Standing in Line to Surrender

Usually, I don’t like standing in line for anything! I’ve always been impatient like that. I don’t even like being the first one in line!
Seems lately I’ve been standing in line waiting for yet another phase of my journey to accepting the fact that my type of alopecia is permanent. What? There’s another phase to this? I’ve accepted that my hair loss is permanent and also the way that I look without hair. It’s the unexpected things that seem to crop up with the type of alopecia I have that can get a little trying sometimes.
I’ve accepted so much since the beginning of my hair loss and have gotten through some rough times. That’s all I ever seem to talk about…acceptance, acceptance…acceptance. By nature, it’s what we do when we “hit a wall”, when we can’t go any further, when we have no other choice. What’s acceptance? Acceptance is the fact or state of being accepted or acceptable. That’s the dictionary’s explanation and for the most part, I think it’s a valid assessment. However, what that statement doesn’t address is all the work it takes to arrive at that “state of being”. I can tell you that my own experiences have proven that the road to acceptance was hard work and it’s a work in progress. You’ve got to stay on top of your game. Some days you come out swinging only to get knocked down to the ground but, you do get up.
And some days I get tired of having to accept the fact that I have alopecia. Some days I just feel content with “standing in line to surrender” to everything associated with having alopecia. Having alopecia can come with a lot of baggage such as the negative social stigmatisms, emotional and self-esteem issues and then there’s medical aspect of it all. And for some of us, we are not physically sick in the way most people make the association with diseases. I feel that puts us in a strange position sometimes. I’m finding out that there is no straight line to acceptance. There are peaks and valleys along the way. I realized that some days I’ am not going to feel good about my “acceptance” all the time. This is not a “woe is me” rant about how hard it is to have alopecia. I’m just keeping it real! I don’t feel good about the fact that I have alopecia everyday! I’m human!
I admire and respect all the men, woman and children I’ve met and spoken to who have had this disease all their lives. I think of all the different phases of their lives they’ve gone through and how they handled all those moments that their alopecia comes into question. Losing my hair at age 46, I’ve had to learn all those “little defense mechanisms” they’ve mastered in the course of their lives, all rolled up into one huge “crash course”! This is why I can’t beat up on myself for not “feeling good “about having to accept my hair loss every day. The point is that I do accept it, and with acceptance comes empowerment, education, sharing information, and this list can go on and on.
So for me, “standing in line to surrender” doesn’t mean “giving in” to alopecia.
I think it forces me to look at “what’s good about it” and focus on the positive, documenting, sharing information, working with medical researchers and most of all connecting with people like me who have real stories that I’ve become inspired and empowered by every day. The more we put our stories out there, the easier it will be for the next person who “googles” the word alopecia to put a face and head to this unpredictable disease alopecia.
Just this once…I don’t mind standing in line so much.

What Are You Staring At?

A while back I was walking through the West Palm Beach airport in Florida and spotted a bald woman walking in front of me. She was scheduled to take the same flight as me. At the time, I had a head full of hair. I remember thinking, “Did she choose to look like that? How could she walk out the door like that? I would have covered up, worn a wig or something. “She appeared to be healthy and was dressed attractively. I also remember feeling sorry for her. I just couldn’t imagine having to walk around in public like that. I assumed then that this had to be her choice... I pictured her to be an “artsy” type of person…you know the type…folks that march to a different drum than everyone else…creative people that don’t mind calling attention to themselves. How narrow minded of me to have these thoughts.
Since becoming an alopecian, there are times I find myself becoming agitated when people stare at me the same way. I’ll even become angry and wonder what they all find so amusing that they are unable to take their eyes off of me. Are they just staring at my strange fashion sense when looking at my colorful head wraps?... Or are they staring today because I have long curly hair and yesterday I had a sassy looking short hair cut? Maybe they are thinking that I’m some “backwards chameleon” looking to get attention on a busy work day morning. Nonetheless, I get agitated and sometimes grow weary of the stares. Sometimes I get so angry that I think, “I’m just going to freak them all out tomorrow by going “topless”, meaning nothing on my head that is!
Recently, I thought of the lady in the airport. Wow, I used to be like the people that stare at me. I’ve been so hard on those people, always wondering why the hell they were looking at me. I would get so angry at their curiosity.
Now that the shoe is on the other foot I see things much differently. People are going to stare and wonder. It’s only natural to do this if in the mundane routine of their day, they see someone or something that is different. With the type of alopecia I have it is sometimes impossible to put on a wig or hat to blend into the crowd.
AND…How about this novel idea? Maybe they think my bald head is beautiful!
Trying to control how people react to me is a waste of my time and energy. It serves absolutely no purpose to do this. That’s way too much weight to carry on my shoulders. I have enough baggage in trying to deal with the ramifications of protecting the thinning skin on my scalp from the heat and cold environments. For me, it’s about perceiving myself in a positive manner. Everything else is conducive to that very thought. I need to rely on my own voice of integrity in order to turn that negative energy I was feeling into a positive one…But, how does one go about doing this in a society that views having hair as a sign of health, beauty and status? I believe different answers to that question exist and the answers are as different as the individual posing the question. For me…, BE HEALTHY! I’ve decided to love what’s left of my body. There’s so much more to my physical being than my hair. As far as what I possess inside of me, well there are so many layers there, they are too numerous to mention, lots of which I have yet to discover.

Many of us don’t realize how much we hide behind our hair every day. It’s what frames our face. It makes us feel good especially when each strand is laying just the right way.
Framing my face still seems like the natural thing to do some days since I wasn’t bald all of my life. So, sometimes I overcompensate by wearing colorful head wraps, makeup, jewelry and clothes. It’s how I deal with some of my buried emotions regarding not having hair. I admire people who have had alopecia all their lives and appear to take not having hair all in stride. This is a learning process for me but I’m happy with just realizing that losing my hair in this stage of my life is just that…a learning process.
From time to time I may find the negative thoughts creeping back, that’s only human nature. Being able to put things back into the proper perspective is not always an easy feat for some of us. Maybe, I will learn to master this skill, hopefully to perfection. If not, I’ll just be content at being, “human”.

New Philadelphia Alopecia Support Group

THE PHILADELPHIA ALOPECIA MEETUP GROUP

Crowned Regal, Founder of CROWNEDREGAL.COM has formed a local alopecia MeetUP group in Philadelphia dedicated to offering support and resources for people who have hair loss due to the autoimmune disease alopecia. The group was founded on December 1, 2008 by Annette Moore aka Crowned Regal. It's purpose is to provide face to face meetings for people with alopecia in the Philadelphia and nearby surrounding areas. Ms.Moore has plenty of experience regarding this disease. She knows first hand what issues "alopecians" are faced with on a daily basis. She was diagnosed with two forms of alopecia in 2007. She also brings with her, experience as a motivational speaker. Her story was recently featured on a local ABC affiliate television station and is dedicated to spreading awareness to alopecia through her official website, crownedregal.com, YouTube videos, awareness workshops and events and now as the founder and organizer of the Philadelphia Alopecia MeetUp Group.
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