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Solitary Confinement

For me, this is Day 7 of being home to slow the spread of Covid-19.   I am so used to working with people all day that being in isolation has just been a huge adjustment.  I have been trying to exercise and fight off boredom.  I made a list of a ton of things to do during this time, and little by little, I am going through it.   So far some things I’ve done are: finishing a book, going to see the cherry blossoms, taking the Census survey, cleaning out a drawer, doing a yoga video, and watching a movie.

It’s funny, on my list was ‘write a blog post’ and obviously, I have plenty of time to do it.  But what I realized is, since I’ve been home, I really have nothing going on that relates to BPES.  I am just here trying not to go crazy, and only leaving the house to go for a walk or get groceries.

But I guess that is the good thing about BPES.  It doesn’t really affect my health or immune system.  I can just worry about washing my hands and keeping a 6 foot distance with strangers.   And for that, I am grateful.

cleaning

A Wolf in Sheep’s Clothing

After working in Singapore for a year and a half, a few weeks ago, it finally happened. I was having a fun Friday afternoon with my client and we were a little tired and slap happy after successfully launching a big event that week. One of my clients leaned in as we were all saying goodbyes in the lobby, and asked me if I were part Asian. It felt out of the blue! We have been working together for over a year, and while we get along well and are amicable, I by no means consider us close. I have mentioned in the past that since moving to Singapore, only once has a Singaporean asked me if I were part Asian. I used to get asked CONSTANTLY when I was in college if I were “mixed” or part Asian. I really feel this was in part reflective of that time, where “mixed race” was really trendy in television, movies, ad campaigns, and pop culture. After college, as a working professional, colleagues have rarely asked me, given the politically correct world we live in. And quite frankly, I am so grateful people don’t ask me. It drives me nuts. Usually I tense up and feel so uncomfortable. Perhaps because I really enjoy this woman and she asked in such a kind way, I straightforwardly told her the truth, that I had BPES. She has a medical background, so she immediately searched it online and showed genuine interest. She also normalized my experience, sharing that she used to be a NICU nurse and it was really common for babies to have minor uncommon genetic disorders. While this question caught me off guard and went okay, I hope no one asks me any time soon. I always feel like such an imposter when I have to say no, I’m not part Asian. People typically seem so disappointed when they learn they are wrong, and I am not of mixed race. While it wasn’t the best, it felt like a sign of growth that I was able to talk about this without wanting to melt into the floor and disappear. I think in this situation it helped that people rarely ask me about my eyes anymore, I think this woman is so kind, and she immediately related it to the medical profession instead of talking about race.

Mirror Image

So it finally happened, and I wasn’t prepared.

I work in retail management and I usually only go on the register to back up.  Last week,  we had a rush and I opened up an extra register to get the line down.  I had one customer left before I was going to get off.  It was a girl who looked to be in her late teens, and she was with her brother and her mom.

As she put her purchase on the counter, we made eye contact and I was shocked to see that she had eyes that looked like mine!  I was pretty sure it was BPES, but I didn’t want to stare too closely.  She kind of looked at me too, as if she was checking out my eyes, and her mom and brother kind of stared and smiled at me.

I had always thought that if I ran into someone who looked like they had BPES, I would say something.  But in the moment, I kind of froze, and I think the girl did too.  I realized that I didn’t know what to say.  What if I said, “Hey do you have BPES?” and she didn’t!  I would feel badly if she just had unique eyes and I made an assumption about her.   I feel as though having BPES has made me sensitive to people staring and asking questions.  I was curious, but I wouldn’t want to make her feel bad.

Now that the interaction is over and I have had time to reflect, I do regret not saying anything, but I decided to prepare in case it ever happens again.  I was thinking I could have just asked her if she had ever heard of BPES, and that might have been a way to start a conversation.  I am also going to try to think of a few other “ice breakers.” That way if I ever find myself in this situation again, I will already know what to say.

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Reactions – Taking the Plunge

A few years ago I wanted to really push myself outside of my comfort zone, so I signed up for a sprint triathlon. It ended up being an amazing experience! Along the way with my training, I realized that I love swimming. As a kid I always loved being in the water, whether that was the ocean, a pond, a lake, a pool, or (admittedly naked) in a large mud puddle! It can be tricky sometimes as an adult to sift through what you actually love as a person, versus fleeting interests you enjoyed just because you were a child. We grow and change over time as well, so it can be hard to gauge which childhood interests still hold true. However, looking back to what brought you joy as a child can offer great insights into what will bring you joy as an adult. Training for my triathlon helped me realize that my love of water and swimming as a kid is core to who I am. I am so much happier when I am in the water, even though I am an earth sign! Now that I know this, I am able to craft my free time and hobbies around swimming. It is such a happiness boost!

As a kid, I always prided myself on my comfort in opening my eyes underwater in freshwater and even in pools. Salt water stung a bit, but usually I was game for that as well if we were swimming in the ocean. My eyes always hurt and itched a bit when I opened them underwater, but I trained myself to get comfortable with it because it was so cool, interesting, and convenient to see what was happening underwater. I never understood goggles and I found it really confusing to get them to work properly. I remember one time I got a really cheap pair from the drugstore and I couldn’t get them to fit tightly enough. The water would always rush into the eye pieces and I would get so upset. Years later, with my triathlon training somehow I knew I had to have goggles. This time around in the water, I was far less willing to open my eyes in the salt water based pool where I was training. I needed to see underwater so I wouldn’t crash into my fellow swimmers I was sharing my swim lane with during lap swims. My goggles somehow magically just worked and it wasn’t a big deal. Too funny how we can carry irrational biases and baggage from previous experiences into the present. It can be a challenge to balance having an open mind versus leveraging our intuition and wisdom from past experiences. My goggles have served me well ever since with minimal issues. My training was so much fun. It was such a delight to rediscover swimming and how much I loved it.

My sister’s post now is causing me to re-evaluate my entire journey with goggles and opening my eyes underwater. Did it sting so much and did I struggle with goggles as a kid due to my BPES? As kids we didn’t know we had BPES, so many of life’s smaller annoyances actually had an explanation and we were oblivious, just thinking that was how things are. With my personality, I really need to understand the “why” behind something before I can accept it. I just took some of my “BPES” annoyances as life, not realizing that in some cases my genetic condition was the reason for my experience. It doesn’t really matter. It didn’t harm me at all growing up and it was such a minor thing. I really thought opening your eyes underwater stung for everyone… it does though, doesn’t it?

Happy New Year!

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.

Taking the Plunge

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.

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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.

Hair Safety Net

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.

thinking

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?

Wake Up

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.

 

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