My journey from patient to employee

When I was 13 years old, I remember eating my breakfast and next thing I knew, my mom was repeatedly asking me why I wasn’t responding to her. I was having my first seizure.
The start of my journey
This was the beginning of my journey with epilepsy. For two and a half years, I had seizures everywhere — from the classroom to the basketball court — as many as 8 to 12 a month. I learned that before a seizure, I’d feel like I was outside of my body, as if I was looking down at everything around me. Then I would wake up and not remember anything. Some medication made me feel like a zombie, or tired, moody, and I was barely eating meals. I felt as though I was not living my life.

But I wouldn’t give up and neither would my team at Boston Children’s. The moment my neurologist, Dr. Ann Poduri, asked if I would be willing to have resection surgery, which would remove the area in my brain where the seizures occurred, my answer was “yes.” The thought of being seizure-free was extraordinary. Dr. Joseph Madsen, a pediatric neurosurgeon who specializes in epilepsy surgery, made sure to explain the surgery to me in detail, in a way I could understand. I had the surgery one year later. Thanks to Dr. Madsen and the rest of the Boston Children’s team, I’m now more than seven years seizure-free.

A new beginning
Dr. Madsen, Dr. Poduri, and the rest of the team at Boston Children’s have made it possible for me to achieve so much in life. I graduated recently from Stonehill College and am living on my own. I’m now working at Boston Children’s as a patient experience representative. And even better, I was given the chance to work in the Neurosurgery Department.

It feels amazing to be a part of a team that helps patients just like me. I understand the families’ feelings of uncertainty, but I also know how the possibility of being seizure free feels. Getting to work in the department that changed my life for the better is another dream I have achieved. Boston Children’s is an amazing place, a place that has truly changed my life.
Learn more about the Epilepsy Center.
Related Posts :
-
Inspired by her daughter, one mom helps families navigate complex epilepsy
Colleen Gagnon felt something wasn’t right soon after her daughter Niamh was born but tried to convince herself she ...
-
Conquering a rare metabolic condition: A family, a pediatrician, and two labs join forces
As a newborn, Sam Hoffman never cried or made a sound. His mother, Carolyn, often had to wake him up ...
-
A path forward for genetic testing in unexplained epilepsy
The number of genes implicated in epilepsy has grown rapidly in the past decade. This raises questions about what tests ...
-
‘Mom, my brain feels better.’ One mother’s story of her daughter’s fight with epilepsy
Liliane has a lot to be grateful for this holiday season. Until just this year, her 16-year-old daughter Emily, who ...