Finding Hope Through Music

Shaina is sharing her eJourney about she found hope through music on her epilepsy journey

By Shaina Faith Caplan , New Jersey

Person with Epilepsy

Thursday, May 11, 2023

I was born with a 14:22 chromosomal translocation, of which little is known, but it may contribute to my epilepsy. When I was a toddler, I had several seizures. Everyone thought they were febrile seizures from a high fever. Then, for nearly a decade, I did not have any seizures.  

When I was 12, I had focal onset aware and tonic-clonic seizures. They happened several times a week, usually occurring in the late afternoon. These seizures lasted less than a year, and then I had no seizures until I was 16, when I had auras and seizures nearly every day for almost four years. Through MRI and EEG testing, my neurologist determined that the seizures appeared to be emanating from my left temporal lobe. 
I had three brain surgeries. The surgeon used a laser for the first two procedures to target scar tissue on my left temporal lobe, but those surgeries did not end my seizures. In the third procedure, the surgeon removed my entire left temporal lobe. Although I had a few intermittent seizures for about a year afterward, the seizures slowly dissipated. I am 22 years old now, and the seizures have nearly disappeared. 
Looking back on my situation, I believe many learning disabilities I experienced in school and life were likely due to the "electronic short circuit" emanating from my left temporal lobe, which is the center of language learning, verbal information, and visual memory. Fortunately, my neurologist used MRI testing before my operations to verify and ensure that memories I had in my left temporal lobe were also stored or transferred to my right temporal lobe. 
After the surgery to remove my left temporal lobe, my dad suggested I try an electronic piano keyboard, which I enjoyed. I suddenly found that I could play and sing all kinds of popular music without piano lessons and even write my own songs. My mom had a beautiful singing voice, and now I also seem to sing well. I have been very fortunate, and although I have been virtually seizure-free for the past several years, I never know if the seizures will return one day.
Having a supportive family and community of people who care is invaluable to me. I have learned that life is filled with change, but that change has positively impacted me. There is hope for us through medical science, personal belief, and willpower. There is hope through music, faith, and love. 

Reviewed By: Sara Wyen

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