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.

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.

 

2.0

Riding Around Asia in Taxis

We’re back from hiatus after taking some time away from BPESisters to disconnect and focus on other priorities. We’ve been itching to get back on the blog and are excited to say a belated hello to 2019.

A few weeks ago I was in a taxi between meetings, with a particularly opinionated cab driver. I find there are three types of cab drivers: those who don’t speak at all during the trip, those who exchange some pleasantries and brief chatter at the beginning of the journey, then slip into silence for the rest of the trip, and finally those who chatter nonstop during the entire ride. I appreciate all three depending on my mood. It doesn’t always happen that my mood matches that of my cab driver. I might be feeling outgoing and chatty only to get in a taxi with a silent driver. Or as was the case a few weeks ago, I really just needed some quiet time to reflect and rest, and my cab driver talked to me the entire trip. He was friendly enough, but he made some rather radical political statements. I politely went with the flow and acknowledged that we all have different opinions, without really agreeing or disagreeing with his statements. The conversation got weirder when he started to allude to my appearance and my eyes. I knew where this was going. As a woman with BPES I can tell when someone wants to ask me why my eyes are so small or if I have Asian heritage. It drives me crazy EVERY SINGLE TIME. As an adult, I have been able to brush it off much more easily. I used to get annoyed, stand offish, and defensive. I think ultimately what really annoys me is that I just think it isn’t someone’s business to ask me about my eyes. I am not embarrassed, self conscious, or ashamed of my BPES-related features. I just feel that I shouldn’t have to explain my features to others. Their curiosity or confusion should not become my burden.

I took a deep breath and cut him to the chase, telling him if he was wondering if I was Asian, I was not. He then proceeded to make some rather racists statements. I politely informed him that his statements were not acceptable to say and offensive. Thankfully we were very close to the end of my ride. Amongst other things, this ride stood out to me because after being in Asia for about seven months, that was the first time someone here asked me if I was part Asian. I can’t help but wonder how many other people assume or think this, but are too polite to ask. I laughed off my cab driver and was mostly thankful that I safely got to my destination in tact. Funny how it rarely happens now, but each time someone asks me about my eyes, something deep in my gut triggers, and I get prickly, annoyed, defensive, and irritated by the entire thing. Thankfully once I shut the cab door and walked away from the curb, I was able to leave my irritation behind and not give it a second thought. I laughed it off as as crazy cab ride.

Tip of my hat

One of my favorite parts about launching this website is learning about my sister’s experience with BPES. We share a lot as sisters, but it still strikes me when I read her posts and think – “I had no idea that happened to her!” My sister and I have talked in the past about how difficult it can be to find sunglasses due to our BPES features. I have also had hat struggles that she describes in the last post. As a kid, I could rarely put on plastic kid sunglasses or a kid’s baseball hat and have it work on my face. As kids, we would attend an event, visit a museum, or go on a field trip and potentially get a free baseball hat. I used to be thrilled at getting something free, but I could never figure out why the hats looked so natural on my friends, but somehow just didn’t sit quite right on my head. I didn’t realize until years later that part of my struggles could be attributed to our BPES facial features. I also learned as an adult that one size rarely fits all. I am now much more selective when trying on hats and sunglasses, truly only buying something if it really fits and compliments my face. Thankfully there are many more options available compared to when we were kids in large part due to online shopping.

Her post struck me because it took me YEARS to realize that ear warmers work really well for my face and ears. I had an ear warmer my sister actually got me that I loved, but I think it fell out my bag at a movie theater in Amsterdam last year (devastating). This winter hopefully I won’t have the need to don headwear as I am in the tropics. However, I want to tip my virtual hat to my sister in all her BPES glory for rocking every kind of winter hat beautifully this season. Even though I will be spending this holiday season alone, I hope to rock my matching “SLAY” winter hat as well as she does in BPES solidarity.

Hats off

It’s starting to get colder, which means I’ve begun to wear my winter coats, scarves, and gloves.  Along with this comes my yearly reminder that I don’t like how I look in hats.  Since I have BPES, my ears stick out slightly, and one ear sits up just a bit higher than the other.  I have spoken before about my struggle with baseball caps, but at least those are optional.  When it gets cold, if I don’t put something on my head, my ears will freeze.

I usually keep a knit ear warmer in my bag in case I need it.  I also have one of those hats that has fur and flaps over the ears, and I don’t hate how I look in it.

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But when it comes to just a knit cap to put on my head, it is hard for me to find something that is flattering.  Usually I just go with the ear warmer or put up the hoods on my jackets.  If it is really cold, I put on the hat with the flaps.

I do have 2 knit hats that I like, but I don’t love how they look on me.  I know I shouldn’t care, and this winter I am going to make myself use them more.   I try to tell myself not to be self-conscious, because other people probably don’t even notice.

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2.0

You talking ’bout me?

This Friday my office had a happy hour after work. As I was chatting with colleagues in a non-work setting, I made some offhand comment about using checklists with my mom as it related to a story I was sharing. My colleague immediately jokingly asked if my mom was Singaporean, making a subtle reference to her perception of the overly structured expectations in Singaporean business culture that we are currently experiencing on our project. My mind immediately jumped to the thought of “oh my god, does she think I am half-Asian because of my eyes?” I jokingly laughed it off and the conversation moved onward. Only a day later did it occur to me that I think she was just making a joke about our client. I don’t think my self-consciousness will ever leave me where I consistently jump to conclusions that people are judging me based on my eyes. Oftentimes, they probably aren’t, but that still remains my first interpretation or in the very least something I wonder. I don’t know how to effectively un-train my brain on this one.

If I Had a Billion Dollars

The latest Mega Millions jackpot got up to 1.6 billion dollars.  I never play the lottery, but every once in a while when there is a large jackpot, I will cave and get a ticket.  So on Tuesday afternoon before the drawing, I ran out to the liquor store and got a quick pick ticket.  I didn’t really expect to win, but it was hard not to daydream about what I would do with the money if I won.

I imagined paying off all of my debt, getting a luxury high rise apartment with a water view, and traveling the world.  I would give away money to family and friends, set up college funds for my nieces and nephew, and donate to charity.  I would splurge on a Chanel bag and Louboutin shoes.

I did not win, but it occurred to me that in all my thoughts about what to do with the money, not one of them was for cosmetic surgery for my eyes.  I am happy that this thought did not pop into my head.  It shows me that I am confident and secure with my unique look, and wouldn’t want to change that, even if I had a ridiculous sum of money.

money

Mistaken identity

I recently started on a new project at work. I am working in a two person team with a woman who is a similar height as I am. Some people at the client repeatedly mistake me for my colleague, calling us by the other person’s name. It is a bit strange as we feel we look quite different. We are having a hard time understanding why they keep confusing us and calling us by the other’s name. We are of different races. She is Asian and I am Caucasian. I also wear distinctive glasses and she does not wear glasses. We think it is funny, but also a bit weird that they can’t tell us apart. I hate that I always wonder in cases like this – do they incorrectly think I am Asian due to my BPES eyes? In truth, I have no idea what they are thinking. It is funny how we project our thoughts onto others, when in reality, maybe these people at my client are just terrible at remembering names or telling people apart. I’m not convinced though…

Cleanin’ Out My Closet

This past week I have been reading the book “The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing” by Marie Kondō.  I have always been a minimalist and tried not to keep things I don’t need, but I knew I had some room for opportunity.   As I was reading this book, I went back through some of my old stuff and ended up with three garbage bags full of items to discard!

As I was going through items that I was keeping, (like my old vacation scrapbooks that I made back when I used disposable cameras and developed pictures of my travels), I thought about how it would be cool to show these to someone someday.  But then I kind of froze, thinking, oh yeah, because of my BPES I can’t have kids, and I don’t really see myself doing IVF or adopting, so who would I even show these pictures to?

I decided to keep them as happy memories for myself, but it got me thinking.   People who have kids can pass stuff down to them, and tell them about their life and adventures.  I won’t have anyone to do that with.  It made me think that maybe instead of having a child to carry on my legacy, I should write a book about my life with BPES.  I could just self-publish it on Amazon or something.  And even if no one reads it, I would feel like I was passing on my wisdom, and my life lessons and adventures would mean something.

cleaning

Rub me the wrong way

I am tactile. My hands are forever moving. If I go out to eat where they provide a straw with the drink, I will save the straw paper and twirl it in between my fingers throughout the meal. I get disappointed if the waitstaff clear away the straw paper during the meal. Borderline compulsive? Maybe, but many of you can probably relate in one way or another, which leads me to believe something else is at play here.

In the age of smartphones where many of us have shorter attention spans and a compulsive twitch to have our thumbs nearly constantly swiping our devices, it is even harder for me to keep my hands still. I remember distinctly watching my mom twirl the cord on her jacket absentmindedly when I was in high school and I thought – that’s where I get it from. The sad part for me is that I’ll never know how ingrained this habit was prior to smartphones. I wonder if my phone exacerbates the problem or is creating a new problem built off of my childhood urge to have my fingers always in motion.  I’m not sure if I would have outgrown this habit or if smartphones just offered a new vehicle for an existing behavior that was going to manifest itself regardless.

It astounds me when I sit in meetings at work and observe how many people rub their fingers in some way, when they don’t have them on their keyboards. Do we live in an age where we can’t keep our fingers still due to the addictive nature of mobile technology? Or does my line of work just attract the kind of people who are always moving their hands in some way? Several people in my office purchased the latest rage of fidget toys intended for children with emotional or learning disabilities. These small hand held toys are meant to give them something tactile to fiddle with in an effort to calm them and help them to focus. Most notably, several of my colleagues independently started bringing the Thera Cube toy to meetings in the last year. Is this brought on by smartphones or has the research just advanced in a way where we can more accurately diagnose this constant need to fiddle in certain people? All this just to help adults keep their forever twitchy fingers occupied. It actually makes me think about the character “Thing” in the Addams family a bit. Forever moving.

At some point in high school (I think) I adopted the nasty habit of transferring my tactile need into rubbing my eyebrows. At this point, I don’t even remember when I started doing this. I think it was around the time I started plucking my eyebrows, so perhaps I didn’t pick up this nasty habit until college. Whenever I was reading a book, studying, or concentrating on something in front of me on my desk, I would start absentmindedly rubbing my eyebrow. Part of the reason for this was that my hands were searching for some type of tactile stimulation and my eyebrows (dedicated companions) are easily accessible and always present. Likewise with my plucking, as individual hairs grew back in, my brow line provided a stimulating landscape to sooth my forever twitchy fingers.

In the last few years, I have realized that if I am not mindful, I can actually absentmindedly rub my eyebrows so much that they start to ache. Essentially, the behavior is getting worse. Unclear if I am doing it more frequently or if the toll of years of rubbing is starting to add up and my eyebrows are making their grievances known. I now have a few individual brow hairs that are almost impossible to tame and always curl up to stand on end in what I can only assume is the result of my incessant rubbing. As I mention on other pages on the site, I was really concerned about this leading up to my surgery. I cannot stress enough how terrified I am that I will now damage my sling from surgery or hurt my eye in someway. And yet it is so hard to stop.

I am embarrassed by this behavior, which I mostly do at home, but now it is so ingrained when I look at a computer screen and concentrate, or at my phone, I also sometimes catch myself doing it at work. Having watched myself in a mirror, I can confirm it looks bizarre. In the off chance I catch myself doing it in front of a colleague, I feel extremely embarrassed, as if I were caught picking my nose. It is something intimate almost that I would not want someone else to catch me doing. This feels extremely unprofessional for me. I mostly do it at home and occasionally at my desk by myself at work. If I do catch myself doing it in meetings, I immediately stop and feel very embarrassed. It is almost like thumb sucking in a way.

When I became aware of how bad this was getting, I did try a few different interventions in the past. I used to use brow gel on my eyebrows as a tactile reminder to not rub. That was somewhat successful, but I would still touch the brow. Once I felt the crusty brows, firmly in place with gel, I would mostly put my hand down. I also tried putting olive oil on my brows, but unfortunately as the day went on and if I started to sweat, the oil would slowly seep down into my eye, which was quite uncomfortable and caused my eye to tear up and have my face to be dripping with oil. Although it made my eye water, as I write this it is kind of funny that I had olive oil seeping down my face all in the name of my inability to calm my forever racing fingers down.

In a wave of shame and curiosity, as many people now do, I took to the internet to see if I was alone. I found many resources around people with compulsive behaviors for picking out their eyebrow hairs until they are practically bald. While fascinating, I do not have that problem. I couldn’t really find any reputable source that just referenced this idea of rubbing your eyebrows. While it sort of made me feel better to see that many people struggle with something like this at some level,  it wasn’t particularly reassuring. I was hoping to understand why it was happening, so I could try to make my situation better. I also don’t feel like I do this so much that it is a mania, a compulsion, or an addiction. It really is just a bad habit that I fall into absentmindedly depending on what I am doing. I do think when I am stressed or tired I am more likely to do it. This is logical though based on how we handle habits and what our default behaviors are when self control is diminished. After spending more time on the internet on this topic than was probably needed, I concluded that therapy didn’t seem like the appropriate intervention in my case. Wary of all the sensationalized internet blog posts, I didn’t feel any better and I wasn’t any closer to finding a way to stop.

I am really hoping with meditation and being mindful, I can break this habit. It bugs me that I let it get so out of hand that it is now taking a LOT of my energy and self control to make it stop. It has become such a nasty automatic habit that I rarely catch myself starting to do it. Only after I have started rubbing my left eyebrow in a fit of concentration, do I realize what I am even doing.

With a huge move, you have an opportunity to set up new habits and leverage your new environment to shake off old habits. When my sister was here with me when I first got to Singapore in August, I made it a point of telling her that I wanted to shake this habit. I keep repeating that in Singapore, I don’t rub my eyebrows. The problem, I have quickly discovered, is that even though I am in a new environment, my trigger behaviors – being on my personal or work laptop or my phone – came right with me to Singapore. I have caught myself rubbing my eyebrow (usually my left eyebrow) in times of working on my laptop, deeply concentrating while reading emails for work, or just plunging into the wormhole that is social media on my phone. Even though I am doing it less, I have still caught myself doing it. I am still wondering how the heck I stopped doing this cold turkey back when I had my surgery.

I am determined to break this habit. One of my largest fears around this as I’ve alluded to in other blog posts is the impact on my surgery. I do not want to have surgery again and I am terrified that all my rubbing will mess up my sling in my left eye. I know that one strategy will be to find a replacement activity. How I got here in the first place was essentially by transferring this need to always be rubbing my fingers to my eyebrows. Previously, I may have picked at my cuticles, pulled at a loose thread on my clothing, rubbed my thumbs together, or ran my fingers repeatedly over my manicured nails. Regardless, I have carpal tunnel syndrome (a story for another day) so any repetitive movement I do with my fingers is not great for my wrists. Ideally the goal is to retrain my brain to keep my fingers still. The real question for me is – is this something I am just hardwired to do or did I teach myself this behavior over time? I am excited to unlearn this nasty habit and fingers crossed it has not done any damage to my eyes.