Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.
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Cortney was two years younger than me, but in many ways she appeared much younger than that. After a tough delivery at birth, Cortney went through a series of infantile spasms as a baby and had developmental issues during most of her childhood. Doctors even told my parents she might have to be institutionalized. I never knew about these things but always noted that she hadn’t achieved certain intellectual milestones that I had hit at her same age just a couple years before. But, she wasn’t so different that it was ever necessary to make it a big deal and she was otherwise a mainstream student.
When my sister hit her early teens, though, her slowness had developed into social difficulty and she found herself often being made fun of and having trouble fitting in. Not too surprisingly, this ultimately led to an eating disorder as her childhood complexities evolved into body dysmorphia—meaning an abnormally negative view of your body—in her teenage years. Finally, her rapid weight loss and frailty gave way to teenage epilepsy, begetting a string of seizures not seen since she was an early infant.
Cortney began a series of medical treatments, largely relying onvarious drugs to help her control her epilepsy. On the plus side, the severity of her medical situation seemed to detract her from her eating disorder, but the seizures, combined with heavy medication, made it even more difficult for her to adhere to social norms in her behavior and appearance. Unfortunately, drugs that ease the kind of frequent seizures that Cortney had also cause body hair growth, slowness in thought, and difficulty in clear communication. Put another way, Cortney was made to be even more different—hardly something that a teenage girl who was already uncomfortable in her own skin could ever want. In the haze of constant medication, she couldn’t do math, complete sentences in a normal conversational speed, or follow basic instructions. But I could see in her eyes she knew that—she just couldn’t process it quickly enough on the surface. It must have been terribly frustrating, like not being able to fully wake yourself from a dream.
But, at the same time, my sister had begun to develop her own interests and ambitions by this point, and even with the troubles epilepsy brought, Cortney entered a four-year academic program in gerontology, dedicating her life to the care of the elderly, a group of people who she always found kind to her and thoughtful beyond her peer group. Cortney also found a love of singing. This was particularly interesting. She was a terrible singer. She took after my mother in tone and my father in rhythm. Poor girl.
And so, with a path laid out for her to have a life with some of the independence we never thought she’d have after her difficulties as an infant, it was impressive to think Cortney would potentially have a future beyond any you would forecast for her as a baby. But it did not turn out that way.
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Cortney died on October 6th, 2001. She drowned after slipping into a lake during a seizure on a nature walk in Connecticut. She was 24 years old.
Cortney’s funeral was held in Great Neck, New York, where she was to be buried next to her grandfather. We had a modest funeral. We had options for music to be played prior to the ceremony at the funeral home. My mother had also found some tapes of Cortney singing with her music teacher that we were able to play over the sound system at the home.
Cortney’s voice was beautiful. I don’t think I‘d ever heard her so clearly and unencumbered by challenge as I did that cold autumn day.
— Written by Dylan Seff