An Unexpected Journey

Bee experienced her first seizure at the age of nineteen on her college campus. As a young adult who had never experienced a health scare like this, she attributed it to the stress of exams, lack of sleep, and increased pressure during finals week. Unfortunately, those around her at the time were unsure how to assist her, leading to the incident being overlooked. Six months later, during Easter dinner with her family, Bee had another seizure. Her mother, a nurse, sensed that something was amiss, but even after consulting doctors, Bee’s seizures were not taken seriously.

After experiencing her fifth seizure, Bee received an official diagnosis of epilepsy but continued to face challenges in receiving adequate care and finding a medication that worked for her. A general lack of resources surrounding epilepsy prevented her from advocating for her needs. 

It wasn’t until she sought a second opinion from a different neurologist, that her situation took a positive turn. Her quality of life significantly improved as the neurologist attentively listened, suggested she journal her seizures, offered clarity, and addressed her concerns.

The Importance of Advocacy

During the early phases of Bee’s journey with epilepsy, she found herself ill-equipped to advocate for her needs due to a lack of resources. However, upon seeking support from a different neurologist, her situation took a positive turn. Her quality of life significantly improved as the neurologist attentively listened, offered clarity, and addressed her concerns.

During Bee’s lifetime, she encountered negativity and discrimination due to her diagnosis. The stigma surrounding epilepsy has been a significant challenge that Bee has personally experienced on multiple occasions. As a result, Bee chose not to reveal her diagnosis to several employers to maintain focus on her abilities as an employee, job applicant, and individual.

A New Chapter

When initially contacted by a recruiter from the Epilepsy Foundation of America, she felt unsure. Having been seizure-free for 15 years, she was in the process of defining herself beyond her seizures. However, after engaging with the organization, she realized her potential to advocate for her community. The warmth, acceptance, and encouragement she received during the interview made her feel acknowledged in a way she had rarely experienced over her 30 years. This inspired her to openly share her story, aiming to eliminate any shame associated with the diagnosis.

Her goal for the future of the foundation is to create a safe and supportive environment for everyone living with epilepsy so that no one faces epilepsy alone. In a society that often focuses on limitations, she is determined to shift the narrative to one of empowerment and possibility.