Never Stop Advocating for Yourself

In December 2010, at 7 years old, I suffered a ruptured brain aneurysm. With a 20% chance of survival, I defied the odds and had my aneurysm clipped via craniotomy. However, another challenge was still brewing - an undetected brain arteriovenous malformation (AVM). After years of intense recovery and rehabilitation, I had a second brain bleed at 16 years old. Fortunately, my AVM was removed; however, not only was I back to square one of recovery, but new problems emerged. I began having these weird bodily sensations regularly: rapid heartbeat, deja vu, metal taste, confusion, blurry vision, and more. These were especially worse near my menstrual cycle or when I was anxious.

I consulted with my neurologist and had an EEG. No seizures were found, but abnormal brain activity was observed. They concluded that this was my new brain pattern as a result of my two strokes and anxiety, so they had me put on anti-seizure medications temporarily. I've had intense days with these symptoms, where I would pass out and vomit profusely, but repeat EEGs by my neurologist gave me the same result.

Despite these symptoms, I graduated from high school with honors and began college. I struggled with my symptoms but persisted; after all, the doctors told me it was part of my anxiety. It wasn't until I started graduate school that I faced the true severity of my situation. My anxiety peaked. I began having symptoms every day, sometimes even multiple times a day. It was so intense that I would lose the ability to stand up straight when it was happening, and despite begging my program's director for guidance, I was told I wasn't cut out for the field to become a physician's assistant.

I called my mom and told her I urgently needed help. I left the program I had spent the past three years dreaming about and working towards. We found new neurologists. After conducting an angiogram to ensure my AVM wasn't making a return, we conducted another EEG. After a single observation with my new neurologist, she explained that the damage throughout my entire right temporal lobe from my second stroke was causing focal seizures. These focal seizures become worse during times of stress and hormonal changes. The symptoms I was facing were not anxiety attacks like my doctors had repeatedly told me. I had been suffering from seizures for the last three and a half years. Nobody gave it any thought until the seizures made me so ill I had to stop school. She swiftly put me on seizure medications permanently and taught me about my form of epilepsy, temporal lobe epilepsy. After years of feeling crazy, unheard, and desperate, I finally found a diagnosis.

When I realized the reason I had to leave school was due to untreated epilepsy, I fell into a deep depression. I sobbed daily, crushed that my brain had yet again caused more issues for me despite doing everything in my power to take care of myself. I envied those who were still in my program thriving and functioning normally. I felt so isolated while navigating my new diagnosis, on top of already recovering from a second stroke. I became easily frustrated at the side effects of my seizure medications, which included memory problems, drowsiness, liver dysfunctions, fatigue, and more.

I had hit rock bottom and built myself back up through education. I love medicine, so I spent months learning about temporal lobe epilepsy and how it differs from other types of focal epilepsy and generalized epilepsy. I learned more about my medication and what things I can do to manage the symptoms. Knowledge truly is power. Through my relentless time spent researching, I found others who shared similar experiences with both epilepsy and an AVM bleed. I began to work part-time with a child with autism, understanding more about neurodivergence. Finally, I never gave up on my education. I am crushed I cannot become a physician's assistant, but I refuse to give up on pursuing healthcare. After taking the semester off to pursue my diagnosis, I went back to my undergrad and took more prerequisites. I will be starting nursing school in the fall. I refuse to let my deficits stop me.

I spent years having professionals not believe me when I thought something was wrong, even the director of my educational program. Now, I want to teach others to advocate for themselves and be an advocate for them. I want to be the person that anyone can lean on when their epilepsy seems to become overbearing and let them know it will be okay. I wish I advocated for myself more as a teen, where I maybe could have found out about my epilepsy sooner. I want others to learn from my experiences and fight for themselves.

Epilepsy and my brain bleeds have shifted the trajectory of my life. Now, I am a member of disability advocacy at my college, and I am not stopping there. I want to help bring awareness not only about epilepsy and brain bleeds but the importance of brain health too, both physically and emotionally. The Epilepsy Foundation has helped me find a sense of community after feeling so alone with my chronic illness.

Never stop advocating for yourself. When it feels as though the entire world turns its back on you, never stop voicing your concerns. Eventually, you will find that one healthcare provider that will listen, take you seriously, and figure out what is wrong. Epilepsy is so much more than seizures. Seizures come in all different forms but still can impact someone's life. Be your #1 advocate because it could save your life.