Not since the Oliver Sacks book, The Man Who Mistook His Wife for a Hat, have neurological disorders been as entertaining in their dramatization as in Edward Einhorn's collection of plays, “NEUROfest.” The director-playwright, who credits the original collection of patient vignettes for his inspiration, has succeeded in bringing neurological conditions to life, perhaps even more vividly than can be accomplished within the constraints of a literary format.
The eleven shows, performed off-Broadway in New York City throughout January, formed the first-ever theater festival devoted to neurology. The topics ranged from the mundane – amnesia, aphasia, dementia, and vertigo – to the exotic – synesthesia, Creutzfeldt-Jakob disease (CJD), Tourette, Asperger, and Capgras syndromes. Much to my surprise, the seven plays I saw managed to be not only dead-on accurate, encapsulating the essence of each disorder, but they were also entertaining and provocative. Best of all, they captured the essence of what drew so many of us to neurology in the first place – a fascination with the beautiful, complex nature of the human nervous system.
TOURETTE SYNDROME ON STAGE
In Syndrome, a one-man show by Kirk Wood Bromley, the audience is given a rapid-fire visual tour of Tourette syndrome (TS) in a persuasive performance that covers the character's ongoing struggles – family dinners with his denial-afflicted, tic-riddled father, ineffectual doctor-hunting by his despairing mother, and the contagion of tic-induction while at TS conventions. But he is the real tourist, he says: a tourist in his own body.
Informing the audience that coprolalia is a stereotype shared by only 15 percent of patients, he says: “The inhibitive mechanism in the tourist's brain is constantly malfunctioning, allowing thoughts that you possess yet normally suppress to come charging past the guardrails of the tongue. In a world whose psychological thrust seems to be toward the eradication of inhibitions, the coprolalic tourist and his uncontrollable honesty stand as a warning to us that the blackhole of repression often outshines the sun of honesty.”
Nothing could outshine the ensuing gymnastic performance that left the actor bathed in sweat as he deftly maneuvered through 71 motor tics and a similar succession of verbal and affective tics.
Bromley explained, “I wanted the audience to have a physical sympathetic experience with someone who has Tourette: to laugh and be awed and be entertained by watching and hearing someone struggle with an internal force that is striving to express itself from within.”
CJD – FROM CLINICAL EXPERIENCE
Whereas Bromley was asked to write a play by an actor who had the condition, James Jordan was inspired by a patient who rapidly deteriorated from CJD while on his service. The Case Western Reserve University neurology resident with a BFA in playwriting could not pass on this opportunity. “Neurology-meets-theater is kind of who I am,” he said, “so I wrote something based on all my feelings at the time, and found that I had been storing up lots to say for the past ten years.”
In the 90-minute play CJD, he not only covers the hallmarks of prion diseases, but also underscores the challenges of being a student doctor, giving bad news and working with families. He goes through the neurological examination, head to toe, for those less familiar with the process, curiously managing to get howls of laughter from the row of (non-neurologist) physicians seated directly in front of me: “Anyway, Bill's toes – toes! (We neurologists are fetishists for feet!) They started going up by the end of the first week, which we expected. This is a reflex signifying central nervous system disease. You simply scratch the bottom of the foot, like so, and if the toe goes up, there's disease. It's supposed to curl in…. It's called ‘the Babinski sign’ … That's it, really. Not much of a fetish, I guess … We don't suck on the toes or anything …”
He deciphers a barrage of neurological terms by taking on each component individually, while occasionally breaking into song, piano playing, or bongo thumping.
EPIDEMIC FORM OF APHASIA
Language, both cool and jargoned, is the subject of Einhorn's Linguish, a play in which four strangers are quarantined due to the threat of an epidemic form of aphasia. Each of them loses their ability to speak in their own unique manner; one takes features of Wernicke aphasia (“Amo osculating with you. It's like canarmy.”), another of Broca aphasia (“It must feel like you're in a glass box, able to see and hear others, but unable to contact them.”), another, a transcortical sensory aphasia (“She's turned into a parrot. Michael at least uses his own words. There may not be many of them, and they may not be real words, but at least they're his.”). It is a credit to the author-director that the conversations, replete with neologisms, anomia, mutism, hesitations, and paraphasic errors, are still somehow coherent. The strangers adapt to their circumstances and gradually develop a way of communicating.
AMNESIA: KEEPS THEM GUESSING
Memory is examined differently in Einhorn's Strangers, in which a woman seated next to a man in a doctor's office, asks him why he is there. The man has amnesia and confabulates enough to keep the audience guessing: Who is the patient? By the end, we realize that they are a married couple and the husband neither recognizes his wife, nor is able to remember their marriage. He is aware that he is in a medical facility and when she confronts him, he says: “I'm sorry ma'am; I think you may need some help. I've brought you here, to this place, to introduce you to some people who can help you.”
ASPERGER SYNDROME: A NARRATIVE STORY
The Boy Who Wanted to Be a Robot is introduced to someone who can help him. In this narrative story by Einhorn, a boy with Asperger syndrome is neither able to understand humor, tolerate touch, nor experience emotion. He does, however, like to count: “I like all nutrients that can be divided by nine. Do you want to know all the different types of nutrients?”
He eventually gets his wish (from the Dragon Queen) but only after setting off on a colorful journey enriched with puppets. Like most fairy tales, this reverse Pinocchio story has a happy ending. As the boy transformed to robot says: “If I were to do a quantitative analysis of my current happiness, it would yield a positive result.”
NEUROLOGY AS FODDER FOR THEATER
Why put on a theater festival about neurological conditions? “I am a theater artist first and foremost,” Einhorn said, “so what I wanted to do was to put on good theater. I also wanted it to be interesting theater that made people think about the brain and how it works and also make them aware of the fascinating (and sometimes very sad or scary) aspects of neurology.”
There is certainly no shortage of material from which to draw upon, the playwright and neurologist Dr. Jordan said. “After seeing a very interesting case, I joked with one of my fellow residents that neurology will obviously be a career that will offer a lifetime of meaningful experiences, any one of which could be shared via an artwork whenever the muse strikes.”
EDUCATION A BYPRODUCT OF NEUROFEST
More than just a theatrical experience, NEUROfest also provided an interesting model for educating the public about neurologic conditions. Throughout the month-long series of plays, audience members were invited to seminars moderated by playwrights, directors, neurologists, and leaders of patient advocacy, and support groups.
Many attendees were drawn to the plays because family members or friends were affected by these conditions. Marie Kassai, RN, MPH, who attended the play on CJD, was among them. Her mother, who was diagnosed with CJD in 1991, died within six weeks of first complaining of visual disturbances.
Kassai, an infection control nurse who now volunteers with the CJD Foundation and other patient groups, said, “I think the playwright portrayed the disease accurately but I found the sound effects and the social commentary somewhat disturbing because of my personal experience.” However, she said she was grateful that someone took the time to get the message about the disease out.
Kassai's husband, a funeral director, is also involved in advocacy. Working with the New Jersey State Funeral Director's Association and the CJD Foundation, he works with funeral directors who are afraid to take care of the body affected by CJD.
“Pathologists still refuse to do autopsies, and funeral directors and embalmers refuse to provide the burial services requested by the family,” Kassai said. “Any attempt to alleviate fears is a benefit to all.”
ARTICLE IN BRIEF
- ✓ The producer and playwrights of a theater festival devoted to neurology themes discuss the motivation and thinking behind the portrayal of a wide range of conditions from Tourette syndrome, aphasia, and amnesia to Creutzfeldt-Jakob disease.