My name is Emily and I am 15 years old. It was in the summer of my 13th birthday that I got sick with my first debilitating disease. As any logical human being would concur, most doctors either thought that I was crazy or possibly dying when I came to them and showed them that almost every bone and ligament in my body was suddenly partially dislocating just by moving. After a few months, I was finally diagnosed with a severe case of Ehlers-Danlos Syndrome. I found out that it was serious when I googled my diagnoses and pictures of countless scars, bruises, central lines, g-tubes, neck-braces, oxygen cannulas, and wheelchair bound patients filled my computer screen. Complications, I soon found out, of the countless other medical problems caused by a disease that stems from the connective tissue, but in severe cases like my own, can soon affect almost every organ system in the body in some way, shape, or form.
Not long after my initial diagnosis my nervous system, brain-stem, stomach, mast-cells, and heart began causing me troubles. Medical diagnoses soon pilled up and life has been hard ever since. It’s strange to think back to a day when I didn’t think about telling my heart to keep beating, my lungs to keep breathing, or my legs to keep walking. A day when I knew what my future would hold. Even with day to day life proving very difficult, nothing would prepare me for the crushing day just a few months ago that I would sit in the neuro clinic and have my doctor tell me that although he has been wrong in the past (and that I should still have hope that it can get better) there is nothing but palliative treatment left to pursue and I will never be cured.It was around one year ago that a little book called “The Fault in Our Stars” came into my life. I had been faced with death in children quite a bit in my time here, a subject not often broached by adults. It has been beyond hard watching children die, hugging grieving mothers, and then having the rest of the world turn around and tell me that “they died to show us the value in life”. Let’s face it, childhood illness is senseless and the suffering is all too meaningless. TFIOS has given me an outlet and helped me express feelings that I could not previously put into words. It has “a way of knowing my feelings before I feel them” and it is truly accurate medically.Before TFIOS I didn’t understand why I couldn’t be like all of the other sick children in movies or books that were portrayed as so fearless, so brave, and never angry or sad at their illness. After I read TFIOS I understood that it is okay to feel whatever I feel. It is normal and it is human. It has also helped with seeing friends in the hospital or ICU because of an illness that I too have and wondering if I will be next which is also something that is a rarely broachable subject in everyday life. I too am an only child and I was pulled from “normal schoolic exposure” around two years ago when my health declined which helps me relate to Hazel’s thoughts and feelings on a more personal level. I have no way to express all that John Green has done for me by writing TFIOS. It has changed my life and given me a previously unattainable outlet to deal with being seriously ill. I now know that my feelings are valid and okay. It has made more of an impact in my life than I can put into words.DFTBA,Emily :)Website - Emilysfight.comPersonal - @Emily04041313Campaign - @Emilys_fightTumblrPersonal - Lights-to-guide-me.tumblr.com
Oh my God.