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Mari's TTM Story
I have had Trichotillomania (TTM) since I was eight years old. As of the year 2000, I have been pulling the hair from the crown of my head for thirty years. It took me six years to actually form my first bald spot. At age fourteen I was finding ways to disguise my pulling. I was forever cleaning up the hair piles on my bedside, styling my hair to the side, wearing scarves and using various hair-holding accessories. By age seventeen my mother noticed my bald spot and suggested a hair transplant and by age twenty-seven I could no longer wear my hair down. I had to wear a ponytail to hide a bald spot on the top of my head which was the size of a small bread plate. I knew that TTM had a name, I knew what it was but I was powerless to stop it. In 1990 a friend pointed out an article on TTM in Glamor magazine. This article gave a reference to a doctor in Houston who was involved in some medications testing for folks with TTM. I signed up and began taking 80mgs of Prozac daily for three months. I stopped pulling but the side effects of the this medication were devastating and these side effects lasted for several years thereafter. Soon after the study ended I began behavior modification and when I completed that course and the urges began to surface again - as fiercely as before. In 1998 I was about to turn to medication again because I was pulling so much. I was so ashamed of myself. I was strong! I could "just stop"! I had willpower. I had quit drinking, smoking, biting my nails, I could make myself stop pulling. I just knew it. I was in therapy during this time, I used my behavior modification techniques (wearing hats, Band-Aids on fingers while reading etc.) but nothing was working. The urge to pull was tremendous. I decided that I would endure medication again. I told this to my therapist and she disagreed with my idea. I needed something else but we didn't know what. Luckily my dear friend Bob in WV found Amanda van Rensburg's wonderful web site which had information about a diet she called the John Kender Diet. Instead of going through the horrors of medications again, I decided to try the John Kender Diet (JK Diet). In three months my urges had vastly diminished, I was able to resist pulling and my hair was growing back. Now, I have been pull free through various techniques in my thirty years of pulling so I was not convinced that diet would really help in the long term. (Even though I have always espoused diet as being the major link to most of our illnesses today.) However, now that I have been on the diet for over two years, I can honestly endorse the JK diet as having helped me a great deal. I thought giving up certain foods would be hard for me but it was easier than giving up alcohol, smoking and nail biting. Actually changing my diet and living consciously have not been that hard at all. What was really hard was realizing that the adapting my diet was not the end of the road. After I had given up sugar, caffeine, and other foods I loved, I realized that I had to change the way I lived too. Though the JK Diet helps with the urges, it cannot help with those idle moments when I find myself talking on the phone or when I am reading a book or watching TV. I find I have to really be present in my life and always pay close attention to what choices I am making. I choose what I eat and what I do with my time very carefully now. This is something I had not done in the past. Let me explain what I mean by living consciously: Living consciously, to me, means that the JK Diet cannot be everything to a person with TTM. A person with TTM must always be Awake and Alert and at full Attention (The Triple A) as well as watching her/his diet. Living consciously means we cannot sit down to watch TV or read a book without having something in our hands or on our fingers. For me, I must always have my hair journal by my side. In this journal I account for every hair I pull because every hair matters. I am conscious about every hair I pull. If I allow myself to be undisciplined, as it were, I will always pull. If I am not paying attention to the present, to every moment of my life, I will pull. TTM is an impulse disorder and I will pull if I am not always Awake, Alert and at full Attention. I must not just say to myself, "I will not pull." I need much more that. I must write down in my hair journal everyday: "I will not pull". I must use my willpower to stay focused on the present. Willpower will only help me here. I must count the hairs I pull every day. I believe that one of the reasons that some TTM-ers are truly pull-free is because they account for every hair. They love every hair. They don't say to themselves, "I will pull this one, it doesn't matter." Every hair matters! These success stories are about real people who have vigilantly stayed in the present and remember every day that they cannot be idle or pull even one hair. Like recovering alcoholics, they live consciously every day. If I find that I must pull for whatever reason, I will write it down in my hair journal. I write why I had to pull it. I don't beat myself up about it. I account for every hair without judgement. Living consciously to me is to refuse to go into a pulling trance again. If I find that my TTM is alive and kicking (I know this if I find that I have pulled without even realizing it. I just see the hair on the ground or in my hand before I could stop it.), I will take vital steps to ensure that I am not alone and my hands are not idle. I utilize the Triple A! If you want to read a great book about waking up and living consciously, I recommend Anthony DeMello's book, Awareness. His book changed my life. If you are not a book reader, I suggest watching Oprah. Oprah Winfrey has a great message! This woman is awake and living consciously and teaching it every weekday on her show. So, for me I owe every bit of success with TTM to my support network, to the wonderful diet developed by John Kender and living each day consciously. This continues to be hard but rewarding work. Lots of people looking desperately for help with TTM will want to hear that it's the JK Diet alone that has helped me. People ask me all the time, "Is it really just diet?" And I say, "No, the JK Diet is just part of it." I like saying, "Diet is to pulling as self esteem is to parenting". Yes, parenting has something to do with your outlook on life, but it's not everything. Diet has something to do with reduced urges but it is not everything. The biggest thing about having TTM is living consciously! There is no cure for TTM to date. For right now people with TTM have to be Alert, Aware and at full Attention at all times. Lots of people have great stories about how they relate to TTM. Here are some: John Logan writes about Acceptance & Trichotillomania. This page includes the The Five Steps of Trichotillomania by Cheryn Salazar. There are other success stories on this page too. They have much wisdom to offer. Learning about TTM, living consciously, getting support and loving oneself - no matter what - are the keys to me. My Love, Scott, has asked me one day, "What gifts has TTM brought to your life?" Now, there's a question! I have always looked at TTM as a curse, a scourge, a trauma - but a gift? However, I have had a think about what he asked and this is what I have come up with: Over the past thirty years I have felt so unworthy of attention and affection because of my baldness. I have recoiled from many experiences because of it, like swimming, going out in the rain, or going to get my hair done. TTM really made me feel like I was unworthy, ugly and unwanted. I had to get a handle on it. My search for personal peace and the JK Diet helped have been gifts in that they have shown me new ways to live and how to take care of myself. I have met so many wonderful people and I have had an opportunity to share my experience, strength and hope with them. What a gift it is to meet people who had lost hope at ever managing TTM and introducing them to new strategies. Many new doors have been opened to me thanks to TTM. What wonderful people I have met. I have learned so much from them. The gift of courage is one. So many stories I have heard about courage and fortitude. If it weren't for TTM, I may have never looked beyond my appearance at all. Maybe who I was on the outside would have been the only thing of major importance to me. TTM has given me an opportunity to look at myself from the inside out. Having TTM lead me to feel so ashamed and ugly on the outside and now TTM had challenged me to see myself from the inside, on a soul level. TTM challenges me to see myself as beautiful - no matter what. Because of TTM, I had to look at the inside first. "Who am I really?" "What do I bring to this world?" Would I have ever stopped to behold my good qualities, my wondrous soul if I didn't have anything that stopped me so dead on my tracks as TTM has done? Having TTM means that others have secrets too. If I could so cleverly hide my flaws, then I imagine that others can do the same thing. I feel more compassion for others as a result of having TTM. There are many gifts of TTM as indeed any challenge given to us. It's up to all of us to look beyond the disorder of TTM and our other flaws to find where these flaws are leading us. TTM and other life gifts and traumas have brought me to a state of surrender. You can't face this disorder alone and you can't hide from it either. Because of my experience with Prozac, I have also learned that there is no drug to cure one's ills. You just can't sit back and take pills. You have to be proactive and be a partner in your healing. Being vigilant, being aware of the whole of life has helped also. I have made a list of the books I read. These books catalog my search for wholeness and happiness. All of these books have helped me tremendously. Let me add here that books are useless unless you put their wisdom to the test. Rosemary, my therapist who has helped me greatly along the way said that "you must have experiences". It won't do you any good to just read books and talk about it in therapy. You have to get out and live! With a healthy diet, lots of exercise and a good guide (For you, this can be a therapist, a support group, or close honest friend) I have been able to change my life one day at a time. I have learned to discover the value of being awake and living in each precious moment. I believe that one must look beneath the exterior of every human being and every experience and search for its essential truth. I can thank TTM for this insight. Collectively we have many experiences to offer each other. Here are some websites that may be of interest to all of you who have just begun your journey to understanding yourself and how TTM affects you. Visit the TTM Resource Page! Also, support the Trichotillomania Learning Center by buying and ordering your TTM books at: MyCause.com. Visit my Healing Page for tips on spiritual well-being and don't forget - Love Yourself! My life is a total experience of which TTM is a part. I lovingly include TTM as it still has much to teach me. If it didn't I wouldn't still have it - I don't think. I pass on my experience, strength and hope to you. Anything I can do to help you on your journey, please don't hesitate to ask. I am here to assist. Mari
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