Metamorphosis- Growing up with Turner Syndrome

17. Epilogue- A butterfly spreading her wings

"My body is a cage that keeps me from dancing with the one I love, but my mind holds the key"- Peter Gabriel

A huge part of what makes these words feel so powerful to me is the House MD episode "Out of the chute" (season 7, episode 16). Doctor Gregory House, being dumped by the only woman he cares about, is at one at the lowest points in his life, and seems about ready to commit suicide... That House character is one I have thought about quite a bit. As a result of an infarction, House is left in severe pain and with limited use of one leg. His response to that is- getting bitter, cynical, misantrophic, but also valueing his intellect above anything else and looking down on everything physical. Saying his body, which is slightely flawed, is nothing, but a "cage" to him, hits the nail on the head. 

In some respects, I am a lot like Gregory House. For instance, having faced quite a few disadvantages and failures were physical activities were concerned, I do pride myself mainly on my intellect, rather than my body.  It is so easy for us with TS to see our bodies as something less than they should be- a "cage". Personally, I did not experience body- image issues as much, as some others have. One reason for that might be a realistic, yet cruel view of what a "real" problem looks like, that most people in our family have in common. We grew up with my parents discussing young people dying of cancer or car crash victims over the dinnertable- to some degree, that seems to be an expected part of having physicians as parents. I can remember one time, when my father- the radiologist- mentioned I was supposed to be grateful for being healthy. On most days I would have whole heartedly agreed with him, he has managed to instill that much of his ideas in me. On that day though, I got cynical and gave back something like :" Well, depends on your definition of "healthy"." I will never again forget what he replied (although he has surely picked up these words somewhere else): "Health is the silence of your organs" If none of your organs demands immediate attention, you are as healthy as you can be, and you are, indeed, supposed to be grateful. I cannot expect anybody else to manage this gratefulness inspite of the variety of the problems we can fact. Only for me personally, I know this believe is the reason for me not do demand anything from my body I do not already have- being painfree, being capable of exercising. That is as much as you can ask for, it is, in fact, more than many people ever get.

I do not face the same problems as Gregory House. In addition to being of sound mind, I am fortunate enough to have a body that can run, swim, ride on horseback- and, if I set my mind to it, just as well, as any other could. I have been incredibely lucky more than just once, I have not just survived. So I am honestly able to say: I am completely okay with the way my body is. 

And with that begins the metamorphosis from the caterpillar to the butterfly.

It was long after I had been diagnosed, that I first heard the term "butterflies" for girls with TS- which reflects my initial phase of denial quite well. I had however at this point already heard of another condition, that is often given a similar name. Epidermolysis bullosa, or EP, results in "butterfly skin", and is often called "butterfly disease". That terribly painful and life- limiting genetic condition results in the outermost layer of skin, the epidermis, being very easily injured and even ripped off by the lightest touch. Children are covered in bandages, fingers become stiff because of scarring, but EP also causes a variety of problems in other unexpected places. The inner lining of the esophagus is just as fragile as the skin, so eating spicy food, or maybe even eating any kind of food that is not of watery consistence, can injure it. What has all of this got to do with a "butterfly"? Well, these children have to be put into a crib with cotton wool all around them in order to protect their skin, which, to someone, apparently looked like the cocon of a butterfly. Maybe the beautiful butterfly was also chosen in an effort to find some beauty in sadness- because most of these children do not survive for long. The most cruel thing about EP though is surely the constant, debilitating pain, if one does survive.