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.


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.

Wait the FOXL2 gene does what?

Recently in the BPES Facebook group, there have been a few posts by people who have Cushing’s disease.  They asked if others had it or if they knew if it is related to having BPES.  I did not know what Cushing’s disease was, and had to look it up.

From Mayo Clinic:

“Cushing syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time…Too much cortisol can produce some of the hallmark signs of Cushing syndrome — a fatty hump between your shoulders, a rounded face, and pink or purple stretch marks on your skin. Cushing syndrome can also result in high blood pressure, bone loss and, on occasion, type 2 diabetes.”

Then I saw someone in the group mention that the FOXL2 gene (which when mutated causes BPES) that is involved in the formation of the eyelids and in the function of ovarian cells, is also involved in the pituitary gland.  The pituitary gland is the organ related to Cushing’s.

Since I found out a few years ago that I have BPES, I have only ever thought about the eyes and ovaries, because these are my areas that have been directly affected.  But this post caught me off guard.  This is the first time it has occurred to me that having a mutated FOXL2 gene could cause other problems.  This may sound naïve, but I have been pretty healthy my whole life, and other than having unique eyes and irregular periods, there has never been anything wrong with me.

This post made me realize I should do more research just in case.  So if I start to get symptoms of other conditions, I can catch it early.


Hands off my DNA

I have seen ads on TV and online before for getting genetic testing done.  I have never really thought about doing it.  To be honest, it kind of weirded me out to pay to send in my DNA to some company.  Then I saw this article about the company 23andme, and it seems I’m not crazy.  They have sold people’s DNA data to the drug company GlaxoSmithKline.

They say it is for research and to develop new drugs but once they have the information, you never really know what they will do with it.   I couldn’t help but wonder what they would do with my DNA.  With BPES, the FOXL2 gene is mutated.  So even if 23andme claims they send people’s information in a ‘non-identifying’ way, this is something very few people have.

It will be interesting to see what comes of this ‘collaboration’ as they call it.  And if any other genetic testing companies form partnerships.  In the meantime, I plan to keep my DNA to myself.


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!


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.


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:


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.