My Hair Demons

I have been shaving off my healthy hair for six months now, and the thing that usually happens to me during the time that I shave it is the urge to grow it back. I enjoy being bald because I no longer fret about unhealthy looking balding areas and thin hair, but there will always be a part of me that wants to feel my hair. Other women I know who have shaved their heads have expressed feeling that maybe they don’t have the “peace” about it that I have…but what is peace? I think many believe peace is a warm and fluffy feeling with some sort of permanent smile plastered upon the face. That is not the peace I feel inside. My peace is acceptance that I have permanently lost my hair in many areas of my scalp, knowing full well that I could have another flare that will take even more hair from me and there is nothing that can be medically done about it. I have a peace that everything will be ok as a bald woman and that I look beautiful whether I have hair or not. This is my acceptance and this is my peace. But there is another side of me that will always want to grow my hair back. It doesn’t mean there is a lack of peace or acceptance, because I have also accepted that I still do have hair. I can live in both worlds…although the “bald world” is far less stressful for me emotionally. If I decide to grow my hair back, I know the consequences of such a choice. It’s bitter sweet at best. I can once again feel my hair, but how it will look and the texture of it will sadden me profoundly. It means constantly checking to make sure that my balding areas are covered and using a wide variety of products to make it look more full. Sounds like a lack of peace doesn’t it? It is a double edged sword and this sword cuts both ways. I see so many courageous women on the Womens Hair Loss Project Network who are faithful to do what it takes to keep the hair they have. I’m just plain chicken shit! I find it easier to keep it all shaved off and go out bald, than to stand in front of a mirror and attempt to have “normal looking hair.” I lack peace in that department. When I had hair, I could feel my blood pressure rise in the bathroom as I tried to make my hair look halfway decent. It would take hours of messing with it and then I was still not satisfied with the results. Since I also have non-scarring alopecia, I wondered if being out of the moldy house would cause those areas of my hair to grow back as well…but then I shaved my head again, there are the same areas of missing hair to contend with. I’m not sure what I will do at this point. The urge to grow it back is strong, and I guess by writing this entry I wanted to remind myself of the pain as well as the pleasure of having hair again. I don’t know if it is worth all the heart ache. Would I do myself a huge disservice by allowing it to grow? I know there are so many options for women who are losing their hair, from Derma Match that can be applied to the scalp, to wigs, toppers and hair systems. Yet all these options seem to pale in comparison to being bald. I find it hard to imagine myself applying something to my scalp to make it look like I have more hair and I find it equally difficult to imagine myself getting a hair system which is extremely costly and requires maintenance.

Hair demons are difficult to deal with and yet I continue to give them latitude in my thought life! If I do decide to allow my hair to grow back, I know that I will just end up shaving it off again during the next flare up of follicle death. I never know when the next flare up will come, but it usually comes once a year. Mold is a trigger to my flares, and with the mold problem corrected I wonder if I will have a flare this year. If my hair loss goes into remission it will be even more difficult to fight the urge to let my hair grow. There is only one draw back to being bald…not being able to feel my hair! There are so many drawbacks to letting it grow, yet the only reason for me to grow it is to feel it. I wish I had more resolve or strength to grow it back and accept that my hair is just funky, thin and balding. Instead I take comfort in knowing that I control whether I let it grow or shave it off and I continue to fight my hair demons with the hope that someday the urge to grow it back will be no more.

My Nurturing Husband

We all have our ups and downs when it comes to the struggles of being an Alopecian, and in my life, at the deepest core, there still is the deep root of being identified according to my hair. Although I came out of the “Alopecian Closet”, there are still parts of me hiding in there. It has taken five years for me to get where I am, and it will probably take another five before I have finally cleaned out the last remaining bits still left in that closet.

I didn’t come out of that place on my own though. It was my husband who knocked on the door five years ago, and asked me how long I would be in there. Full of gentleness and compassion, with conviction and concern, he didn’t push the issue…always staying close to that door, hoping that I would open it to him and share what I was doing inside. I would crack the door open just a little, and I could see his concern and love for me; but then I would close it again.

He wanted to nurture me. His desire was to care for me and love me through and through. During those times I opened up to him, he would lavish me with the uttmost respect and kindness, wanting to help heal the wounds of self-inflicted self hatred and loathing. He wanted to bathe me in his love and committment to me…but I had come willingly. I’m glad I did.

His favorite thing to do is to “bic my dome.” He finds it as enjoyable to bic me just the same as when he used to wash my long thick locs of hair. He loves taking his time, setting everything up, slathering me in shaving cream, and bic’n me with pride. I love feeling his warm hands full of shaving cream, his soft deep voice telling me his longings and secrets and his full heart ready to burst wide open because I “let him in.”

Do Men and Women Feel the Same Way About Hair Loss?

Do men and women struggle with the same issues emotionally when it comes to hair loss? I believe the they do. I asked my husband how he feels since he started to lose his hair, and this glazed over, pale look on his face said it all. Although I have been dealing with hair loss for the last five years, the thought that he could also now be dealing with his own loss has him stuck like a deer in the head lights.

My husband started to develop bald patches in his eyebrows, a quarter sized bald patch in his chest hair, and the hair on his head has started to shed quite a bit. My two younger children have experienced similar hair loss and we believe that they are also affected by the mold that we have in the house we are currently renting.

I wanted to understand what he was feeling about losing his hair, and it was so profoundly deep that he could barely bring himself to talk about it. He has accepted my hair loss and he has embraced loving me as an Alopecian woman, but will he be able to accept himself if his hair loss does not resolve itself? Will he begin to move away from me emotionally and bury his pain deep inside where I can not reach him? His hair is absolutely stunning and creates a softness to his face and features. It is natural for him to feel pain and anguish over losing it but my hope is that he will continue to stay open to me emotionally so that he can move forward with his life continuing to reach toward his goals, dreams and desires. Hair loss has a way of stopping these thing dead in their tracks for a time and the emotionally paralysing affects can bring us into a place of isolation, loneliness and despair.

I believe that men feel just as much torment over losing their hair as women do, it is after all a part of the human condition.

Shh!!! I’m Hiding!

For five years I have looked at having alopecia as something to be ashamed or embarrassed of. I often felt that horrible feeling but never really explored what it meant to me personally. What was it exactly that I was so embarrassed of? Was it the loss of my hair? Maybe that was part of it, but that wasn’t all of it. Losing my hair was a big deal, but does that mean I was vain? At the time I thought so. I hid it away, where it sat and festered like an angry boil, hot and throbbing…I began to hate myself for thinking I was vain. Loathing the very idea, that, as someone who has never cared about the appearances of others’, I couldn’t stand to look at myself. How did that happen? Was God bringing me through some test to reveal hidden vanity? I searched my soul, and yet I couldn’t repent. Was I in denial? I have always loved who I am, but now, my world was rocked by this fear that I was in fact vain! Why couldn’t I repent? I searched some more, and realised that it wasn’t vanity…it was my hiding.
I have always believed in being who I was no matter what. I cared very little whether people accepted me based on my looks, personality, spirituality or mental ability. But I became duplicitous. I became a false witness unto myself, and decieved everyone around me.
I repented before God for my duplicitousness and the shame and embarrassment melted away.
So where do I go from here?
I have read through many comments and blogs, and some of the things that I have gleaned from this beautiful Alopecian family of mine, is that many wish they could “come out.” They have hoped for a way to let others know that they do not have cancer, and wished that they didn’t have to keep explaining to everyone that was curious. They longed for a way to be able to spot a fellow Alopecian in the crowd, just to send a smile or even be able to approach them. But how do we do that?
I believe there is a way. Isn’t it possible for us to tell others “I am an Alopecian?” Instead of always having to say “I have alopecia?”
As I was thinking of those two sayings, I realised that to say “I am an Alopecian” conveys a feeling of acceptance that “this is who I am physically.” And to say “I have alopecia”, well, it sounds like a it could be contagious. It leaves a feeling of fear with the person who may have never heard of it before. Words are powerful. They can hurt, but they can also heal.
Can we in some way legally make Alopecians yet another tribe of people? There are laws that are created for people with disabilities, sexual orientation, race, religion, and even animals. I know that all of us fit into many of these categories, but I think that the law should be revisited for Alopecians.
I believe that as Alopecians, we can be proud of the fact that we can blend into the world around us, and we can also stand out. It is our right. To tell others “I am an Alopecian”, is to inform them of two simple truths…first, that our hair falls out and sometimes grows back and second, that we change. It gives women and men the freedom to wear what feels most comfortable for them on their heads and it gives them the option to go aunatural if they want to. I think by saying to others “I am an Alopecian”, we are no longer trying to fit into their mold of perceived beauty, and we make it “normal” to blend or stand out whenever we feel like it.
This leads me to a question for all of you…
Would you be interested in adopting a symbol to represent the Alopecian? I would love to start an international campaign to not only to bring awareness to alopecia in its many forms, but also to be officially known as Alopecians. I would like to adopt the chameleon for the campaign, because we can blend or we can stand out! It could be a beautiful pin, a necklace or some sort of jewelry…a tee-shirt or symbol on a hat. Whatever you would like to wear, that can be identified by other Alopecians out there. How many suffer in silence? I think it can be a clever way for others to know…AND for us to find each other out there.
What do you think?
On a personal note, I feel really exposed right now. LOL I wanted to share my personal deep feelings, and I, in no way am saying that others that may have read my personal confession are just like me. My desire was to share where I came from, and where I want to go from here. But I can’t do it alone, nor do I want to.