Discovering different is beautiful
By Chris Rourke
Sometimes it takes decades of living before one learns that different is beautiful. But Bristol Buffington is experiencing that lesson at a young age.
Bristol, who will turn 8 next month, has a form of alopecia areata, an autoimmune disorder which causes hair loss. As she has set out on a journey of discovery in the last 18 months, she's found she's not alone — she's among many, even in the Gunnison Valley, who have faced the challenges of the disorder and have learned to overcome them.
Alopecia occurs when the body's immune system attacks hair follicles, causing them to slow production to the point where hair growth may stop and hair falls out. Since the follicles remain alive, hair may regrow in unpredictable patterns. For some, it may never regrow.
According to the National Alopecia Areata Foundation, 6.8 million people in the United States are affected by the disorder.
There are several types of alopecia, but three are most well known. Alopecia areata patchy is most commonly distinguished by coin-sized hairless patches on the scalp and body. Alopecia totalis is the total loss of hair on the scalp. Alopecia universalis is the complete loss of hair on the scalp, face and body.
Bristol appears to be "a patchy" right now. However, time will tell if her classification will change.
Embracing the difference
The road to a diagnosis was not quick for the Buffington family. Bristol's mom, Deena, first noticed that her daughter had lost eyelashes before a dance recital. Deena asked Bristol if she had been pulling them out, and she said that she hadn't.
After a period of time, the Buffingtons took Bristol to a dermatologist who told the family he did not think Bristol had the disease. But during an onset of an illness, Deena discovered more hairless patches on Bristol's scalp.
The Buffingtons took Bristol to Children's Hospital in Denver where doctors confirmed the young girl did indeed have the disorder.
"In a way it was a relief to know," Deena said.
At first, Deena said, Bristol was very self conscious about her appearance, trying to hide under hockey helmets and hats. For a while Bristol wore hats to school. She remembers one time she learned that a classmate had been making fun of her, but said it doesn't really happen anymore. School administrators, Deena said, have been very supportive, allowing her to speak to Bristol's classes as needed to help educate the children about the condition.
After attending a camp called "Alopeciapalooza" in Maine, her parents noticed a shift in her attitude — Bristol learned she was not alone and that her condition was quite common.
Bristol went to Alopeciapalooza with another local girl, Riley Aslanian, 6, who has the disorder. Together, they met people both old and young who looked just like them. Programming was provided for parents on how to help their children navigate their new normal, while campers experienced carefree play.
"You grieve as a family because you can't fix it and there's no cure for it," said Christa Aslanian, Riley's mom. "You go through times where you feel really good, and there are other times when I'm really angry as a parent."
At this camp, the families met a woman named Alex — a mentor — who helped the young girls see that beautiful is different. Alex came to visit the families in the Gunnison Valley a few months later.
"We've told Bristol this is her journey and we're willing to support her in any way that she needs it," Deena said. "Alex is just a beautiful woman and the girls just really loved being with her.”
Mentors among us
While there are resources today that help people with alopecia adjust to living with their condition, it hasn't always been that way. Local artist and architect Joe Bob Merritt has had alopecia universalis since he was 14 years old.
Growing up in the '80s with such a condition in his home state of Texas was challenging since doctors knew little about what caused it. He underwent testing, endured teasing and coped with his parents’ concern about his condition.
It is believed that alopecia can be triggered in young children by illness, but in older children and adults it may be brought on by emotional trauma. Merritt recalls an incident with a childhood friend which brought emotional shock to him, which he believes was the start of his condition.
Through high school and college, Merritt wore a wig which he described as uncomfortable and hot. But during what he called a spiritual awakening in his young 20s, he learned to embrace his condition for making him unique.
While snorkeling in Miami, he observed many types of fish and ocean creatures — how each was made in a unique way. The experience helped him heal from what he described as the trauma of growing up looking different from others. Following his experience snorkeling, and much to the surprise of his family, Merritt decided to eliminate the wigs and show the world who he truly was.
“(Culturally) we don’t see each other as unique — we compare and contrast according to some ideal of normal,” Merritt said. “Normal is a setting on a washing machine. There’s no such thing as ‘normal’ because every being is unique.”
The Aslanians met with Merritt following Riley's diagnosis, and he was able to offer insight about the road ahead.
"The beautiful part about this … we don't ever want to hide it because it can do so much damage," Christa said about what they learned from Merritt. "You learn as a family truly where the beauty and the heart of a person is. One thing we learned is that Joe Bob approaches each situation he's faced with love."
Following Alopeciapalooza, Bristol made a decision similar to Merritt's. One day, instead of wearing a hat to school, she wore a headband with cat ears attached to it. Her mother was concerned that Bristol would be teased, but Bristol handled the day in stride.
Deena said her daughter has even confidently told adults as well as other children why she looks the way she does.
And for an almost-8-year-old, Bristol seems to have a jump on many in life who feel the pressures of fitting in — that being different often means one is special in their own way.
"They call us unicorns," Bristol said as she headed upstairs in a dress inspired by the main character in the Disney movie, "Frozen."
"Unicorns are different from normal horses, so they call us unicorns."
(Chris Rourke can be contacted at 970.641.1414 or at firstname.lastname@example.org.)