality comes back as her father’s footsteps, staccato on the concrete floor, move away from the doorway where he’d been listening, and into the open area of the studio. Where there is family. Where there is air.
“I remember Molly as a funny little girl. Now, she uses humor to hide her pain.” Her father Michael is having a difficult time hiding his pain. “I just want her to have a normal life,” he says, wiping away tears. His hopes for her echo those of her youngest brother Mason, “Prom, college, boyfriends.” Hearing the men in Molly’s life discuss their openness to the idea of potential suitors brings a little humor, and a hefty amount of significance to just how much Alopecia affects her everyday life. It’s not a life threatening disease, but it is life altering for everyone close to the person diagnosed. “My wife and I disagree and it’s difficult. Renee does everything she can to get Molly into studies and trials. I’m concerned about the effects of the drugs on her ability to have a family in the future,” says Michael, whose own close-knit family still spends time together regularly. “It’s been hard on us; we have other children with other issues,” explains her mother, Renee. “We don’t want to give our kids everything, but we want them to come to us with anything.” The balance required to nurture their four children without bias is a complicated feat, yet they accomplish it true yin and yang style. “I was raised by my uncle,” Renee says matter-of-factly, “I didn’t have a nurturing mother and I see things more in black and white.” Despite the lack of female influence in her upbringing, her compassion is irrefutable. The relationship between Molly and her mom is enviable; it’s transparent, honest and atypical. Her father, emotional and articulate, wears his heart on his sleeve. “I think my mother and father are two of the strongest people I know,” writes Collin, echoing Dillon’s sentiments. “Not all parents are like ours. I am incredibly thankful for my mother and father.”
The Hesse children have learned more than just emotional well being from their ultra-compatible parents, who teach drive and success through exemplified living. Michael is a crucial member of the family real-estate law firm Hesse & Hesse, while Renee orchestrates all financial aspects of a local $40M oil, gas, mineral, and royalty business. Tapping into the can-do attitude instilled by her parents, Molly recently reached out to fellow Alopecia sufferer and NBA superstar, Charlie Villanueva. “I want you guys to meet Molly. She wrote me an email a while ago back and I just had to meet her,” blogged Charlie. He goes on to explain how difficult it is to make the time in his schedule to write blog posts, and how her email stood out among the hundreds of messages he receives. Then, just like that, clad in a Mavericks jersey and a blue bandana, the video of Charlie hugging a wig-free Molly and telling her “we’re family” exploded onto YouTube, Facebook, and Twitter. “It made her day and weekend,” her mother tells Charlie. It also started a dialogue. Molly’s email set off a chain reaction within her school. One brave email turned into a viral video that gave classmates the courage to talk to Molly about Alopecia. “In the future, I don’t want to say any specific details for Molly, because I want her to figure that out for herself,” says Mason, “but, I hope that she can use what happened to her to inspire others and reach out to other people who are struggling with Alopecia. I think she can do that.”
The bullying hasn’t stopped completely and despite a strong support system, Molly still feels lonely at times. But, she’s living life to the fullest regardless of the burden she bears. Molly is one of only three freshmen to have secured a spot on the Jasper Jazz Drill Team, which includes the additional challenge of uniform hair regulations. The sense of humor her father is so fond of, has remained in tact through it all. “If I could talk to a 13-year old me?” Molly looks amused, “I’d tell her be a bad ass.” I should’ve seen that answer coming; even the clicks and flashes from our photographer stop long enough for her to recover from a deep belly laugh. Molly continues, “Stick to the things and people who make you happy. The bullies, they’ll get to you, but the happier you are, the less they’ll bother you. They’re looking for anger in you, probably because they’re suffering, too.” Molly pauses, then adds one last bit of comic relief, “Little kids will stare; just don’t make eye contact.”
In an age of cyber bullies and social shaming, MacLaren’s words remind us there is always more than meets the eye. But what if there wasn't? What if your battle was visible for everyone to see and judge? Would you crumble under the weight, or use it to shine light in the darkest of corners? “There will always be people who don’t like you, but there will always be more people who love you,” Molly reminds us. “Don’t focus on the negative things people say, focus on what your friends do to help care for you. And always remember, there are worse things that could happen to you.”
All photography on this site, provided by Kelly Williams Photography.