After spending nearly 30 years building up the courage, Bernice Williams was ready.
After waking up anxiously at 4 a.m., she showered, dressed and fretted about what to wear, settling on a cherry-red silk shirt, black slacks and low-heeled pumps.
For support, she called both her mother and her best friend, who advised her to take a walk, and she asked her husband, Cornelius, to stick around.
Finally, it was time.
She sat in her Mt. Clemens back yard, took off her favorite shoulder-length brown wig, and let the warm, late-summer sun shine on her bald scalp, a feature she had hidden from her own family for most of her life.
Today, this is all she could do. Tomorrow, who knows?
“It just has to feel good inside, just as this feels right today,” Williams explains.
Would she ever be able to run errands or answer the front door without her wig? She does not know.
Williams’ inch-by-inch acceptance of alopecia areata, a disease that causes profound hair loss, is all the more telling because of her credentials.
At 59, she is a mature, accomplished woman with seven college degrees in nursing, guidance counseling, clinical psychology and theology.
If a person like her, who is trained to help others, could live so much of her life in hiding, certainly many of the 2 million to 4 million others with alopecia in the United States must suffer silently, too, she has thought.
The impetus to go public with her story came from a 21-year-old woman named Valerie who wrote the National Alopecia Areata Foundation recently. She was lonely because she spends much of her time inside her house. She wanted a pen pal.
Williams wrote her, offering support. After she heard back from Valerie, Williams wrote her again, to offer continued support. “I don’t want her to spend the next 38 years hiding,” says Williams, who has switched the focus of her counseling practice to help others with hair loss issues.
“I have a lot of gifts. I can teach, write, lecture. My resume would be 12 pages long if I wrote it all down. Why should I let hair control my life?”
Williams never had long hair as a child, just “short, stubby” tufts, as she describes them. Her mother made her short pigtails and tried numerous products on her daughter’s hair to make it grow.
Nothing worked, although she had a sufficient amount of hair in her early and mid-20s to create hairstyles she could live with, and to compete and become a runner-up in a contest for Miss Toledo, her hometown.
But by the time she was 30, troubling bald spots had grown bigger. Then they merged. Williams was aghast. By then, she was living in Mt. Clemens and sought help from a Detroit dermatologist. He took her to a medical conference, where she sat “like a spectacle, tears running down my face.” After what seemed like hours, he told her she could put her wig back on and go home. A week later, he told her that the doctors all agreed she had alopecia areata.
She spent the next decade looking for solutions to restore her hair. She has tried them all, she says. Cortisone injections into her scalp. Oral drugs, both costly and requiring a lifetime of use, with sometimes only modest results.
Minoxidil, known by the brand name Rogaine, works better with milder forms of alopecia. Still, it may not result in enough hair to avoid a wig. It also must be taken for a lifetime and may need to be taken in conjunction with other prescription drugs, such as steroid medicines.
She tried vitamins. Creams. Herbs. “All that would grow was a little peach fuzz.” She turned to hairpieces, then techniques like bonds and weaves–hairpieces that use stronger adhesives to secure them better.
She got her biggest help from two women with alopecia. The first was Jojuan LaMorreaia, founder of a Detroit support group. She remembers seeing the tall, striking, bald LaMorreaia get out of a flashy sports car at the first meeting Williams attended about 12 years ago. The support group was filled with adults and children who told their stories about coping with alopecia.
“Finally, I could identify people, even children, in the world with this. I started to feel better. I learned alopecia wasn’t something I had done to my hair. I learned it was an autoimmune disease” triggered by a mix-up of signals in the body’s disease-fighting mechanism.
She also would find out that the disease apparently is caused by heredity, not stress. It has no known cure, and treatments are mostly effective for milder cases.
At a TV appearance with LaMorreaia, Williams met Peggy Knight, a California woman with alopecia. She has lectured widely and makes a vacuum-fit hair prosthesis that creates an airtight seal for hairpieces without using tape or glue. Williams is her Detroit-area representative.
But even as she grew more comfortable with her alopecia diagnosis, Williams knew she had a long way to go. She struggled internally about whom to let in on her secret. She never went outside without a wig. She even slept in one.
“I had a daytime wig and a nighttime wig,” she recalls. “I would wake up at 5 a.m. to have my hair and makeup on before my husband and children got up. That’s how obsessed I was. My hair had to be in place and look at all times like I stepped out of a beauty shop. I’m sure it drove the family crazy.”
Only when her late husband lost his hair during cancer chemotherapy treatments did she share her secret. “He was bemoaning his hair loss, and I took my wig off. He sat at the table and cried. `Honey, I didn’t know,'” she recalls him telling her.
Williams dated her current husband, Cornelius, for 6 months, and many times told him, “There’s something I’ve got to tell you.” But she’d “swell up with tears” and back out. One day, she just blurted it out.
“He looked at me and said: `Well, what else? That’s it?’ He just laughed that I fretted over this. Then one day he said, `Why not take it off, honey?’ Over time, I finally took off the wig. He said, `You look so beautiful.’ He leaned over and kissed me on my head.
“Now if I wear my hair to bed, he says: `Who is this lady in my bed? Please take it off, so I have my head to kiss.’ He smooches all over the top of my head. Since then, he has said he’d shave his head and we can go as twins.”
She has told her three children and two of her three grandchildren. She has yet to tell Cornelius’ nine children, 27 grandchildren and three great-grandchildren.
The last step to Williams’ acceptance of alopecia was the most painful. But she knew she had to do it. Williams wanted to be photographed bald.
“I’m happy to finally tell my story and get over the embarrassment,” she says.
She wrings her hands throughout the photo session and admits she hates her obsession with hair. Her wig sits next to her on a chair, a lifeless accessory.
“The more I talk, the more of a catharsis I have,” she says. “It’s like purging, like opening new doors. It feels good.”
Finally the photographer is done. Williams puts her prosthesis back on her head.
She is asked how she will help others cope with hair loss, when confronting a big moment as she is now.
“I’ll ask them to tell me what adjectives describe how they feel inside,” she says. The adjectives she uses to describe this moment are “choking, anxious, nervous and sweaty.” Any positive adjectives to describe the other feelings she has, she is asked? “Wonderment, advancement,” she says.
What guidance does she give others? “I will approach it from the perspective of, `What do you have to offer the world? You’re intelligent, beautiful, you dance, you sing, or anything else. Who are you?’ . . .
“I’m here to help people get through this. We can cry about it, pray about it, knock a hole in a wall, but we’ll get through this. We’ll get out of this depression, get up off the floor and become whatever we want to become.
“That’s the message I want to give. You can be anything you want to be, with or without hair.”
RESOURCES ON HAIR LOSS
For help dealing with alopecia, contact the National Alopecia Areata Foundation’s Web site at www.naaf.org or call 415-456-4644.
A new book, “Hairsavers for Women, A Complete Guide to Preventing and Treating Hair Loss” (Three Rivers Press, $14) by Maggie Greenwood-Robinson, PhD, a certified nutrition consultant, offers a thorough summary of remedies for hair loss.
–Knight Ridder/Tribune
