People who don’t have schizophrenia can struggle to understand how frightening some of the disease’s symptoms – which include hallucinations, delusions and disordered thoughts – can be. Here I recommend several excellent and creative resources to help bridge that gap.
1. In “The Origin of Fear”, Inez Holger describes living with paranoid schizophrenia in fresh, vivid terms that combine optimism with unfailing honesty. Published last fall in the Bellevue Literary Review, a slightly different version of the essay was just reprinted in Utne Reader.
Excerpt from “The Origin of Fear”:
“Just how do you explain to anyone, even friendly girls with chignons, that something wispy and curling is crawling beneath your skin?
As if those invisible intruders weren’t enough, I could not understand my clock anymore. Little arrows pointed to numbers, like three and five, or eleven and six, and I had a vague feeling I should do something, but I had no idea what. Go to class, go to bed, go to eat? But to get to class I had to go down the stairs, and the stairs were revolving the way they do in spy flicks after the hero gets poisoned. Everything in his line of vision swirls around until he passes out and hits the floor, but I didn’t pass out. I groped for the floor with my foot and clung to the handrail. Everywhere I went, whether to class or to bed, a ruckus throbbed in my head. Shadowy images of helpless victims in guillotines snapped in my mind.”
2. Elyn Saks was class valedictorian at Vanderbilt, received a master’s degree from Oxford, and graduated from Yale Law School before becoming a prominent legal scholar at the University of Southern California. Notable accomplishments for anyone, but as Saks revealed in her memoir The Center Cannot Hold: My Journey through Madness (Hyperion Books, 2007), she achieved them while enduring psychotic delusions and other symptoms of paranoid schizophrenia.
Published to general acclaim, The Center Cannot Hold counters the stereotype of the schizophrenia patient as a violent person doomed to a life of misery. Saks also reveals how institutions mistreat patients with serious mental illness. Highly recommended.
Excerpt from The Center Cannot Hold: My Journey Through Madness:
“I screamed at the top of my lungs and struggled against the group of hands pinning me down, but I was no match for them, and soon the hands were fastened tight. Then it got worse, since apparently binding my arms and legs wasn’t enough. They arranged a net over me – an actual net – from the top at my neck to the bottom at my ankles, covering my legs, my torso, my chest. And then they pulled it snug at the four corners. I couldn’t move at all, and felt like all the breath was leaving my body.
“I can’t breathe! I can’t breathe!” I cried.
“Yes, you can,” said the voices in unison. They were standing over me, watching. I continued to gasp and beg, and eventually they loosened the net somewhat, and I could actually inhale. (I later learned that a hundred or so people die each year in the U.S. while being put or kept in restraints.)”
3. Here’s a slideshow simulating what a person with untreated schizophrenia hears and sees. NPR created the slideshow from a simulation that Janssen Pharmaceutica produced with input from schizophrenia patients. Read the NPR story about the simulation here.
Turn up your sound to hear the voices.
4. Henry’s Demons: Living With Schizophrenia, A Father And Son’s Story. Simon and Schuster, released February 1. War reporter Patrick Cockburn and 29-year-old son Henry alternate narratives to describe Henry’s multiple hospitalizations and gradual recovery from schizophrenia. Unlike Elyn Saks and Inez Holger, Henry’s hallucinations are associated with nature — wind, animals and trees speak to him, and although they order him to behave in ways that endanger his life, he’s loathe to completely give them up. I haven’t read the book yet, but both The New York Times and The Guardian give it solid reviews. Read The Guardian’s review and interview of the authors here.
Please share your own resources and insights on what it’s like to have schizophrenia.