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Epilepsy: The Lights Are On But No One Is Home

February 3, 2011

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

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.

Why Do I Live Here? It’s Cold!

January 26, 2011

Ice falling on widget (Jan. 18, 2011)

Today it is cold in Washington. I have seen colder,1 but the memory of cold days elsewhere doesn’t make today any nicer. On the other hand, memories of warm days in warmer places do cause me trouble. I grew up in Los Angeles. You know: balmy weather, arid beaches, and fuzzy brown air you can cut and chew. I wore shorts and bicycled to school year-round. The sun roasted a permanent farmer’s tan into my skin. I was comfortable, I was naïve. I had no idea what it’s like to go outside after a shower and have your hair freeze. If I wanted to see snow, say to ski, I went to the mountains. An ice storm in L.A. would provoke terror, riots, and religious conversion. They don’t handle breaks in the routine very well.

It has been my 25-year education in the East. When I moved to Boston and real winters, I was astonished that routines went on after a meterologist’s chipper prediction of temperatures “in the single digits.” In winter I dutifully stomped to class in defiance of the season, snatching some paper napkins at breakfast so that I could drain my sinuses when I arrived. Harvard closes for nothing.2 I am convinced the Cambridge cab drivers swerve into the gutter slush to nail pedestrians. A few years later in Ithaca I slogged through three-foot blizzards and even more bitter cold. I remember the little rituals like stashing my gloves in my hat during class, and carrying a tube of vaseline so my lips wouldn’t crack. (There were occasional treats like tubing down Libe Slope at midnight without a paralyzing tree strike.)  In Chicago I staggered against the wind, my baby strapped to my chest under my oversize wilderness jacket. (Relax: He would be cozy in his Snugli and fall asleep promptly, cocooned in baby oblivion. Embracing that twenty-pound hot water bottle was also a plus.) I remember being surprised the car could start or run at twenty degrees below zero. But it was also an adventure. It made me feel alive. I had a great job, probably the best I ever will. A worthy sacrifice for my legal career, I reminded myself. Ah, to be young and stupid.

I am thankful that I am now in milder climes, though far from paradise. A week ago there was an ice storm, uncountable little pellets tapping at the buildings and earth (admittedly the hushed white all-but-silent sound was a pretty thing). Yesterday brought a slippery mess dithering between snow, sleet, and rain, and choosing all three. A ten-minute drive took nearly an hour, a very stimulating hour dodging hapless drivers either stalled or sliding.3 Inwardly, I find my changing reaction sobering: When snow goes from miraculous to irritating, you’ve lost part of your soul.

Snapshot near midnight

Last night's urban renewal, near midnight

Now, I believe it’s a fool who curses the storm. If you’re unhappy, move. So why don’t I? It’s not career that keeps me here. My work sadly has no relevance to my carefully chosen location a short subway ride from the nation’s capital, where I expected to work. It’s not the weather, albeit leavened by the seasonal things I love (see photo). (The summer is no treasure, either—someone said it is like walking into the breath a very large dog.) Then there’s what I don’t want to lose, such as the good schools—both boys are being treated well, and the youngest has seven years left. There’s also stability, something I never had before. Thirteen years here, twice as long as I’ve lived anywhere, provide part of the package I want to give my children. The community is solid, but also monochrome and often bread pudding bland. Discussion in the neighborhood easily turns to things like garage size, bingo night, and dog poop.4 It is not a bad thing, it’s just not my thing. I have not yet found a community that challenges me to think harder, to learn, to grow, even in impractical ways—compare Cambridge, aptly dubbed “a city surrounded on four sides by reality.” (Note to self: Certainly Washington fits that description, too.)

My conclusion is that this is all wonderful news: That I feel the cold, that I whine of my brain turning to mush, that I perceive the problems. In It’s A Wonderful Life the nuisances of life—the loose newel post knob—became delights when George Bailey saw the light. My discontent reflects that I’m healthy. The climate may not be what I want, but it is fine starting point, and it does ironically carry some fond memories of my warm baby and suicidal sledding. What comes next is up to me and not the rain. As I was before The Big Fall a dozen years ago, I am determined to be more than I am, no matter how cold the sleet, sharp the wind, or bitter the night. And that’s really cool.

1 Some readers have undoubtedly known much colder. No, I don’t need to hear from you. Just go ahead and be smug in your suffering.

2 I exaggerate not: “[F]ormer Dean of Students Archie C. Epps III told The Crimson in reference to a 1977 blizzard that ‘Harvard University will close only for an act of God, such as the end of the world.’” The Day the Sky Fell, June 4, 2003, The Harvard Crimson. That’s not all that’s irksome about Harvard, but it’s a nice example of pigheadedness.

3 Washington is a terrible place for snow. The effect on road safety and driver sanity of seven inches yesterday was that of Boston getting about a foot, or Buffalo getting thirty-seven. The schools are closed for two days, and a one-foot snowfall a few years ago closed them for a week.

4 Amazingly, listserv discussion of the President’s wonderful surprise visit to our elementary school last month was within nanoseconds hijacked by the recurring firefight over people not cleaning up their dog crap. As for bingo—if you knew me, you wouldn’t even ask.

Should We Get a Dog? (Woof?)

January 23, 2011

The author with “Bravo” circa 1974

We are basically cat people.  We have a great cat named Maia (in her mind, she has us) and would like to get another, but a dog or ferret or chinchilla is possible.  (I don’t quite get my fourteen-year-old’s interest in a chinchilla, to me a cute but expensive plush toy—which Maia may think, too.)  I’m cautiously tempted by the dog idea.  I’ve never owned a dog, but I spent enough time with them as a kid to realize it’s a different sort of relationship from a cat or hamster, etc. There must first be consensus on what we do, and I’m not quite sure what my opinion is.  I am not sold on the extra responsibility, expense, and, well, poop.  (I am increasingly convinced that all pets poop.)

There’s no problem with Maia (I note this because she contributes to the blog).  I conditioned her as a kitten to be more more doglike than the average cat.  For example, she comes when called by me, occasionally fetches, and likes more aggressive physical affection than most cats.  If anything she likes me a bit too much and sometimes follows me around the house, biting me if I don’t perform.  If at all, I think she’ll tolerate another pet if she can play with, sleep on, or, at worst, ignore it.  (No offense to Maia, but I’d like an animal with more engaging entertainments than crippling the occasional mouse.  Maia, that’s called “not taking care of your toys.”)

Of the dogs from my past, the most recent was Keesha, an adorable Keeshond puppy I took care of often while living with friends in L.A. and teaching flying.  I was 18.  She went to work with me a number of times and was popular there, though I got in trouble for a couple of slippery messes she dropped in the hangar.  Keeshonden are cute balls of fur kind of like Samoyeds (if you groom them) and affectionate, but not the brightest lights in the kennel.  The breed originated as “watchdogs and rat catchers on barges in Holland.”  They are remarkably pretty despite beginning with this rather humble profession, but I doubt we’d be good about the grooming.

Now, Clyde was a terrier and beagle mix that belonged to my mother’s good friend in San Francisco.  I adored that dog.  He was smart and friendly, and when we moved to Los Angeles he actually came to visit when I was eleven.  We ended up keeping him for a number of weeks, and he was popular with us to the point that his owner finally had to come down to pick him up.  That was actually the year we lived on the grounds of residential mental hospital in Pasadena (yes, in time I’ll write about that remarkable year, which was not at all like Cuckoo’s Nest!).  I think there was some administrative leniency towards me in allowing me to keep him, and I benefitted from the companionship (one has fewer sleepovers while living in a mental hospital).  We eventually got a couple of very nice cats, but it’s not the same.

Webster St.

Webster St. (via Google Street View)

My earliest and most compelling dog memory is Bravo, a standard poodle we sort of inherited from the landlord along with an apartment where we lived our last year in San Francisco, on Webster Street near Union.  I was in the second grade, and I adored that dog. When he ran, he looked hilarious, like a mad curly-haired seesaw. But a standard poodle is a lot of dog for such a thoroughly urban environment, and I bet Bravo was stir crazy.  That may account for his falling into the cliché of trying to bite the mailman and being sent to “live in the country,” which I pray did not mean euthanasia.  He was generally a sweet and adorable dog—you can see in the picture my affection for him—but my mom worried he might turn on me if I made the wrong move, as little kids often do.

There are two iconic Bravo stories that I share because they are funny and because they reveal something about my mom.  It is telling that she would tell them often even though they were embarrassing; she loved to laugh.  The first was the big Thanksgiving dinner she threw for our family, which would have been about ten people including her mother.  She explained that the dinner was a big deal because the family figured this single mom and notoriously awful cook was probably poisoning me.  And so she did the big turkey thing.  Ducking into the kitchen to bring it out like the perfect hostess, she found Bravo with his legs up on the counter and teeth locked into the bird, growling and tugging his prize to the floor.  Now, my mother was a practical, intelligent, and sometimes disingenuous woman, so she trimmed out the tooth marks and served the turkey.  To the guests she explained with a giggle, “Oh, I got a little hungry.”

I’m not sure she ever told that story to them.

The other story was about when she drove me to school one morning, the dog coming along for the ride.  She was not a morning person and often drove me over clutching her coffee and wearing a ratty housecoat or bathrobe and slippers.  Big mistake.  On the way home, Bravo spotted a little dog on the sidewalk whose existence offended him and vaulted over my mother on out the open window.  She said he proceeded to pin the little dog down while barking ferociously.  The owner on the other end of the leash and various bystanders screamed at my mother to do something.  She said she simply froze.  Bravo fortunately tired of chastising the little dog and walked out into the middle of the intersection.  He reared up on his hind legs—a neat trick if you’ve not seen it—and just stood there, slowly turning around and surveying all the commotion.  She finally got him into the car and scurried away with her tail between her legs.  I doubt she ever drove through that neighborhood again.

Maia proofreading

I mention these stories partly because my childhood so heavily affects my interest in having a dog.  But they also influence my desire to provide for the boys while providing a good home for a dog in need.  I know that this is pretty much the last opportunity for them, at 11 and 14, to have a dog as kids.  It’s fun, but also will affect who they become.  It goes without saying that childhood is a formative period.  Each of the small years is to the child uniquely long and transformative, and the memories form much deeper, seeding the foundations in concrete or sand for the life that comes after.  For my kids, I strive and, as time runs out, rush to give them all that I can, including so much that I lacked.  My desire to provide them what I didn’t have in my often chaotic youth won’t decide the refreshingly prosaic question of whether to get a dog, but it makes me take special notice.

Now, really, if I could just find a dog that doesn’t poop.

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