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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.

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(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.

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

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!

Wine Time

I just got back from an amazing relaxing vacation, and have been fighting jet lag this week, so the post is a bit late.  I had a great time in the Douro Valley in Portugal.  I had no idea how stunning the landscape would be.  It was just such a peaceful place.   I love living my life in a city, but it is great to vacation in a tranquil environment.

I have always loved traveling and am proud of how many places I have managed to visit.  I can’t help but think that if I had kids, I most likely would not have been able to go to many of these places.  I still can’t believe how lucky I am that I just got back from a spa in a UNESCO World Heritage Site, and had the opportunity to do wine tours of these amazing mountainside vineyards.  Just look at this view!

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It is times like these that I embrace the positive side of being infertile as part of having BPES.  I can’t imagine my life without travel.  I already have my next destination planned for later on this summer…stay tuned!

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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.

 

Spring Itchies

Spring is finally here!!! Where we live everything is in bloom and it is gorgeous. I’ve been trying to get outside every chance I get. I forget that spring can be a very uncomfortable time for people with allergies. This week at work I was chatting with a colleague who shared that he was miserable with sinus pain as there is so much pollen in the air. I have a sneaking suspicion that as I get older based on all the environmental toxins out there, I’ll inevitably get some form of allergies. All the more reason for me to savor these seasons while I can.

Talking to my colleague about spring allergies brought me back to my childhood. When we were younger, my mother, older sister, and older brother had terrible pollen allergies. I remember how my brother would be constantly rubbing his red, watery eyes and sneezing miserably as trees bloomed outside. I thought he was such a grouch and I didn’t understand why he seemed to complain so much. Every spring our household would explode with runny noses, itchy eyes, and foul attitudes… for half of us. The other lucky half, me, my younger brother, and my dad, were allergy free. Say what you will about OTC drugs, but when Claritin finally was available without a prescription, life became much calmer in our home.

When I was younger and I’d watch my brother suffer through the spring, for awhile I thought it was related to our small eyes. I thought his eyes were red, itchy, and runny as just another one of those things that made us different. Eventually I came to understand allergies can happen to anyone. I truly just don’t think that much about allergies because I have been so fortunate to never have them. Looking back, I really feel for my mom and my siblings as they suffered through each spring. As a recurring theme with BPES, especially as a child, so often we’d experience something related to our eyes and I would have such a hard time deciphering if this was “normal” or happening because we had small eyes.

As I take a deep breath in this afternoon on my patio, relishing the fresh, clean spring air, I am reminded that although I have BPES, I can appreciate that I don’t have allergies.

Someone Like Me

When I was growing up, the Internet was just starting to become popular and Google and Facebook didn’t exist.  So I only ever saw people from my family that had eyes like mine.

Now, when I do a Google image search for “BPES,” it is weird to find a group of people who look like they could be related to me, but they aren’t.  I don’t really know how to describe it, but it is just surreal to stare at these faces of strangers who look like they should be family.

I recently realized that there are Facebook groups for people who have BPES.  When I search for “BPES,” two groups come up.  One has about 1,400 followers.  This surprised me.  All of the information that I have read about BPES says that its prevalence is unknown.  The group is larger than I expected.

You would think that I would automatically ask to join (it is a closed group), but I find myself hesitating.   I am a private person.  Even just doing this blog is a big deal.

There is also the fact that it is on Facebook, and they have had their privacy issues.  I know that doing a web site and a blog is very public, but on Facebook, anyone in the group could click on my name and see basic profile information.  I feel like anything I would post to that group could be amplified even further if people share it with their friends, not to mention what Facebook could do with the data.

I suppose I wouldn’t have to actually post anything.  I could just listen to others.  I’m not sure what is holding me back, or where my privacy paranoia is coming from, but I am going to keep thinking about it.  If I join, I will provide an update!

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Eye boogies

When I was in middle school, sleepovers were a huge social happening. One of my friends had this amazing house that was perfect for sleepovers, with a guest bedroom over the garage where we could goof off without disturbing the rest of her family. We would giggle, chatter, laugh, gossip, and play silly games well into the night. She had a male cousin, Josh, around our age who would always come and hang out whenever she had these epic sleepover weekends. Socially he somehow managed to blend in seamlessly with a group full of girls. He would sleep in the house separately while all the girls slept in the room over the garage. During the day we would all watch movies, play games, and jump on the trampoline together. Somehow it just worked that he was like a brother to the group, annoying us a bit, but no flirting or awkwardness whatsoever. An impressive feat for a group of ungainly adolescents.

One morning during one of our sleepover weekends, as we groggily all got ready to roll into the kitchen for breakfast, I distinctly remember Josh rubbing his eyes and saying something like “I didn’t get all the eye boogies out yet.” Half my girlfriends all squealed at the fact that he used the word boogies. I would argue those were probably girls who didn’t have brothers. His word choice made me giggle and I was struck with the thought – other people get goop in their eyes too?

As a kid, most mornings I would wake up with stuff in my eyes. I remember at times I used to be paranoid that I had conjunctivitis! It never occurred to me that this happened to more people besides me. I felt such a sense of relief when Josh talked about his eye boogies. I thought, “oh thank god, it’s normal to have stuff in your eyes.”

Years later after my brother and his wife had their first “teddy bear eyed” baby, we were all together as a family talking. Somehow the topic of caring for small eyed babies came into conversation (riveting family small talk, I know). I think my brother’s wife was mentioning how she had to clean up the gunk on her newborn son’s tiny eyes each morning. My mom very shyly and humbly commented quietly on how she had to do this for all four of her kids. It melted my heart because my mother is an incredibly loving, selfless human. Her ability to patiently nurture her kids selflessly will forever humble me. It also made me laugh because I love conflict and speaking my mind, and here was my kind, quiet mom in almost a passive aggressive way essentially proudly telling my brother’s wife – no shit, that’s how you deal with kids with small eyes, get over it. She probably didn’t mean it that way, but I saw it as throwing shade over how to care for babies with small eyes. Hahahaha.

These two memories sit firmly in my mind in relation to my eye boogies. After my surgery, I don’t experience eye boogies in the morning nearly as much as I used to. I do continue to wonder if my fellow peeps with BPES also wake up with a little bit of goop in their eyes. Does that happen to everyone or is it specific to us buttoned eyed folk?

Baseball Gestures

The beginning of this month was opening week for Major League Baseball.  I have always been a baseball fan and try to keep up with news around the league.  One story that caught my attention actually happened during the World Series last fall.  During one of the games, Yuli Gurriel from the Astros homered off of Yu Darvish from the Dodgers. After Gurriel rounded the bases and sat back down in the clubhouse, he pulled back his eyes with his hands and appeared to taunt the fact that Darvish is Asian.  Apparently, he uttered a slur in Spanish which means “little Chinese man” even though Darvish is Japanese.   Out of curiosity, I googled Gurriel’s name and one of the main images that comes up is of his gesture:

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As a result, he was suspended for the first five games of the season.  According to this article from USA Today, in the off-season, Gurriel received sensitivity training.  He claims where he is from (Cuba) it is not seen as offensive, but he recognizes the need to understand other points of view.

As someone with unique eyes who has been subjected to a lifetime of scrutiny, this incident caught my attention.  I am glad that he was disciplined and I hope that he took away from his training a better understanding of being sensitive to people’s differences.

I think the part of the article that was concerning was that Gurriel said he didn’t even realize that he was doing it.  This makes me sad that taunting someone for being different is subconsciously ingrained in him.

Throughout all of this, Yu Darvish took the high road, saying he knew Gurriel didn’t understand what he was doing.   I have never really had someone make fun of me to my face like that.  One time a woman I did not know said to me “Wow, you have small eyes!” I don’t think she was making fun of me, but was curious and made a stupid comment.  I kind of froze and didn’t really say anything.  I was honestly kind of mad because in my head I was like “Who is this lady and why does she think it is okay to comment on my eyes?”  She then realized what she said could be offensive and added, “They are pretty.”  I just kind of nodded and walked away.

I always wonder what I would do if I were in Yu Darvish’s situation where someone was blatantly offensive.  I would like to believe that like him, I would have a mature response.  But sometimes when something like that happens, you never know how you will react.

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