Chemo, Cracks and Connective Tissue

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I walk into the Vanderbilt Children's Hospital and a woman directs me to the Genetics department. Every other patient is under the age of 10 and here I am, on the verge of 24 with a possible Connective Tissue Disorder called Ehlers-Danlos Syndrome. The doctor measures me and says I'm 5'10". When I tell him I'm 5'11" he says, "We don't usually have to measure someone that high. It might be a little off." 

"Yes, I'm basically the only person over 5 here." 

He laughs and asks me questions about my family history. After bending body parts, wiggling my nose and doing stretches he tells me, "You're the most flexible of all my patients. You definitely have the syndrome. We need to run some bloodwork to make sure you don't have the vascular form. You'll also have to get some tests done on your heart to make sure you aren't at risk for aortic dissection and aneurysms before the age of 40." 

There are probaby other sentences in between and a better bedside manner, but it all runs together for me. In the midst of other turmoil in my life it seems surreal and, in a strange way, a relief. I finally know what is wrong with me. There is no cure for the hypermobility, my heart might be at risk and I may never be able to have children, but at least I know. The doctor asks if I'm okay and for some reason I'm surprised by the question. "Of course, I'm happy to know and understand it. If there are major problems involved there's nothing I can do about it anyways." 

Before I leave they ask me several more times if I'm alright. They tell me the bloodwork will be back in 4-6 weeks. I tell them I'm fine but I'm not really sure. I feel broken in so many ways. I remember Leonard Cohen's quote, "There is a crack in everything. That's how the light gets in." My life has many cracks right now.

While in the doctors office I see a four year old girl. She's smiling next to her mother and she starts giggling when her doctor walks out. She holds up a sign that says, "3-13-14 My Last Day of Chemo!" 

This little girl squeals with excitement and I can't help but begin to cry. She walks past me to her final round of treatment and shows me the widest half moon of baby pearls. My heart melts down my ribcage and I smile back, tiny tears falling down my cheeks. This precious child, not even old enought for kindergarten, is so immensely overjoyed by life that she finds beauty even in the midst of a thing so ugly as cancer. These are the moments that make life worth living for. And in that instant my turmoil seems of no consequence, my shock subsides along with my worries--the little girl smiles at me and I know everything will be alright. 



Created: Mar 30, 2014


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