Epilepsy Made Me Stronger

I lived most of my life with partial seizures. I had them possibly as early as three days old. Seizures were all I really knew from childhood, through adolescence, and into early adulthood. Living with epilepsy comes with both trials and tribulations, as well as a sense of responsibility knowing that one decision could lead to one or more seizures. After trying multiple medications, an unsuccessful neurosurgery at age 12, and an unsuccessful VNS trial, I have been seizure-free for going on 12 years now after an ultimately successful repeat neurosurgery. I know living with epilepsy has changed me, and it continues to shape who I am today.

I think everybody's experience with epilepsy is going to be different. Luckily, I had a very supportive family and peer network through high school and college, as well as when I entered the workforce. I felt like I was supported and that the network of people, including physicians, around me helped me overcome whatever challenges would come up, whether it would be the many medications, having clusters of seizures, or having a bad seizure at an inopportune time. I do think that there were always people around me who would support me. It was such a grind for so long, and it almost felt like the trials and tribulations that came with epilepsy were just part of my life. 

For better or worse, I think looking back on who I am now, I would not be the person that I am today if I had not lived most of my life with seizures. I think it's made me a much stronger and more emotionally capable adult. I would also tell people with epilepsy or parents of children who are surgical candidates that I understand what they are going through. It is an incredibly scary decision, and there are absolutely risks involved, but for me, I wish that I had my repeat surgery much earlier in life. For me, the risks are worth it.

Now felt like the time to tell my story, and I have always worked to raise awareness. I was on the Greater Boston Epilepsy Council and ran a fundraiser in high school for National Epilepsy Awareness Month in November. Standing up for yourself is important. The Epilepsy Foundation helped me know that I was not alone, in part, and there are a lot of resources there, but do your own research when it comes to making decisions about your future and care. That’s what I did for my second surgery, and looking back, I am glad I did.