The Thing That Ate My Brain (Almost)

The best theatre, like all art, comes from a place where personal expression, talent, and professional training intersect. Last Thursday and Friday, an excellent example of such theatre was staged at the Perishable Theater in Providence. The Thing That Ate My Brain (Almost) is one woman’s account of her experiences with a genetic illness that resulted in a near-terminal brain tumor for her and killed her mother years earlier. It’s a unique, startling, and strangely inspiring performance written and performed by Perishable’s artist-in-residence Amy Budd. The piece includes science fiction-inspired multi-media installations, an MRI chair dance, and a small supporting cast depicting the tumor in question, who goes by the name of Voldemort, and low-budget sci-fi film director Ed Wood.

As a member of the Artist in Residence at Perishable Theater (RAPT) program, thirty-five year old actor Amy Budd has been working on The Thing That Ate My Brain in earnest for several years, but the idea for the piece came to her soon after her disease was diagnosed. Amy has Von Hippel-Lindau (VHL) Syndrome, a disorder caused by a flaw in one gene, also called VHL, that regulates cell growth. She was diagnosed at the age of twenty-eight after suffering from curious symptoms including the loss of feeling in her right arm. During her initial, week-long stay in the hospital, her doctors discovered the brain tumor.

While in the hospital, Amy began a running dialogue with the tumor, talking to it and imagining its replies. The conversation developed, she says, because “I was stuck there by myself a lot of the time…and I couldn’t watch TV, I couldn’t read because the book was too heavy, I couldn’t do anything, so I kind of started talking to the tumor just in my own mind….and imagining what it was going to say back to me.” She readily admits that the imagined scenario was likely influenced by the fact that “they put me on a lot of drugs—there were a lot of narcotic painkillers involved.” There is some dark humor embedded in the conversations; Amy says that while “people expected me to be really freaking out about this situation,” she experienced her illness and hospitalization as, while undeniably painful, also “very strange, and comical.”

Amy’s conversations with her tumor and her reactions to the surreal experience of hospitalization are the foundation for the piece. Previous to her diagnosis, Amy had never even been to the emergency room, and her stays in the hospital struck her as akin to the “inside of a mid-century science fiction movie. It’s like, ‘Hey, they were right about the future, it looks exactly like this.’” Modern-medicine-as-science-fiction is one of the play’s strongest motifs, and led to the eventual inclusion of Ed Wood’s character in the script. Played by Michael LoCicero, this version of Wood interrupts scenes at their emotional height, crassly directs the play’s action, and tries to undermine Amy’s creative decisions. (His impersonal, business-as-usual approach to dealing with such a painful subject will strike anyone who’s ever been in the ER as familiar.)

The core of the play is the conflict between Amy and Voldemort. She named the tumor the summer following her diagnosis while diving into the Harry Potter series: “[The name] Voldemort just made sense. There’s something about Voldemort that’s stagnant and stale.” She draws parallels to Chinese medicine, which explains tumors and related disorders as resulting from stagnating Chi. The mindless, futilely destructive personality of Voldemort developed as Amy tried to make sense of her disease.

The tumor is played to cruel perfection by Sarah Lewis, who Amy says played a large part in shaping the role. Lewis auditioned for the part at the suggestion of director Connie Crawford, who thought that Voldemort should be played by a woman with a similar height and build to Amy, thus giving them “ lots of ways to play with language and identity.” A British transplant, Lewis brought her English sensibility to the character, resulting in the most articulate, dry, aristocratic tumor you’ve ever seen. Of course, Voldemort’s primary feature is sadism. She celebrates the act of destruction while mocking Amy’s attempts to survive and understand her illness and taunting her that, for all her efforts, she is destined to lose.

Luckily, in art and in life, Voldemort is wrong. In April of this year, Amy underwent a surgery that removed the tumor. While she will always suffer from VHL (her motor skills have atrophied further since the last surgery), Amy’s mortality is no longer threatened. As a reflection of this, The Thing That Ate My Brain has no neat conclusion: “I always will [have this disorder], so I wanted to show an ending that wasn’t really clean one way or another,” she explains. “I wanted to show a picture of someone who gets on with their life, which is what most people get to do. That’s what success really looks like….Getting better isn’t about doing something really spectacular, and usually the two options that we see are doing something really spectacular or dying, and the reality is that most people have to go back to work, and while that’s not very glamorous, I think it’s still really special and important.”

 

For more information on Von Hippel-Lindau Syndrome, visit www.vhl.org

The Thing That Ate My Brain (Almost) played at the Perishable Theater (95 Empire St. in downtown Providence) Thursday 9-28 and Friday 9-29.