My Daily Battle With Poland Syndrome

Many people have commented on my previous post (I Have Poland Syndrome) that they admire my courage and bravery in sharing my birth defect with the world. They appreciate that I look on the bright side and love life, being confident that God made me this way for a reason.

Well, I want to let you in on a little secret... I'm not courageous. I'm not brave.

I'm self-conscious.

Now, some of you might think that I am courageous relative to others that have Poland Syndrome. Others with this birth defect are afraid to even tell their closest friends that they have a misshapen body and a figure that would get stares from people at the pool or beach. That may be true, but it is hiding the whole truth.

The reality is that all of my family and friends often forget that I even have Poland Syndrome. They thought it was interesting at first, and now they don't even notice it. It is not who I am, it's just what's under my shirt.

The real battle is with my own self-image. I still see my one-sided chest every morning. Every day I see my puny right bicep and thin arm. When I have my shirt off at the pool, I often intentionally put my towel over my right shoulder in order to hide my missing right pec muscle. When I pose in photos, I often intentionally stand on the left side of people to show off my left bicep rather than exposing my right. These are things I think about.

The first photo above was taken four years ago when we moved to Portland. I have this photo in a frame by my desk at work and every time I look at it, it reminds me how I purposefully stood that way to hide my right arm. I like the way I look in it because it shows off my left bicep and pec muscle.

The second photo was taken about a month ago. In this photo, I immediately look at my right arm and see how small it looks. Many would say "Aaron, it doesn't look small. It's not a big deal," but it looks small to me. I struggle with focusing on all of the joys in the photo. I'm not ignoring my beautiful wife and cute son on a beautiful day at the pumpkin patch, it's just that my eyes keep panning down to my arm.

This is the battle of self-image that I struggle with. It's not eating me up inside or anything. I live a pretty normal life. Most of my time is spent thinking about work and my loving family that I come home to every day. But those other times of the day when I am daydreaming or looking at photos, I see a man who is not as physically attractive as I would like to be.

The life-long battle of being self-conscious is one that will never end. I am constantly fighting these self-image issues and accepting the fact that I am different. Some days I love being different, while other days I wish I had a normal chest and two normal arms. It's a battle that I don't think I'll ever win... but I don't ever plan on losing the battle either.

God tells us in the Bible that although I want to do good and think good thoughts, evil is right there with me. The battle of my flesh is raging with what I know God wants: He wants me to focus on the love that Jesus covers us with...no matter what we look like. My body will eventually waste away and die, and it is what's in my heart and soul that counts. Thanks be to God, who delivers me through Jesus Christ!


Related posts:
I Have Poland Syndrome
My Tattoo
Will My Child Have Poland Syndrome?

Will My Child Have Poland Syndrome?

What's the number one question people ask when you tell them you are going to have a baby? "Is it a boy or a girl?"

When Jen and I started telling people we were going to have a baby boy, I occasionally heard another question. "Is the baby healthy?"

I started to think about all of the traits that I could possibly pass to my son. Some would be good, and some would be bad. I naturally thought of physical traits first, which led me to wonder... "Could I pass my Poland Syndrome to him? Would he be healthy?"

What does the word "healthy" really mean, anyway? Does it mean that if the baby is healthy, then they won't have to grow up with unnecessary difficulties? And what difficulties might they be? Physical difficulties? Mental difficulties? Emotional difficulties? What about situational or social difficulties?

The reality is that everyone has difficulties in life. Everyone has flaws. Paul said, "for all have sinned and fall short of the glory of God," (Rom.3). No one is perfect, and everyone is unhealthy in one way or another.

The Bible says that all children are a blessing! If a baby is born "healthy," then that child is a blessing! If a baby is born with Poland Syndrome, then that child is a blessing! If a baby is born with Down Syndrome, then that child is a blessing! If a baby is born with Tay-Sachs disease and will not likely live long, then that child is still a blessing!

We named our son Nolan, and he ended up being born large for gestational age (LGA). This condition affects about 8% of all births, and it basically means he was a big baby compared to most. It hasn't really been a problem for him (other than having a difficult birth), although some LGA babies have problems regulating their blood sugar, some have jaundice, and some have respiratory distress. We will certainly find many flaws in our son as he grows up. The biggest flaw being sin, of course.

God still works through people, no matter what difficulties they have in their lives. No matter what sin. God takes the crap in our lives and uses it for good. In Romans, Paul continues in the next verse by writing, "and all are justified freely by his grace through the redemption that came by Jesus Christ." He redeems us and can use our imperfect bodies for wonderful things.

Many people with Poland Syndrome worry about passing it on to their children, but since it is a congenital birth defect that is not a genetic disorder, then it scientifically cannot happen. The only way to get the deformity would be by random chance. Nolan does not have Poland Syndrome, and the likelihood of us both having it would be something like 1-in-a-trillion.

Even if our son did have Poland Syndrome, Jen and I wouldn't be worried. What we all really need to be concerned about are the sin problems in our lives. God loves us no matter what our size or shape is, but sin is what He hates. Sin is the only flaw we have that God wants us to change.


Related Posts:

I Have Poland Syndrome

My Tattoo

My Daily Battle With Poland Syndrome

My Tattoo

I recently wrote about my Poland Syndrome. In the post, I mentioned a guy who is ashamed of his deformity and decided to tattoo 98% of his body to cover his "ugliness." I see myself in a completely different way: I am thankful that God created me with Poland Syndrome. So, I decided to get a tattoo for two reasons: 1) I wanted a visual reminder of how God is in control of things that we cannot understand, such as deformities and problems in our lives, and 2) I think tattoos are cool.

God is ultimately in control of the universe. He is in control in ways that we cannot comprehend. This is what it means when it is stated that God is sovereign. A good biblical story of God's sovereignty is in the end of Genesis: the story of Joseph. Here's my quick summary:

Joseph's older brothers envied him so much that they planned to kill him. Instead, they sold him into slavery and lied to their father, telling him that a wild animal ate him. Joseph grew up as a slave and ended up using God's gift to him, dream interpreting, to aide Pharaoh in Egypt. Joseph became Pharaoh's assistant, in charge of the food they saved up for the famine. Joseph's brothers end up coming to Egypt to request food, and they found Joseph alive, deciding whether or not to give them what they need to survive.

I love Joseph's response to his brothers: "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives," (Gen 50:20). That is clearly a great story about forgiveness. But it is especially about God working through a really crappy situation in Joseph's life (being sold into slavery) and using it for something good (saving many lives). [For the details of the story, read Genesis 37-50. This is my favorite Bible story; I highly recommend it.]

Knowing that God is sovereign, it gives me hope when bad things happen in my life. Sure, I am deformed a little bit. But God can use that in a good way too. What ended up happening as I grew up with this deformity is that it humbled my pride. I have a big head (both figuratively and literally). Pride is the biggest sin that I struggle with. So, it makes sense that God uses my Poland Syndrome as a clear visual reminder that I see every day in the mirror. It helps me remember that I'm not perfect and I'm not as great as I think I am. Naturally, when thinking about where to put my tattoo as an additional reminder that God is sovereign, I wanted it in the same place. And as a mirror image, I can read it every morning when I look into the mirror. A constant reminder that God is in control in ways that we can't always comprehend.

Oh yeah, and I got it because I think tattoos are cool. Now, I certainly know that this in no way makes me "cool" at all. After all, I did get lightheaded after he was done tattooing me. :-)

I also gotta give props to the guys at Canyon Body Art, which is where I went. They are very professional and friendly, as well as great artists. I went there based on my friend's recommendation and I would definitely go there again.


Related Posts:
I Have Poland Syndrome

Will My Child Have Poland Syndrome?
My Daily Battle With Poland Syndrome

I Have Poland Syndrome

Most of my friends already know of my birth defect. Even some of the guys I shared my college dorm with called me Nemo because of my "lucky fin." I have had lots of laughs around the topic of my dead sexy deformed body, but I realized that I have never written about it on my blog. Well, here you go: I hope you are encouraged and learn something new.

There is very little known about Poland Syndrome. According to the National Human Genome Research Institute, it is a rare birth defect named after Alfred Poland. It is estimated to affect between 1-in-10,000 and 1-in-100,000 births. The cause is unknown, but "most evidence supports the idea that something happens during the 6th week of fetal development," possibly an interruption of the embryonic blood supply, stinting growth in a certain area.

This congenital deformity is characterized by many features, but here I will list the ones that specifically apply to me:

• Absent pectoral muscle
• Brachydactyly (short fingers)
• Humerus, radius, ulna bones abnormal
• Upper limb asymmetry

Based on pictures I have seen of other people online and looking at the few other frequent features, it seems to me that I have a relatively mild case. I am missing my right pectoral muscle, my right arm bones don't rotate properly, my right arm is noticeably smaller, and my right hand is abnormally small with some crooked, short fingers. However, I can still do most normal physical activities that others can do.

I am very physically athletic and use my arm as if it is normal. I play sports, do push-ups, pull-ups, handstands, and even back handsprings. I have found that other muscles compensate for my missing pectoral, allowing me to have enough strength to perform basic activities. However, there is a significant lack of strength in my right arm muscles. I find myself using my left arm a lot more when maxing out on push-ups or pull-ups.

One of the most fascinating things is that I am predominately right-handed. However, because of the crooked fingers and the slower responsiveness of my right hand, I switched over and learned to write with my left hand. I still kick with my right foot and often still carry bags with my right arm because it feels natural to me. But because my left arm is stronger, I usually carry heavy items on that side.

Very few people notice it when my shirt is on. I used to be nervous to take off my shirt in public. For example, when playing a fun game of ultimate frisbee, I would be bothered if someone declared, "Okay let's make two teams--shirts versus skins," and hope that I got on the shirts team. But that was years ago. Now I am comfortable taking off my shirt because adults don't tease the way that kids do. Most people are fascinated with it.

I have come to appreciate my deformity. It's funny saying that because it doesn't really seem like a deformity to me. I am who I am. Everyone is different. Some people have big ears, some people are bald, some people are big, some are small, and some people are missing their pectoral muscle. Not a big deal to me.

What makes me sad is when people are ashamed of their Poland Syndrome. There is one guy I found online that hates his deformity so much that he had tattoos put over 98% of his body to cover it. In one article I read, he said that he feels more valuable and special because of the tattoos. He also said he got the tattoos in order to hate his body less. Such a sad story.

I believe that God made me this way for a reason. I am humbled every day when I look into the mirror and am reminded of what's really important: our life mission. One day our bodies will waste away and return to the dust of the fields. How do we want to be remembered? How will God remember our lives on the earth? These little physical issues in my life are nothing. They are worthless in the grand scheme of things. So, why take my body so seriously? Who cares what other people think of my deformed body? Who cares if I can't look like those ripped underwear models? God cares about my heart. What I want to do with my life is use it to worship and honor the Lord of all Creation ... no matter if it's perfect or if it's deformed.

Absent pectoral muscle is the
most common deformity in PS

Related Posts:
My Tattoo

Will My Child Have Poland Syndrome?
My Daily Battle With Poland Syndrome

Other Links:
Poland Syndrome - Wikipedia
Poland Anomaly - NHGRI
Polands-Syndrome.com
The Poland Syndrome Foundation
The Poland Syndrome Foundation (Facebook Group)
Poland Syndrome Support (USA) (Facebook Group)