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.

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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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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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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?

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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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