I recently became involved in a book project about breast cancer survivors. Although I don't have cancer, those with Alopceia often are approached with that very question. The author invited me to participate in order to represent one of the struggles many women go through in dealing with this disease. I'm also thrilled at the fact that this book will help bring more awareness about this condition. It was very empowering to write my story and recall the stages I went through on my journey. Enjoy!
It was a typical morning about 3 years ago but it was a day that began the interesting journey to where I am today…..
I woke up, yawned, stretched and rolled over. As I tucked my arm behind my head I felt it: a small bald patch, maybe the size of a quarter at the nape of my neck under my hair. “That’s strange” I thought, but didn’t give it much more consideration. A few weeks later when I went in for a trim my hairdresser felt it too. She took a look and said “You have Alopecia,” (I hadn’t heard that word before yet little did I know it would soon become part of my nearly daily vocabulary). She told me I could get a few cortisone injections and my hair would grow back. Why bother? I had a head full of thick, long, wavy hair and one spot wouldn’t be noticeable.
A few months later I began noticing other bald patches. Now I knew something strange was going on. So I made an appointment with my doctor and again I heard it: Alopecia. He told me it was an autoimmune disorder in which the body mistakenly attacks its own cells, thinking them to be foreign invaders. In this case the hair follicles are the victim. It affects about 1% of the population. He also told me there are no know causes or cures and there was nothing he could do for me so he sent me on my way. Not satisfied with his answer I sought out another opinion. This time I went to a dermatologist who confirmed this diagnosis. There were now about a half dozen bald spots on my head, some growing quite large, maybe 3 inches in diameter. I wasn’t going to let this condition win so I waged a full on battle with my body. I endured the monthly cortisone injections (about 8-12 painful pricks per bald spot) and UVB laser treatments, slathered my scalp with Rogaine twice a day, gorged myself on vitamins and protein shakes. I was doing everything I thought I could to conquer this and grow my hair back. The cortisone worked, but only to a certain degree. Sure there was hair growing where I had the injections (kind of like a doll, whose hair is in neat little round plugs) but other bare patches were showing up. This went on for about 4 or 5 months.
I had become very creative in styling my hair or wearing headbands to hide my condition so I didn’t look that different on the outside. But on the inside I was beginning to fall apart. I was essentially in panic mode but trying so hard not to show it. As a yoga teacher, I prided myself on being an exemplary model of perfect health. I ate right, got plenty of sleep, exercised and tried to maintain a positive outlook. How dare my body betray me? It was especially devastating given that I’ve been a performer for most of my life, often taking a great deal of time creating elaborate hair do’s and make up for various roles and shows, as well as taking pride in my appearance. Then there was the fact that as a woman, so much emphasis is put on our looks, with long, flowing locks symbolizing youth and beauty. I felt hurt, angry, scared, hopeless and ugly. I blamed myself a lot of the time, wondering what actions in my life, whether physical or karmic, I had done to cause this. I remember one horrible moment in the shower after washing my (remaining) hair, heaving sobs of hysteria with huge handfuls of hair in each hand. At my darkest moments I even wished I had cancer so then at least I’d have an explanation for what was going on and could blame it on the chemotherapy.
But the fight continued. Since I am self employed, with no medical insurance, my treatment was getting costly, not to mention emotionally draining since there was no real progress or change. In a moment of rational thinking I realized that maybe there was a better way. I began to have second thoughts about all the chemicals and hormones I was subjecting my body to and decided to look for a more natural, holistic approach. Ayurveda is the medical system that has been practiced in India for thousands of years. Like Traditional Chinese Medicine, Ayurveda treats the whole person, seeking to create balance and health rather than address only the symptoms. Through an Google search I found a doctor in India who had success in curing many patients of Alopecia. So I ordered his formula which consisted of daily herbs and oils to rub on my head and weekly mud packs. This treatment seemed much gentler and resonated better with my beliefs about well being. And it was a lot less expensive! I became religious about applying these concoctions while stating mantras of my hair growing back quickly and profusely. I prayed to anyone out there in the Heavens who was listening to restore me to perfect health.
4 months and nothing. No new hair growing back, no slowing down of my hair loss. With the 10 or so scraggly strands of hair left on my head I felt like I looked sick. My eyebrows, eyelashes and body hair began to fall out too. My boyfriend had been very supportive through this entire process, telling me I was beautiful and he still loved me no matter what, trying to make light of it by saying “It’s just hair.” I didn’t feel beautiful, feminine or even human. So with a feeling of defeat I told him “I’m done, cut it off. Cut it all off. It’s gonna fall out anyhow”. He chopped the flimsy bits of hair and I sadly watched them fall to the ground. This was the beginning of learning to surrender to this condition but I still had a lot of internal work to do before I was ready to really accept what was happening to me.
By this time I had resorted to wearing wigs. “Wigs are only for old ladies” I thought. I felt ashamed, like I had to hide. It was frightening and embarrassing going into the wig shop, having to reveal myself, wondering what others may be thinking. In reality I was hiding behind this illusion I was trying to keep up, like nothing was wrong, nothing had changed. Once when I was teaching a yoga class and began getting quite warm, I started taking off my outer shirt and the wig partially came off with it. With a room full of students too! I panicked and scrambled to get it back on, hoping no one noticed. Though this moment was scary it brought me to an important realization: I can’t try to hide anymore.
Shortly after this incident I showed up to teach class with my new do: a sexy, dark red and black bob cut, short in back, tapering to face-framing points around my chin. People were so surprised. They loved this new look! They asked me “What inspired you to make such a drastic change?” “It’s a long story” I said, “I’ll tell you all after class.” I had worn my hair long for my entire life (except that horrible perm back in the 80’s when I was 12) and had never been daring enough to do something this extreme. I felt bold and flirtatious, the best I had felt in a long time. But this wasn’t only from the stylish wig. It was from having the courage to be truthful and real about who I was and what I was going through. As my yoga students circled around after class and I told them about my disorder, I felt a deeper connection and understanding between us. As I continued to open up and share, others began to do so too. My compassion for myself and others grew.
Often times I would look at myself in the mirror, completely bald with no brows or lashes and not even recognize my reflection. I was starting to get used to the new “me” but I didn’t feel the outside matched how I felt inside. Before, while I was losing my hair, I would tell myself “My body is falling” apart and that’s how I felt. I was weak and tired, physically and emotionally drained most of the time. Now that I had learned to accept that I was perfectly fine, my body was just choosing not to grow hair, I felt physically strong and healthy. The power of the mind truly is miraculous!
Growing tired of the mess and hassle of applying fake eyebrow tattoos every day I decided to get them done permanently. After that at least I felt the image looking back at me in the mirror was human, not some strange otherworldly alien. I’d throw my wig on (with double sided tape for security!) and go about my day and those who didn’t know me were none the wiser. They’d even asked “Where do you get your hair done?” and here was a great opportunity to educate another person about Alopecia. So I would briefly explain my story and in doing so found more strength and empowerment. Not having to shave, wax or pluck anymore was an added bonus. I was beginning to look on the bright side, to see the gifts in this unique situation.
I now own about 10 wigs and my collection will most likely grow. It’s fun to be able to change my look in a few seconds on the special occasions I feel like having hair. Although more often than not these days I go out in public without a wig and just wrap a scarf or bandana around my smooth, shiny head. I get looks of sympathy, some even asking me “Are you going through treatment?” and although I don’t have cancer people often think I do. My look represents a stage many go through after chemotherapy and radiation in their battles with cancer. My deepest sympathy goes out to those who are fighting that war and all the brave women featured in this book.
The most rewarding part of this journey has been my own growth and the amazing support of my loving family, friends and partner. I haven’t let this condition run my life or stop me from doing the things I love. I’ve begun to use my unique look to challenge the stereotypes of feminine beauty. I am educating people about this autoimmune disorder. I’ve gained a greater appreciation of what lies inside, the beauty of the heart and soul. I’ve learned how to be at peace and accept whatever difficulties may arise in life. While I still hope my hair does grow back one day it is anyone’s guess whether or not it actually will. But regardless of that fact, I can say that I am strong and healthy, truly happy with who I am on the inside as well as the outside.