Shaken to death

My cousin Susan died a week or so ago.

She was discovered dead in the bathtub in her apartment by her mother, who had come to see if anything was wrong after a number of unreturned phone calls. From what I'm told some time had passed between her death and the discovery of her body, adding an additional layer to her mother's profound grief in the form of the beginning stages of decomposition.

No autopsy will be performed. The proximate cause of death appears to be drowning, likely brought on by the after effects of an epileptic seizure. Cousin Susie was prone to seizures, had been since she was born, her life imbued by her struggle to control those seizures and live a normalized life. The speculation is that she fell asleep while relaxing in the bath, then seized as she began to awaken, apparently a common part of her seizure pattern. Her seizures sometimes lasted as long as several minutes, and she tended to roll to one side and assume the fetal position as the seizure came to a close. For many epileptics the end of the seizures is followed immediately by a period of unconsciousness. Somewhere between the ending of the seizure and unconsciousness, Susie drowned.

I'm 40, and best I can recall Susie was a year or two younger than I, making her 38-39 at the time of her death, an age in our society considered relatively young for such an end. Her passing has given me some pause, but not as you might think - a fellow epileptic with the inside knowledge wondering at my own behavior, potential risks to be avoided, the wisdom of taking a bath when home alone. No, her death gives me pause because she and I have not been close in many years. My seizures didn't begin until I was 20 years old, and we've pursued very different treatment paths. We both wanted the same things - a modicum of "normality", a way to live that resembled the lives of those around us.

Susie had a 20 year jump on me when it came to living with seizures, the familial strains it can cause, the tremendous side effects of the powerful medications used to exert some control over the frequency and severity of seizures, and the personality distortions they contribute to. When I had my first seizure, I was conscious during the entire thing as initially my feet, then progressively the rest of my body locked up so tightly I could no longer call for help. Fortunately I had chosen my dorm hall steps as the venue for my epileptic debut, so a number of people who had heard came running. My room mate at the time, Neil, was trained as a paramedic, and he tried to take control of what was happening, but I was so deep into the seizure, and the outside world was disappearing at such a fantastic rate that all I had to time to think before that last pinhole of light was swallowed by complete darkness was" Don't worry, Neil, I'm only dying."

I awoke trying to punch out an Air Force paramedic. He retaliated by giving me a hefty injection of Valium. We reconciled.

This is my personal perspective about my misbehaving brain. I've stepped back from the threshold of the intense surgical route my cousin chose, instead attempting to find my own way to live with them, around them, whatever.

Susie and I had not been close in many years, but I feel the loss of her as my cousin, as a human being, and as someone who had great courage and will to render herself "normal".