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How to be me and have alopecia
I haven’t written anything alopecia wise in a long time and I’m sorry for that. It’s not that I have nothing to say on the matter but so much else is more important. And lately I find that I don’t want to be as open about my story as I was in the past. For it seemed opening myself up has also allowed others in. Which for the most part has been therapeutic and healing; not only for myself but for others. But along with the good will always come the bad. The naysayers that wish to bring me down to the fetishers following for no other reason than the superficial. These are the ones not interested in the message; they only want to dirty what I want to say to the world.
Being bald and living as an open bald woman leaves me open to much ridicule. Too many frustrations. I try to live by an honest open life, to be myself. I just want to able to live my life, to go about my day just like everyone else. But as an open bald woman that will never happen. There is always going to be days where I will be stopped in the streets and asked about my baldness. Most times honest inquiries; other times hostile people that have nothing nice to say. That I’m some sort of freak for being bald. That I must belong to a radical group. There is other times, which seems to be the days that I just want to blend in, that I get the open gawking stares. Adults and children so busy staring at my bald head that they walk into things. Children racing to their moms, tugging at their hands and pointing at me. Where their mothers respond by hushing them and pulling them away.
I have 2 choices in my life. One I can cover up and in my mind, hide my alopecia. Or two I can adapt and adjust. And as I adjust to the negatives parts of sharing my story, I found something new, I have also let myself down in the process. I let myself down because I also built a wall around myself. Daring anyone to approach me. I let those that wish to destroy the positive message stop me from sharing it. I let them control me out of fear of being hurt or upset. Much like I did growing up with alopecia and hiding it from people out of fear of being ridiculed, I let the naysayers and fetishers do the same. Much like as when I was a child I let the few negative aspects outweigh the positives that can come from opening up. I worry too much what others may say or think about what I have to say instead of telling my message.
I thought I was thru with that fear when I shaved my head, but that is something that carries with you in all aspects of your life. Just because you conquered it in one part doesn’t mean that you have conquered it in all parts of your life. And it also doesn’t mean that the problem won’t arise further in your future. I have to be strong in myself, in my message, in my constitution of what I know to be right for me.
I will not let the few negative parts of opening myself up to the world stop me from sharing my message. For they are few in comparisons to the ones that are willingly wanting to hear it.
I am reminded of this when I came across a piece of writing, so inspiring that I saved it and will share it here.
“One piece of wisdom for any messenger spreading visionary ideas in the world. Be careful to protect yourself from the opinions of all but a few carefully selected, trustworthy mentors who are on their own visionary journeys. And remember that the feedback you'll get from others, none of it is personal. When you’re brave enough to get into the arena, you’re going to have critics. But remember, they’re not criticizing you. They’re just reacting to what they don’t like about themselves in the mirror that you hold up. The same is true for those who are cheering you on. What you’re reflecting back in the mirror you hold up shows them the best part of themselves. But none of it is about you. It’s all projection. If you personalize the criticism, you won’t get far on your mission. And if you internalize the praise, you’ll become a diva with a swollen head. As Theodore Roosevelt expressed best, “It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.” Lots of people will try to criticize you from the stands of the ordinary world, when you’re out there in the arena, stepping bravely onto the path of your hero’s journey. If someone doesn’t have the courage to get in the arena with you, the advice can’t be trusted.”
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Comment by Jane on January 31, 2014 at 5:41pm
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What you write is very interesting and thought provoking. I would like to share my thoughts.
I have had AU for 40 years and of course it was very hard at first and for a long time I suffered from low self esteem and lack of confidence . I had a period of wearing headscarves all the time as a way of dealing with not hiding myself behind a wig. Then I began to feel that I wanted to give myself the best chance of succeeding in my work and in the world and in expressing myself. So I went back to wearing a wig. I feel this was a conscious choice that was not about hiding but about not putting my physical condition in the forefront. I think that in this way I protected myself from immature projections and prejudices which often come from peoples fears.
I stopped putting so much emphasis on my body and appearance and felt that my inner qualities and the things that I had to give were as or more important. In wearing a wig in professional situations I felt that I was not drawing attention to my appearance and making that so important. People responded to what I was giving to them and of course I shared about my hair loss when I felt like it, and with those I wanted.so I feel I protect myself from having to deal with unknown peoples projections. People responded to my personality and to my qualities. As I write this I think that what happened to me through all this was that it allowed me to build up a great deal of genuine self confidence and learn to value myself for who I actually was. So that I also stopped thinking that much about my hair loss.
I do agree with you - I feel that people who have a problem with other people' appearances are mostly just projecting out their own self rejection and lack of heart contact. So that people who are seeing the the beauty in others are also seeing a reflection of their own beauty.
I have developed a great deal of inner strength from practicing Meditation and mindfulness. This has helped me to develop a lot of self love and softness towards myself.
So. I wonder if it might be an idea for you to wear a wig sometimes and in certain situations to protect yourself from unkind and thoughtless people who have their own problems of self rejection and intolerance. Of course go without a wig when you feel safe and with people you trust. Focus on what makes you happy , on what you want to give and build up genuine self love through these things.
Take care and wish you all the best. You sound like a lovely person.
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Hello again I have gone on thinking about what you shared after I added my first comment. You bring up deep issues - what is honesty? I think you talk about a kind of absolute honesty which is wonderful but idealistic and perhaps not always practical in a far from ideal world.
I think there is honesty to oneself and then as far as alopecia goes when we live in a far from perfect world with people who are not always wise I think it is important as you have done to look at how hard it is to be openly bald every day. You talk about building a wall around yourself - I understand this and this is painful. Does it serve you to have a wall around yourself ?
You see this leads me as I already shared to looking at what is your life' s purpose and what you want to do to achieve or contribute to life ? Then to look at whether being openly bald as a woman is the most skillful way of living at present when you are still vulnerable and have not developed an unshakeable self confidence yet. You are human and vulnerable. What I mean is that if you have a longing to develop a certain work or skill - could you best achieve this by not exposing yourself to others not skillful reactions when you don't feel like dealing with this. Some people can be openly bald and can cope with it perhaps without building a wall- rereading your mail I feel it sounds too painful for you at the moment and I suggest accepting this . This is where you are at present and there is no shame in this, it may change later, but be kind to yourself now.
I went through a long journey with my AU - on one hand feeling so bad about myself and hopeless and therefore introverted and wanting to hide away - and on the other hand having an unshakeable conviction that I wanted to help people which meant I had to express myself and have some confidence and go out into the world. So this was a long process of these two parts struggling with each other until I could begin to emerge as a strong, confident and always vulnerable human being.
Another thing that helped me was to look at what is permanent and what is impermanent in life ? This brought me to look at what I believe about life and death. I feel we come into life / our body to learn - mostly about love. We each have specific challenges and for us one of those is alopecia. Then I feel that when we die we leave our physical body and our soul or spirit moves on. I have been with several people who have died and this is so clear to me. As I write this I am thinking of Anita Moorjani -.a woman who had an unusual near death experience and who wrote a book Dying to live. You can see her talking on YouTube. It is very uplifting.
So I feel it is important as you have done to be honest about your own feelings and vulnerability at the moment - and be loving and gentle with yourself -
I also have a son with AA and a nephew with AU and they are amazing young men living their lives bald or with a shaved head. I am deeply touched by their courage and what they do in their lives. My son is working in international NGO aid projects and he travels extensively and is out there meeting all kinds of people in his work life.
Anyway take care and thank you for sharing so openly - as it gave me a lot to think about and gave me the wish to share all this.
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