You wouldn't know it to look at me, but I have a chronic and potentially fatal seizure disorder, a form of Epilepsy called Idiopathic Generalized Seizures, and I was one of 30% of the Epileptic population for which medication wasn’t working.
Even when they do work as planned, anti-seizure medications are powerful central nervous system depressants and are frequently accompanied by side effects like heavy sedation, weight gain, light sensitivity, and dizziness to name a few.
And because the drug cocktail I was on couldn’t control all of my seizures, just the majority, I couldn’t drive.
In fact, as of 3 years ago I was having to take secondary medications just to treat the side effects of my primary seizure drugs.
And then four years ago my meds stopped being effective even for the seizures it was covering. Since I had tried over 12 anti-seizure medications as well as a variety of alternative treatments, I found myself without many options left. My seizures were coming back with a vengeance and I didn’t have many more meds to try.
That’s when I stumbled onto a very new treatment, a device called an RNS, responsive neurostimulator. These devices are implanted in the brain to help control the seizures when all other methods fail. The RNS was only barely beginning to be used on people with my kind of seizures and in fact I would be the 7th person at MGH to get one.
In all honesty I was not thrilled about the idea of putting something directly in my brain, but the research was showing real potential success and I was desperate. I’d try anything at this point, even brain surgery.
Recovery took a lot longer than I would have liked, it took months, but by April of 2022 the device really started working.
So thanks to the RNS, I haven’t had a seizure in almost 2 years, I don’t have to take medication anymore, and I just got my drivers license back after 15 years of not being well enough to drive.
I’m incredibly grateful, and feel so lucky to have gotten this miracle treatment, but as I’ve gotten better it’s also become more clear that there is a shocking lack of awareness and understanding of an illness that is actually the fourth most common neurological disorder.
I realized that my incredible story could be a beacon of hope to others who are still suffering.
Emily Kalina and Mark Richardson, MD, PhD, standing beside a commissioned installation by Emily in the Brain Lab at Massachusetts General Hospital, Boston MA.
Commissioned installation by Emily in the Brain Lab at Massachusetts General Hospital, Boston MA
When Dr. Mark Richardson, my Neurosurgeon, contacted me about collaborating to raise Epilepsy and RNS awareness, I was all in.
At first we envisioned writing a book that would serve as a comprehensive guide to understanding Epilepsy, featuring detailed explanations of all of the different types of Epilepsy that we know about, treatments, and alternative therapies used to help. I wanted the book to combine personal stories from those affected, practical lifestyle strategies inspired by my own decades of experience applying the principles I have lived by in my Twelve Step Recovery Program and study of Buddhist teachings to living with Epilepsy, and essential advocacy tips for navigating medical discussions.
As I prepared for and launched a Kickstarter to fund the creation of the book, I realized writing a book was too much to take on myself and I would burn myself out, I would inevitably get sick and then I wouldn’t be able to help anyone.
When I took some time to pause and reevaluate my goal, I came to the realization that the most important thing to me was to build awareness and start to provide real, practical help to others suffering with Epilepsy. I wanted to combine informative videos, a blog, and other types of media together in one place, and I realized that a website might be a better format to communicate the message I wanted to get across.
What I am seeking to build here is a place to share information and experience in a way that can then hopefully be helpful to others, and add informative videos on Epilepsy and what it’s like to be living and coping with all aspects of this illness.
So now, with growing support from the medical community including the enthusiastic support of Dr. Mark Richardson, the Director of Functional Neurosurgery at MGH and my own Neurosurgeon, as well as Dr. Sydney Cash, Epileptologist and MD, PHD at MGH, I am building this platform to be a unique website that is designed to be a comprehensive resource by someone living with epilepsy, for people living with epilepsy.
