Poland Syndrome

To the new parent feeling inadequate, you are enough.

Dear new parent,

I see you pushing through your exhaustion to show up for your child. I can hear the crying you fear might not ever end. I feel your insecurities as you wonder if you are making the “right” choices. And I want you to know, you are not alone. Though our stories may be different, we share so much. I see you because I’ve been there myself, as have so many others. So I’d like to dedicate this story of birth defects, breastfeeding and drag to the new parent trying their very best…

I was born with something called Poland Syndrome. I have a muscle missing in my chest cavity which required breast reconstruction surgery when I was 19. As you may be able to imagine, growing up a girl with one fully developed breast while the other side of my chest was caved in led to some insecurities and body image issues. To say the least. And when I got pregnant at 29 years old, I still had never really been able to even discuss my condition without crying. With anyone. Not even health professionals. And even though my reconstruction surgery had been 10 years earlier, I still never wore low cut neck lines or showed any cleavage. So to say I had a complicated relationship with my breasts would be an understatement. Although to be fair, I mostly coped by not thinking about them in any way. I just lived my life and they lived theirs. And the right one even felt somewhat detached from me. In part because I have no nerve sensation in the reconstructed breast.

And so what happened next might surprise you. I decided I had to breastfeed. I’m still not so sure why I felt so strongly about it. I’d like to say it was totally out of a conviction that breast milk would be best for my baby. But I am sure there was also some part of me that felt insecure about my womanhood and thought breastfeeding would affirm that my breasts were good enough. Or something. I researched whether it was possible, confirmed one breast would be able to more than supply my baby, and set in stone my plan to breastfeed.

Now if you have any insecurity as a person, being a parent will magnify it ten times. I had a baby with the sweetest disposition. One who had no colic, never really cried much to speak of…except every time I tried to breastfeed. Then my little newborn angel screamed like we were in a scene from the exorcist. I’m not even exaggerating. (Okay maybe slightly) But my new baby did not like my breast. Cruel irony or a supernatural joke, I’m still not sure. But every feeding session in the first few weeks was heartbreaking. I followed all the guidance. I would try to breastfeed for at least 20 minutes or so before offering a bottle with milk I had pumped. My baby outlasted me every time. And it did cut me to my heart a little each time my breast was rejected. Except the miraculous thing about being a parent is, I didn’t take it personally. Even through my jokes about cruel ironies, I knew somehow, the baby wasn’t trying to hurt me. And so I kept trying…

And thankfully, I had a lot of support. From family and professionals. The lactation consultants at Huntsville Hospital were so supportive. Prior to giving birth, I had never been able to discuss my Poland Syndrome or my breasts without crying, and that was on a good day. Now I had to go in and explain to a stranger why milk was only being produced out of one breast, and ask for them to help me make my baby accept it. I don’t remember the consultant’s name, but I remember she did me the greatest kindness- she did not act surprised or even interested in the reason I had only one milk producing breast. She acted like it was no big deal, and a common issue. I will be forever grateful for that gift. Because I was already scared and fragile. And I felt like she responded to me, not to my issue.

And I really don’t believe she knew about Poland Syndrome until that day. No other health professional I have ever come across before or since has. Usually they ask me to spell it and ask other questions. When I was a child, doctors would parade medical students in to look at me. And I felt like a medical oddity. A freak. But not on that day in the Women’s Clinic. On that day, I felt like a whole person needing a little help. And she tried to help. Gave me a supplemental nurser and taught me different holds and techniques. And none of them worked.

In the end, I pumped milk and for 5 months fed my baby exclusively breast milk but from a bottle. So even when the baby started to sleep through the night, I had to wake myself up every few hours to keep on top of the pumping. It is exhausting just remembering that time. I’ve been trying to remember why, or how, I kept it up for that long despite well meaning people advising me to just switch to formula.

That baby is now nearly 16 and a big fan of RuPaul’s Drag Race. I’ve been watching too for the last couple of years. At first out of some parental obligation to monitor and discuss the content, but now I am hooked as well. RuPaul sings, “We’re all born naked and the rest is drag.” Truthfully, I didn’t really get that until Oprah came on an episode and quoted it, and then I heard the wisdom! I may have been disguising a birth defect, but we all cover up things. We all dress up and perhaps even hide parts of our selves. And in the last Season Finale of Drag Race, Brook Lynn Hytes’s mom said something about how she thought she was meant to raise and shape her kids, but actually each of her four children formed and shaped her. We get the children we need. They teach us as much as we teach them. I got a baby who taught me I was strong enough to overcome my insecurities. And that what I was hiding under my drag was always good enough.

And dear reader, you are enough too. Love, Angel x

Becoming Whole

If you asked someone to describe me, I have no doubt you would hear things like, “She talks a lot; she talks fast; she is outgoing” And I do. And I am. At any point in my life you could have observed me in a large social group seemingly in the center of it laughing and having fun. Which I was most of the time. What you could not have seen is how broken I felt or how much anxiety I held surrounding a secret I kept from almost everyone.

I was born with a rare birth defect called Poland Syndrome. A fancy way of saying I was born without one of the muscles in my chest that everyone else has. As a result, my right breast did not develop or grow at all. In fact, that side of my chest was sunken in a bit.

Outwardly, I did not let this affect me much. Intellectually I knew many people had way more serious problems than I did anyway. In many other ways I was so blessed. Wow. Even in my own confessional I am having trouble owning my own pain. It is much easier to rationalize why this shouldn’t have affected me than to continue with the story of how it did. Deep breath and trying again…

To say I was a social adolescent would be an understatement.  For example, I was voted “most-talkative” my senior year by a landslide.  And throughout my youth, I had many wonderful friends. One of whom would mockingly call me “little miss activity” because I was involved in so many things. My point is that I was not off hiding in a corner. I was hiding in plain sight. I was hiding my shame. My sense of knowing I wasn’t whole. My fear that if any of my “friends” really knew what a freak I was, they wouldn’t like me. My terror that at any moment the grotesque truth would be revealed and people would no longer be laughing with me, but at me.

Now this is not to say I was always thinking those thoughts. But there were SO many normal moments and times that brought them to the forefront again of my mind. Things that are supposed to be joyous or rites of passage were the moments when I was most vulnerable to those thoughts of being a freak: changing for gym class, going swimming, shopping, (low cut clothes were my nemesis) dating, making-out, looking for dresses for dances, costumes I had to wear for choir and plays, sleep-overs- the list could go on and on. But you get the idea.
Every shopping trip ended in tears. Every time I was required to change clothes in front of people I was nearly paralyzed with fear. And I learned so many ways to change without being seen. All while being the most-talkative.

And being the social butterfly that I was, I also dated. A lot if I am being honest. But it felt too often like a chore. Instead of enjoying a kiss, I was constantly monitoring hands and positioning my body in a way to keep my secret hidden. And most of the time thinking the boy only liked me because he didn’t know what I really was. Thinking that I had fooled him into thinking I was whole and desirable. And so dating and being popular became a way of convincing myself I was good at hiding my ugly truth.

Now here is the good news part. My saving grace. Or rather my self-esteem saviors.  For I did somehow mange the courage to confide in a handful of friends and boyfriends through the years growing up, and every one of them contributed to saving me. Of that I am certain. Because by some miracle, no matter how immature the person was that I trusted with this confidence (I mean literally age-wise immature), every one of them uplifted me. None of those confidants made me feel anything less than whole. And a few of them made me feel genuinely beautiful.  And for those precious moments in my life, I almost believed that I was beautiful. But then I would look in the mirror. And the shame and fear of everyone knowing would overcome me again. And I would continue to hide.

I sometimes think about how my life might have turned out differently if even one of those friends had reacted the way I feared people would. If one of them had ridiculed me. If one of them had said, “well, I liked you before, but now that I really see you…” I honestly have no idea how my self worth might have been damaged beyond repair. But I suspect that it would have been. I was so fragile and on the edge emotionally. But not one of them pushed me off it. Instead, they each helped make me a little less fragile. And so to those life-saving friends, I am eternally grateful. Because they helped push me away from the edge and little by little onto a path of wholeness.

And it has been a long path. I had reconstructive surgery when I was 19 years old. And despite the breast implant, or maybe because of it, I still felt like a freak for many years. I could not speak about my Poland Syndrome to anyone-doctors, friends, family members, anyone- without crying until I was about 30. And I continued to hide my scars. My literal scars.  I did not wear a bathing suit or shirt with a low neckline until I was 39 years old. I honestly could not do it. And again, this despite all the love and acceptance of my husband and every other friend along the way that knew my secret.

The shame came from within. The fear and the loathing were self generated. Truth is, I am whole. I was then. I have as much worth as anyone to be loved. I did back then too. A fact that was reinforced by those life-saving friends. Everyone needs to be loved in a way that makes them feel whole. And we need to love ourselves that way too.

So why am I confessing this now? Well, I am at a UU leadership training and today we watched a TedTalk by Brene Brown on The Power of Vulnerability. (A talk I highly recommend you go watch.) And during her talk, she spoke of how shame and fear keep us from being vulnerable, which keep us from being fully happy and successful. And it struck me that I wanted to tell my story. And by struck I mean I was crying uncontrollably and was only able to stop crying when I began to write...

And so I write this for two reasons: One to tell my story and free me of any last hold that shame had on me. And secondly, to send this message out into the world: It is impossible to see who doesn’t feel whole. It is not always the people hiding in the corners. Sometimes it is the social butterfly seemingly flitting through life.

So many of us feel shame, and too many of us feel we need to hide something. For some it is addiction, or abuse, or body image, or family dysfunctions, or sexual orientation, or gender identification, or mental health issues or something else I can’t even conceive of but that is crippling for another. 

And so my prayer is that this story finds it way to someone who needs to hear it. Someone who needs to hear that even extroverted, successful people with seemingly full lives can feel broken. Can feel shame and fear of acceptance. You are not alone. 

And I want you to know dear reader, that you are whole. You are worthy. You are loved. And so am I…