Happy 2020! We had a busy second half of 2019 and decided to prioritize other things outside of our BPES website. We’re back! We are excited to refocus on our blog, the website, and connecting with the BPES community this year.
For a long time I have chosen a word or a theme that I want to help guide my areas of focus for a given year. In 2020, my word of the year is “community.” This requires some explanation. To start, I am loving living in Singapore. I have been so fortunate to live in so many different places, that I almost have packing up and starting over again in a new country down to a science. In spite of this, making friends, whether you move to a new neighborhood, city, state, or country is really hard as an adult and still tough for me with each of my moves. I have put down some roots here and I certainly feel settled with a routine and a life that I’ve constructed. That said, my personal relationships still feel very surface level and are pretty limited. Personal relationships are so deeply tied to happiness and quality of life. As humans we are social creatures by nature and I am very interested in deepening my happiness. I read a book in 2019 that really resonated with me around what it means to meaningfully engage in your community, with the definition of community being a bit personal. I have a lot of ideas on which communities I want to engage with and curate in 2020. My BPES community is one area where I want to deepen my connections. My sister started on this journey last year when she wrote about pushing herself outside her comfort zone to join a BPES Facebook group. I am still getting my legs underneath me in terms of what “community” will look like for me in 2020, but the first step is returning to our BPES website and deciding how we will engage with the BPES community.
Look forward to more to come this year and don’t be a stranger! We’d love to hear from our fellow BPES friends in the community. I’m excited to engage, connect, and continue to share our story around BPES.
I was on Facebook the other day and I came across a post from the BPES group. A woman was inquiring if anyone else’s children had trouble with their eyes when swimming. Her daughter didn’t like putting her eyes underwater, and would use goggles, but the woman had trouble finding goggles that would fit. Other members assured her that their kids had similar issues, and gave her some recommendations for brands of goggles to try.
After reading this I was like woah! I have always hated opening my eyes underwater, because it stings, but for some reason, I never connected that to my BPES until now.
Part of the reason is that I have only known for about 5 years that I have BPES. But even when I thought I just had small eyes, for some reason, it never occurred to me that this could affect how my eyes react underwater.
I have always enjoyed swimming and dunking under the water to stay cool, but to this day, it is still uncomfortable trying to open my eyes underwater. I am glad that I read that Facebook post and I now know this is “normal” for people with BPES.
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.
Today I was looking at myself in the mirror, and started thinking that I should get a haircut. I always keep my hair long, but when it gets close to possibly getting caught in my pants, I head to the hair salon. Whenever I go, I only have them take a few inches off, so my hair is still long.
It got me thinking about why I don’t like short hair. The last time I had my hair at just about shoulder length, I was 12 years old. I didn’t like how it looked, and ever since then, I have kept it around chest level or longer.
Looking in the mirror today, I realized that part of the reason I like my long hair is because when you have a lot of hair, people notice that more than your face. With shorter hair, people are able to focus more on your facial features. And with BPES, I have small eyes, and my ears are slightly uneven, and I feel as though keeping my hair long balances this out.
I am sure this is just psychological, but it would be really hard for me to cut my hair short. My long hair really feels like a security blanket. I know as I get older, it is probably going to look weird. Can you imagine me at 70 years old, with long gray hair? I can’t. So at some point, I will have to go short. But in the meantime, I am happy to stay in my comfort zone with my long hair.
It was fascinating to read my sister’s last post. I kept waiting for the punch line of the story where this stranger would directly comment on her eyes. What struck me, is that he never did. I assumed the man made these comments towards her because she had her head down and it was early. It never crossed my mind that he was making this comment because of her drooping eyes. I was amazed that she reached this conclusion about the interaction. I interpreted the exchange in a completely different light.
I can empathize with my sister’s experience. How do we differentiate between our own insecurities and what is actually happening around us? I too feel myself getting self conscious and defensive in public sometimes about my appearance, assuming people are making conclusion about me based on previous situations. All this is just in my head though! My past experience and my own insecurities have taught me to apply this lens of thinking to many social interactions. We won’t really ever know (perhaps without asking in the moment), but maybe this man just thought she was tired because her head was down. I am intrigued by what caused my sister to immediately jump to the conclusion that he made this comment because of her eyes.
It is funny to me because I am guilty of doing the same thing in jumping to conclusions. When looking at this from an outside perspective, however; it seems so obvious that maybe this wasn’t about eyes at all. Or maybe our past experience has been a wise teacher of intuition and it WAS in fact about her eyes. As long as we teach ourselves not to be bothered by these things, does it even matter?
A few days ago, I was standing at the bus stop. It was cold, my hands were in my pockets, and I was staring at the ground, willing the bus to hurry up. Then this man walks by and exclaims “Wake up!”
I never know how I am going to react in the moment when people say things to me. In this case, I kind of gave him a half smile and didn’t say anything. I wish I could have seen my actual facial expression, but I am sure I looked annoyed. The man realized I was not amused, and walked away.
The bus arrived and I got on and started thinking about his comment. In my mind, I was like maybe I should have said “I was born with a rare genetic condition and my eyes always look this way.” But I just wasn’t in the mood to explain anything.
The other thing that annoyed me was that even if I had “normal” eyes, and someone told me to wake up, I would still not be happy about it. Obviously this man didn’t know I have BPES, and just thought I was tired. I would never say that to anyone, because I perceive it as rude. If someone is tired and their eyes are drooping, why is it your place to tell them to wake up?
I have been dealing with stares and random comments my whole life, but now that I have this blog, I am glad that it gives me a chance to document it. It is interesting to me how I always think I will politely explain my condition when people make comments, but when it actually happens my immediate reaction is to glare at them and say nothing.
We’re back from hiatus after taking some time away from BPESisters to disconnect and focus on other priorities. We’ve been itching to get back on the blog and are excited to say a belated hello to 2019.
A few weeks ago I was in a taxi between meetings, with a particularly opinionated cab driver. I find there are three types of cab drivers: those who don’t speak at all during the trip, those who exchange some pleasantries and brief chatter at the beginning of the journey, then slip into silence for the rest of the trip, and finally those who chatter nonstop during the entire ride. I appreciate all three depending on my mood. It doesn’t always happen that my mood matches that of my cab driver. I might be feeling outgoing and chatty only to get in a taxi with a silent driver. Or as was the case a few weeks ago, I really just needed some quiet time to reflect and rest, and my cab driver talked to me the entire trip. He was friendly enough, but he made some rather radical political statements. I politely went with the flow and acknowledged that we all have different opinions, without really agreeing or disagreeing with his statements. The conversation got weirder when he started to allude to my appearance and my eyes. I knew where this was going. As a woman with BPES I can tell when someone wants to ask me why my eyes are so small or if I have Asian heritage. It drives me crazy EVERY SINGLE TIME. As an adult, I have been able to brush it off much more easily. I used to get annoyed, stand offish, and defensive. I think ultimately what really annoys me is that I just think it isn’t someone’s business to ask me about my eyes. I am not embarrassed, self conscious, or ashamed of my BPES-related features. I just feel that I shouldn’t have to explain my features to others. Their curiosity or confusion should not become my burden.
I took a deep breath and cut him to the chase, telling him if he was wondering if I was Asian, I was not. He then proceeded to make some rather racists statements. I politely informed him that his statements were not acceptable to say and offensive. Thankfully we were very close to the end of my ride. Amongst other things, this ride stood out to me because after being in Asia for about seven months, that was the first time someone here asked me if I was part Asian. I can’t help but wonder how many other people assume or think this, but are too polite to ask. I laughed off my cab driver and was mostly thankful that I safely got to my destination in tact. Funny how it rarely happens now, but each time someone asks me about my eyes, something deep in my gut triggers, and I get prickly, annoyed, defensive, and irritated by the entire thing. Thankfully once I shut the cab door and walked away from the curb, I was able to leave my irritation behind and not give it a second thought. I laughed it off as as crazy cab ride.
One of my favorite parts about launching this website is learning about my sister’s experience with BPES. We share a lot as sisters, but it still strikes me when I read her posts and think – “I had no idea that happened to her!” My sister and I have talked in the past about how difficult it can be to find sunglasses due to our BPES features. I have also had hat struggles that she describes in the last post. As a kid, I could rarely put on plastic kid sunglasses or a kid’s baseball hat and have it work on my face. As kids, we would attend an event, visit a museum, or go on a field trip and potentially get a free baseball hat. I used to be thrilled at getting something free, but I could never figure out why the hats looked so natural on my friends, but somehow just didn’t sit quite right on my head. I didn’t realize until years later that part of my struggles could be attributed to our BPES facial features. I also learned as an adult that one size rarely fits all. I am now much more selective when trying on hats and sunglasses, truly only buying something if it really fits and compliments my face. Thankfully there are many more options available compared to when we were kids in large part due to online shopping.
Her post struck me because it took me YEARS to realize that ear warmers work really well for my face and ears. I had an ear warmer my sister actually got me that I loved, but I think it fell out my bag at a movie theater in Amsterdam last year (devastating). This winter hopefully I won’t have the need to don headwear as I am in the tropics. However, I want to tip my virtual hat to my sister in all her BPES glory for rocking every kind of winter hat beautifully this season. Even though I will be spending this holiday season alone, I hope to rock my matching “SLAY” winter hat as well as she does in BPES solidarity.
It’s starting to get colder, which means I’ve begun to wear my winter coats, scarves, and gloves. Along with this comes my yearly reminder that I don’t like how I look in hats. Since I have BPES, my ears stick out slightly, and one ear sits up just a bit higher than the other. I have spoken before about my struggle with baseball caps, but at least those are optional. When it gets cold, if I don’t put something on my head, my ears will freeze.
I usually keep a knit ear warmer in my bag in case I need it. I also have one of those hats that has fur and flaps over the ears, and I don’t hate how I look in it.
But when it comes to just a knit cap to put on my head, it is hard for me to find something that is flattering. Usually I just go with the ear warmer or put up the hoods on my jackets. If it is really cold, I put on the hat with the flaps.
I do have 2 knit hats that I like, but I don’t love how they look on me. I know I shouldn’t care, and this winter I am going to make myself use them more. I try to tell myself not to be self-conscious, because other people probably don’t even notice.
This Friday my office had a happy hour after work. As I was chatting with colleagues in a non-work setting, I made some offhand comment about using checklists with my mom as it related to a story I was sharing. My colleague immediately jokingly asked if my mom was Singaporean, making a subtle reference to her perception of the overly structured expectations in Singaporean business culture that we are currently experiencing on our project. My mind immediately jumped to the thought of “oh my god, does she think I am half-Asian because of my eyes?” I jokingly laughed it off and the conversation moved onward. Only a day later did it occur to me that I think she was just making a joke about our client. I don’t think my self-consciousness will ever leave me where I consistently jump to conclusions that people are judging me based on my eyes. Oftentimes, they probably aren’t, but that still remains my first interpretation or in the very least something I wonder. I don’t know how to effectively un-train my brain on this one.