The fundraiser is still going well! Please donate to help me reach my goal for the team! I appreciate anything you can give.
A few days I went to one of the SHARE groups sponsored and led by the Epilepsy Foundation. I encourage all patients, family and friends affected by this illness to attend these groups - they are led by compassionate individuals and people can communicate as little or as much as they'd like. It was wonderful to not feel so alone anymore. This is one of those illnesses that, unfortunately, has historically been pushed into the shadows. Don't allow this to become a factor for you. There is nothing to be ashamed of.
I learned that there are other groups throughout New England for people affected by seizure disorders, both in-person and virtual. On top of that, there are numerous online apps as well as opportunities to further coping skills and to frame a meaningful life despite the challenges that a life with seizures can present.
Remember, we are a community and we are here for you! To add it all up, I need to let you guys know about the blog roll I'm building on this page for people affected by epilepsy. Check the links out! There are so many inspiring authors out there.
Help me support the fight!
At 9 months gestation I was born weighing 4.11 pounds, measuring 19 inches. My mother had suffered no complications during her pregnancy. I spent my first night of life in the hospital because no one knew what to make of my tiny size.
I was a happy baby, but at the 6-months mark my parents noticed that I only turned onto one size. A doctor diagnosed me with a prenatal stroke, thus beginning the endless series of neurological exams, brain MRI's, CT scans and visits to physical and occupational therapists that framed many of my childhood memories. My first seizure hit when I was 4 years old and stuck in a traffic jam, my baby sister sitting next to me. I was put on and eventually weaned off on Dilantin, but I never told my parents about my weird sensations in bed at night or about the sense of rising anxiety in my stomach that preceded my 'out-of-body' experiences during the daytime. I continued with physical therapy, underwent orthopedic surgeries to improve my drop foot and strengthen my wrist, and I started playing the piano to increase my hand function.
When I was 15, I suffered a generalized seizure in the school cafeteria and woke up on the floor with the Assistant Principal sitting next to me. Dilantin didn't do anything for me this time so we went for the Tegretol and I received my epilepsy diagnosis. As a wily teenager, though, I sometimes fell into full convulsions in front of my classmates, in my bedroom, or at parties. The incidents became less frequent as I grew older, but never quite stopped. I also spent most of my adult life believing that the other sensations in my body were unavoidable consequences of my right hemiparesis and perinatal stroke. I decided to take my health back into my own hands and began researching my condition in more depth.
Skip to my mid-30's, and I was accepted into a research study for people with right homonymous hemianopsia at the Schepens Eye Research Institute. It was there that I finally came to understand why I never felt totally comfortable behind the wheel on a busy street, and why I would never be allowed to drive again. I also sought out a new neurologist specialized in epilepsy, and within an hour of meeting her, we were on the way to getting my refractory epilepsy more manageable. I have never been 100% seizure-free as many of my previous under/undiagnosed symptoms have affected my life in major ways, but my current clinical team is amazing and I feel incredibly lucky to have found them.
It is for this reason that I want to bring more awareness to the struggles that people face daily living with epilepsy and seizure disorders. As a team member for the 2020 Boston Walk For Epilepsy, I want to take people's suffering out of the shadows and to further education on epilepsy and the ways in which it can affect patients, caregivers and family members. My team is walking to build community and to combat any shame or stigma sufferers may feel surrounding their illness. Please consider giving to the 2020 Boston Walk For Epilepsy, or even joining our team yourself. Thank you -
