Penelope closes the door to Ed’s office and takes her regular seat in the chair on the left across from his desk. She keeps her journal open and her pencil in her hand. Ed knows she’ll take notes during their session, for use in all sorts of things—poems, songs, stories. “Do you ever just use them for yourself?” he asked her once.
“All the time, Dr. Ed. That’s why I write them down. The other stuff is auxiliary.”
“Most sixteen-year-olds don’t use the word auxiliary.”
“Most sixteen-year-olds don’t live in institutions.”
“Fair enough.”
She is always reminding him that she is disabled, and he is always forgetting.
Ed met several epileptic patients before Penelope, but their epilepsy was part of a greater diagnosis. Coupled with Down’s or severe retardation, seizures were just one more abnormal behavior in a life where abnormal was ordinary. But Penelope’s only diagnosis is epilepsy. Save for her above-average IQ and her love of old poetry, she is a perfectly normal teenager.
For the first several months of their individual sessions, they focused exclusively on the physical and emotional factors that seemed to predict Penelope’s seizures. Physical: dehydration, lack of sleep, caffeine. Emotional: anxiety, sadness, frustration. Of the physical, they’d tackled dehydration and caffeine—water in place of coffee and soda. She keeps a jug with her most of the time. Regarding sleep, there is nothing they can do. She sleeps in a dormitory with twenty other patients, all mid-to-high-functioning but still noisy and animated through the night. There are no private rooms in Boulder. Sleep deprivation is part of the package.
They’ve tried to work on the emotional pieces, but those are trickier. Penelope has some grasp of the patterns to her anxiety and frustration, but even with most of the stimuli identified, there is no guaranteed way to avoid it. Her parents are her biggest triggers, and packages arrive from them nearly every week. The packages cause anxiety, and their absence causes even more. The girl’s sadness is mostly elusive, arriving and departing without warning. Penelope’s seizures are as frequent as they were before Ed’s arrival.
Today he’ll push something new. Jack Sorenson, a former colleague back in Michigan, recently sent him a paper on a study done with a group of high-functioning epileptics at Howell. Sorenson had designed individual behavioral models that required each patient to engage in valued activities previously avoided due to seizure activity. One patient was prescribed daily bicycle rides (a fond memory from his youth); another was given a job in the institution’s kitchen baking bread (something she’d done regularly for her family before the onset of epilepsy). Engagement in these activities supposedly gave patients the power to reframe and recontextualize their lives. “Nothing to put in the bank yet, but seizure activity is down in all but one case,” Sorenson wrote in his accompanying letter. “Worth a shot on your girl. Let me know how it goes. Still can’t believe you’re way the hell out there in Montana.”
Penelope looks around the office. Sun pours through the windows at Ed’s back, touching her arms and shoulders. He watches her eyes drift from his overfilled bookshelves to the filing cabinets to the wall where he’s hung three of Laura’s earlier paintings, work she did back in Michigan. A portrait of his father painted from a photo: Fred stares just past the frame, his cheeks gone jowly, his blue eyes bounding out of his wrinkled face. A slightly abstract painting of Ed’s mother at the stove in his childhood kitchen. The last is his favorite—the great oceanic shore of Lake Michigan where his family has a cabin. Simple lines focused more on the dunes and pebbles than the water. He grew up there, spent his summers wind-chapped and sunburned, hair bleached blond and arms sinewy as rope from all the swimming. He and Laura honeymooned there, too. Laura painted the shore for him as a wedding present.
“Who are the people in the paintings?” Penelope asked the first time she came for a session.
“My parents.”
“And the ocean?”
“No, Lake Michigan. It looks like the ocean, though, doesn’t it? Have you been?”
“I went to Washington a few times before the seizures started. After that, my parents deemed me unfit to travel. They still go out pretty regularly with Genevieve.”
“Your sister. Tell me about her.”
“She’s the perfect one.”
Ed wishes he could send Penelope to the ocean as part of her treatment. Penelope needs to partake in activities that were a regular part of her life before epilepsy, he’d tell her parents. You must take her to the coast.
He has tried to convince her parents to become an active part of her therapy, but they are quick to dismiss him on the phone, and his letters mostly go unanswered. When he does get one of her parents to talk, it’s always: “You’re the doctor. Whatever you think is best. We’re swamped right now. Tell Penelope a package is on its way.” He can’t get them to visit, let alone take her to the ocean.
“What are some things you used to do before you started having seizures?”
Ed watches Penelope write the question in her journal. She stares at it for a while before she speaks. “I went to school. I played volleyball. I rode my bike. I walked to the library and checked out books. I ate lunch in my English teacher’s room and talked to her about literature. I drove my dad’s car once. I went roller-skating. There’s more, but that’s all I can think of right now. Why?”
“We’re going to bring some of those back.”
“Again: Why?”
“It’s a new therapeutic model. It’s supposed to interrupt your brain, confuse it into thinking it isn’t epileptic.” Penelope is the only patient of Ed’s who can understand the explanations of her treatment. The others live in the concrete world of stimuli and response, little more.
“I like the idea of tricking my brain.”
They both smile, and Ed looks at the list he’s written down as Penelope talked. Much of it is impossible within the confines of the institution—school, libraries, cars, roller-skating—but he can get her a bike. That’s easy enough. She needs something intellectual, too, something to feed the school piece she so clearly misses—not the peers but the coursework. She’s walked into this perfectly, just as he thought she would.
“What about that reading group I suggested?” he asks. “For the higher-functioning patients? It’d get you talking about literature again. Granted, it wouldn’t be with nerd friends, but it might be an even better trick on your brain if you became a teacher.” His left hand worries a new stone in his pocket.
Penelope looks at her lap, and Ed sees her again in that first individual session, after they talked about the paintings and her perfect sister.
“Can you tell me about your first seizure?” he’d asked.
“I was thirteen, and we were all at our family cabin up on the Flathead. Gen and I slept on the sofa bed, my parents in the loft.” She’d pointed to the lake painting. “Flathead isn’t that big, but it’s beautiful. Anyway, Gen woke up to my thrashing in the middle of the night and started shouting for Mom and Dad. They gathered around me. Supposedly, my mother said, ‘Put a wooden spoon in her mouth or she’ll bite off her tongue,’ but the seizure passed before anyone did anything. They say I was awake for an hour before I was really awake. The first thing I remember is the blankets—how thick they felt. And then the wetness. I pulled the covers back to see that I’d pissed myself. I started stripping the bed. My mother tried to stop me, but I wouldn’t let her, so Gen helped instead, and we got everything off, and my father hauled the mattress to the porch, where he hosed it down. I took a long bath, and then they loaded me in the car and took me to the hospital. And that’s it—the day Penelope Gatson got sick.”
“Not the word I’d choose.”
“It doesn’t matter what word you choose, Doctor. The definition is the same.”
He expects her to show the same resignation now. Instead, she asks, “What would I teach them?”
“Shorter pieces, relatively simple. Other than that, whatever you want.”
Ed imagines her paging through the library of her mind, all the titles and authors. He doesn’t read the way she does, for pleasure and temporary transcendence. Words for him are simply tools to explain theories and studies and policy.
“Maybe I’ll start with Keats,” she says.
Skinner spoke of Keats, Ed remembers, quoting him in the discussion of “Reporting Things Felt.” It’s a nice omen, but Ed knows it doesn’t matter where Penelope starts; it matters only that she does. The girl is on her fourth medication, and so far it’s proving as ineffective as the first three. The existing behavioral modifications don’t seem to be performing much better. And as much as Ed believes Penelope belongs outside the walls of the institution, he knows he can’t deliver her there without marked improvement. Societal expectations fall on the side of her parents: Epileptics belong with the disabled.
These are the exact expectations he’s trying to break down for the benefit of all his patients, but the injustice of institutionalization is especially pronounced in someone like Penelope, whose brain is brilliant whenever it isn’t seizing.
“That’s not what they see, though,” she said to him once. “It doesn’t matter how brilliant I can be. Once someone sees me fall on the ground and piss myself, I’m an imbecile, and once an imbecile . . .”
She had a seizure in the school library her freshman year of high school and has been at Boulder ever since.
He says, “How about you start next Monday? I’ll supply the students. You provide the reading.”
Penelope agrees, her face clouded with the same concentration she shows when she’s writing lyrics for the hallways’ sounds. Maybe just thinking about teaching a piece of literature to a group of disabled people will be enough to reorient her brain.
— —
After Penelope leaves, Ed calls Taylor Dean, the director of state institutions. He was the one who picked Ed up from the airport and first introduced him to Boulder. Ed remembers that drive clearly, how taken he’d been with the beauty outside the car’s windows.
“You stop seeing it after a while,” Dean said. “Here’s the thing, Ed—all right if I call you Ed? Well, here’s the thing. Boulder’s up to its goddamned tits in negative PR right now. Don’t know how much you’ve heard out there in Michigan, but it’s a real mess. And my superintendent just walked out. You know that much, at least. That’s why you’re here. We need someone with your expertise, Ed. You’re walking into a goddamned predicament, but it’s one you can save. That’s the thing—there’s a place for heroics here, and if you’re into that, then you’re our guy. But heroes have to wade through shit, you know? So if you’re squeamish around shit—and I’m talking both kinds here, the kind you deal with on paper and the kind you fucking step in—well, then this probably ain’t gonna work.”
Lots of shit.
Dean’s secretary patches Ed through.
“Edmund! How’s my favorite superintendent?”
“Not great, Taylor.”
“Ah, come on, Ed. I know you’re calling to complain. At least give me a moment to pretend otherwise. I know you have some good news for me somewhere.”
“My wife is starting an art class, and one of our high-functioning patients is starting a reading group.”
“There we go! See? That’s the magic I hired you for.”
“Really? I’m using a patient and my own wife to deliver services we should be paying professionals for. I need more staff, Dean. We’re still at twenty-five percent.”
“I’m working it from every angle, Ed, but I’ve got to tell you there’s just no spare money. We’ll try again next session, but for now we have to work with what we have.”
“That’s not what you promised when I took the job.”
“Don’t pretend you didn’t know how government works, Ed. You took the job knowing damn well how full of shit I am.”
Ed smiles. He both hates and loves Taylor Dean. The man is a bastard and full of bullshit that somehow mixes well with his candor. He laughed like a salesman that first day, willing to paint himself any color to get Ed to sign. But then in the next breath, he led Ed down to the former superintendent’s office, talking about the staffing shortage. “Inadequate pay, long hours, remote location. Nothing to do about the location, but we’re working on the other two. Every legislative session, we see another appropriations bill go through, and then we see it slashed by the governor. It’s been tough to make the top of his list of priorities, but we have his ear now. Get enough bad press, and your demands finally get heard.” Ed didn’t know what he was talking about. “You haven’t heard, then. Might as well get that piece done with.” Dean pointed to a thick manila folder sitting on the desk. “Not enough to make national news, but we’ve been dragged across the state. This is what you’re up against.”
Ed read about the nine patients who had died at the Boulder River School and Hospital over the previous year. A thirteen-year-old boy prone to seizures had been left alone in a bathtub, where he drowned. Another woman had drowned in the Boulder River. A bedridden patient died in surgery after swallowing a spoon that another patient had shoved down her throat. The article quoted the former superintendent saying, “The woman was being fed by another patient because she might otherwise not have been fed at all.”
A mute retarded boy was found hiding under one of the buildings after he’d been missing for over forty-eight hours. He’d survived, at least, but not without extreme trauma.
Stories reported the strikes Dean had mentioned. The National Guard had been called in to staff the hospital during one of them—using soldiers as aides made patients prisoners of a war they didn’t understand.
Dean had known what he was doing. Even if Ed had gone directly to the airport, he’d have known Boulder’s stories and taken them back with him to Howell, which felt utopic in contrast. He’d take the woman in the river and the boy in the bath, the patient on the surgical table, bleeding around a well-intentioned spoon. He’d sit in the dark with that mute boy, two days of hunger gnawing his stomach. He’d take them, and he’d want to save them.
Dean is a bastard and a bullshitter and also pretty damn smart.
“You’ve got to get me something, Dean. If you want to keep the current news trends, you better get me more money.”
“Ooh, making threats now, Dr. Malinowski?”
“I’m not making threats, Dean. But I’m not making guarantees, either. I can’t stop every potential accident myself.”
“Fair enough. I’ll see what I can do.”
It’s essentially the same conversation they have every time Ed calls. He likes to think Dean actually does something afterward—takes a meeting with the governor, writes a memo, contacts a few senators—but Ed knows he just hangs up, rubs his face, and gets back to work. Warm Springs is even worse off than Boulder. And the state prisons aren’t much better. They’re all under Dean’s jurisdiction.
The Montana legislature meets every other year, and Ed missed the ’71 meeting, too overwhelmed with his new world to make time for policy. But he’ll be ready next time. He’ll bring patients to testify. He’ll produce success story after success story of former patients living healthy lives outside this institution, and he’ll do what he was hired to do—fix this place. Change it.