Wednesday, December 3, 2008

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

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My Tattoo