Another Mother's Story: For a Friend Whose Child Has Epilepsy

Her depression began with the early adolescent-onset of her younger son's epilepsy, diagnosed when he was eleven. The specialist who regulates and monitors her son's condition explained to both of them in great detail the form of epilepsy from which he suffers, and explains at every visit that he can and will be helped by drugs. He takes the drug Valproate, goes for physiotherapy once a month, and worries about whether he will have a normal life.

Her husband was devastated and expressed his fear by treating his son with inappropriate tenderness or equally inappropriate irritation.

Her husband's unhappy reaction could be triggered or exaggerated by the boy's reaction to ordinary events: "We are vertical animals. We are not meant to sit or lie on the couch all day." Her son would not move.

There was no family history of seizures; the etiology of his seizure disorder was apparently secondary to two episodes of viral meningitis he had as an infant, according to the doctors. 150,000 people will develop epilepsy each year, according to the research she's done on this disease; over a million people in the country have epilepsy, and so she is confused by the idea that all of these people must have mothers and that there are a million other women who know how she feels.

Treatments in the past for this disorder (never call it a disease, they told her) included drilling holes in the skulls of fifteenth-century children in order to release humours and vapors and fluids. That any child lived through this procedure astonishes her. During the next few centuries, castration was performed on males because it was believed that epilepsy was brought on by excessive masturbation. Arms that shook were cut off; feet and legs were bound.

Days when those with the disorder were institutionalized treated as deviants, treated as deranged, as deeply defective, are over.

Aren't they?

"Get off the couch," says her husband to her son. "Now."

As a child, her younger son once described having a pet dolphin living in his stomach, a dolphin which would usually float but sometimes rise and disrupt the surface of his life. The doctor said this was no doubt an early was of his understanding the mild seizures he probably had even then, what they called "auras," but that no one could name for them then. His first seizures were the most unreal moments of her life; his disorder was hers, too, because she watched it, helpless and ashamed, with nothing to do.

Watching her child possessed by this unbiddable creature, scared when he came back to her and inconsolable for a day or two afterwards, confirmed her decision not to try for a full-time job. She wanted to be a place easy for her son to reach, refusing to remind herself that in these days of cell phones and her son's independence, she could easily work away from home.

There are more reasons for her to leave the house these days but she is reluctant to go too far.

Going too far has worried her, always worried her. What if she is far away and something happens?

Her older son gives her no problems. This in itself worries her. He is handsome, intelligent, and as cold and impermeable as a ceramic tile. In this, his last year of high school, he is consumed by applications to college. He pretends to lean towards law but she's read the private journal he keeps between the mattress and the bedspring, along with two copies of Penthouse, and knows that he intends to take all the required premed courses without actually declaring it as a major.

He intends to withhold that satisfaction from his parents for as long as possible. His mother, she knows by heart, is considered beyond or below the need to please; she'll be happy, her son writes, so long as he treats her with a minimum of civility. The worst thing he wrote about her was that she begged for every scrap of attention ("she's never happy until you talk to her") and that he wished she would just "relax and stop trying to pry a life" out of them all. Most of the pages in the densely packed small notebook were filled with a combination of sexual fantasies and school anxieties--he wrote with equal vigor about trying to lose his virginity and trying to get good SATs. This past year he'd done both.

She thought she would feel guilty and want to punish herself for reading her son's diaries, but she doesn't feel bad at all. Maybe because she finds her eldest son it, for all she fiercely loves him, faintly boring. He's generic; he's his father's son.

The other one belongs to and is of neither of them--it's as if he were dropped into the family from another galaxy. She worries about whether he'll have to face another seizure that day, that month, that year--they are unpredictable--but understands that her worries float above him, as removed from him as the stars are from the sea.