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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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Must be the BPES

Until we learned about BPES, I never realized that my nose was a little different. I always thought I just had small eyes, never realizing that some of my other facial features were also a little bit different as well. I focus a lot on my eyes on these pages, in part because this is what people commented on so much when I was a kid. It is the most visibly obvious difference and our childhood experiences have such a profound impact on our psyche. Another visual indicator of BPES is a flattened nasal bridge. My eyes are farther spaced apart, which can help to contribute to the “buttoned eyed” or “teddy bear” look.

Now that we know we have BPES, it explains a lot, like our ears, nose, and eyes as well as the secondary amenorrhea. I have been having so many issues with my eustachian tubes, it’s got me wondering… are there other issues I have that are due to my BPES? We thought it was so funny that having small eyes and infertility were related. Sometimes I think I associate small bodily annoyances that I can’t explain with BPES. I have no idea why my ears always seem to pop and I am extremely susceptible to getting water in my ears. Is there something wrong with me? Am I being paranoid? Or is this some other BPES thing? Who knows!I want to know what is up with my ears. In running through all the possible explanations, BPES crosses my mind. Unfortunate that with my personality, I love to understand the “why” behind something – to the point that my inquisitive nature can drive others crazy. Blame it on the BPES.

Lost my “Bit mojo”

Recently Bitmoji had a message pop up asking me to update my avatar to the new look.  I was like sure, why not and clicked on it.  As I was going through, I picked out a new hair style and a new face shape, and then I got to the eye page.

There are 9 options for eye shape and they all look almost the same to me. The shape just changes slightly but they are all the same size:

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Since I have BPES and very narrow eyes, I just didn’t see an option that even comes close to what I have.  I selected one the best I could and moved on.  When I looked at the eye size option, it appears to just be for the pupil:

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Now I know Bitmoji are just silly caricatures, but it is interesting to me how there is a lot more variety in some of the other categories, like hair.   And I think my new version does look like me, it is just that I am not used to seeing an image of myself with larger eyes.  I guess I will just have to wait until future updates to see if they change up the eye options.

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High all the time

In college one of my favorite professors was my Spanish professor. I minored in Spanish so I had several classes with him throughout my time in college. He was from Spain and was just a stereotypical Spaniard in so many delightful ways. He brought the European approach to class and was much more laid back compared to US professors. He would get very homesick for Spain from time to time and we would have events outside of class related to Spanish culture. Sometimes he and a few other professors from the Spanish department, along with a group of students would go Latin dancing at a local Mexican restaurant for their salsa night. It was always lively and full of homesick student and professor expats. Between classes and off campus events, I felt like I’d had good interactions with him over the years and we had developed a positive student/teacher relationship.

Towards the end of my senior year, during one of our Spanish conversation classes, he casually mentioned in class discussion how I was always high in class. I was appalled. I felt I worked hard in his classes and I had earned his respect with my level of Spanish and as a serious student. I got good grades in his classes and I enjoyed having him as a professor. I also felt like we had spent enough time together that he would know me better than that. Our school was known for being very liberal, located in a smaller college town that is notorious for having a hippie, laid back counter cultural vibe. At the time I was in school, legalizing marijuana was something that wasn’t remotely taken seriously and it would be years before we started to see things like the law changes in Colorado and elsewhere at the state level. Weed smoking was really common and accepted around town, making the city a bit unusual at the time. That was not my thing. I was in college to get a degree, not to mess around. I was so annoyed, insulted, and irritated that my beloved professor thought I was stoned all the time. I felt like all my hard work was reduced to an incorrect stereotype based on my appearance.

My sister’s post last week about sleepy eyes got me thinking about people who misinterpret our BPES as us being high. This drives me nuts! I get so annoyed when from my perspective I feel it is very obvious based on our actions, environment, and behaviors that we are clearly NOT high from smoking weed. I think, how could this person be so stupid to think I was high? So many times in our lives, we have been mistaken for being Asian based on our BPES. It doesn’t happen as often, but we do get mistaken for people who are high all the time. I find it laughable, insulting, and just a little ridiculous. Writing this post, my heart sinks a bit as I dig up memories of my Spanish professor’s side comment. I still think back fondly on this professor, but his one comment so many years ago clearly left its mark on my psyche. ¡Que lástima!

Sleepy Eyes

On Sunday I was perusing Twitter, and saw that the one of the items that was trending was Chuck Todd, host of the show “Meet the Press.”  He was trending because President Trump insulted his eyes, calling him “sleepy eyes” and saying he was a “sleeping SOB.”

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I know that this is not the president’s first incident of name calling.  I am not comfortable with the president insulting anyone, but as someone who has unique eyes, this particular insult hit a nerve.  I don’t think Chuck Todd has BPES like me, but he does have narrow eyes.

I have never understood name calling.  What is the value in it?   Insulting someone’s physical trait and making fun of them for being different makes it seem like only “normal” people are good.  This is dangerous to me, especially because it came from a man who is supposed to be a leader and represent our entire country.  If the president disagrees with something Chuck Todd has said or done, than he should come out and talk about that.  It seems pointless to just make fun of his appearance.

It also makes me wonder, if I met the president, would he call me “sleepy eyes” too?

I was fortunate enough to never have someone call me a name or make fun of my eyes to my face.  I have always gotten and continue to get curious questions and stares.  I don’t know how I would handle it if someone said something rude to me publicly.  Here is how Chuck Todd responded.  He seemed to try to make light of it:

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It will be interesting to me to see if in the coming months the president continues to “normalize” name calling.  If so, I wonder if it will embolden more people to speak their minds and point out other people’s differences.  I guess only time will tell, but I hope that is not the case.

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Women with BPES

Happy International Women’s Day! We love being women. BPES has given us a unique look and that only increases how fun it can be to be a woman with BPES. We’ve hinted at some of these topics on other pages on the site, but I thought I would bring them all together in a post centered around being a woman in honor of International Women’s Day.

Our BPES is based on a genetic mutation that happened when our great grandmother came down with pneumonia during her pregnancy. Between her illness and the treatment, this had an adverse affect on the fetus, leading to our telltale “trademark” as our father calls it – small teddy bear eyes. Or so the family urban legend goes. Our grandfather had “the eyes” and this was passed down to his children. Only the males in the family were born with BPES and not all of them had this condition. It created an interesting divide at times in my father’s family between those siblings who had this condition and those who did not. My family assumed it was a sex linked trait as only male children had the small eyes.

All that changed when my big sister was born.

She had small eyes, disproving the theory that this was a sex linked trait. Both my sister and I have BPES. We were always special as the only females in the family with this condition. A bit later our cousin was born with BPES as well. For me it is a special bond because so few of us have this condition. Now my brother’s youngest daughter joins our ranks. It’s fun to have a small group who understand things like the annoyance of figuring out how and if to use eye liner (although that is some years away for my brother’s daughter!) or just having to deal with dating men who don’t get your look.

Women define their own sense of self, femininity, and womanhood in different ways. Many bring childbearing into the equation of being a woman. For me as a woman with BPES, I am not bothered that I most likely can’t have kids. The infertility component of BPES doesn’t impact my sense of my own womanhood in any way. I feel like a complete woman (and then some!) even though I most likely can’t have kids. The infertility aspect of BPES is like water off a duck’s back for me. No big deal and doesn’t make me feel incomplete that I can’t bring life into this world. Everyone is on their own journey of course and others certainly could feel differently. I respect that.

BPES certainly impacts my overall identity. For me, it just rolls into my overall sense of self, which is strongly grounded in the fact that I am a woman. Riffing off of my sister’s post from last week, my condition does not define me. Hehe, a little tongue in cheek because as much as we dissect it here on the website, our condition doesn’t really impact our quality of life or inhibit us in any real way. We are fierce, strong, confident, sensual women, who happen to have small eyes. And we wouldn’t have it any other way.

Who run the world?

J3

Condition, Disorder, or Disease?

Today is World Rare Disease Day.  According to the official site, “the main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.”  This is the first year that it occurred to me that this could be a day “for me.”  I have never really thought about myself as having a disease.  It made me realize that I wasn’t sure if BPES was technically a disease, disorder, or a condition.  I tried to do some research, but it is very confusing because all of the definitions seem to use the words interchangeably.  I looked at multiple dictionary and medical sites, but here is an example just from Merriam Webster:

To start with, the ‘S’ in BPES stands for syndrome, which Merriam Webster defines as “a group of signs and symptoms that occur together and characterize a particular abnormality or condition.”

It defines a condition as “a usually defective state of health.”

A disorder is “an abnormal physical or mental condition.”

For disease it has “a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.”

So according to these definitions, BPES could fall into any of those categories!  Even on the NIH government site, they use syndrome, condition, and disorder all on the same page explaining BPES. Condition seems to be the word used the most.

Thinking about it, for some reason I have a negative association with the word disease.  In my head, a disease sounds like something that is serious and could cause death.  I think that is why I have always thought of what I have as a condition.  But the whole point of Rare Disease Day is to raise awareness so in that sense I suppose it doesn’t matter, and I should just embrace the day.

I decided that I will be participating by tweeting a picture of my face and using the designated hashtag #ShowYourRare.  That would be the next step for me in terms of putting myself out there.  The first one was this blog.

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Time marching across your face

I have always been a Sex and the City fan. I remember when the show first came out and it was scandalous! As society and norms forever evolve, I think people lose sight of how revolutionary the show was when it first came out on HBO in 1998. It has been interesting to watch Sarah Jessica Parker’s trajectory over the last few decades, raising the classic question – can she ever shake being typecast as Carrie Bradshaw? I have been amazed over the years of how healthy and fit SJP continues to be as more and more time passes from that first episode almost 20 years ago. No matter how amazing these famous folks look as the years pass, there’s one tell tale sign that time is marching on – their eyes. SJP’s eyes show her age. For whatever reason it struck me one day that the best way for me to tell pictures of her between the early years of Sex and the City and now are via her eyes. In more recent photos, she looks just as great as she did in 1998, but her eyes are much more deep set and sunken in.

I was looking at myself in the mirror the other day and noticed that I too was showing my age via my eyes. With BPES, I’ve never had bags under my eyes or wrinkles in my eyelids, in part because my eyes aren’t as deep set as the average person. I just don’t have skin to wrinkle around my eyes. Even with smaller, shallower pupils, my eyes still somehow managed to age. I am fascinated by this. I continue to try to dissect what about my and SJP’s eyes makes us look “older.”  In the words of Dolly Parton’s character Truvy in the movie Steel Magnolias,  “Time marches on and sooner or later you realize it is marching across your face.” BPES or not, we cannot deny the passage of time (across our faces!).

J3

Frozen

Today as I was perusing my Instagram feed, an ad popped up for a local fertility center.  The ad had a picture of a woman sitting by herself, smiling, holding what looks to be an alcoholic beverage, enjoying her life.  The caption promises “Egg freezing allows women to create options for the future.”  I know I was sent this ad because I am a woman in my 30s.  But since I have Type I BPES, I stopped getting my period years ago and don’t have any eggs left to freeze.

As I have discussed before, I am okay with this.  An ad like this does not upset me, but it does remind me that I am not “normal.”  I usually forget that I have BPES, until something like this comes up, and it forces me to think, “oh yeah, for most women my age, it would be no big deal to see this ad.”  But I can’t help thinking, “well this doesn’t apply to me.”

I usually just don’t think about the fact that it is a societal norm that woman are assumed to want children and to be capable of having them.  I have encountered this at work.  When coworkers say, “when you have kids someday” I kind of freeze and it can be awkward.  I usually just try to smile and nod, because that is a lot easier and less personal than having to explain my situation.  I am really torn about whether I should open up and let them know the real me.  I do with most other aspects of my life.  I see myself as a genuine person.

But I have always been a private person, and don’t think everyone needs to know everything about me.  When I hear someone assume that I’m going to have kids, and I don’t say anything, I can’t help but feel torn.  On the one hand, I don’t want to get into my private life, but on the other hand, I don’t want to lie and be fake.  So far I have only discussed my condition with close friends and family, and I have never told coworkers at any job that I have had.

I find it a lot easier to write about it than to talk about it face to face.  But sometimes I wonder if the next time someone assumes, I should just be like, “actually…” and educate them about my condition.

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