Blog

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.”

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.

Brush it out

The other day I watched a YouTube video from a makeup artist who has BPES!  It was great.  She demonstrated some eye makeup techniques that I found really helpful.  It was just so refreshing to see someone with eyes like mine talking about makeup.

She recommended some eye shadow and brush products.  I actually have one of the brands of eye shadow she recommended already.  But I do not have any decent brushes, so I decided to see what I could find.

The woman in the video recommended getting the smallest brushes available.  This makes sense, since our eyes are so small, it can be hard to apply the shadow.  With a bigger brush, it is easy to put too much on, and then it starts to look ridiculous.

Coincidentally, a new Sephora just opened in my neighborhood, so I decided to check it out.  I found a small “precision” eye shadow brush, and I bought it.  I don’t wear makeup every day, but the next time I do, I will try out the brush and provide an update.  Stay tuned!

2.0

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.

J3

Color Me Bad

I have been a Rihanna fan for a long time.   I follow her on Instagram, and I love when she posts her outfits and snapshots from events that she attends.  Over the past year, she launched a makeup brand called Fenty Beauty.  I love that her brand is very inclusive and offers a wide variety of different shades for every skin tone.

Recently Rihanna posted about a new eye palette that is coming out called Moroccan Spice:

IMG_3277

These colors look so fun, but it makes me sad because I just can’t get bold colors to look right on my eyes.  The only one I could maybe pull off is “Mo’rockin Ice.”

Normally I forget that I have BPES, but every once in a while, something like this pops up in front of me and reminds me that I do have some limitations.  As I have posted about before, I find that pretty much only white eye shadow seems to work on my face, because my eyes and eyelids are so small.  Anything darker than white overtakes my eyes and seems to make them look even smaller.

Obviously this limitation is superficial, and I am grateful to be healthy.  And I can still enjoy her other products, like foundation and lip gloss.  But I can’t help wistfully staring at these great colors.

2.0

Frozen eggs part deux

Even though my sister and I are very close, this website is such a fun project because we learn so much about the other’s  perspective on BPES. We don’t typically talk about our BPES because it really doesn’t affect us all that much. Many times we are learning about the other’s  experiences and opinions for the first time as we read each other’s posts. So much fun!

In her last post, my sister talked about other young women with BPES freezing their eggs. That blew my mind! I’m grateful our condition wasn’t fully discovered until the late 90s so this was never an option for us. I appreciate parents trying to give their kids options. Personally, I’d feel too much of a weight on my shoulders if I had frozen eggs as an adult. What if you didn’t want kids , and here you have the eggs that your mom had frozen for you. Crazy! That’s a life question I’m grateful that I personally don’t have to answer.

J3

Back to the Future

Since I joined the BPES Facebook page, I have enjoyed reading everyone’s posts.   I saw one the other day that really caught my attention.   It was from a mom who posted a picture of her daughter who has BPES.  The caption mentioned that her daughter is about to turn 10.  She went on to say that her daughter had an upcoming doctor’s appointment where she would get tested to find out if she has Type I or Type II.   And if they find out she has Type I, they planned to get a consult for IVF and having her eggs frozen.

When I read this, my first thought was, would that have been me if we knew what I had?  When my brothers and sister and I were born, we were told we just had ptosis.  We had no idea until recently that the ptosis was only part of it.

But this post made me realize, if we had known, would I have gotten tested and have had to start thinking about freezing my eggs at 10 years old?!  I’m pretty sure I was still playing with Barbies at that age.

In some ways, I am glad that I didn’t know, and was blissfully ignorant.  I had enough to worry about in junior high and high school, and can’t even imagine if right after I started getting my period, I would have had to make a decision about freezing my eggs.

I am happy and have no regrets in my life, but I can’t help but be curious at how differently my life would have been if I had known about my BPES from birth.  Until I started reading other people’s stories, it didn’t even occur to me how differently my childhood could have gone.  Reading this post made me grateful that not knowing probably eliminated a lot of stress from my life.

2.0

(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.

J3

It’s a Group Thing

So I did it.  I joined the BPES Facebook group.  It was a closed group, and I had to answer questions to get in, but I was accepted.  So far, most of the posts have been parents posting about their kid’s surgeries, or new parents who just discovered their child has BPES.

I found it ironic because having BPES, I most likely can’t have kids, and it seemed like this whole feed was posts about kids.  I was glad to see as I was scrolling through that there was one post from a girl who looked like she was in her 20s.  She had dressed up and was going to an event and posted a picture.

As I was perusing the page, I also read through some of the comments, and everyone on the site is very supportive.  I was happy to see this, because I have no time in my life for negativity.  I was able to relate to comments about the eyes getting male attention, being mistaken as Asian, and not having to worry about as many wrinkles under the eyes.

I have mentioned this before, but it is simultaneously cool and weird to see people who look like me, but are not related to me.  So far I do not regret joining the group.  Even though there are almost 1500 people in it, there is only about 1 post every day or two, so it is not overwhelming my Facebook feed.

I am not sure if I will ever personally post something about myself, but so far I have enjoyed reading through other people’s posts.  2.0