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.

BPES Pride

It’s summer time so, in addition to whatever summer might mean to you, that means it’s PRIDE SEASON! We can represent over here on BPESisters with our own slightly different type of pride. BPES pride that is! I am not on social media, but I am being a bit sneaky, living vicariously through my sister’s membership in the BPES Facebook group that she writes about here. This week she shared with me a picture of a young girl with BPES wearing a t-shirt she made to celebrate her BPES. I had to laugh! A few years ago when our brother found out that we had BPES, my sister mentions on other pages of the site how our mom was so upset. To turn her distress into something positive, I invented a secret family club to celebrate our condition. It was a “if life gives you lemons…” type approach mixed with my penchant for irony and sarcasm. Along with our club, I had BPES t-shirts made to celebrate our crew. I still think my mom has a secret dream that we all go to Disney World with matching family t-shirts. Maybe this was a subtle BPES nod to that fantasy. In any case, even though I am not even on Facebook, learning about other people in the community via my sister has actually been surprisingly validating. I am tickled that someone else with BPES was like f* it – I’m going to make a shirt celebrating my condition. Flaunt that BPES pride. Fantastic.

See Yourself in Others

Over the holidays, we were very fortunate to have all of our immediate family in one place. That rarely happens nowadays. We typically spend December 24th at our grandmother’s house. We have cousins who live in our hometown that also have an open house on December 24th. In years past, we’ve done some ninja calendar management to make it to both houses in one night. This year, we weren’t really up for the challenge. Our younger brother took a slightly different approach to managing his family’s social holiday agenda. He came to see my grandmother a little earlier in the day, and then while the rest of us stayed at Nana’s house into the evening, he took his kids to visit our cousins at their holiday open house.

Something that I think is interesting about our family is that all four of us siblings have BPES. For my dad, only some of his siblings had BPES, while others did not. Likewise, for most of our cousins, not everyone had BPES. My sister and I were the first females in our family to have it. We thought that it was a sex linked genetic mutation, but my sister and I are proof that it is not! Our cousin, who lives in our hometown, has BPES along with his son and daughter.  His kids are slightly younger than my siblings and me so we were never in school together, but we aren’t too far apart in years. Oftentimes growing up, people in town would know that we were related because of our eyes. Complete strangers, like high school students working in the grocery store, would ask us at the check out, “Are you so and so’s cousin?” Until my brother’s daughter was born last year, I always felt a somewhat special bond with our female cousin because we three were the only females in our family with BPES. Now we are four! Still in the minority compared to all the male uncles and cousins that have BPES. The point being whenever someone on my dad’s side of the family has a child, we all wait in anticipation to see what their eyes will look like.

This holiday, it got me thinking, I wonder what it is like for our brother’s kids to see examples of people who look like them. Growing up, we were constantly exposed to family in our town and in nearby towns that looked like us. My brother lives many states away and his kids don’t interact with extended family as often as we did growing up. What is even more interesting is that not all of his kids have BPES. Of all our siblings our younger brother probably has the least pronounced BPES in his eyes. Growing up, we thought we were normal in part because we all looked alike. I never thought that it was anything special because all my siblings looked like me too and I spent most of my time with them as a kid. We just knew we had smaller eyes than most people, but we were like our dad. And lots of our uncles and cousins had it too. No big deal. We often had interactions with people who looked like us – completely affirming our identity and sense of self. We had a tribe.

I wonder if my brother’s kids even notice that two of them have small eyes and one of them does not. I’m curious if they even noticed when they were at my cousin’s house last month that my cousin and his kids look like them. I’ll have to ask my brother if this ever comes up in conversation. There’s a lot of discussion in various contexts about the importance of seeing someone like you in a given role or situation. It then helps you visualize yourself being able to be in that role. Did seeing my cousins help to normalize being small eyed for my brother’s kids? Or did they not even register it as they were chasing down cookies, hot cocoa, and candy canes and were too busy being kids? Hmmmm…