If you believed the stereotypes, Carrie would be far from what you would expect in a typical patient with epilepsy. She is a successful professional who works as an associate director of an internship program at DePaul University, a mother of a happy, healthy little girl, an activist who volunteers with political campaigns, and still someone who lives with intractable seizures.
“When I tell people I have epilepsy, it feels like they are seeing another side of me.”
But through Carrie’s successes, achievements, and major milestones met, the “side” of her that has been occupied by epilepsy remains ever-present.
Carrie’s seizures started when she was 11 years old. First they appeared as what her parents described as “staring spells” combined with an odd nervous sensation that led to a sense of drowsiness. Concerned that she was having fits of anxiety, her parents brought her to a psychiatrist for evaluation. After determining this was not simply a case of anxiety, eventually an EEG was performed and she was diagnosed with a “seizure disorder.” Carrie was started on the first of a long series of antiepileptic medications to treat her seizures and within a couple of years, received the official diagnosis of epilepsy and told by various doctors “you might just grow out of this”.
Over the next 25 years, Carrie tried over ten antiepilepsy medications, all with a different kaliedescope of side-effects and temporary successes. Although her seizures are so mild that no one can tell she’s having one except herself, when she was 25 years old, she had her first grand mal seizure and it seemed as if her whole life changed. Carrie realized that her grand mal seizure occurred after a period of high stress and little sleep.
“After that point and until this day” Carrie said, “I never compromise on sleep. When my daughter was born, my husband did all the night time feedings. If I can’t fall asleep at night, I have to sleep later in the morning to make sure that I’ve slept a full 6 hours.”
“I know that if I were to have a grand mal seizure because I was sleep deprived and it was something I could have prevented, it would be devastating.”
When Carrie was 29 years old, she had a temporal lobectomy and dreamed that she would one day be free of medication and be free of seizures. Several years after the surgery, she is on the same amount of medication that she was taking prior to the surgery, but the number of simple partial seizures she was having dramatically decreased from 10-12 each month to just 3 – 5 each year. Carrie feels like this is some degree of success, even if it isn’t the ultimate goal of seizure freedom. In the end, Carrie’s walk with epilepsy has given her a very positive perspective on life in general.
“Epilepsy has given me a stronger appreciation of life and has made me feel more empathetic for people with worse diseases. When I find out that someone has something like multiple sclerosis, I know that it affects their entire life and their entire family just as epilepsy has affected mine. My epilepsy could be a lot worse. It’s not like I’m dealing with cancer. I think I have a more grateful attitude as a result of managing this disease and the risks it presents.”
Carrie states that her experiences with seizures have also given her tremendous appreciation and gratitude for the health and happiness of her 3 and a half year-old daughter, Norah. Although Carrie had to stay on her seizure medication throughout the pregnancy to reduce the risk of having a seizure and potentially harming the baby, Norah is active, intelligent, and perfect. Norah has had three complex febrile seizures associated with high fevers and viral illnesses in her first few years, putting Carrie on “high alert” to watch her daughter for more seizures any time she is ill. With her history and the recurrent febrile seizures, Carrie knows that her daughter is at increased risk of developing epilepsy in the future, but she prays that the stars will align on her side this time.
Perhaps most apparent and above all, epilepsy has bred resilience and strength in Carrie beyond all else. When I asked her what message she’d like to convey to others touched by seizures, Carrie said, “Epilepsy is part of me, but not all of who I am. I’m not going to let this stop me from doing what I want to do.”
When I hung up the phone after talking with Carrie, I realized that short of freedom from seizures, Carrie found what we all hope for. The ability to own a disease that has potential to overtake us is invaluable. Carrie’s positivity, gratitude, perspective, and fortitude were some of the keys to her success.
Again I remembered that the more we talk, the more we understand.
Please pass it on.