`The adults were more cruel to me than the children,” Barbara Goldberg mused as she recalled her teenage years and her struggle against alopecia areata, an auto-immune disease that causes hair loss.
The disease appeared when Goldberg was about 10 and began losing her hair.
“Of course my parents took me to every medical center in the Chicago area that they could find. I was poked at and looked at by dermatologists and other types of doctors.
“This was happening 42 years ago. The world was different then. You didn’t take children to psychiatrists or psychologists. Medical doctors were up on pedestals.
“I was a beautiful child with naturally curly hair, blond and red highlights, a little dancer, a little Dresden doll that my mother loved to dress up. So this was very traumatic for everybody.”
After about three years of visiting doctors, Goldberg recalled, there was an incident at a major medical center in Chicago at which there was a doctor and his entourage, as she put it, standing around her.
“And he was treating me like I wasn’t there,” she said. “Like I wasn’t a living human being. Poking at me. I guess I reached a point of no return, a real turning point. I decided no one was ever going to do this to me again.
“I remember him saying, `She’s a very nervous child; that’s one of the reasons her hair is coming out.’ For some reason I stood up in this room and I started screaming, `Don’t touch me anymore. Don’t you understand that I’m nervous because my hair is coming out?’ I ran out of the room, and I told my parents I was never going to go to another doctor and that I wanted a wig.
“The doctors kept telling my mother not to put a wig on me because then my hair would never grow in, which is nonsense. We’d have thousands of women walking around without hair after chemotherapy if wearing a wig meant their hair would never grow in.
“I had a very difficult couple of years where I had to try and hide the bald spots. Hair would grow in, and then other hair would fall out. That’s how the disease is. It’s very frustrating because you never know where the hair is going to fall out, if it’s going to grow back in and if it does grow back, is that the last time?”
Goldberg says the disease changed her personality, that she went through intense emotional and psychological trauma.
“That’s the real crime, the real difficulty, of this disease,” she said. “People become introverted. They want to blend into the walls and not be noticed. When something like this happens in adolescence or preadolescence, when your personality is starting to develop, it’s even more difficult.
“For me, there was no psychological or emotional help, no National Alopecia Areata Foundation, no `Oprah’ show. I thought I was the only person in the world who was going through this terrible experience, and it altered my life in a negative way during those years.
“I was taking dancing lessons at the age of 3. I had been taking diving and swimming lessons. I was a butterfly. Then I quit everything, and I became more introverted. When I picture it, I visualize this little girl building walls around herself. And that’s what I was doing.
“Children were more understanding that the adults. Some teachers and parents gave me a difficult time. I was invited to a pajama party, and the girl had to call me up and ask me not to come because her mother said I had a disease, like ringworm or something, and they didn’t want anyone to catch it.
“I never told my mother that it happened; I just pretended to be sick and didn’t go. And I never went to another pajama party during those years.”
One teacher would not let her join the chorus when she was in high school.
“I tried out, and I did quite well,” she said. “The teacher told me that I had a nice voice but she didn’t think I would fit in because everyone had to wear their hair the same way. So I never joined the chorus, and I never tried out for anything again.”
When Goldberg was 17, she finally persuaded her parents to let her get a wig.
“My father took me to a place in downtown Chicago where they were making wigs by hand, and they took this mold and measurements and they made a wig. I wasn’t asked what I wanted. I got it; it was styled, but it wasn’t styled on my head, and they sent me out the door. It felt strange, it looked strange, it wasn’t the way I wanted to wear my hair.
“I had no follow-up. I didn’t know how to clean it; I didn’t know where to take it to get it styled. I went on my own to different beauty shops, and there was no one who would help me. They shunned me. They didn’t understand wigs-this was before synthetics-but I finally found one salon that treated me kindly and helped me to take care of the wig.”
After high school, Goldberg attended college at the Art Institute of Chicago.
“It was unthinkable that I would try to go away because I would have to room with someone and be in a dorm,” she said.
She had good friends, but she never discussed her problem with them.
“I spent a lot of time and energy trying to hide it.”
While she was in college Goldberg went to a dermatologist who told her what she had.
“He told me the name of the disease and that they didn’t know a lot about it. And he told me that there was nothing that my parents or I had done to cause it.”
Goldberg dated on and off, she said, but a relationship would become too intimate and she would break it off.
“Or a guy would find out about my problem and not want to be a part of it,” she said. “I had some devastating disappointments, but that’s the way life is.
“I wanted to live life to the fullest, but I didn’t understand why I was having such a difficult time doing it. I was very sad and very angry, but I didn’t know it until later on.”
Goldberg met her husband when she was 18.
“After we dated for a while I told him that I wore a wig, and he didn’t seem to care. We continued dating, and we married when I was 20 years old.”
The couple, who have been married 32 years, had a son and a daughter.
“After I had Amy (their daughter), I started to have agoraphobic tendencies. I would get anxiety attacks and didn’t understand what was happening to me. It was scary. I would think I was having a heart attack. I had a good old-fashioned internist in those days, and he told me I needed to go into therapy.
“I think this was another turning point in my life when, in my early 30s, I went into therapy and started to work out these problems. I went back, off and on, for many years. Things I should have learned in my adolescence I learned in my 30s. This was the time of realization of who Barbara was, of waking up to what the world was all about and how I could fit into it.
“In the back of my mind during all this I was thinking, `What am I going to do with my life when I grow up? I’m raising children-that’s good. I have a marriage-that’s good.’ But I wanted to do more. So I went for vocational counseling where I began to develop my idea of going into this business.
“I realized I knew an awful lot about wigs and about hair loss. And I had a real burning desire to do something. I used the creative processes that I learned in college to develop my business, and I still use those creative energies in what I’m doing today.”
In 1985 Goldberg began forming her business. Her idea was to help people with hair loss buy wigs and learn how to take care of them. At that time, Goldberg said, “I was very unhappy with the places I was going to. There was no one doing business the way I believed I should be treated. And they certainly didn’t offer the products or the education in how to purchase and use the products. I believe very strongly in education.”
Goldberg went to the library and learned about the history of wigs. In the process she learned that alopecia has been recorded since the time of ancient Egypt.
She studied styling and became a consultant to a company that was manufacturing handmade medical hair replacements, custom-made wigs fitted to the individual head.
Thus she gained the knowledge to start her own business, which includes educating people on how to buy and care for what Goldberg, now a certified cosmetic therapist, calls “a prosthetic, a replacement for a body part.”
Goldberg, 52, is president and owner of Hair Response Inc., in Arlington Heights and Libertyville. Daughter Amy, 25, also works there.
As a result of Goldberg’s recent battle with breast cancer, her company now offers breast prostheses, also based on the philosophy of educating clients and providing a comfortable, private place where they can learn to use their prostheses. She also has become the Chicago connection for the Wigs for Kids Program, a national foundation that provides free wigs for families who are unable to buy a good hair prosthesis for a child undergoing treatment for leukemia.
Goldberg became aware of the National Alopecia Areata Foundation about eight years ago and helped to bring a group into the area. She also helped start a children’s group.
“We believe that about 5 percent of the population have one form or another of alopecia areata,” she said. “I wanted other people to have the opportunity to know that there are people out there who have gone through this and that they’re willing to share their experiences in any way they can. It’s not group therapy; it’s for sharing information.”
Doctors still do not know exactly what triggers the disease. It might be illness with a high fever, or stress, which leads to the onset; but stress doesn’t cause it, it just triggers it, Goldberg said. It also is not known if it is a genetic illness, although there have been families with many members who have it through the generations.
“In my case,” Goldberg said, “there is no one else in my family with the disease, but my people come from Europe, and we can only trace back a couple of generations.”
Goldberg believes that women have unknown talents and strengths.
“I believe that any woman can do anything she wants to do, but she has to understand what she wants to do first. A person has to sit down and look at herself in the mirror and say, `Who am I?’ If she doesn’t know who she is, she has to start there and find out who she is. That may be done by taking a course at a junior college, or through her church or synagogue, or with the help of family or a therapist. But she has to find out who she is first.
“Whatever the difficulty, she can get herself out of it, but she has to feel that desire from within. Wake up and find out what’s available. Take control of your life.”
