Holding Out Hope
She was sitting at a computer at school, working with her classmates on a project. One of her friends standing behind her gave her the startling news, “Hope, your hair…, its gone in the back…”
It is one thing to be a mid-40’s male whose mop is gradually thinning into obscurity, it is quite another when you are a young lady in the 5th grade with gorgeous tresses of hair. Hope and her mother Kate went to their family doctor to find out about the hair loss, which is called alopecia.
Alopecia areata is a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).
- National Alopecial Areata Foundation
What Hope heard from her doctor that day panicked her; she was warned that her hair could all fall out and that it probably wouldn’t grow back. “I thought, ‘Oh no! I am going to be that bald girl in the back of the classroom that no one wants to talk to.’”
Fortunately the hair loss and thinning stopped with the back of her head and then began to gradually grow back. By the start of her 6th grade year she once again had a full head of hair and went through the school year without any other problems. Hope and Kate had been working with doctors and naturopaths to determine the triggers to this autoimmune disease so they could avoid those allergens. She went on a gluten free diet, which seemed to work.
That next summer she went to a weeklong church camp that didn’t have any menu options. Hope thought she would be okay eating the camp food and then returning to her normal regimen at home. Unfortunately her body, which now wasn’t used to any gluten in her system, reacted almost immediately. During camp her hair started falling out in little clumps. She turned to her best friend and said, “Oh crap. It’s starting again.”
By the beginning of 7th grade she was attending school wearing a wig called a topper that makes a person’s hair look fuller. But as her hair continued to thin the wig would no longer stay in place. Hope went shopping for a full wig.
Synthetic wigs have their own hardships. They caused Hope’s scalp to itch and sweat and the wig was simply uncomfortable to wear for long periods of time. She much prefers wig she has made of real hair as it doesn’t give her the same reactions and she also can style the hair. The setback with a wig made of real hair is the cost, which is around $1500.
She received encouragement from others, including her classmates, but has found it difficult to relate to others who aren’t feeling this same loss. It is one thing to imagine losing your hair as a teenage girl; it is another to actually experience it. Some people’s attempts at cheering her up fell short – “At least you don’t have cancer,” and “At least you aren’t dying.”
But Hope’s reality is that she really loved her hair. It was her favorite feature of her body and the loss she has experienced is much more significant than it might be for someone else at a different time or stage in life. One of Hope’s desires is to go to Washington D.C. this summer for a gathering of kids with alopecia. There is both a conference for parents as well as a camp for the teenagers. She believes this will be a great opportunity for her to connect with some other girls she can truly relate with in this specific area.
Hope doesn’t come across as a victim, nor is she hesitant to talk about her hair condition. One benefit she has found is that she gets to wear different wigs to match her moods and her outfits – even pink ones. She found that costume wigs are cheaper to purchase so she now has a nice little collection of them. Her bedroom has a shelf where she displays and can style her hair pieces.
She ran into a roadblock at her school when she asked the administration if she could sometimes wear a hat. Again, wearing a wig all day was uncomfortable and distracting to Hope. But the vice principal told her and Kate that hats are against the school’s dress code and that if they made an exception for Hope they would have to make one for everybody. (This writer doesn’t think the vice principal understands the word ‘exception’ at all, and it is with great restrain that I don’t publish this administrator’s name and the name of her school.) The next day Hope came to school without a wig. Fortunately most of her classmates were supportive of her. Unfortunately her head was cold. She has now switched schools to one that is more flexible in their dress code (and where the administrators actually have souls).
Hope has found benefits – she is overall healthier much in thanks to her diet, she has learned a lot about her own inner strength and courage, and she still can eat the frosting off the top of cupcakes.
And Hope has hope. She is very careful with her diet and continues to study how to help her body heal itself. She would love to have a buzz-cut length of hair by this summer, desiring that the patches will continue to fill in. Then next year she’d like to grow some bangs again and style her hair like her favorite singer, Morgan Wolf, the lead singer of the band A Life Set Apart.
When Hope posed for the pictures in this article she wasn’t hesitant to share the nakedness of her physical condition and at the same time express the fullness of her spirit. They are some of the most beautiful pictures this photographer has ever taken.