by Dezarae Marcotte, ICON Intern

February 12, 2013 is the day that my test results came back. This is the day I was told that I have a rare condition known as Devicís. My doctor says on the phone that I should come and talk about what this means. I later learned that I was, in fact, legally blind and that this condition could also paralyze me as well. It is incurable and could result in an attack whenever, wherever. At this point in my life, I was an 18 year old freshman in college and a waitress who had just moved out on my own. I had a lease to keep up with, a test in Psych class, and I worked a double shift that weekend. I also had a boyfriend who I was afraid wouldnít love me anymore. The doc tells me to go home, pack a bag, and that Iím going to Kansas City. I was admitted to KU Med immediately. It was like a movie; it didnít seem real. I had never had any health problems before, and, in a matter of hours, I was hooked up to machines, given a special diet, and started chemotherapy.

Now, about a year and a half later, I am 20 with a life that did a complete 360! My life has adjusted to the cards I was dealt. After my diagnosis, I was down and out for a few months. I didnít know what to do with my life. How could I do anything if I couldnít read or write anymore? I couldnít hang with my friends, go out on the weekends like my peers, I basically couldnít do anything alone and by myself. I had an uneasy feeling in my stomach. Something was telling me that I was less of a woman. I felt like my independence was taken from me.

In August 2013, I got involved with KYEA through my grandpa. Turns out this place wanted me! I had a disability, this ďthing,Ē and these people didnít care. They took me with open arms and helped me get through a pretty tough year. I was given an internship to help improve my employment skills. This organization taught me where to go and who to talk to, so that I could get my life back on track. I learned that I COULD read and write, and that I wasnít some freak of nature. I was given the opportunity to express my feelings, the time to figure out what I was going to do with myself, and the support to do so. I would have never guessed that it would be me who would go through this life-changing experience, and if you asked me to do it again, I would probably tell you to shove it. Iíve had to re-create myself and it hasnít been easy. When I look back on all the changes, I donít regret a thing because it has helped lead me in the right direction.

ďThere is nothing wrong with change, as long as it is in the right direction.Ē -Winston Churchill