Tag Archives: Children’s Alopecia Project

wig.

My little yogini and I outside of Stanford Children’s Hospital after teaching a little yoga session for the Children’s Alopecia Group of Northern California. “Yoga teaches us to cure what need not be endured and endure what cannot be cured.” B.K.S. Iyengar

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Alopecia areata and anxiety. One small spot or handfuls of hair falling out in the shower… so very traumatic and an instant source of stress and anxiety. Since it is inflammation of the skin, there’s also that soreness of the scalp that occurs before shedding, yet another source of stress and anxiety with the anticipation of a new spot appearing where it’s achy. I see my daughter scratching the back of her head now and then… and I can’t help but to feel sadness and guilt for passing this autoimmune disorder to her. However, I’m reminded that as difficult as this experience has been, it’s been a beautiful, transformative one as well. I know deep in my heart that my daughter and I will inspire others as we continue to choose to not suffer from this disease, but embrace it as our life’s journey.

PLATO

“…a battle you know nothing about. Be kind. Always.”

It has been a little over a year and a half since I began wearing a wig. At first it was really fun… I had a bald/shaved head for almost a year and suddenly I had a bob. I started to feel like my old self. Then one day I received a lovely handwritten letter from a guest at work. She had taken the time to reach out as she noticed I was wearing a wig. She shared that two of her girlfriends were currently suffering from cancer and that she was praying for me and my babies. She ended the letter with a polite, ‘excuse me if I am wrong, but I had to let you know that you have been in my thoughts and prayers since I met you.’ I was very touched by this, but also didn’t know if and how I should respond. I decided to ask for my manager’s opinion…

I explained that I have alopecia areata and currently shave my head. I handed her the letter to read and sat awkwardly awaiting her response. After finishing, she looked up and said: “You know, if I were you, I’d think about getting a better wig.” I was stunned, like I had been punched in the gut. I was in shock and disbelief. I somehow composed myself and kept the tears from flowing and asked what made it look unnatural? I thought that would give her the chance to realize that her comment was rude and inappropriate. I gave her the opportunity to redeem herself. Instead, she looked up examining my wig and said: “Well, it’s the part… and it doesn’t move right… and there’s a shininess to it.” I could feel my face getting red, my heart racing, but took a breath and replied: “This is a new wig. It was $800 and human hair wigs are thousands of dollars. With two babies, this is what we can afford right now.” She could tell I was upset, but still no apology.

As you alopecians can imagine, this comment hurt deeply. It angered me and I lost all respect for her. I shrugged her off as unkind and miserable, oblivious to others’ feelings as I witnessed many other situations where she put people down. I wasn’t going to let it get to me. In the end, they were just words from an ignorant person. Fortunately, shortly after I was able to move on to a better place and had the opportunity to address her comments. I accepted her apology. I recommitted to being very open about this disease for not only myself, but for my daughter. In a way I am thankful for this incident because it truly made me stronger. If my daughter experiences anything like this, I will share my experience with her. Otherwise, moving forward and focusing on all of the wonderful, compassionate people that have only provided love and support.

be-kind

I truly believe in the power of moving meditation – yoga! If you are struggling with anxiety and alopecia, I highly recommend the two videos by Dina Amsterdam: InnerYoga for Stress and Anxiety AM and PM found on Gaiam:

http://www.gaiamtv.com

Take good care. XO

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sesame.

First off…

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H A P P Y  N E W  Y E A R !

It has been awhile since I’ve written here. I logged in and it warmed my heart to see the views by country. Again, I don’t have any answers for the best way to treat this condition or how to cope with it, but I will continue to be honest and share my journey in living with alopecia. I hope you had a very happy holiday season and I wish you lots of love and light in the new year… and most importantly, I hope you always remember that you are not alone in your struggles with alopecia.

01.05.14

It has been almost six months since I lost my hair and I admit, alopecia still fucking sucks, (I empathize!). BUT it has been a blessing in disguise. I hope you see a shift in your outlook on alopecia and are able to embrace the life changing experience. Six months ago, I’d cringe when people would say: ‘it’s just hair.’ I understand that comment is meant to be supportive, but personally I then felt guilty, like I was being vain for mourning something superficial. Sound familiar? Or it was also hard to hear: ‘So-and-so (insert famous actress) shaved her head for that movie and looked great.’ Again, I know intentions are well and they’re trying to be supportive, but we did not choose this new ‘do and unlike celebrities, we aren’t getting paid for it! My best advice: Cry as much as you need to, a person has the right to mourn any loss. However, if you are dwelling too much, try really hard to remind yourself that hair is just one small piece of your physical being. It does not define you. Just as much as your fingernails, or skin, or size or any other element of the physical body does not define you!

jobee

I haven’t mentioned this before, but when my daughter arrived six months ago, she had a very full, gorgeous head of dark hair. I would gladly give it all to her again. During this transformative period, anytime I feel sad about my hair, I remember my dad’s words: if someone asked if you’d trade all of your hair for two healthy babies, you’d do so without thinking twice. Without a doubt. My two healthy babies are at the top of my gratitude practice. I feel fortunate. I have alopecia areata. I chose to shave my head. I have hair, it’s just not a full head of hair right now. Besides one insensitive comment from a total stranger, I have not been bullied because I have this condition – just the opposite, I’ve felt an abundance of support and love. I think about children/teenagers that struggle with this disease that have alopecia totalis or alopecia universalis. These conditions alone are so difficult and isolating, then throw the cruelty of their peers on top of that. My heart breaks when I think of their pain and suffering. A great non-profit if you are helping a child cope with alopecia:

childrensalopeciaproject.org

Here are some children’s books on alopecia and celebrating differences: Maddie: Teaching Tolerance With A SmileDestiny’s Purpose: A Young Alpaca Living With AlopeciaPrincess AlopeciaIntroducing Hairietta Hairison – The One, The Only MeThe Girl With No Hair: A Story About AlopeciaBecause of AnyaIt’s Okay To Be DifferentEveryone is Different: Why Being Different Is Great!We’re Different, We’re the Same

I-love-My-Hair-Sesame-Street-Green

My son was watching Sesame Street the other day and a song caught my attention: I Love My Hair. I looked it up and there’s a great story behind it:  A Sesame Street Writer Pens “I Love My Hair” Song to Empower Daughter.

I searched ‘Sesame Street Hair’ and was surprised how many videos there are on the subject. I love that they’re teaching kids to celebrate their hair and their unique style, but also wish there was at least one video on kids with alopecia.

and one more, but yoga related…

Speaking of sesame…

sesame oil

A ritual that I’ve added to my day: Oil Pulling. It’s an ancient Ayurvedic practice for detoxification. Two of the many benefits include: a natural remedy for skin problems and reduces inflammation. I believe diet/lifestyle changes have been key in my hair regrowth and it’s possible oil pulling has been a big part of it. Worth a try? Take good care. XO

snowyogi

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