By Alanna Flax-Clark
When I was 13, I woke up one morning and could not move or walk on my right foot. I had always been healthy, so this came as a shock. I had a number of consults and progression of symptoms throughout my entire body to the point of being bedridden, in excruciating pain, unable to be touched, and my limbs developed contractures while being swollen and blue/purple in color. I was finally diagnosed with a chronic neurological disease associated with dysregulation of the central nervous system and autonomic nervous system that results in multiple functional loss in the bones, muscles, nerves, skin, and blood vessels. I spent the next few years in and out of different hospitals, undergoing daily therapies, invasive treatments, and surgeries. With the support of my family, friends, and teachers, I was able to keep up with my schoolwork and returned to high school my senior year. I managed to graduate on time and went away to college in Memphis and then to graduate school in Boston.
I worked hard in college and double majored in Biology and Psychology, as I was influenced so much by my health and how the two were intertwined. Because of my personal experience staying in the hospital for extended periods and my interactions with all the kids and families I met, I spent much time volunteering my time doing art projects with the kids at St. Jude Children's Research Hospital in Memphis. I also worked alongside the division chief of Radiation Oncology in the clinic and doing research on the effects of radiation on cognition, attention, and memory in children with brain tumors. While I was in Memphis things were not perfect with my health, but I was enjoying my life and did not let anything stop me.