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Masks made for me

Where I live, it is mandatory to wear a mask when outside of your home. I have been working through the different options and figuring out which mask works best for a given activity. My sister’s last post had me cracking up because yet again BPES rears its head in the most unexpected nooks and crannies of life. I wear larger framed glasses so I have been fairly strategic in tucking my mask underneath my glasses to avoid fogging them up while I have a mask on out in this hot, humid weather. Recently I tried on a different mask style and I had to laugh! While the mask had a flexible nose piece to help fit it to my face, I had to wear it up so high, the mask was practically covering my eyes so I could barely see. It also felt uncomfortable to have the fabric that close to my eyes. Based on my face shape and the positioning of my eyes, ears, and nose; this mask was not going to work for me.

I was chatting with a colleague about how astounded I was at the number of people wearing disposable masks. I thought this was so wasteful and surely given our situation, more people would leverage reusable, washable cloth masks as a more sustainable option. My colleague pointed out that surgical masks have better nose pieces to fit more easily to your face as they are less bulky when compared to many fabric masks. Truth be told, I do find surgical disposable masks fit my face better with my large glasses and my teddy bear BPES eyes. I have been defaulting to my cloth masks wherever possible, but on occasion when I try to fit my mask to my face “just right” I kind of roll my eyes and giggle because I cannot get a comfortable fit. It is subtle reminder that with BPES small things that seem to work so easily for most, sometimes don’t for us.

Maskin’ it

I have now been in quarantine for 9 weeks.  I have tried to keep busy and stay healthy.  After the first week, it became apparent that I would need to buy some masks.  I ordered some, but they were going to take a while to ship.

In the meantime, I found a video on YouTube that showed how to make a no-sew mask from an old T-shirt.  I figured I would give it a try so I would have something to use until my mask order arrived.

I watched the video several times, and cut up my T-shirt exactly the way the woman in the video did hers.  It basically just involved cutting around a middle piece of the fabric and making straps that you could tie around your head.

When I finished my cuts and held my mask up, I was proud that it looked a lot like the woman’s from the video.  Then I tried to put it on, and it just didn’t sit right.  It came up too high on my face and partially covered my eyes.

I had forgotten that with BPES, my face is shaped differently and my eyes and ears are situated on my head differently than most people’s.  So even though I had followed the instructions, this type of mask just wasn’t going to work for me.

Fortunately, the masks that I ordered were a different style (This was a happy accident.  The reason I got them was that they could be shipped the fastest compared to other companies).  They are from Custom Ink, and instead of tying at the back of the head, they have slits cut into the fabric that you hook over your ear, and there is enough flexibility in the fabric for me to pull down the mask in the front, so it does not cover my eyes like the homemade one did.

It’s funny how on a day to day basis, usually BPES doesn’t really affect my life, and then something unexpected comes along and surprises me.  But I’m always open to learning and adapting, and I’m grateful I found a mask style that will work for me.  Especially since it seems like mask wearing will be the new norm for the foreseeable future.

 

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I had that done too!

One of my colleagues was out for several weeks on medical leave. He didn’t share why he was out, but I assumed a minor procedure. This person is of Asian descent and I noticed before that he had rather droopy eyes. A tiny voice in the back of my mind wondered if he was getting a similar surgery that I had to lift my eyelids. It turns out he did have a similar surgery! I was so curious because from my surgery, I think I had surgery towards the end of the week and I returned to work on Monday. I also think I was on a plane the next week (not optimal, but it was okay). He was having some issues and a part of me wanted to say  – I had this surgery too! I held my tongue though because of his complications and I also assumed his surgery had to be more complex than mine given the longer recovery period. Although, who knows. I was fine to return to work, but I had slight bruising. I put on coverup and a baseball hat and went back to work. I am fortunate that my workplace doesn’t have a dress code. I also had minimal bruising. Maybe he had more significant physical effects and wanted to take more time to heal before coming back to work. None of my business. Granted my colleague does not have BPES, it felt so weird to encounter someone in my life having the same strange surgery I had.

I take great comfort in the idea that what we worry about most won’t be what gets us in the end. I really hope so because I worry a lot that I will have to have surgery again. It was necessary and I am glad I did it, but I also hate that I had to do it. Hearing about his surgery made me stare at my drooping right eye, laugh, and pray to a higher power that everything will be fine and I won’t have to undergo the knife again in this lifetime.

Came through drooping

Call me old fashioned or totally not with it, but I hate selfies. I just never really got the point. Now selfies, wefies, and groupfies are embedded in our daily vocabulary. A deep inner part of my soul still flinches whenever I see a selfie or when I myself partake in this now hackneyed ritual of our daily lives. I am fortunate to be able to travel often. I don’t really care for social media, but I do find a few platforms useful for sharing my adventures with close family and friends. As I live so far from loved ones, posting photos is a great way to stay connected even if I don’t get to share the mundane pleasures, like grabbing a glass of wine with my best friend on a weeknight or meeting friends to gab and catch up over brunch on a weekend. It seems that people just enjoy seeing pictures of YOU and the various sites from your travels, rather than just pictures of the sites and landmarks themselves. I have been better about taking selfies, even though my stomach clenches whenever I pause to take a photo. Remember when it used to be considered so self indulgent when someone took their own picture (it did – I promise you)? Now it is so commonplace. Lately, I started to notice in my pictures that one of my eyes is opening wider than the other. I haven’t been traveling recently, but I have been spending lot so time on video chats. I am worried my eyes are uneven and one appears to be drooping (not again!). One of my biggest reservations about having my surgery was that I might have to have it again as over time the interventions would wear out. I am not sure if I have been rubbing my eyebrows too much and I am doing damage to my slings from surgery, or if my muscles are already giving out. I had to look it up, but I think I had my surgery in 2012. I am paranoid. I thought if anything started to droop, it would happen 20 years later. I know I should go to the eye doctor, but finding a new doctor who understands my condition is such a process, especially in a foreign country that is a little knife happy when it comes to surgeries. Maybe I just need to chill and let my forehead muscles relax a bit…

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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