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.