Bouncing in the 1960’s, Epilepsy in the 2000's
This is a 1969 living room, with a baby (me) sitting in a bouncy seat, which is sitting on a table. I don’t know if I was strapped in on this occasion, but in late October, 1969, I wasn’t strapped in. I wiggled out and cracked my head on a marble table leg. I was at the babysitter’s house. My stressed out mom, had dropped me at one house, then drove my two and a half year old sister to a different place, then headed to work. She repressed a lot of the memories I think, because I didn’t even know about the incident until I was in college. Probing her years later, she told me that she couldn’t leave me and my sister with the same babysitter. I cried all of the time, and my sister tormented me relentlessly. So when she went back to work, she had to find someone else to take care of me.
Then, I ended up in the hospital with a fractured skull.
Ironically, I didn’t even stay overnight. Dr. Caldroney, our pediatrician, had told my mom that there wasn’t anything that could be done about a fractured skull. “Would I be ok?” “Would there be brain damage?” Dr. Caldroney didn’t know. Take it one day at a time. I’m told that my great-grandmother held me straight through the night after we came home from the hospital. Neighbors pitched in to help, and over a few weeks, the swelling abated, and I seemed fine. As time went on…my mother had my little brother the following year, my injury retreated to a painful memory for the adults. But I had no idea that anything traumatic had happened to me as a baby. The trauma I experienced centered my father’s rage and abuse; and after, my parent’s ugly divorce. Physically, I was fine.
But I wasn’t fine.
My epilepsy diagnosis didn’t come until 2005, when I was 36. A deep dive into my health history over time, shows however, that I started having mild seizures, triggered by fatigue, stress, and poor nutrition, when I was in college. During my freshman year, I became prone to migraines. I was pushing myself academically — as the first person in your family to pursue a bachelor’s degree, I wanted to prove myself. And it was around this time that I learned about my childhood head injury. But the health professionals in my life at the time were at the campus clinic. No ever mentioned the possible connection between my fractured skull and the symptoms I was experiencing.
“Jumpy things*” was the phrase I used to describe what happened to me if I was moving, like in a car or train, where sunlight caused confusion and headaches. I chalked it up to burning the candle at both ends, blaming it on sleep deprivation from a night out with friends or studying for a test. In fact, in my junior year, after an all-nighter I pulled to take a chemistry test, I took some cold medicine (I had a cold) and went to sleep right before lunch. When my roomate woke me up at dinnertime, she entered our room to find me with a black eye, blood trickling down from my mouth, and my bedside table overturned. Still, we joked that I had had a fight with myself, that I was mad at myself for not remembering the molecular make up of some compound. The joke spread through our house, and after a few days, the next drama shifted everyone’s attention. My “fight” was replaced by someone else’s big breakup.
I took birth control for most of the time between college and when I began dating my husband, in 2004. There were a few years in between, when I was unemployed and without healthcare, that I now know were linked to my having my first two real seizures.
Waking up in an ambulance, alone, with strangers poking at you and a needle stuck in your arm, is one of the scariest experiences imaginable. That first time, in 2000, eight years out of college, was a perfect storm just waiting to happen. I was too skinny. I was paying my bills with credit cards. I was dating an emotionally abusive man, who I wanted to marry. And I was running in Central Park. It was around dusk, and all that I remember is the “jumpy things” as I ran by the trees. The ER doc asked me if I remembered fainting. I didn’t. He asked if I had any medical conditions, and I told him that I didn’t. He perfomed an EKG and table test, and I stayed overnight for observation because he thought that I might have a heart murmur. I walked out with a $5000 bill, and with no health insurance, my money woes got worse.
A few weeks later, the same thing happened. I fainted while running and ended up in a different ambulance, headed to a different hospital. Luckily, I was able to explain that I had just had some tests and was working with my doctor. Otherwise healthy, I was sent home with a $1000 bill.
My primary care doctor took interest. We’d been on hiatus for more than a year, since I’d lost my healthcare coverage. But after two back-to-back fainting spells while running, and no conclusive information about a heart condition, he ran some additional tests. His diagnosis was anxiety, and he put me on anti-anxiety medication. Ironically, the back-to-back medical emergencies was a red flag for my boyfriend. He broke up with me soon after. As I mended my heart, I went back to running. I stopped taking meds and stopped ending up in the hospital.
My career took off in 2001, and when I met my husband, I was financially secure and physically strong. Our relationship got serious very quickly, and as my body changed once again — I dropped weight and became more anxious about sex and hopes for marriage — I ended up having another seizure. This time, my doctor suggested that I see a neurologist, and at the age of 36, I had my first EEG. Near the spot where my skull was fractured when I was three-months old, electrical circuits were misfiring. Scar tissue. Epilepsy.
I went on anti-seizure medication. I got to keep running, I felt strong, and my career continued to thrive. But in 2005, I also wanted a family, so I weaned off of my medication in 2007. Epileptic women can have a hard time getting pregnant, so I am incredibly fortunate to have become a mom soon after I got married. I wasn’t able to give my daughter a sibling, in part I think, because of my need to go back on medication after having another series of seizures when she was three years old. But I’ve learned a lot more about epilepsy, specially women and epilepsy since 2004.
Specialists now know that hormone changes affect the brain’s electricity. That perfect storm that I had experienced as a young adult — sleep deprivation, poor nutrition, stress, coupled with monthly hormone changes — are linked to seizure activity in women. The drop in progesterone during the menstrual cycle, can cause seizures. Birth control, meanwhile, stabilizes hormones. In fact, research and a whole branch of neurological science is developing around the relationship between women and epilepsy. Since November is epilepsy awareness month, I wanted to share this story so that women take their health as seriously as I do now. In some ways, epilepsy saved me. I’m working on a book about how epilepsy has affected my life — Epilepsy became my superpower — but in the meantime, learn the facts and get answers at the Epilepsy Foundation.
