I started having focal onset aware seizures in childhood. The feeling was similar to when your stomach flips on a roller coaster but rushed up to my neck. Then I feel a bit confused for a minute or so. I thought feelings like this happened to everyone. When I was thirteen, I started losing awareness during these times. I was diagnosed with psychogenic nonepileptic seizures (pseudoseizures). I was excluded from many social events and could not participate in band, my favorite subject, which felt like punishment.
Later, on a youth orchestra tour, I had my first tonic-clonic seizure. I had no idea what was happening. Fortunately, a doctor observed them and referred me to a hospital in Boston, where I got a more thorough workup and was diagnosed with temporal lobe epilepsy. I felt exonerated. I had previously been told I could stop the seizures whenever I wanted to, but that was not true. I started medication. It turned out that I am a person with drug-resistant epilepsy.
I am still on medication, have vagus nerve stimulation (VNS) therapy, and am currently on a 2:1 ketogenic diet therapy. My seizures are much better now than in the past, and I no longer have daily auras, but their impact on my life has been profound. I decided to share my story because a lot of stories about epilepsy are about becoming seizure-free.
My biggest challenge was that my life, as I had imagined, would not turn out as planned. I had difficulty accepting that I have drug-resistant epilepsy because I wanted to be independent and become a professional classical musician. While I can do this, the stress of auditioning, constant performance, and a musician's busy schedule did not work for me because it triggered more seizures.
Overcoming this challenge meant accepting that there is way more to life than achieving and reaching dreams. The reality is that sometimes dreams cannot be reached no matter how hard you work. Even so, I can still have a happy life. Overcoming this challenge also meant learning to take joy in simple things like my relationships and being grateful for how my body works well.
I want people to know and be aware that you can still have a happy life even if you never become seizure-free. If you fail medication or surgery or are not a candidate, ask about ketogenic diet therapy. It is not for everyone and not easy, but it is doable. My seizures have been reduced by about 50% during my time on ketogenic therapy, which gives me more confidence to try new things.