For me, epilepsy awareness is not simply learning about treatment, triggers, and statistics. It is also about the gritty experiences of individuals with epilepsy. Even after many years of living with epilepsy, I am sometimes still embarrassed by it and feel stigmatized. I am resentful and frustrated that I have to keep fighting. As anybody with a chronic condition knows, no matter how many people are by your side or offer love and support, it is often a lonely journey.
I was diagnosed with epilepsy at age 14 when I had a tonic-clonic seizure. I am now 41 years old. For years, I was generally stable with monotherapy medication and had only mild to moderate side effects. I completed high school, went to college and law school, got married, began working as an attorney dedicated to public service, and had children.
However, about six years ago, I began to have breakthrough focal seizures. Even with adjustments to my medication, I did not improve. Instead of slowing down, I pushed my limits until my brain could no longer keep up with the stress.
In the last six months of 2021, I had refractory focal seizures. During my medical leave of absence from work, I was having multiple focal seizures per day. I was losing awareness, was unstable while on my feet, not eating for days at a time because I could not stay awake and had anxiety attacks if I left my house. Some days I felt too weak to keep going, and I had no success with many treatments. My husband pushed me to continue trying, but I was in denial and had little energy, so I made active efforts to pretend I was fine and isolated myself.
After working with my neurologist for months, we found a regimen of medication that began to stabilize me. As I emerged from what seemed like a chronic postictal state, I began to experience the stages of grief. I was traumatized and became conscious of the figurative wreckage behind me. My family’s life revolved around my epilepsy and treatment. My husband and children experienced their own individual traumas. They saw me struggle and were terrified of what might happen. Just like me, they are scared that I will destabilize again at any moment. Undoubtedly, the most difficult part about epilepsy for me is knowing how it negatively impacts my children.
Yet despite the negative impact, they observe my resilience. They see that I can persevere and regain my strength. There is hope that more treatments will be developed to aid in the fight against epilepsy to improve the quality of life for the people who are living with epilepsy around the world.
Even with all the heartache epilepsy has caused, such as feeling the loss of a part of myself and stifled independence, being present for those I care about makes the fight worth it. I can be a wife and mother and continue working. When my epilepsy creates barriers, I try to find a way around them. If I cannot, I recognize that I have limitations as epilepsy is part of who I am. Being a role model includes acceptance of oneself.