Volunteer Spotlight: Barbara Stober
Interviewed by Jennifer Raikes, TLC President
- Reprinted from InTouch Issue 50
- © Trichotillomania Learning Center, Inc. 2008. All Rights Reserved
Barbara Stober is the recipient of the 2008 Christina Pearson Award for her outstanding service to the TLC community. Barbara is among the generations of hair pullers for whom there was truly no information or help available. She met Christina Pearson in the earliest days of TLC's creation and has been a vital part of our community ever since.
Barbara is now 66 years old and lives near Seattle, WA. She is mom to two sons, and has six grandkids and a brand new great-grandson. She is enjoying retirement and the chance to spend her time going to her grandkids' baseball games. She continues to share her love and experience at TLC events.
Tell me about your early days with TLC?
There was a woman in Seattle who had been in touch with a television station in Seattle and got them to do a show on trichotillomania. Christina Pearson was part of a Stanford University study of TTM at the time and she came up to be on the show, Channel 4 Northwest Afternoon.
I heard the introduction for the program and I couldn't believe they were actually going to do a show on this. I stayed home from work to watch it. I was 51 years old and I had never told one person I pulled my hair. My family knew I wore a wig for 20 years but they didn't know why. They just knew it was a secret and it wasn't okay to talk about it.
When Christina got home [from doing the show] her voice mail was jammed!
The first time I met Christina in person, People magazine was going to do an article and they wanted a picture of a bald woman. I had to take my wig off in front of this man while he took a picture - it was like standing in the street buck naked. It was the first time I had ever taken my wig off. Then People decided it wasn't a newsworthy article and they canceled it.
But that was a huge step in my life. It was probably the first big step I made. After that, Christina would give me phone numbers of anyone in the Northwest who wanted contact and I would call. This was just the very beginning of TLC. There was nothing in place. Christina ran the whole thing out of her own pocket.
In the beginning there was nothing. There were no doctors yet. Even after we started to see doctors who claimed to know something, the first thing we'd ask them was what their success rate was. They'd all say it was high and we knew they were lying... we knew they were learning from us.
I kid about me being Christina's first success. I wanted to quit so bad. She would call me with all kinds of ideas of things that might help: vitamins... cold showers. It didn't matter what, I would try it. But the cold showers were the worst - they didn't help at all!
She always said, "Gently, gently." I had a stamp made with that statement. I stamped Post-Its and I put them on my bathroom mirror. No one else would know what they meant, but I would see them and I had to kind of laugh. I could disconnect for a moment from my hand going to my head. If you can just catch yourself in that moment before pulling...
Tell me about your recovery?
It was a huge thing when I met Christina. She has everything to do with my recovery.
My hair still comes and goes. Right now I'm in a pretty good place. I'll be 67...
It has always been a disorder of isolation for me. I still deal with shame that I've never been able to resolve. I am still working on it. It is an ongoing thing.
I never told my husband or boyfriends. I had intimate relationships and I never took my wig off. I guess I chose men who didn't want truly intimate relationships. I had a neighbor stand in the street and yell at me "Why don't you go home and pull your hair!" It convinced me that everybody cannot have the information.
The important people in my life know now. But even now I still only tell people I really trust or people I think have their own issues with hair. Those people I'll tell in a heartbeat.
I've gone to the schools and talked to the school nurses and I've taken the "Straight from the Heart" DVD to show them. I tell them "the kids are there. If you encounter them, here's my number. "
I was so touched over the award. It meant a huge amount to me. My family was there (for the award ceremony). The fact that my sister-in-law has become a contributor to TLC has meant a lot to me. She contributes every year. That's a big deal to me.
What do you think is the most important work TLC does?
Making the information available to parents to guide their kids. There have been a lot of kids who have really been abused over the years. I pulled since I was about 12 or 13 and nobody ever asked me about it. I thought I was invisible. I don't know which is worse: having them on your case or not saying anything.
When you see kids at TLC events, what do you think?
They are so lucky. The thing they have today that we didn't have in the very beginning is hope. We had no hope. Today we know we know that we CAN grow our hair. And even if we still struggle or don't grow it, it isn't about the hair. We can still be a whole person. We have to learn to accept the disorder. There still is hope whether we have our hair or don't. That can't be the only thing that makes us okay. If we don't grow it back, we have to accept the fact that we're still okay. We're still perfect. I see people at these conferences that don't have their hair and they are still beautiful - they have real courage and they are so beautiful.
I enjoy working with the kids more than anything. They are like little sponges. They just soak up everything you say. When you tell a little girl she is beautiful, she just beams. That is something we can give each other. Some of these kids are in so much pain. Just to get a grin out of them makes my day and I'm so impressed with them. And the parents who come to TLC events - I don't think they get enough credit for reaching out to try to get help.
I love hair pullers. I've never met a hair puller that I don't just love. Only other hair pullers can really understand.
What are your hopes for the future of this community?
Outreach information. The outreach is a huge thing. In the beginning there was a lot of guessing. There weren't any known studies. There was nothing. Now every time there is a TLC conference or Retreat, there is always new information. Today, you go on the internet, there is information. It is all because of TLC.
I wish it was so simple that we could say we'll be healed, we'll never pull again. But I don't think it is, do you? We don't have all the answers yet. Some people have success and some don't. It is just a little piece of the puzzle. I am so grateful. I thought I would die bald. I am so grateful. I have so much gratitude to TLC and to Christina and all the professionals. Together we will overcome this. Individually I don't think we stand a chance.