As told to Marnie Goodfriend
March 26, 2023, is Purple Day, Supporting Epilepsy Around the World.
I had my first seizure the summer before eighth grade as I was walking down the hall to take a shower. My parents found me passed out in a towel. I don't remember it because I had a moment of amnesia before having what I’d later learn was a tonic-clonic seizure. I do remember waking up half-naked with lots of people standing over my body, not knowing what had happened to me.
The local hospital transferred me to Mass General Hospital, where I was diagnosed with epilepsy. I didn’t understand the severity of my condition and one of my first thoughts was about whether I could still go on an upcoming vacation with a friend.
I grew up in a tight-knit Irish Catholic family that did their best to treat my epilepsy like it was no big deal, like they had it under control. I swam and skied alongside my sisters, went to school and traveled. But some things were not possible. I couldn’t go on spring break with my friends or study abroad. My mom went to great lengths to connect me with support groups and other people with epilepsy, and my dad worried a lot.
I only had seizures a few times a year, but there was constant fear and anxiety about when it would happen again and whether I’d be OK. When we moved from the city to the suburbs two years before my first seizure, I’d developed anxiety and depression from feeling like the new weird kid. The anti-seizure medications I was prescribed made those mental health issues worse.
The neurologists I saw were constantly changing my medicine to minimize how often I had seizures, but the side effects were devastating. Some were harming my stomach or my liver and kidney function. Others caused gum overgrowth or bleeding gums. When I was around 16, I gained a lot of weight from taking valproic acid, something I had to learn to live with since the prescription was effective.
I yearned to be independent and wanted to attend college in New York City. This was a real source of anxiety for my parents, but they agreed to let me go. I wasn’t as nervous about epilepsy as I should have been. My pediatric neurologist had made the mistake of saying, “Maybe you'll just grow out of it.” I took that to mean that I was cured.
While I was at college, I didn't take my medicine for months at a time, and when my parents came to pick me up on the last day of freshman year, they passed an ambulance on their way to the campus. I was being rushed to the emergency room with a prolonged tonic-clonic seizure from not having taken my meds. That was my wake-up call that I had a serious condition that was not going away.
I met my husband during our freshman year of college, but we didn’t date until after we graduated. Coincidentally, he became an EMT, then a paramedic and worked for the fire department. I joke that I married well because he knew and understood my epilepsy before we started dating.
After living together for about five years, I was shocked to discover that I had missed my period even though I was on birth control pills. My husband’s first words to me were, “You need to call your neurologist.” I was worried about how I’d navigate pregnancy with epilepsy, but I got lucky. My daughter’s birth went well, thanks to the care of an OB-GYN specializing in high-risk pregnancies. However, I wasn’t told that I was at greater risk for preeclampsia, which put my baby and me at high risk for death. I ended up delivering a week early because of it.
Jessica and her daughter at an epilepsy awareness walk.
I also didn’t know that postpartum depression is common in women with epilepsy, and I didn’t receive help from my healthcare provider when it happened to me. It’s frustrating to know that this information was available, but no one shared it with me. Instead, I was blindsided and felt alone.
My second pregnancy was also a surprise. My husband was scheduled for a vasectomy later that month, and I was still on birth control. At 19 weeks, we discovered the baby had a neural tube defect called spina bifida that had caused hydrocephalus that had advanced beyond the point of viability. We had already named her and planned on telling our daughter about her new baby sister soon when we made the heart-wrenching decision to terminate the pregnancy. I learned later that the valproic acid I had taken from age 16 through my early 20s is not recommended for women of childbearing age because it can cause neural tube defects in pregnancy — and that’s exactly what happened. It was infuriating that no one had told me all of the risks or what was possible for me throughout my epilepsy journey.
After the loss, I started writing letters to my baby as a way to heal. This led to me creating a blog for people living with epilepsy. When people online asked if they could share their stories, I taught myself how to code and launched a website. That’s how Living Well With Epilepsy was born. I wanted people to have all the information and support I didn’t have so others can make informed decisions, pursue their dreams and live meaningful lives.
At this point, I haven’t had a seizure for 20 years, which has only been possible because I take the right combination of medication daily, get enough sleep, eat well and exercise.
Early on, the biggest challenge for me was facing the stigma of epilepsy. People often assume that someone with epilepsy could have a seizure at any moment and that we’re not as capable because of our condition. In fact, it was illegal for people with epilepsy to marry in 17 states until the 1950s (with one holdout waiting to repeal the law until 1980). People with epilepsy could also be turned away from theaters, restaurants and public places until the 1970s. Being seen as reliable and independent is critical to my success, as is spreading awareness about what living with epilepsy really looks like. It varies from person to person, but epilepsy can be managed — and no one is less than anyone else for having it.
Today, my life is full with family and doing the work I love. I’ve learned how to advocate for my health and help others access medical and financial resources and have their voices heard. The compassionate mother, wife, advocate and businesswoman I’ve become is stronger because of opportunities that have come to me from epilepsy, not despite it.
Publisher: Jessica Smith