Epilepsy: The Lights Are On But No One Is Home

Most of what I know about epilepsy dates from my experience with my mother’s illness thirty years ago. It’s a bit dated. However, my experience describes a kind of epilepsy that is still obscure, and it aptly illustrates the extreme disruption epilepsy can cause. It’s not what most people would expect given typical assumptions. The story is also a parable of the difference outsiders can make by stepping into a situation that frightens off even the well-intentioned.

Types of seizure (from vanumu.com)

Epilepsy affects about 1% of the population, which amounts to several million people in the United States alone. Its stereotype is the grand mal¹ or tonic-clonic seizure. This type of generalized seizure—and there are others, as shown in the diagram—is like a wave of abnormal electrical activity that rolls through the entire brain. The seizure leads to unconsciousness, muscles stiffening in the body (which resembles being “seized”), and then whole-body convulsions for a minute or two. Mercifully, the person is usually unharmed and does not remember anything.² However, the witnesses will remember very well: The sight is frightening, especially the first time.

My mother had a dozen or so of these tonic-clonic seizures, but her most difficult problems stemmed from something else. Her underlying issue turned out to be psychomotor epilepsy, now called temporal lobe epilepsy or complex partial seizures (more here). This kind of epilepsy involves seizures that typically originate from a lesion (that is, damage) in the temporal lobes of the brain (see illustration)³ and are confined to that region, hence are termed “partial.” Complex partial seizures do not involve convulsions but often impair consciousness. They involve both temporal lobes and tend to cause amnesia (the temporal lobes are associated with forming memories). A partial seizure can sometimes progress into a generalized tonic-clonic seizure.

The temporal lobe (click for animation)

A complex partial seizure disorder can be misdiagnosed because it may resemble a number of unrelated problems. Any amount of alcohol, for example, might make the person appear quite drunk. Alcohol lowers the seizure threshold, and my mother had to quit drinking altogether. Her seizures could be rather surreal, for example she would have seemingly normal conversations that after a while didn’t quite make sense, which I describe as “the lights were on but no one was home.” Less amusingly, she had a sort of high-functioning sleepwalking problem. While she was hospitalized she once turned up a mile away, late at night and in her bathrobe. Thank you to the police officer who brought her back without a fuss, and to an anonymous person who mailed her wallet with the cash still inside (less postage, fair enough).

The worst series of seizures came during my “summer of hell” in 1978, the year after my mother spent three months in a psychiatric hospital and prematurely checked herself out. Unmedicated, she lurched from one seizure episode to another, which is not surprising. Seizures can have a kindling effect, which means that each seizure lowers the threshold for the next. The seizures likely kindled her bipolar disorder as well, inducing large mood swings between depression and mania. As if that weren’t enough, bipolar can also kindle itself. These patterns thus get worse with age. Her symptoms emerged in her teenage years, but because of the stigma her loving parents looked the other way. Stigma also discouraged her from seeking treatment as an adult. By the time she no longer had a choice, the self-destructive pathways were deeply ingrained.⁴

I should have sought help that summer, but it was hard. I was just eleven years old. There was no one else in our daily lives (my father, briefly her husband, left before I was born). I am thankful for two adult friends, saints really, who intervened when they stumbled into the chaos. She went back to the psychiatric hospital with me in the bargain, to stay in a bungalow on the grounds. A year there brought the worst of the seizures and maybe half of the bipolar under pharmaceutical control.⁵ It was not a gentle path, but she persevered. As for myself, delivered from the awful situation of that summer (albeit in a rather odd new one), I swore that I would never be passive again.

Looking back, I’m surprised by my own tolerance of my mother’s troubles. It was a delicate relationship. I loved her, but she made my life hard. Yet I also understood her better than anyone else ever did. I understood that biology can drive one to do things without intention, and that blaming her failures on not “trying harder” was poisonous nonsense. Epilepsy and bipolar alike are illnesses, not character flaws, and require treatment. But however intellectually convinced I was of these facts, my survival turned on my simple faith in her devotion to me.

Crazy things happen to ordinary people. My mother, who was bright, beautiful, and funny, didn’t seem like a wreck until she fell apart. Most survivors take the damage, move on with various amounts of baggage, and keep the experience secret. It’s expected. I buried mine. But now that I have children of similar ages, I reimagine that past through them and shudder when I imagine them going through anything like it. (Thankfully their lives are pretty ordinary.) I can also now appreciate the difference that a handful of others made in my life. They didn’t have to do anything and actually didn’t do all that much, but thank goodness they did what they did. I wish there were many more like them. If you are the one in trouble, let me say that you deserve better, and that better does exist. I’ve been there, I’m back, and I’m no longer silent.

¹ The term grand mal literally translates as “big bad,” which is certainly a ten-thumbs way of saying it. However, it is accurate.

² It is a myth that someone can swallow their tongue during a seizure. That is physically impossible. Do not stick anything in the person’s mouth, even supposing you could get it open. Rolling them on their side can help them to breathe. Sometimes you can’t do much more than try to protect them from injuring themselves against things in their surroundings. Do not leave them alone. Afterwards the person may be disoriented and headachy for while. More info.

³ In my mother’s case, her doctors speculated she might have been injured during her birth via high forceps delivery—a now-discredited procedure that involved gripping the baby’s head while still high in the uterus. This was done because in that era the mother was often anesthetized to spare her pain, the so-called twilight sleep, which also made her unavailable to push. The forceps sometimes left temporary marks on the baby’s relatively soft skull. Forceps are now used more conservatively, and ultimately there is no way to be sure of the true cause of her epilepsy. As for her bipolar disorder, it appears almost certain that she was genetically predisposed for it.

⁴ The cycle was so incorrigible that by the time I was sixteen the doctors were talking seriously of brain surgery to limit the seizures by severing the connection, the corpus callosum, between the hemispheres of her brain. She died of a heart attack before the question had been resolved.

⁵ For the curious, the key drugs were Dilantin, Tegretol, and Ativan. In the last twenty years, improvements such as Lamictal have emerged, and there is promising research suggesting an important role for nutritional supplements such as Vitamin D. Some antiepileptic drugs, including Lamictal, are indicated and approved for bipolar disorder, raising the possibility that the two disorders have neurological pathways in common.