Volunteer Spotlight: Cindy Knickerbocker
Interviewed by Jennifer Raikes, TLC President
- Reprinted from InTouch Issue 47
- © Trichotillomania Learning Center, Inc. 2008. All Rights Reserved
Cindy Knickerbocker calls Boise, Idaho home. She is a single parent of two beautiful girls, Savannah and Paxton. She works at the National Interagency Fire Center (the Forest Service) and is an avid paper crafter.
Cindy is the recipient of the 2007 "Christina Pearson Award" honoring her many years of dedicated volunteer work for TLC. The award dedication reads:
The Christina Pearson Award
presented to
Cindy Knickerbocker
For her tireless dedication and commitment to benefit the trich community,
including such efforts as:
The great initiative and energy she has shown in creating and
organizing the silent auctions and
"chance to win" drawings at our conferences and retreats -
seeing a need and thinking of a way to help fill it;
For the unique, fearless ability to drum up interest in rare objects
such as an origami ball, a trich Barbie, or kids' art projects
and auction them off to a crowd, all for the good of TLC;
For serving many years on event committees, facilitating workshops,
donating handi-crafts, and inspiring friends to donate for the cause.
Less tangibly, but not less importantly, she has been a
fixture in the community - a strong, loving, emotional and
brave personality at our events, creating a true
sense of family for all.
We want to take this opportunity to recognize and thank Cindy for her tireless enthusiasm, creativity and heart she brings to TLC and our community.
By the Trichotillomania Learning Center's Board of Directors
Tell me a bit about your history with TTM?
I started pulling at 10. Total secrecy. Never shared it with anybody until I was probably a late teenager. I confided in a few people, but not my parents. In 30 years I could count on one hand the number of people I told. My dad went to his grave without ever knowing. Though I think he sort of knew. I remember him yelling at me once when I was in the bathroom, "Quit pulling your hair out and get out here!"
How did you come to be a part of the TLC community?
When I first contacted TLC, I had just recently become a mother - that was a big step for me because I put off having kids for a long time because I was afraid that they were going to be hairpullers. (And that is what happened… but more on that later.) I was just ready to pursue doing something for me. Give it some attention. Confront it. Quit being in denial.
My mom sent me an article out of the newspaper (Dear Abby or Ann Landers). She probably sent it in 1990, but I held onto it for 2 years before I could get up the courage to call. I finally made the phone call and talked to Christina on the phone and learned, of course, that I was not alone and that there are many, many people who are afflicted and that there was this Retreat! I was gung ho - I was very excited about meeting other people since I had felt so isolated for the thirty years until then.
How did you start volunteering for TLC?
Christina had an Open House at TLC's office in Santa Cruz, when I was living in Utah. I flew down for the Open House - I actually slept in the office in the room where they held support groups. I just felt such a connection to TLC that I wanted to do anything I could do to help. I felt like I couldn't just sit there when so much needed to be done. I actually started by cleaning the bathroom! I slowly started helping organize the office. After that, I told Christina, "I want to help. You operate with little to no resources - you don't have a lot of support. If you ever have a need that I can help with long-distance, let me know."
What kind of volunteer work have you done since cleaning TLC's bathroom?
Christina invited me to be a part of organizing the TLC Retreat that year. I've served on the Retreat committee for 6 years. And I began thinking how to raise money for TLC. I thought of a silent auction. I said, "I've never done it before, but I certainly can learn." We just did it. And we couldn't believe how well it turned out. I don't even know the dollar amounts... but I've done the auction at the Retreat every year since. And then we started at the Conferences, too. Laura Pappas was my sidekick. Then we incorporated the "Chance to Win" - it started as just a 50/50 raffle. Whoever won, got 50% of the pot. Dorothy Digby won and it paid for her to attend the retreat again the next year! Now we offer prizes instead.
What do you get from volunteering with TLC?
Self-satisfaction. Really it is. TLC just does not have a lot of resources and I don't have a lot of resources to support TLC. I am a single mom, I work full time I have a very full plate of my own. I don't live close. But there are things I can do.
The best moment was when I got my scrapbooking group together to do an auction for TLC, 3 yrs ago. I am a moderator for a Yahoo Group called Idaho Scrappers. Members consist of scrapbooking people throughout Idaho. Every year, we have a "scrapbooking for charity" event. We meet for one night in Twin Falls, Idaho and all the members create scrapbook layouts or handmade cards and we hold silent auctions for those items. We also solicit donations from the scrapbook stores throughout Idaho to make up raffle baskets.
TLC was the beneficiary 3 yrs ago. I nominated TLC anonymously through a friend who knows about my trich. When the nomination came in, one of the other members came out and said, "I DO THAT!" and others started saying, "I have a sister who does that!" "I have an aunt who does that!" So it had that little domino effect -- They could find TLC as a resource when they wouldn't have otherwise known TLC existed. At the end of the event, we were able to send Christina $2,000 out of the blue for TLC. It nearly killed me not to tell her, but I wanted to hear her surprise when the check arrived!
Any advice for people interested in volunteering?
Do it. Do whatever you can do, even if it is putting stamps on flyers and sending them out to your community. There are a lot of different things you can do without being at TLC or waiting for an event.
I'm still anonymous. I'm in the closet. (The only way I would be out there is to go on Oprah! For Oprah, I would do it.) You just need to reach into yourself and see what resources you have available. What can you do? It might just be a tiny thing. It doesn't matter how big. Whatever you can muster, it would be appreciated.
The biggest thing is to carry it out, though. Don't come up with an idea to let TLC implement - write it up and discuss it with TLC and then implement it yourself. TLC will support you in the effort, but it takes a LOT to pull off the events TLC holds. There are a lot of tiny details. Don't give them any more!
One area we need help with is getting donations for the "Chance to Win" -- getting donations of big ticket items that are appealing to all, like a digital camera or an iPod. I don't love soliciting donations. I'm not too good at it. If you are, we need you! If you're not too shy, we need you!
Do you have any thoughts about being a parent of a child with TTM, as well as a puller yourself?
I am a parent of a child with trich and another child who is a skin picker. Despite the fact that I am a hair puller, it totally drives me crazy. Savannah started pulling when she was about 8. It just made me ill. By that time I was fairly educated, I knew it didn't have to do with what I had done as a parent... but I was in total denial. My ex-husband, who was not a big supporter of me with my own TTM, he's the one who actually called and said we really need to get Savannah some help. He'd already begun calling around... that blew my mind! He wanted to get her some help. So we did.
We found a psychologist. They went through and did the "Hair Pulling 'Habit' and You" book- she and I did it together. And then Paxton started showing signs of chewing on her nails and skin, and the worst part is, I found myself saying, "I wish you would quit doing that!" I was turning into one of THOSE parents. How's that for a twist! And I still catch myself doing it. It is so hard to accept the fact that your kids have a problem. Now, I toss Savannah hand toys and Paxton band-aids. But I don't always use them myself - how's that for a hypocrite. I care about my kids more than myself.
Why is the Retreat special to you?
Because of the camaraderie - the sense of community. It is the only place that I can go and just have no inhibitions. I take my hair off and I don't have hair on for four days. I can go out in public and it is the only place I can do that. It has become one of my favorite things to do. And now that I have brought my kids for the last three or four years, I have created a monster! What once was mine is no longer mine! They have told me that if they have to sacrifice any vacations to go to the Retreat, that's what they want to do. It means that much to them.