British author Christopher Hitchens once said about parenthood: “[I]t’s a solid lesson in the limitations of self to realize that your heart is running around inside someone else’s body.”
There is nothing we wouldn’t do for our children. So, two years ago, when Maeve Sooley’s hair began to fall out, alarm bells sounded within her parents, Melissa and Justin Sooley. Maeve was four years old.
“As a parent the worst things come to mind,” Melissa says.
Maeve was diagnosed with alopecia, an autoimmune condition that presents in a few different ways: alopecia areata, which is characterized by patchy hair loss on the scalp; alopecia totalis, when the entire scalp experiences hair loss; and alopecia universalis, which is complete hair loss.
Maeve’s parents decided to keep her in different activities that she enjoyed, such as gymnastics and dance.
“So, she wouldn’t always be with the same group that was comfortable seeing her,” Melissa continues.
Last year, Maeve and her parents talked about getting her a wig. A friend of Melissa’s who works at Continental Hair in Sarnia told her: “You need to start following this young lady on Instagram.”
That young lady is Marcy Gallant, a student at Western University, who has a dedicated Instagram account, @theartofalopecia, that documents her life with alopecia. Melissa decided to message her directly to see if Marcy would be interested in meeting Maeve.
Marcy replied that she would.
“We met her last October,” Melissa says. “We drove to London where we went shopping and had dinner. We met Marcy a second time so that Maeve’s older brother, Mack, and my husband could meet her. We live in Amherstburg and she is in London, so it’s not an easy commute.”
Although we live in a time where diversity among people has never been more accepted, it’s still not easy for people who live with visible conditions to go about their lives without stares and, sometimes, unwanted comments.
“People are bold,” Melissa says, “whether they know you or not. People have paid for our meals at restaurants thinking that Maeve is a cancer patient. We encourage people to ask questions, but what is offensive is when they just assume. When they come up and say: ‘Oh, is she in treatment?’ and then I have to explain to my young daughter what that means.”
At the time she lost her hair, Maeve attended a private Montessori school. When it came time to move to Junior Kindergarten, she asked to attend the grade school her older brother, Mack, attends. That summer, her hair grew back in patches. Mack was fond of having designs, like spiderwebs, shaved into his hair at haircuts and Maeve asked if she could, too. When asked what design she wanted, Maeve said: “Hearts.”
The new school meant a whole new group of kids. Maeve and her parents received permission to talk to the class about her alopecia. Maeve and her mom read books to the class: “Where’s Your Hair, Hannah?” and “My Hair Went on Vacation”.
“Maeve brought her hair pieces and wigs,” Melissa explains. “She let the kids touch the wig, and we answered questions about her condition.” She laughs, remembering: “It was the most hilarious thing—when I said: ‘OK, well, Maeve will start losing her hair…’ kids suddenly talked about how their dads and grandfathers were bald. One boy stood up and showed the class a birthmark on his torso.
Marcy Gallant’s experience with alopecia was both similar and different from Maeve’s.
“I was about six years old when my hair fell out for the first time,” Marcy recalls. “Our family doctor referred me to a dermatologist, who diagnosed me with alopecia.”
Unsure how best to help their daughter, Marcy’s parents thought the solution to the problem was getting Marcy’s hair back.
“So, they advocated on my behalf for trying new treatments,” Marcy says. “There are so many medications. Steroid creams and injections are most popular among alopecia. I started when I was eight years old.”
When she was thirteen, Marcy was treated with Methotrexate, which she later learned was a chemotherapy treatment.
“An aunt who had cancer was on the same medication,” Marcy says. “That scared the heck out of me!” Later in life, Marcy came to suffer heart problems and has a neurological condition in the leg where the drug had been injected. “I’m unsure if there is affiliation with that treatment,” she says, “but I have to wonder.”
It was this early experience with the medical system that led Marcy to do a double major in Disabilities Studies and Child and Youth Studies. Her goal is to become a Child Life Specialist and advocate for children’s rights in the medical system.
Her alopecia did not affect her socially in the first years. She had long hair, which covered up the patches of hair loss. That changed at age ten. Until then, she had special permission to wear a hat at school—and then came the Friday where all her hair fell out.
“My mom and I panicked and went to buy my first wig,” Marcy says. “I arrived at school on Monday and people were confused why I had so little hair the week before and now had a lot of hair. Anyone who looked closely saw I was wearing a wig, and that’s when the bullying started.”
Grades five and six were tough years.
“I had an idea I should educate people about alopecia,” Marcy says, and much like Maeve did at her school, Marcy did a presentation in front of the whole grade six class.
“I told them how it felt when people spoke about something I couldn’t help,” she says. “Then I took off my wig and everyone got to see me… There were lots of tears and apologies.”
Marcy enjoyed a reprieve until she started middle school the following year, which was grades seven to twelve.
“The high school kids were a bigger issue,” she says. “I didn’t feel safe. In the halls, people tried ripping my wig off. The principal suggested I address the entire school body at an assembly.”
That meant speaking in front of more than a thousand students. Easier said than done.
“I did it,” Marcy says. “That was one of the biggest achievements of my life.”
Marcy vividly remembers the day Melissa first contacted her.
“She sent me a cute little ballet picture of Maeve,” Marcy says. “When we made a connection, just over social media, and arranged to meet in person… I saw Maeve and I just saw me. We had an instant connection. It was pure magic. I will protect her at all costs.”
For her own part, Maeve says about Marcy: “She’s kind. She’s funny,” and that she likes messaging Marcy on Fridays and weekends when she isn’t in school.
“You can have empathy, but you can never truly understand what it’s like to live with alopecia,” Melissa says. “That’s what Marcy brings. One of the first times we met, she said to Maeve: ‘You can call me any time. If you’re having a bad day and need to talk about it, you can call me.’ Just Maeve knowing that’s an option, someone who can relate to what’s she’s going through, has given me and my husband such reassurance.”
For more information about living with alopecia, visit the Canadian Alopecia Areata Foundation at www.canaaf.org, and view Marcy Gallant’s account at @theartofalopecia on Instagram.