Today I responded to a comment in a public forum from a man who has has alopecia universalis – no body hair at all – since he was thirteen.
He is in my Baby Boomer generation, and there was little help available to cope with alopecia when he was a child. This wonderful man shared his hurt and his pain over the bullying he experienced both as a child and an adult. It took courage to share. My heart was full of empathy and compassion for him, and I could not leave without responding. Here’s what I wrote:
You are so right about growing up and the rest of the world staying immature and ignorant in areas in which they have no experience. I too have experienced the negativity, but I didn’t have to deal with it as an adolescent like you did.
There was no understanding of alopecia then and zero help for kids to cope. And that sucks. Today things are changing – way too slowly to be sure, but changing. And a lot of that has to do with bald men and women stepping out of the shadows, openly accepting their hair loss, reclaiming their joy and sharing it with others.
I’m 64, bald as an egg and loving every minute of it. It was wigs I hated. And the feeling I was no longer worthy to be seen by society. It was worrying more about taking care of other people’s feelings than my own feelings, comfort and personal freedom that left bitterness in my heart.
I’ve only seen one other woman in Grand Rapids with a bald head and that was as she sat in the passenger seat of a car next to me on the road.
But everywhere I go, people know who I am. And if they don’t, they soon learn. I’m the confident smiling fat baby boomer who listens to the stories others share about hair loss – their own or people they love. I’m the only female shining head under the low overhead lights of a restaurant in the evening. I’m the one who answers questions, gives hugs and shares the blessings of au.
Okay. Having no nose hair is no blessing. Cold air hitting the lungs in winter and unwanted protein snacks on the back of my throat from bugs flying unhampered up my nasal canal. But that’s the only negative for me.
I’m an ovarian cancer survivor too, so I can relate to folks who’ve lost their hair through chemo or radiation treatments.
Mark, I like my bald, hairless self. No, I love her. I refuse to allow anyone to take away my joy in the blessings of my life. I could have. It would have been easy. But it’s a hell of a lot more fun to see my au as one more blessing that enables me to help others who struggle with the emotional and social effects of hair loss in a hair obsessed society.
That’s why I wrote Boldly Bald Women, an Amazon Best Seller that incorporates the stories of 25 women members of Alopecia World into a survival guide / font of wisdom for women facing hair loss. That’s why I talk in school assemblies to educate children and their teachers to help stop bullying and change perspectives about baldness.That’s why I respond to posts and have a website offering a free download of “Getting Past the Pain – 3 Things You Need to Know. That’s why I am in the process of developing programs to help women reclaim their joy.
I understand why you would want to snap your fingers and give the nay-sayers a mile in our shoes. It makes complete sense.
I have chosen to be a positive force in a negative world and impact people one at a time. I have chosen to bloom where I am planted and do what I can where I am with what I have.
After all, I ask you… what’s not to love?”