Reactions – Wake Up!

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?

Riding Around Asia in Taxis

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.

You talking ’bout me?

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.

Mistaken identity

I recently started on a new project at work. I am working in a two person team with a woman who is a similar height as I am. Some people at the client repeatedly mistake me for my colleague, calling us by the other person’s name. It is a bit strange as we feel we look quite different. We are having a hard time understanding why they keep confusing us and calling us by the other’s name. We are of different races. She is Asian and I am Caucasian. I also wear distinctive glasses and she does not wear glasses. We think it is funny, but also a bit weird that they can’t tell us apart. I hate that I always wonder in cases like this – do they incorrectly think I am Asian due to my BPES eyes? In truth, I have no idea what they are thinking. It is funny how we project our thoughts onto others, when in reality, maybe these people at my client are just terrible at remembering names or telling people apart. I’m not convinced though…

Ice Cold

A few weeks ago at work, as we were griping about the heat wave that seemed to be sweeping the world at large, the subject of air conditioning came up (naturally!). A co-worker mentioned that in Japan they are piloting a technology that can detect when an employee is starting to get sleepy based on eyelid movement and then blast them with cold air. Based on this data from sensors monitored to computer screens to measure eye movement, the air conditioning temperature will be lowered in an effort to use cold air to stimulate the employee and keep them alert. Some ethical questions at play here, but what caught my attention was a technology that could monitor eyelid movement. With BPES, I don’t have eyelids like most people. I am super curious if this technology would be able to register when my eyelids start to flutter and I get sleepy. I don’t think my eyelids really flutter when I am tired so now I’ll have to pay closer attention to this. It struck me as well that Asians tend to have smaller, narrower eyes further peaking my curiosity around if this technology is actually effective. I hope to never find out!

Singapore Surprise

I am behind on posting because I am currently on vacation in Singapore! This is my first trip to Asia and it has been amazing so far. But I did have an interesting encounter at the immigration counter. I am traveling with my sister, who also has BPES, and she was in line ahead of me. After she made it through, I walked up to the desk, and the officer looked at me and said, “oh was that your sister?” I said yes.

Then came the surprising question: “Are you mixed blood?” I kind of froze but managed to reply “No I was born with a rare genetic condition.” And the immigration officer said, “oh I thought maybe one of your parents was Japanese.”

He seemed sincere, and Singapore is a country made up of people from all over Asia, and I think he was just trying to figure out where I fit in, so I was not offended. But I was a little intimidated. I was trying to enter into a foreign country with strict laws. Sometimes I find it just easier to lie and say yeah I’m part Asian. But in this case all I could think was oh my god, I can’t lie to an immigration officer, haha.

This encounter didn’t upset me, but it did kind of catch me off guard. I guess you just never know when someone is going to make a comment. I like to think I am prepared, but this was definitely the first time that I have heard the phrase “mixed blood.”

Under the knife

My sister and I were chatting last week about her participation on the BPES Facebook group. She brought up how a dominant topic in the conversation is around surgery.  We are so grateful that it was not medically necessary to have surgery as children. I mentioned on the pages of our site my entire surgery journey as an adult. One of my largest fears going into surgery was that I wouldn’t look the same and I would lose my identity as me. I was worried something would go wrong and my eyes would be permanently damaged. Thankfully everything went very well. I do look slightly different and I miss my smaller eyes (can you believe that?). I remember soon after my surgery a very dear friend of mine comment that they preferred how I looked before the surgery. That stung a bit.

Overall, I don’t regret my surgery because my eyes were slowly closing. Having surgery significantly improved my quality of life. Of course I would do it all over again. I am a bit jealous of my siblings though as none of them have needed surgery. I can live with having gone through one surgery even though I really really would have preferred to have never gone under the knife. I only hope that the surgery holds for the rest of my life and I don’t have to do it again. There are cases were as you age, the muscle gets weaker and needs to be lifted again.

Even though I feel hypocritical saying it, my sister and I are happy to advocate that there are situations where you don’t have to have surgery with BPES. We’re so grateful it (mostly) wasn’t medically necessary in our family.


(Don’t) smile for the camera – now click!

Recently l went through the “saga” of having to get a new passport, for reasons that are a story for another day.  This process included having to get new passport photos taken. In theory getting passport photos taken is something you should only have to do every ten years or so. I travel abroad fairly often and in the last few years, I’ve had to get identification photos taken several times for various visas and IDs, each with different specifications for photo dimensions. US passport photo requirements have changed and now you can’t wear glasses in your passport photo. Other countries require that your eyes fit within certain centimeter dimensions for an official photo ID. While simply taking off your glasses sounds like no big deal, for someone with BPES, these specifications can be a nightmare. Getting passport pictures taken is such a mental obstacle to me, that I go through great lengths to avoid having to do it. For example, I still keep a huge stash of passport sized photos that I printed and trimmed myself years ago on a photo printer at home based on a photo I had taken that met passport photo specifications. Crazy schemes like this often backfire on me because photos have to be recent and the requirements are often changing.

A colleague ran into a snafu recently with getting his passport replaced. As we were commiserating this week over the bureaucracy of getting a passport, particularly while abroad, I realized that part of my resistance to passport photos stems from my eyes. Oftentimes when getting my picture taken, the photographer will prompt me to open my eyes wider. I used to get so frustrated when someone told me to open my eyes. It drove me crazy because I would always think – if I could open my eyes wider, don’t you think I’d do it?! On one of my latest rounds of passport photos, I sat with the photographer for five minutes where he kept telling me to relax my eyes. With my eyes being so small, the picture wouldn’t meet the ID photo requirements. It was insanely frustrating for both of us and I felt really stupid. He didn’t realize I had small eyes and it seemed he thought I was squinting on purpose. Other people came in and it took less than a minute to snap their photo. In the end I got my photos, but the entire experience made me feel awful. At best it should have just been an annoying quick errand, instead of me feeling incompetent, foolish, stupid, embarrassed, and frustrated. Clearly it made its mark, with damage to my psyche because now I’ve built it up in my mind that getting passport photos is SUCH a hassle.

Just another small annoyance of having BPES.


Lost baggage

I’m on vacation this week with friends and one of my traveling companions unfortunately had her luggage lost. We’ve been trying to make the best of it, with everyone in the group offering what they can to try to supplement her lost luggage. There’s no worse feeling than not having your own stuff so you can truly enjoy your vacation. I am a pretty low maintenance lady and I felt terrible that I didn’t have so many things with me that perhaps other women might, such as make up, foaming face wash, bobby pins, and tinted SPF moisturizer. My friend and I sadly laughed that if she had been on a trip with any other female friend, this probably wouldn’t have been as painful for her.

Over the course of the last 48 hours as we’ve waited for her bag, at different points in our trip, she’d ask if I had a certain item. It struck me when she asked if I had any eye cream. I burst out laughing because I actually own eye cream, but I don’t really use it and I certainly don’t travel with it. I think I bought it in a moment of self-absorption because I thought it would help with early signs of crows’ feet. I’ve always wondered what is the point of eye cream. I’d see it so often advertised for women in particular to have younger looking eyes. With our BPES, we don’t get bags under our eyes or at least we haven’t yet. I’ve never really had a true need for it or understood what it does. My friend assured me that it perks up tired eyes. I am intrigued and we laughed together that my eyes are so small, I’ve probably never really experienced the need for eye cream. While I hope her baggage is found quickly, I hope to not see bags under my BPES eyes!


Are you two sisters?

This week my sister and I are together on vacation! We are having a wonderfully relaxing  week and taking some  much needed time to unwind and spend time  together. We noticed throughout our travels this week, no one has commented on how we look alike or asked us where we are from. It’s been marvelous!

During high school we both worked in the same place in a family owned business that consisted of three different stores. Oftentimes customers would go between stores and think we were twins working  in two different locations. It drove us nuts because while yes, it is pretty clear we are sisters, due to our eyes, we think we look nothing alike. Whenever people ask us if we are sisters or ask more about our eyes, it can be annoying. Sometimes we’d think, can I order a cup of tea without having to answer personal questions for a total stranger?!

This week it was so refreshing to not have people ask about us or our appearance at all. It makes our trip all the more enjoyable.