Spectator Sports

You’re beautiful.

Those words might not mean much to you. Maybe you hear them often, maybe you think them often. Maybe you find these words trite or cheesy. But these words have so much power in hearts of young women with skeletal dysplasia or craniofacial syndromes.

I have a lot to process from 4 weeks of skeletal dysplasia.  But this I think was the most important thing.  We have replaced circus side shows with reality TV. But almost morbid fascination and fixation on being little or being funny looking has not changed, its only be rewoven into the politically correct fabric of our culture. We as doctors care compassionately and encourage patients to live the best lives they can.  But inside do we still secretly subscribe to the side show theory? Do we also secretly enjoy being a part of a tight community but would be disappointed if our children turned out to have a role in the side show?   I know what our culture thinks. But what do I think as a physician?   What do I think as a giant dwarf with midface hypoplasia, kyphosis and knobby joints?? D o I think little and funny looking is beautiful????

The answer may seem obvious. To answer anything but YES is to deny my own self.  But in the back of mind I begin to dissect away the layers of how I approach my double life.  The glistening, scarred but sacred layers of my childhood filled with the joy and the pain of being different but also the irresistible knowledge that comes from seeing the world through the eyes of difference. But the pristine, orderly, tightly woven layers of my medical training overlay those layers now. Those layers have also brought joy, pain and knowledge.   The layers tell two different stories. The narratives conflict. One tells me that beauty is seen through love,  shared experience and incredible diversity of humanity. One tells me that beauty is seen through achievement of standards, of milestones, of parameters of GOOD (normal)  and NOT GOOD (abnormal).

Which narrative is more compelling? Which narrative is definitive of who I am and what I do?  What scares me is that the medical layers are deeper than I realize. The brainwashing that I resisted, the kool aide I refused seeped in somehow. I find myself torn.

As I met children day after day who looked different from my usual patients and learned the parameters which we monitor their condition…disease….difference…??! I almost lost myself in some ways. But I also found it so many surprising ways.  My first procedure standing next to the resident and him coming to realization that I was one of these children. I had all the parameters in the NOT GOOD category.  But I was something else than just a side show. I was a colleague.  I had crossed the line and entered the spectator bleachers.  In the moments that I held my hand out to comfort my crying patients as they woke up from surgery or told them to suck it up and do their PT (because I did it too) I found a sense of closure….a sense of beginning and a sense of incredible beauty.

Beauty is not a simple or trite thing. Its raw, complex,  intricate and fragile. Fragile because yes physical youth fades. But more so because we fail to appreciate it and help it grow. We trample it, we try to quantify it, put it on a scale, on a chart. But beauty is too wild to survive such cages.  The problem with doctors is we try to apply our logical, protocol driven training to beauty, to art and most dangerously to social norms.

SO I dried the leaky kool aide and found myself missing the skeletal dysplasia kids on our fracture clinic days. I found myself lonely for my tribe and also longing for the moments when I could whisper.

You’re beautiful. Truly beautiful to ears that so rarely hear such words.  That are so often trampled by our society conception of NORMAL.