I started having seizures when I was a freshman in college. These are complex partial seizures, which occur with no warning, last a few minutes and leave me confused and with no memory of what happened. Needless to say, this was an incredibly difficult time in my life. I had to withdraw from school out of state, and move back home with my parents. I lost contact with my new friends, and questioned if I would ever live independently or if I had any future at all. I was afraid to even leave the house. What if I had a seizure in a restaurant, or in a class, or at a job, or on a date, or… anywhere? I felt anger, embarrassment, shame, loss of autonomy, grief, sadness and despair.
Fifteen years later, I still have between ten and thirty complex partial seizures per month and clusters of simple partials, despite trying a multitude of treatments. In spite of this, I am very proud of what I have accomplished. I developed a personal motto – You cannot control what happens to you in life, but you can control how you respond to it – and this has helped me come to terms with my diagnosis and regain a sense of autonomy.
After six months at home, I went back to college and graduated with my class, and then pursued Master’s degrees in Clinical Social Work and Healthcare Administration. I developed a passion for helping others living with a chronic illness, and I have worked for over ten years in the healthcare field helping patients with ALS, Alzheimer’s, Diabetes, End State Renal Disease, Huntington’s disease and other life-altering conditions.
I would be lying if I said working was easy. Work can be stressful for all of us, but when you add epilepsy into the mix it becomes stressful in ways others may not even fathom. For example, how can I get a job when most require you to have a drivers license or are inaccessible by public transportation? If I find an accessible job, is it safe for me to commute independently? If I get an interview, what should I do if the interviewer is wearing a shiny necklace or patterned tie (to which I am photosensitive)? Why am I lying awake at night fearing the possibility of a seizure at work the next day? If I don’t get a good night’s sleep, will I be more likely to have a seizure? And how do I speak to co-workers that witness a seizure? I needed to manage and overcome all of these stressors to pursue educational and professional growth, and prove to myself that I have control over how I face obstacles.
Seizures have also had an impact on my hobbies and interests. I grew up with a passion for sailing – I sailed with family, raced skiffs, lasers, and other dinghies, won regattas, and was the captain of my high school sailing team. Sailing was and is my happy place. However, my doctors and family did not feel it was safe for me to be out on the water alone or in a fast-paced competition, especially when the reflective surface of the water can trigger seizures. To continue to pursue my passion I tried out as a coxswain for my college crew team; unfortunately, the health team would not allow me to participate. I sometimes felt robbed of the opportunity to pursue my interests, but decided to focus on new ways of bringing pleasure into my daily life. I love photography and live music, and have turned these into methods for creative fulfillment. I live near the water today and still find my happy place by watching the harbor boats, taking a skippered sail, walking on the shore, or simply breathing in the ocean air.
It has taken many years for me to feel comfortable sharing my story, due to the perceived stigma associated with epilepsy. For a very long time I kept my seizures as closely guarded a secret as possible, and would even lower my voice when saying the word “seizure” in public. Through family support and my husband’s never-ending love, I now feel empowered by speaking openly about my experiences, and when ready I would encourage others to share their story, as education and awareness combat stigma and strengthen the community. Remind yourself that YOU have control over how you respond to circumstances and therefore epilepsy does not need to dictate what you can and cannot accomplish.