Birth Defect

It began with a birth defect, my story- which until this past year I have been too afraid to tell.

As much as I desperately tried to hide it from others (and myself) throughout my youth, this is what has shaped who I have become.

It is chronic, yet not lethal. It is a defect, yet not a disability. For these reasons Poland Syndrome has not gained the exposure or concern required for scientific research and development. In fact, the “mildness” of the defect is its sharpest edge for those who are born with it. Often creating an atmosphere of isolation.

I am certainly not equivalent to those born with all their muscles but at least I’m not missing a limb. Or have a terminal illness. This comparison kept me quiet. And worse, it made me judge myself for my pain. I didn’t think I deserved it because others had it much worse than I did.

I remember being angry. So angry when I was young. And wishing for something bad to happened so I could at least have an excuse for that anger.

I didn’t realize that I was the cause of my anger. That the judgement I had for how I felt about my defect created an internal rebellion. I was mad at myself for not letting myself feel sad/ frustrated/ scared about my defect. I had no idea (or vocabulary for it at the time) but I was gaslighting myself.

Instead of allowing myself to feel, I determined that I wasn’t worthy of those feelings. This really stunted my healing process. Only later in life when I began to find mindfulness practices did I find the courage to revisit and start accepting myself and my circumstances.

In fact, the “mildness” of the defect is its sharpest edge for those who are born with it. For me personally, it took almost two years of doctors visits for my primary to determine what it was. Once given a name my problem was now available for a solution. However, again I met with resistance from the limited exposure of medical professionals. In a metro area of over 2 million people there was only one pediatric surgeon who had ever done this operation. And he had only done it once before.

His main area of expertise was fixing cleft palates. I needed to have part of my latissimus muscle removed and transferred to my chest to become a pectoral muscle... I have no formal training in medicine but, in my opinion that seems pretty different. While the capabilities of modern medicine have afforded me a functioning transformed pectoral muscle it is not without consequence. I still have my full latissimus muscle on my right so there is a slight curve of my spine due to the imbalance. A small compromise I suppose.