VERMEER.

The Girl With The Pearl
Earring, Vermeer, 1665

I have been told many times throughout my life that I look like The Girl in this famous painting by Vermeer; the hat (or headpiece), the seeming lack of hair, no eyebrows.

SILHOUETTE.

NOV 2012 with my cats

THE MOTTLED LOOK.

2009

I remember taking this image of myself a few years ago. My hair was falling out/growing back, and it looked 'mottled' (as it normally does) like the pattern of cow spots. When someone with Alopecia loses their hair, it falls out from the roots. Alopecia is an auto-immune disease/disorder. The body essentially considers the hair a foreign body and selectively rids itself of it; eyelashes, eyebrows, leg hair, etc... [For me, it is painless]. Even when a head with full hair growth receives a close shave, you can still see the hair stubble (and the roots). When I shave my head, you can see patterns of growth and loss, like a Rorschach. I find that this can be intimidating and confusing for someone who does not understand HOW Alopecia can look. [If I would not shave this hair I would look like the Crypt-Keeper from Tales From the Crypt, ha]. Not everyone who has Alopecia has the same hair patterns. They are like fingerprints on the scalp, and they constantly change and shift like clouds on a windy afternoon.

COPING.

COPE:

1.  To contend or strive, especially on even terms or with success.
2.  To contend with difficulties and act to overcome them.

"Living with hair loss can be hard. There are many things you can do to cope with the effects of this disease, including:

• Learning as much as you can about the disease.
• Talking with others who are dealing with the disease.
• Learning to value yourself for who you are, not for how much hair you have or don’t have.
• Talking with a counselor, if necessary, to help build a positive self-image."

Everyone has their own way of coping with their own personal adversities...there is not one specific way of coping that will work for everyone. This should be something quite obvious when read...though in practice, judgments are often made (including myself making them sometimes), as to just what method of coping should be appropriate. "Why don't you just....take off your hat in public?" It's so easy to say. TAKE IT OFF. It's so easy to imagine myself freeing myself from the chain of a hat or any supplemental headpiece in public situations (and yes I understand that this is a chain I put on myself). So why is it so difficult? I've lived with this for MY WHOLE LIFE. I've attempted so many methods of trying to HIDE my Alopecia, like its something to be ashamed of. CHANGE that from within, Emily, there is nothing to be ashamed of. Hey, hide your lack of hair so that people around you have an easier time to look at you and so that you VISUALLY fit in. It's ingrained in my thoughts. It's ingrained in my culture. I want people to look into my EYES when conversing with me, not at my bald head or my unnatural and wigged out hairline.

2009, Self-Portraits

I tend to ignore my Alopecia 99.9% of the time. I make believe it does not exist. I do not want to have Alopecia. I don't want to lose my hair. I never identified myself with it or by it, but I can't get the struggle out of my head and  I am constantly and continually being shaped by it. Alopecia taught me about judgement. Alopecia taught me to be a better more accepting person. Alopecia taught me to know and understand more about a person than what meets the eye; to enjoy a person first and foremost by WHO they are, not by life circumstances out of their control. I learned this at a very young age. I killed them with my outgoing, fun, enthusiastic personality. I DON'T WANT TO BE KNOWN AS THE BALD GIRL. THERE IS SO MUCH MORE TO ME THAN THIS. So I hide it. I don't give people a choice on how to define me, or I at least don't give strangers the option to define me by my disease. I often wonder WHO I would be if I had no Alopecia to begin with. I always come to the same conclusion: I would not be me. I HAVE Alopecia, and I will ALWAYS have Alopecia. There is no cure.

The problem is that my adversity is so visually distinct. Seeing a bald woman may make some people uncomfortable. It may intrigue some people. It may turn people on. It may turn people off. Either way, a bald head will certainly stick out in the crowd. Do I want to stick out? As a child, I delighted in my baldness. As an adult, I am ashamed by it at times. Many adults are cruel. More people know about chemo and cancer then Alopecia. I don't want to be asked if I am sick. It's irrelevant in most social situations. ALOPECIA HAS MORE PSYCHOLOGICAL EFFECTS than PHYSICAL. I lose my hair. That's it. I don't want to be reminded of my Alopecia every day when some boisterous person decides to ask me about my 'new MTV haircut'. I don't want to be asked how my chemo is going. [I have close family members who have both DIED and are in remission from cancer, I feel like a fraud not having cancer, yet receiving pity for it]. About a year ago, I was walking around in the Home Depot (wearing my signature black knit cap) and a woman approached me. She asked me something along the lines of, "Excuse me, I may be being nosy," (YES YOU ARE...I thought), "...but do you have cancer?" I was bothered. I was minding my own business shopping and whatnot. I found it to be such a rude and irrelevant question. "I have Alopecia," I told her. She explained that she had a relative who was going through chemo and she was scared, asking for advice. I felt like the weight of her world had crashed onto me. I felt like crap for being offended. Acceptance is helping those who need support. I am stronger than I allow myself to be. I am only weak because I allow myself to be.

It's all about perception.
It's ALMOST comical to me, that the self-worth of a human is largely and outwardly determined so much by the WAY WE LOOK. BEAUTY does not last forever. A kind heart and a warm personality can last an eternity.

INTENT.

Hi world. My name is Emily. I am 29 years old living in a small city in Maine: USA.

I have Alopecia Areata. Somedays I wake up proud. Somedays I wake up embarassed and ashamed. Right now, I have very little hair.

In Nicaragua March 2011

With this blog, I hope to learn to accept myself better. I want to help others understand Alopecia, and what it's like to have it. Maybe I can help myself. Maybe I can help someone.

I started this blog as a release from this...autoimmune disease. I will have this incurable disease until I die. It is like a game for me now, to hide my "true self". This does not make the task of "figuring out who I am" any easier. This blog is acceptance after years of denying a part of me that has undoubtedly shaped every ounce of my being since I was first diagnosed with patches at age 4. Alopecia showed it self in my fourth grade school pictures when I wore a wig and all the kids made fun of me. I lost it all completely. I was free-spirited and delighted in correcting people that I was not a 'young sir'. My hair grew back in fifth grade. I lost it partway through the 8th grade. It grew back. I lost it all again starting my junior year in high school. I was a tomboy. It fell out completely in time for my senior year in high school. I wore a bandana to prom and in my senior pictures. It was ok; I was secretly known (apparently) as "leukemia girl". I went to college and got a couple real hair wigs over the course of a couple years to help me fit in; become 'more adult'; to help me in the job force. I had gone so long without maintaining hair that the very idea of gluing and taping was such a waste of my time...and not for me. [Could it be, and should it be?] I ditched the wig. I was uncomfortable. I was worried my hairlines looked unnatural. It felt strange. I switched to hats. Many hats. Knit hats. Baseball hats. Wool hats. Hats. And here I am 29, after almost three cycles of hair loss and regrowth and the longest period in my life without all my hair. Wearing hats.

This blog will be my thoughts pertaining to existing as a young woman in an American society that lusts for hair. As Alopecians know and one day understand, it's only hair. It could be so much worse.