Establish a Support Team
Any time we had an appointment with a neurologist, epileptologist, brain doctor of any sorts, I let my parents do the talking and ask the questions. I only spoke when I had to. I didn’t want to say “the word” more than I had to. I didn’t understand the majority of what anyone was saying. I had questions. Lots of them. There were three problems though. The first and the big one was that I didn’t want anything to do with it. Second, I was afraid of what the answer would be. And third, I had no idea what was happening to me.
I was confused, sad, scared, angry, and in denial. And so isolating myself from all of it was my best bet to get away from having to face it, come to terms with it, get near it. We must have seen at least 4 neurologists and epileptologists, one of whom answered “1/3 get better, 1/3 get worse, and 1/3 stay the same,” to every single question, before finding Dr. Blanca Vazquez at the NYU Comprehensive Epilepsy Center. I sat in the waiting room surrounded by kids in wheel chairs whose disability seemed so much worse, causing them a much more limited quality of life than mine, adults whose appearance would most likely cause a person to avoid them, and I wondered what I was doing there. Mom always says you can’t compare disabilities. It’s so hard to do that when your disability is invisible… until it’s not. The first time we saw Blanca though, I felt comfortable being a patient. I wasn’t as scared to speak. I felt comfortable answering questions. I asked my first question about my disability. That was huge.
The doctors can only go off of what you give them and parent’s can only give so much information. It made a world’s difference. I got a diagnosis. Though a life long diagnosis at least we had one. Now we had the opportunity to do a medication change using meds that are directed toward my type of epilepsy and types of seizures and we could pin point our research.
After moving, we were now in a city with access to local specialists. We found Dr. Michael Privitera from the University of Cincinnati Medical Center. It is thanks to my mom’s medical file Dr. Privitera was able to look at my previous EEGs, MRI and CT, all my seizure calendars, etc. He had 10 years worth of information at his fingertips. Seizure calendars have proved to be very helpful even if you can’t find a pattern in your seizures, if you want a second opinion, end up switching doctors, or if you end up needing disability assistance, seizure calendars can be a great source of information.
Dr. Blanca Vazquez
Dr. Michael Privitera