It is five a.m. when the soft, yet staccato rhythm suddenly awakens me and I throw off the covers. My right hand snatches for my glasses as my left is already reaching for the bedroom door. Lauren is having a seizure. I hit the hall light switch as I burst into her room. The light from the hall dimly illuminates my daughter’s thin body at war with the air around her. Her head and arms move to a beat that has no music, no joy. She is gripped by a formless menace that embodies terror and fear. As suddenly as it began, it ends. Perhaps sixty seconds have gone by. Yet it feels like far longer. Her body continues to jolt every few seconds, in what I call aftershocks, and then she quiets. Her eyes focus and questions linger in her gaze. She can’t understand what has just happened and I cannot explain it to her. How do you explain the electrical storm that rages her brain, racks her body, and leaves her confused and exhausted? Lauren’s understanding of life is simple. People love and care for her. She is safe and happy.
Lauren had her first seizure when she was a year and a half. She has been on pretty much every seizure medication and combination thereof that is available. Nothing has controlled her seizures. There were periods of time when she would have over twenty seizures a day. Her life and her parent’s life have been ruled by the prevention of, protection from, and devastating results of each occurrence. Almost four years ago a new seizure drug came on the market. At the time Lauren was having about fifteen seizures a month. The new drug has taken a huge bite out of that number and she is down to one or two a month now.
Lauren’s seizures are not lengthy and she recovers in due time. The most obvious after effect of a seizure, for Lauren, is fatigue and loss of appetite. The occurrence of a seizure means that Lauren will sleep most of the following day. When she was still in school, that meant that my schedule was cancelled. She would not be going to school and I would need to repeatedly wake her, and cajole her into eating, so that she could take her four daily doses of medication. Now that Lauren has her own DSPs, my schedule is not affected as much, and with the advent of time-released medications, she only has to take meds once a day.
What have been the other effects of literally hundreds of seizures over her 24 years? I don’t want to think about that. I look at pictures of her when she was three or four years old. There is a light, a connection with the world that is not there any more. Her eyes still sparkle, and her smile is infectious, but there is something different, something lost.
David Axelrod, presidential advisor and father of a young woman whose life has been forever devastated by epilepsy calls a seizure, "terrorism of the brain”, how apt a description. A seizure is a violent, brutal, and dramatic attack that shows no respect for the innocent it holds hostage. More people will die in this country from epilepsy this year than will die from breast cancer. The incidence of sudden death is twenty-four times more likely in someone who has epilepsy. Those facts are a heavy weight, a cloud on the horizon each and every day. Even though till now Lauren has recovered from each seizure and we have moved on with life, I know that any seizure may be a life changing moment. So that is why when I am awakened by the pernicious rhythm of yet another seizure, I never walk, I run.