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.
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.”
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.
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.