Reactions – Hair Safety Net

I don’t mean to keep doing this, but this ongoing dialogue in responding to my sister’s posts is too delicious to pass up. I love the diversity of perspectives from women with the same condition and same history from the same family! It highlights while as women with BPES we have common struggles, we may approach them differently.

I have always fluctuated between having long and short hair. I enjoy them both. Usually I will grow my hair really long until I can’t take it anymore and then I like to have it dramatically chopped off. I hadn’t done that in awhile. A few years ago I was able to cut off 10 inches of my hair and donate to a Locks for Love type program. It was the first time I’d done something like that and I really enjoyed it. In chopping off so much hair, I also discovered as an adult how much I love having a short bob. It made me feel very professional and mature. Moving to Singapore, I also appreciated having short hair as one less thing to make me sweat so much. Right now I am growing my hair out to see how much I can tolerate it in this climate. I also want to donate my hair again because I found it so gratifying. I hope I can make it without caving in. I have found for each inch of additional hair I have, I really am noticeably hotter. I am getting tired of having my hair up in a bun all the time to keep from melting. So we’ll see if I can make it to a length long enough to donate.

I was struck by my sister’s post in that I have never hidden behind my hair. My sister can attest to the number of times (as younger sisters are want to do) I told her I wanted to chop her hair off. She has defaulted to keeping long hair most of her life. Maybe I can convince her to cut it to shoulder length. She has always had beautiful hair. I still look at her face though and others do too. Her hair does not hide her BPES. It is always astounding to me how much of a narrative we create in our minds about how others see us. In reality, they don’t see us at all or they notice completely different things about us. Being self-conscious is such a hard thing to overcome, especially when you have BPES. I always harden up whenever I think someone is looking at me or going to make a comment about my eyes. I can understand why my sister likes having a safety blanket.

What is so delightful about our blog is that we are learning so much about the other and how she views her BPES, even though we have a close relationship and talk all the time. I had no idea she felt that way about her hair. I would love to see her cut her hair and see how liberating it can be.

Women with BPES

Happy International Women’s Day! We love being women. BPES has given us a unique look and that only increases how fun it can be to be a woman with BPES. We’ve hinted at some of these topics on other pages on the site, but I thought I would bring them all together in a post centered around being a woman in honor of International Women’s Day.

Our BPES is based on a genetic mutation that happened when our great grandmother came down with pneumonia during her pregnancy. Between her illness and the treatment, this had an adverse affect on the fetus, leading to our telltale “trademark” as our father calls it – small teddy bear eyes. Or so the family urban legend goes. Our grandfather had “the eyes” and this was passed down to his children. Only the males in the family were born with BPES and not all of them had this condition. It created an interesting divide at times in my father’s family between those siblings who had this condition and those who did not. My family assumed it was a sex linked trait as only male children had the small eyes.

All that changed when my big sister was born.

She had small eyes, disproving the theory that this was a sex linked trait. Both my sister and I have BPES. We were always special as the only females in the family with this condition. A bit later our cousin was born with BPES as well. For me it is a special bond because so few of us have this condition. Now my brother’s youngest daughter joins our ranks. It’s fun to have a small group who understand things like the annoyance of figuring out how and if to use eye liner (although that is some years away for my brother’s daughter!) or just having to deal with dating men who don’t get your look.

Women define their own sense of self, femininity, and womanhood in different ways. Many bring childbearing into the equation of being a woman. For me as a woman with BPES, I am not bothered that I most likely can’t have kids. The infertility component of BPES doesn’t impact my sense of my own womanhood in any way. I feel like a complete woman (and then some!) even though I most likely can’t have kids. The infertility aspect of BPES is like water off a duck’s back for me. No big deal and doesn’t make me feel incomplete that I can’t bring life into this world. Everyone is on their own journey of course and others certainly could feel differently. I respect that.

BPES certainly impacts my overall identity. For me, it just rolls into my overall sense of self, which is strongly grounded in the fact that I am a woman. Riffing off of my sister’s post from last week, my condition does not define me. Hehe, a little tongue in cheek because as much as we dissect it here on the website, our condition doesn’t really impact our quality of life or inhibit us in any real way. We are fierce, strong, confident, sensual women, who happen to have small eyes. And we wouldn’t have it any other way.

Who run the world?