Reaching Down the Rabbit Hole (10 page)

“Doctor, she can’t see! Oh my God, she’s blind, she can’t see!
Dios.”

That’s the first red flag: Why is her mother speaking for her and why is the girl so calm?

“When did it start?”

“When I came over this morning to pick up the baby. She told me she couldn’t see.”

“It would be good if I could hear what happened from Lucinda. How about it, Lucinda, what exactly happened?”

“I don’t know . . . I’m blind. Isn’t that enough?”

“I know it must be frustrating to tell your story over and over to every doctor who comes in, but it’s important that I hear the details so that we can get your vision back.”

“I can’t see anything. How would you feel if you were blind? Tell me that, okay? It’s like I’m blind.”

“Are you blind in both eyes?”

“That’s what being blind means, doesn’t it?”

“What were you doing when it started?”

“Nothing.”

“Can you see my hand in front of your face?”

“Nope.”

“Okay, let me hold your arm and get you up to see how you walk.”

I ease her off the gurney, and her feet hit the ground naturally. Without being asked, she makes a left turn and heads for the wall and bumps into it at full stride, but manages to stick her belly out just before hitting, so that neither her head nor knees make any contact. Even before this, I was thinking,
Ho boy!
Now I’m thinking,
Oy, vey!

I help her back onto the gurney.

“Let’s try some other tests. Follow my finger.” She stares blankly ahead as I move my finger back and forth. I pull a small mirror out of my bag, and move it from left to right in front of her face about a foot away. Her eyes follow their own images in the mirror. It’s gimmicky, like the $100 bill trick, but seeing eyes almost always follow the mirror. Elliott has his own unfortunate variant: he will take a Post-it note, and in small letters write
GO FUCK YOURSELF
on it, and then stick it on his forehead while he interviews the patient.

“You know,” I say to her, “I think you
can
see but for some reason, maybe one you don’t want to talk about now, you are just upset or distracted, and are shutting down your vision.”

“Well, you’re the crazy one, so screw you.”

Oy, vey
, indeed.

“I’m not saying you are crazy, just that something is bothering your brain in a way that is beyond your control.”

Her mother blurts out, “So what are you going to do about it? I can’t take her home like this!” Hands are waving all over the room as the mother begins to pace alongside the stretcher, invoking the gods and the prophets at a high pitch. The temperature seems to be rising. I need to leave for a few minutes to cool off.

That’s the extent of my plan.

Nomenclature:
Hysteria, psychosomatic
, and
pseudoseizure
are OUT. Neurologists still use these words all of the time, just not in front of patients and their families. Other words we take pains to avoid are
psychiatric
and
psychiatrist
. People tend to hear these as
crazy
and
shrink
, and this rarely goes over well with anyone. Terms that are IN include:
conversion disorder
instead of
hysteria, functional
instead of
psychosomatic
(the two are not equivalent in any case), and
psychological non-epileptic seizure—
or P-NES (I kid you not)—instead of
pseudoseizure
, as in, “This lady has a P-NES.” That’s now a term of the art. It was coined either by someone with a very devious sense of humor, or no sense at all.

Susanna B is a nineteen-year-old woman from a devout Pentecostal family living in Plaistow, New Hampshire. She has just started nursing school. She is surrounded by five family members, all seated around her bed, including a hulking brother who has taken the lone easy chair, is fiddling on his laptop, and never once looks up from the screen.

As I rush into the room with the residents, Susanna’s arms are shaking, her whole body is shaking. Clearly this is a lovely young woman, but just as obviously, she’s in distress. She is fluttering her eyelids at about twice per second, her eyeballs are rolled upward, and her neck is arched backward.

“Susanna!” I say to her. “I’m Dr. Ropper. Can you hear me?”

Her violent movements continue, and her mother eventually stands up and leans over the side of her bed, getting her face as close to mine as she can, and says, “Why aren’t you stopping this? We’ve been here for hours, and we are going to call the patient-care representative. This is unacceptable. We have a lawyer we can talk to.”

“You’ll have to give me some time to sort this out. It might help
me if I could examine her without so many people in the room. Would you mind giving me a few moments alone with her?”

“No way! We’re not leaving her alone. Who knows what might happen? She’s a virgin, you know.”

Wow! That is not high on my list of diagnostic questions, but it raises an entirely new concern. I want them out because this exotic motor performance is characteristic of a pseudoseizure, undoubtedly triggered by the unnerving family dynamic. The quickest way to stop it, I’m convinced, is to send the audience out to the lobby. The neck and back arching, in particular, are not characteristic of most epileptic seizures. Rapid eye blinking can be part of a true seizure, but the way she’s fluttering her eyelids suggests otherwise. When the spell finally stops, I speak to her, and find that she is naturally calm, soft-spoken, and quite polite. She knows that the spells are happening, but has no control over them. They were occurring up to several times an hour prior to her admission, and have become totally disabling over the last several days.

From dribs and drabs I pick up from the family, I find out that she represents a great hope for the entire clan. Everything is riding on her success, and they make this expectation very clear at the young woman’s bedside. The virginity thing comes up again for no apparent reason, and it gives me the creeps. This is one of the most controlling families I’ve ever seen.

“Susanna, these are not epileptic seizures. They usually come from . . .”

“What are you saying, Doctor?” The mother again. “We’d like someone else to see her immediately, and if they don’t, we will be speaking to people who can make that happen.”

“As I was saying, Susanna, it is very important to start by making the correct diagnosis. If we felt that this was an epileptic problem, it would be treated very aggressively with medicines for seizures, but it is not. Somehow, this pattern of motor behavior has gotten into your head, and taken on a life of its own. After a while, movements like
this seem to appear without you willing them. Knowing this is very powerful, since it opens up some ways of unlearning the movements, and eventually getting rid of them by retraining the mind.”

She tells me that the spells come out of nowhere, have no clear trigger, continue for days, sometimes lasting a minute, other times up to an hour, then suddenly go away. It is very telling, however, that they do not interrupt her sleep, and the video monitor attached to her continuous EEG recording will confirm it. The spells exhaust her, but she lacks any insight into their character. The family gets more and more aggressive, and on two occasions I’m on the verge of offering to transfer her to another hospital, particularly when they suggest they might sue me for malpractice. This is one of the few times that I feel more anger than sympathy toward an anguished family. I take the virgin business, coming up so repeatedly, to be both an admission and a warning: we know that childhood sexual abuse is closely connected to these types of dissociative states, and they are saying, “Don’t you dare go there.” I’m not going to bother.

Elliott is good enough to come up and try some relaxation exercises with her when the family is not around. He would like to use hypnosis, but there’s no way he would be able to get away with it without informed consent. On the third day she is able to whisper and communicate even during the violent shaking and eye-fluttering spells. In between spells, her word choice and mental clarity reveal her to be a very bright and well-read person. Apparently, Elliott tells me, there had been no traumatic episodes in her life, no suicide attempts, no peculiar or borderline behavior, and no family history of psychiatric disease, at least none that anyone will acknowledge. But she’s clearly sheltered, if not sequestered in an unnatural way.

The spells stop on the fourth day, and we send her home over the forceful protests of the family that there had been no resolution. They refuse to accept my diagnosis of conversion disorder. I don’t hear from them for about five months, when she returns with the same problem, to us no less, requiring another three-day hospitalization.

The Brits call this sort of thing Functional Neurological Symptoms, or FNS, the psychiatrists call it conversion disorder, and almost everyone else just calls it hysteria. There are three generally acknowledged, albeit uncodified, strategies for dealing with it. The Irish strategy is the most emphatic, and is epitomized by Matt O’Keefe, with whom I rounded a few years back on a stint in Ireland.

“What are you going to do?” I asked him about a young woman with pseudoseizures.

“What am I going to
do
?” he said. “I’ll tell you what I’m goin’ to
do
. I’m going to get her,
and
her family,
and
her husband,
and
the children, and even the feckin’
dog
in a room, and tell ’em that they’re wasting my feckin’ time. I want ’em all to hear it so that there is enough feckin’ shame and guilt there that it’ll keep her the feck away from me. It might not cure her, but so what? As long as I get rid of them.” This approach has its adherents even on these shores. It is an approach that Elliott aspires to, as he often tells me, but can never quite marshal the umbrage, the nerve, or a sufficiently convincing accent, to pull off.

The English strategy is less caustic, and can best be summarized by a popular slogan of World War II vintage currently enjoying a revival: “Keep Calm and Carry On.” It is dry, not overly explanatory, not psychological, and does not blame the patient: “Yes, you have something,” it says. “This is what it is [insert technical term here], but we will not be expending our time or a psychiatrist’s time on it. You will have to deal with it.”

Predictably, the American strategy holds no one accountable, involves a brain-centered euphemistic explanation coupled with some touchy-feely stuff, and ends with a recommendation for a therapeutic program that, very often, the patient will ignore. In its abdication of responsibility, motivated by the fear of a lawsuit, it closely mirrors the beginning of the end of a doomed relationship: “It’s not you,
it’s . . . no wait, it’s not me, either. It just is what it is.” Not surprisingly, estimates of recurrence of symptoms range from a half to two-thirds of all cases, making this one of the most common conditions that a neurologist will face, again and again.